Science.gov

Sample records for cancer survivorship care

  1. Your cancer survivorship care plan

    MedlinePlus

    ... ency/patientinstructions/000822.htm Your cancer survivorship care plan To use the sharing features on this page, ... get one. What Is a Cancer Survivorship Care Plan? A cancer survivorship care plan is a document ...

  2. Coping with Cancer - Survivorship Care for Children

    Cancer.gov

    Survivorship care for children who have been treated for cancer is important. Get your child's treatment summary, survivorship plan, and recommendation on follow-up care clinics. Learn about long-term and late effects.

  3. Survivorship and Supportive Care - Cancer Currents Blog

    Cancer.gov

    A catalog of posts from NCI’s Cancer Currents blog on research related to survivorship and supportive care. Includes posts on the physical, psychosocial, and economic issues faced by cancer survivors and their caregivers.

  4. Cancer Survivorship for Primary Care Annotated Bibliography.

    PubMed

    Westfall, Matthew Y; Overholser, Linda; Zittleman, Linda; Westfall, John M

    2015-06-01

    Long-term cancer survivorship care is a relatively new and rapidly advancing field of research. Increasing cancer survivorship rates have created a huge population of long-term cancer survivors whose cancer-specific needs challenge healthcare infrastructure and highlight a significant deficit of knowledge and guidelines in transitional care from treatment to normalcy/prolonged survivorship. As the paradigm of cancer care has changed from a fixation on the curative to the maintenance on long-term overall quality of life, so to, has the delineation of responsibility between oncologists and primary care physicians (PCPs). As more patients enjoy long-term survival, PCPs play a more comprehensive role in cancer care following acute treatment. To this end, this annotated bibliography was written to provide PCPs and other readers with an up-to-date and robust base of knowledge on long-term cancer survivorship, including definitions and epidemiological information as well as specific considerations and recommendations on physical, psychosocial, sexual, and comorbidity needs of survivors. Additionally, significant information is included on survivorship care, specifically Survivorship Care Plans (SPCs) and their evolution, utilization by oncologists and PCPs, and current gaps, as well as an introduction to patient navigation programs. Given rapid advancements in cancer research, this bibliography is meant to serve as current baseline reference outlining the state of the science.

  5. Understanding Fragmentation of Prostate Cancer Survivorship Care

    PubMed Central

    Skolarus, Ted A.; Zhang, Yun; Hollenbeck, Brent K.

    2016-01-01

    BACKGROUND Cancer survivors are particularly prone to the effects of a fragmented health care delivery system. The implications of fragmented cancer care across providers likely include greater spending and worse quality of care. For this reason, the authors measured relations between increasing fragmentation of cancer care, expenditures, and quality of care among prostate cancer survivors. METHODS A total of 67,736 patients diagnosed with prostate cancer between 1992 and 2005 were identified using Surveillance, Epidemiology, and End Results (SEER)-Medicare data. Using the Herfindahl-Hirschman Index and a measure of the average number of prostate cancer providers over time, patients were sorted into 3 fragmentation groups (low, intermediate, and high). The authors then examined annual per capita survivorship expenditures and a measure of quality (ie, repetitive prostate-specific antigen [PSA] testing within 30 days) according to their fragmentation exposure using multinomial logistic regression. RESULTS Patients with highly fragmented cancer care tended to be younger, white, and of higher socioeconomic status (all P < .001). Prostate cancer survivorship interventions were most common among patients with the highest fragmentation of care across providers (P < .001). After adjustment for clinical characteristics and prostate cancer survivorship interventions, higher degrees of fragmentation continued to be associated with repetitive PSA testing (13.6% for high vs 7.0% for low fragmentation; P < .001) and greater spending, particularly among patients not treated with androgen deprivation therapy. CONCLUSIONS Fragmented prostate cancer survivorship care is expensive and associated with potentially unnecessary services. Efforts to improve care coordination via current policy initiatives, electronic medical records, and the implementation of cancer survivorship tools may help to decrease fragmentation of care and mitigate downstream consequences for prostate cancer

  6. Models of cancer survivorship health care: moving forward.

    PubMed

    Oeffinger, Kevin C; Argenbright, Keith E; Levitt, Gill A; McCabe, Mary S; Anderson, Paula R; Berry, Emily; Maher, Jane; Merrill, Janette; Wollins, Dana S

    2014-01-01

    The population of cancer survivors in the United States and worldwide is rapidly increasing. Many survivors will develop health conditions as a direct or indirect consequence of their cancer therapy. Thus, models to deliver high-quality care for cancer survivors are evolving. We provide examples of three different models of survivorship care from a cancer center, a community setting, and a country-wide health care system, followed by a description of the ASCO Cancer Survivorship Compendium, a tool to help providers understand the various models of survivorship care available and integrate survivorship care into their practices in a way that fits their unique needs.

  7. Implementing a survivorship care plan for patients with breast cancer.

    PubMed

    Miller, Rita

    2008-06-01

    The growing number of cancer survivors challenges healthcare organizations to develop programs that support survivors' transition from active treatments to survivorship care. Many individuals and families continue to face complicated care issues resulting from cancer diagnosis and side effects long after completion of their treatments. This article describes a model of a survivorship care plan, Cancer Treatment Summary and Follow-Up Care Plan, piloted in an outpatient clinical setting in a community hospital for patients with breast cancer. The plan can be expanded to include other cancer types. The intent of the survivorship care plan is to strengthen the care connections and coordination of services for survivors of breast cancer to ensure that continuing care needs are met during the survivorship phase of the cancer trajectory. The survivorship care plan is a unique opportunity for oncology nurses to be catalysts for the interdisciplinary interactions that are required to develop survivorship care plans and to implement a change in oncology nursing practice. The intervention shifts the paradigm of cancer survivorship care from an acute care medical model to a wellness model for cancer survivors in the clinical setting.

  8. Models of Cancer Survivorship Care for Adolescents and Young Adults

    PubMed Central

    Kinahan, Karen E.; Sanford, Stacy; Sadak, Karim T.; Salsman, John M.; Danner-Koptik, Karina; Didwania, Aarati

    2017-01-01

    Objectives To review the literature on adolescent and young adult (AYA) oncology, discuss survivorship models of care, and focus on the unique needs of AYA patients with transition of care from treatment to survivorship. Data Sources Peer-reviewed literature, workshop summaries, clinical practice guidelines. Conclusion Advancements have been made for AYAs with regard to identifying risk factors from cancer treatment and the need for ongoing follow-up care. Survivors face several unique care transitions. Several models of survivorship care are available for AYAs. Implications for Nursing Practice The responsibilities of survivorship care for AYA patients fall on clinical providers, researchers, the government, advocacy groups as well as the survivors and families themselves. Nurses must remain cognizant and educated on AYA survivorship issues. PMID:26210203

  9. Patient Satisfaction With Breast and Colorectal Cancer Survivorship Care Plans

    PubMed Central

    Sprague, Brian L.; Dittus, Kim L.; Pace, Claire M.; Dulko, Dorothy; Pollack, Lori A.; Hawkins, Nikki A.; Geller, Berta M.

    2015-01-01

    Cancer survivors face several challenges following the completion of active treatment, including uncertainty about late effects of treatment and confusion about coordination of follow-up care. The authors evaluated patient satisfaction with personalized survivorship care plans designed to clarify those issues. The authors enrolled 48 patients with breast cancer and 10 patients with colorectal cancer who had completed treatment in the previous two months from an urban academic medical center and a rural community hospital. Patient satisfaction with the care plan was assessed by telephone interview. Overall, about 80% of patients were very or completely satisfied with the care plan, and 90% or more agreed that it was useful, it was easy to understand, and the length was appropriate. Most patients reported that the care plan was very or critically important to understanding an array of survivorship issues. However, only about half felt that it helped them better understand the roles of primary care providers and oncologists in survivorship care. The results provide evidence that patients with cancer find high value in personalized survivorship care plans, but the plans do not eliminate confusion regarding the coordination of follow-up care. Future efforts to improve care plans should focus on better descriptions of how survivorship care will be coordinated. PMID:23722604

  10. A Mobile Breast Cancer Survivorship Care App: Pilot Study.

    PubMed

    Baseman, Janet; Revere, Debra; Baldwin, Laura-Mae

    2017-09-26

    Cancer survivors living in rural areas experience unique challenges due to additional burdens, such as travel and limited access to specialists. Rural survivors of breast cancer have reported poorer outcomes, poorer mental health and physical functioning, and lower-than-average quality of life compared to urban survivors. To explore the feasibility and acceptability of developing a mobile health survivorship care app to facilitate care coordination; support medical, psychosocial, and practical needs; and improve survivors' long-term health outcomes. An interactive prototype app, SmartSurvivor, was developed that included recommended survivorship care plan components. The prototype's feasibility and acceptability were tested by a sample of breast cancer survivors (n=6), primary care providers (n=4), and an oncologist (n=1). Overall, both survivors and providers felt that SmartSurvivor was a potentially valuable tool to support long-term survivorship care plan objectives. Portability, accessibility, and having one place for all contact, treatment, symptom tracking, and medication summaries was highly valued. Our pilot study indicates that SmartSurvivor is a feasible and acceptable approach to meeting survivorship care objectives and the needs of both breast cancer survivors and their health care providers. Exploration of mobile health options for supporting survivorship care plan needs is a promising area of research.

  11. Advancing survivorship care through the National Cancer Survivorship Resource Center: developing American Cancer Society guidelines for primary care providers.

    PubMed

    Cowens-Alvarado, Rebecca; Sharpe, Katherine; Pratt-Chapman, Mandi; Willis, Anne; Gansler, Ted; Ganz, Patricia A; Edge, Stephen B; McCabe, Mary S; Stein, Kevin

    2013-05-01

    The National Cancer Survivorship Resource Center (The Survivorship Center) began in 2010 as a collaboration between the American Cancer Society and the George Washington University Cancer Institute and was funded by the Centers for Disease Control and Prevention. The Survivorship Center aims to improve the overall health and quality of life of posttreatment cancer survivors. One key to addressing the needs of this ever-growing population is to develop clinical follow-up care guidelines that emphasize not only the importance of surveillance for cancer recurrence, but also address the assessment and management of the physical and psychosocial long-term and late effects that may result from having cancer and undergoing cancer treatment as well as highlight the importance of healthy behaviors that can reduce the risk of cancer recurrence, second primary cancers, and other chronic diseases. Currently, The Survivorship Center is coordinating the work of experts in oncology, primary care, and other health care professions to develop follow-up care guidelines for 10 priority cancer sites.

  12. Comparisons of patient and physician expectations for cancer survivorship care.

    PubMed

    Cheung, Winson Y; Neville, Bridget A; Cameron, Danielle B; Cook, E Francis; Earle, Craig C

    2009-05-20

    To compare expectations for cancer survivorship care between patients and their physicians and between primary care providers (PCPs) and oncologists. Survivors and their physicians were surveyed to evaluate for expectations regarding physician participation in primary cancer follow-up, screening for other cancers, general preventive health, and management of comorbidities. Of 992 eligible survivors and 607 physicians surveyed, 535 (54%) and 378 (62%) were assessable, respectively. Among physician respondents, 255 (67%) were PCPs and 123 (33%) were oncologists. Comparing patients with their oncologists, expectations were highly discrepant for screening for cancers other than the index one (agreement rate, 29%), with patients anticipating significantly more oncologist involvement. Between patients and their PCPs, expectations were most incongruent for primary cancer follow-up (agreement rate, 35%), with PCPs indicating they should contribute a much greater part to this aspect of care. Expectations between patients and their PCPs were generally more concordant than between patients and their oncologists. PCPs and oncologists showed high discordances in perceptions of their own roles for primary cancer follow-up, cancer screening, and general preventive health (agreement rates of 3%, 44%, and 51%, respectively). In the case of primary cancer follow-up, both PCPs and oncologists indicated they should carry substantial responsibility for this task. Patients and physicians have discordant expectations with respect to the roles of PCPs and oncologists in cancer survivorship care. Uncertainties around physician roles and responsibilities can lead to deficiencies in care, supporting the need to make survivorship care planning a standard component in cancer management.

  13. An Action Plan for Translating Cancer Survivorship Research Into Care

    PubMed Central

    Smith, Tenbroeck; de Moor, Janet S.; Glasgow, Russell E.; Khoury, Muin J.; Hawkins, Nikki A.; Stein, Kevin D.; Rechis, Ruth; Parry,, Carla; Leach, Corinne R.; Padgett, Lynne; Rowland, Julia H.

    2014-01-01

    To meet the complex needs of a growing number of cancer survivors, it is essential to accelerate the translation of survivorship research into evidence-based interventions and, as appropriate, recommendations for care that may be implemented in a wide variety of settings. Current progress in translating research into care is stymied, with results of many studies un- or underutilized. To better understand this problem and identify strategies to encourage the translation of survivorship research findings into practice, four agencies (American Cancer Society, Centers for Disease Control and Prevention, LIVE STRONG Foundation, National Cancer Institute) hosted a meeting in June, 2012, titled: “Biennial Cancer Survivorship Research Conference: Translating Science to Care.” Meeting participants concluded that accelerating science into care will require a coordinated, collaborative effort by individuals from diverse settings, including researchers and clinicians, survivors and families, public health professionals, and policy makers. This commentary describes an approach stemming from that meeting to facilitate translating research into care by changing the process of conducting research—improving communication, collaboration, evaluation, and feedback through true and ongoing partnerships. We apply the T0-T4 translational process model to survivorship research and provide illustrations of its use. The resultant framework is intended to orient stakeholders to the role of their work in the translational process and facilitate the transdisciplinary collaboration needed to translate basic discoveries into best practices regarding clinical care, self-care/management, and community programs for cancer survivors. Finally, we discuss barriers to implementing translational survivorship science identified at the meeting, along with future directions to accelerate this process. PMID:25249551

  14. An action plan for translating cancer survivorship research into care.

    PubMed

    Alfano, Catherine M; Smith, Tenbroeck; de Moor, Janet S; Glasgow, Russell E; Khoury, Muin J; Hawkins, Nikki A; Stein, Kevin D; Rechis, Ruth; Parry, Carla; Leach, Corinne R; Padgett, Lynne; Rowland, Julia H

    2014-11-01

    To meet the complex needs of a growing number of cancer survivors, it is essential to accelerate the translation of survivorship research into evidence-based interventions and, as appropriate, recommendations for care that may be implemented in a wide variety of settings. Current progress in translating research into care is stymied, with results of many studies un- or underutilized. To better understand this problem and identify strategies to encourage the translation of survivorship research findings into practice, four agencies (American Cancer Society, Centers for Disease Control and Prevention, LIVE STRONG: Foundation, National Cancer Institute) hosted a meeting in June, 2012, titled: "Biennial Cancer Survivorship Research Conference: Translating Science to Care." Meeting participants concluded that accelerating science into care will require a coordinated, collaborative effort by individuals from diverse settings, including researchers and clinicians, survivors and families, public health professionals, and policy makers. This commentary describes an approach stemming from that meeting to facilitate translating research into care by changing the process of conducting research-improving communication, collaboration, evaluation, and feedback through true and ongoing partnerships. We apply the T0-T4 translational process model to survivorship research and provide illustrations of its use. The resultant framework is intended to orient stakeholders to the role of their work in the translational process and facilitate the transdisciplinary collaboration needed to translate basic discoveries into best practices regarding clinical care, self-care/management, and community programs for cancer survivors. Finally, we discuss barriers to implementing translational survivorship science identified at the meeting, along with future directions to accelerate this process. Published by Oxford University Press 2014.

  15. American Cancer Society prostate cancer survivorship care guidelines.

    PubMed

    Skolarus, Ted A; Wolf, Andrew M D; Erb, Nicole L; Brooks, Durado D; Rivers, Brian M; Underwood, Willie; Salner, Andrew L; Zelefsky, Michael J; Aragon-Ching, Jeanny B; Slovin, Susan F; Wittmann, Daniela A; Hoyt, Michael A; Sinibaldi, Victoria J; Chodak, Gerald; Pratt-Chapman, Mandi L; Cowens-Alvarado, Rebecca L

    2014-01-01

    Prostate cancer survivors approach 2.8 million in number and represent 1 in 5 of all cancer survivors in the United States. While guidelines exist for timely treatment and surveillance for recurrent disease, there is limited availability of guidelines that facilitate the provision of posttreatment clinical follow-up care to address the myriad of long-term and late effects that survivors may face. Based on recommendations set forth by a National Cancer Survivorship Resource Center expert panel, the American Cancer Society developed clinical follow-up care guidelines to facilitate the provision of posttreatment care by primary care clinicians. These guidelines were developed using a combined approach of evidence synthesis and expert consensus. Existing guidelines for health promotion, surveillance, and screening for second primary cancers were referenced when available. To promote comprehensive follow-up care and optimal health and quality of life for the posttreatment survivor, the guidelines address health promotion, surveillance for prostate cancer recurrence, screening for second primary cancers, long-term and late effects assessment and management, psychosocial issues, and care coordination among the oncology team, primary care clinicians, and nononcology specialists. A key challenge to the development of these guidelines was the limited availability of published evidence for management of prostate cancer survivors after treatment. Much of the evidence relies on studies with small sample sizes and retrospective analyses of facility-specific and population databases.

  16. American Cancer Society Head and Neck Cancer Survivorship Care Guideline.

    PubMed

    Cohen, Ezra E W; LaMonte, Samuel J; Erb, Nicole L; Beckman, Kerry L; Sadeghi, Nader; Hutcheson, Katherine A; Stubblefield, Michael D; Abbott, Dennis M; Fisher, Penelope S; Stein, Kevin D; Lyman, Gary H; Pratt-Chapman, Mandi L

    2016-05-01

    Answer questions and earn CME/CNE The American Cancer Society Head and Neck Cancer Survivorship Care Guideline was developed to assist primary care clinicians and other health practitioners with the care of head and neck cancer survivors, including monitoring for recurrence, screening for second primary cancers, assessment and management of long-term and late effects, health promotion, and care coordination. A systematic review of the literature was conducted using PubMed through April 2015, and a multidisciplinary expert workgroup with expertise in primary care, dentistry, surgical oncology, medical oncology, radiation oncology, clinical psychology, speech-language pathology, physical medicine and rehabilitation, the patient perspective, and nursing was assembled. While the guideline is based on a systematic review of the current literature, most evidence is not sufficient to warrant a strong recommendation. Therefore, recommendations should be viewed as consensus-based management strategies for assisting patients with physical and psychosocial effects of head and neck cancer and its treatment. CA Cancer J Clin 2016;66:203-239. © 2016 American Cancer Society.

  17. Ethnic disparities in adherence to breast cancer survivorship surveillance care.

    PubMed

    Advani, Pragati S; Ying, Jun; Theriault, Richard; Melhem-Bertrand, Amal; Moulder, Stacy; Bedrosian, Isabelle; Tereffe, Welela; Black, Shon; Pini, Tunghi May; Brewster, Abenaa M

    2014-03-15

    Adherence to guidelines for surveillance mammography and clinic visits is an important component of breast cancer survivorship care. Identifying ethnic disparities in adherence may lead to improved care delivery and outcomes. Records were evaluated for 4535 patients who were treated for stage I, II, or III breast cancer at the University of Texas MD Anderson Cancer Center, Houston, Texas, cancer center between January 1997 and December 2006. Generalized estimating equations and Cox proportional hazards analyses were used to evaluate ethnic differences in missed mammograms and clinic visits up to 4 years of follow-up and the impact of those differences on overall survival. Nonadherence to guidelines for mammography (P = .0002) and clinic visits (P < .0001) increased over time. Hispanic and black patients were more likely to be nonadherent to guidelines for mammography (odds ratio [OR] = 1.35, 95% confidence interval [CI] = 1.10-1.65; OR = 1.36, 95% CI = 1.11-1.66, respectively) and clinic visits (OR = 1.62, 95% CI = 1.27-2.06; OR = 1.45, 95% CI = 1.13-1.86, respectively) than white patients. There was an interaction between Hispanic ethnicity and endocrine therapy on nonadherence to mammography guidelines (P = .001). Nonadherence to mammography and clinic visit guidelines was not associated with overall survival. Withdrawal from breast cancer survivorship care increases over time, and black and Hispanic patients are more likely to be nonadherent. An understanding of the reasons for ethnic disparities in adherence to guidelines for mammography and clinic visits is needed to improve retention in survivorship care. © 2013 American Cancer Society.

  18. Ethnic Disparities in Adherence to Breast Cancer Survivorship Surveillance Care

    PubMed Central

    Advani, Pragati S.; Ying, Jun; Theriault, Richard; Melhem-Bertrand, Amal; Moulder, Stacy; Bedrosian, Isabelle; Tereffe, Welela; Black, Shon; Pini, Tunghi May; Brewster, Abenaa M.

    2014-01-01

    Background Adherence to guidelines for surveillance mammography and clinic visits is an important component of breast cancer survivorship care. Identifying ethnic disparities in adherence may lead to improved care delivery and outcomes. Methods We evaluated records of 4,535 patients treated for stage I, II, or III breast cancer at our cancer center between January 1997 and December 2006. We used generalized estimating equations and Cox proportional hazards analyses to evaluate ethnic differences in missed mammograms and clinic visits up to 4 years of follow-up and the impact of those differences on overall survival. Results Nonadherence to guidelines for mammography (P = .0002) and clinic visits (P < .0001) increased over time. Hispanic and black patients were more likely to be nonadherent to guidelines for mammography (odds ratio [OR] = 1.35, 95% confidence interval [CI] = 1.10 to 1.65], OR = 1.36, 95% CI = 1.11 to 1.66, respectively) and clinic visits (OR = 1.62, 95% CI = 1.27 to 2.06, OR = 1.45, 95% CI = 1.13 to 1.86, respectively) than white patients. There was an interaction between Hispanic ethnicity and endocrine therapy on nonadherence to mammography guidelines (P = .001). Nonadherence to mammography and clinic visit guidelines was not associated with overall survival. Conclusions Withdrawal from breast cancer survivorship care increases over time, and black and Hispanic patients are more likely to be nonadherent. An understanding of the reasons for ethnic disparities in adherence to guidelines for mammography and clinic visits is needed to improve retention in survivorship care. PMID:24258799

  19. Associations among survivorship care plans, experiences of survivorship care, and functioning in older breast cancer survivors: CALGB/Alliance 369901

    PubMed Central

    Luta, Gheorghe; Sheppard, Vanessa; Isaacs, Claudine; Cohen, Harvey J.; Muss, Hyman B.; Yung, Rachel; Clapp, Jonathan D.; Winer, Eric; Hudis, Clifford; Tallarico, Michelle; Wang, Julhy; Barry, William T.; Mandelblatt, Jeanne S.

    2015-01-01

    Purpose Survivorship care plans (SCP) are recommended for all cancer patients and could be especially useful to survivors 65 years and over (“older”). This study examined receipt of SCPs among older breast cancer survivors and whether SCPs were associated with improved patient-reported outcomes. Methods Three hundred and twenty-eight older women diagnosed with invasive, nonmetastatic breast cancer between 2007–2011 were recruited from 78 cooperative-group sites. Participants completed telephone interviews at baseline and 1-year posttreatment. Regression analyses examined SCP receipt (yes/no) and functioning (EORTC-QLQ-C30), cancer worry, and experiences of survivorship care (care coordination, knowledge). Results Only 35 % of women received SCPs. For each 1-year increase in age, there was a 5 % lower odds of receiving an SCP (odds ratio (OR)=0.94, 95 % confidence interval (CI) 0.91–0.98, p=0.007). Besides age, no other factor predicted SCPs. SCP receipt was associated with greater knowledge and understanding of requisite follow-up care (p<0.05); however, functioning was not significantly different among those with vs. without SCPs. Conclusions Receipt of care plans was limited. SCPs improved understanding of breast cancer follow-up care among older survivors, but did not impact functioning one year post-treatment. Implications for Cancer Survivors To impact functioning and salient needs of the growing cohort of older survivors, survivorship care plans likely should be tailored to geriatric-specific issues. To improve functioning, SCP content should expand to include exercise, nutrition, polypharmacy, social support and management of symptom burden from cancer, and other comorbid conditions. To improve follow-up care for cancer survivors, SCPs should delineate shared care roles between oncology and primary care in managing recurrence surveillance, screening, and cancer sequelae. PMID:24917307

  20. Educating Health Care Professionals to Provide Institutional Changes in Cancer Survivorship Care

    PubMed Central

    Economou, Denice; Ferrell, Betty; Uman, Gwen

    2013-01-01

    The Institute of Medicine (IOM) 2006 report, From Cancer Patient to Cancer Survivor: Lost in Transition (In M. Hewitt, S. Greenfield and E. Stovall (Eds.), (pp. 9–186). Washington DC: The National Academies Press, 2006) identifies the key components of care that contribute to quality of life for the cancer survivor. As cancer survivorship care becomes an important part of quality cancer care oncology professionals need education to prepare themselves to provide this care. Survivorship care requires a varied approach depending on the survivor population, treatment regimens and care settings. The goal of this program was to encourage institutional changes that would integrate survivorship care into participating centers. An NCI-funded educational program: Survivorship Education for Quality Cancer Care provided multidiscipline two-person teams an opportunity to gain this important knowledge using a goal-directed, team approach. Educational programs were funded for yearly courses from 2006 to 2009. Survivorship care curriculum was developed using the Quality of Life Model as the core around the IOM recommendations. Baseline data was collected for all participants. Teams were followed-up at 6, 12 and 18 months postcourse for goal achievement and institutional evaluations. Comparison data from baseline to 18 months provided information on the 204 multidiscipline teams that participated over 4 years. Teams attended including administrators, social workers, nurse practitioners, registered nurses, physicians and others. Participating centers included primarily community cancer centers and academic centers followed by pediatric centers, ambulatory/physician offices and free standing cancer centers. Statistically significant changes at p=<0.05 levels were seen by 12 months postcourse related to the effectiveness, receptiveness and comfort of survivorship care in participant settings. Institutional assessments found improvement in seven domains of care that related to

  1. How confident are young adult cancer survivors in managing their survivorship care? A report from the LIVESTRONG™ Survivorship Center of Excellence Network.

    PubMed

    Casillas, Jacqueline; Syrjala, Karen L; Ganz, Patricia A; Hammond, Emy; Marcus, Alfred C; Moss, Kerry M; Crespi, Catherine M; Lu, Peiyun; McCabe, Mary S; Ford, Jennifer S; Jacobs, Linda A; Pucci, Donna; Palmer, Steven C; Termuhlen, Amanda M; Diller, Lisa; Campbell, Marci; Jones, Barbara; Friedman, Debra L

    2011-12-01

    This study examined the association between sociodemographic, cancer treatment, and care delivery factors on young adult cancer survivors' confidence in managing their survivorship care. Survivors aged 18-39 years (n = 376) recruited from the LIVESTRONG™ Survivorship Center of Excellence Network sites completed a survey assessing self-reported receipt of survivorship care planning, expectations of their providers, and confidence in managing their survivorship care. Multivariate logistic regression identified characteristics of those reporting low confidence in managing their survivorship care. Mean age was 28 years; mean interval from diagnosis was 9 ± 8 years. Seventy-one percent reported currently attending an oncology survivorship clinic. Regarding survivorship care planning, 33% did not have copies of their cancer-related medical records, 48% did not have a treatment summary, and 55% had not received a survivorship care plan. Seventy percent identified the oncologist as the most important health care provider for decisions regarding test and treatment decisions while 10% reported using a "shared-care model" involving both primary care providers and oncologists. Forty-one percent were classified as having low confidence in managing survivorship care. In multivariate analysis, low confidence was associated with non-white ethnicity and lack of a survivorship care plan (both p < 0.05). Findings suggest that provision of survivorship care plans for young adult cancer survivors can be used to improve confidence in managing survivorship care, particularly for ethnic minorities. Survivors should consider advocating for receipt of a survivorship care plan as it may facilitate confidence as a consumer of survivorship care.

  2. Learning the landscape: implementation challenges of primary care innovators around cancer survivorship care.

    PubMed

    O'Malley, Denalee; Hudson, Shawna V; Nekhlyudov, Larissa; Howard, Jenna; Rubinstein, Ellen; Lee, Heather S; Overholser, Linda S; Shaw, Amy; Givens, Sarah; Burton, Jay S; Grunfeld, Eva; Parry, Carly; Crabtree, Benjamin F

    2017-02-01

    This study describes the experiences of early implementers of primary care-focused cancer survivorship delivery models. Snowball sampling was used to identify innovators. Twelve participants (five cancer survivorship primary care innovators and seven content experts) attended a working conference focused on cancer survivorship population strategies and primary care transformation. Data included meeting discussion transcripts/field notes, transcribed in-depth innovator interviews, and innovators' summaries of care models. We used a multistep immersion/crystallization analytic approach, guided by a primary care organizational change model. Innovative practice models included: (1) a consultative model in a primary care setting; (2) a primary care physician (PCP)-led, blended consultative/panel-based model in an oncology setting; (3) an oncology nurse navigator in a primary care practice; and (4) two subspecialty models where PCPs in a general medical practice dedicated part of their patient panel to cancer survivors. Implementation challenges included (1) lack of key stakeholder buy-in; (2) practice resources allocated to competing (non-survivorship) change efforts; and (3) competition with higher priority initiatives incentivized by payers. Cancer survivorship delivery models are potentially feasible in primary care; however, significant barriers to widespread implementation exist. Implementation efforts would benefit from increasing the awareness and potential value-add of primary care-focused strategies to address survivors' needs. Current models of primary care-based cancer survivorship care may not be sustainable. Innovative strategies to provide quality care to this growing population of survivors need to be developed and integrated into primary care settings.

  3. Lack of Needs Assessment in Cancer Survivorship Care and Rehabilitation in Hospitals and Primary Care Settings.

    PubMed

    Handberg, Charlotte; Jensen, Charlotte Maria; Maribo, Thomas

    2017-10-01

    Formalized and systematic assessment of survivorship care and rehabilitation needs is prerequisite for ensuring cancer patients sufficient help and support through their cancer trajectory. Patients are often uncertain as to how to express and address their survivorship care and rehabilitation needs, and little is known about specific, unmet needs and the plans necessary to meet them. There is a call for both ensuring survivorship care and rehabilitation for cancer patients in need and further for documenting the specific needs related to the cancer disease and its treatment. Thus the aim of this study was to describe specific survivorship care and rehabilitation needs and plans as stated by patients with cancer at hospitals when diagnosed and when primary care survivorship care and rehabilitation begins. Needs assessment forms from cancer patients at two hospitals and two primary care settings were analyzed. The forms included stated needs and survivorship care and rehabilitation plans. All data were categorized using the International Classification of Functioning, Disability and Health (ICF). Eighty-nine patients at hospitals and 99 in primary care, stated their needs. Around 50% of the patients completed a survivorship care and rehabilitation plan. In total, 666 (mean 7.5) needs were stated by hospital patients and 836 (mean 8.0) by those in primary care. The needs stated were primarily within the ICF component "body functions and structure", and the most frequent needs were (hospitals/primary care) fatigue (57%/67%), reduced muscle strength (55%/67%) and being worried (37%/36%). The results underpin an urgent need for a systematic procedure to assess needs in clinical practice where cancer patients are being left without survivorship care and rehabilitation needs assessment. Gaining knowledge on needs assessment and the detailed description of needs and plans can facilitate targeted interventions. The findings indicate an urgent need to change the practice

  4. Providers' Perspectives of Survivorship Care for Young Adult Survivors of Childhood Cancer.

    PubMed

    Berg, Carla; Stratton, Erin; Esiashvili, Natia; Mertens, Ann; Vanderpool, Robin C

    2016-03-01

    We examined healthcare providers' perceptions of the goals of survivorship care and survivor programs, systems-level barriers and individual patient-level barriers to engaging patients in survivorship care, and potential resources for increasing engagement. In 2012, we recruited 21 healthcare providers of young adult survivors of childhood cancers from a children's hospital and a cancer center in the Southeastern USA to complete telephone-based semi-structured interviews. The sample was 45.95 years old (SD = 7.57) on average, 52.4 % female, and 81.0 % MDs. The major goals of survivorship programs identified were medical care management (e.g., addressing late and long-term effects, providing survivorship care plans (SCPs), assisting in transition of care) and holistic care including addressing psychosocial issues and promoting healthy lifestyles. Systems-level barriers to engagement in survivorship care included limited resources (e.g., time), role confusion (e.g., within cancer centers, from treatment team to survivorship care, role of primary care providers), communication challenges within the medical system (e.g., limited tracking of patients, lack of understanding of the role of survivorship clinic), communication challenges with patients (e.g., setting expectations regarding transition to survivorship care), and lack of insurance coverage. Perceived patient-level factors included psychological barriers (e.g., fear, avoidance), resistance to survivorship care, and physical barriers (e.g., distance from survivorship clinics). Resources to address these barriers included increased access to information, technology-based resources, and ensuring valuable services. There are several systems-level and patient-level barriers to survivorship care, thus requiring multilevel interventions to promote engagement in care among young adult survivors of childhood cancer.

  5. Navigating the Transition From Cancer Care to Primary Care: Assistance of a Survivorship Care Plan.

    PubMed

    Brant, Jeannine M; Blaseg, Karyl; Aders, Kathy; Oliver, Dona; Gray, Evan; Dudley, William N

    2016-11-01

    To examine symptom and quality-of-life (QOL) trajectories in breast cancer and lymphoma survivors enrolled in a survivorship navigation intervention and to explore patient, caregiver, and primary care provider (PCP) satisfaction with receipt of a survivorship care plan (SCP). 
. Prospective, cohort, longitudinal.
. The Billings Clinic, an integrated cancer center in Montana. 
. 67 patients with breast cancer or lymphoma who recently completed cancer treatment, along with 39 of their caregivers and 23 PCPs. 
. Data collection at one, three, and six months by the Functional Assessment of Cancer Therapy-General and satisfaction surveys.
. Symptoms, QOL, and satisfaction with the survivorship navigator and the SCP.
. Symptoms persisted six months following treatment. Symptoms and QOL indicators with worst intensity were energy, sleep, coping, and satisfaction with sex life. Patients with more comorbidities reported worse QOL, telephoned the survivorship navigator more often, and were more satisfied with the SCP. Patients with lymphoma reported higher QOL, but it was not significantly different from patients with breast cancer. Patients were significantly more satisfied than caregivers with the SCP at time 1. PCPs were highly satisfied with the SCP.
. Some symptoms persist, even when cancer treatment has ended. Patients with comorbidities are at higher risk for more severe symptoms and worse QOL and may benefit from ongoing support. SCPs can facilitate patients' transition to primary care following cancer treatment. 
. Healthcare professionals who care for breast cancer survivors need to routinely assess them for the presence of comorbid conditions. Obese breast cancer survivors may benefit from weight reduction interventions to possibly decrease their risk of developing lymphedema and improve their overall health status.

  6. Survivorship conference highlights research for survivor care

    Cancer.gov

    More than 400 leading experts in cancer survivorship convened today for a conference, Cancer Survivorship Research: Translating Science to Care, to focus on such current concerns as how obesity might not have the same effects on all cancer survivors, and

  7. Perceptions of Survivorship Care among Latina Women with Breast Cancer in Los Angeles County.

    PubMed

    Tisnado, Diana M; Mendez-Luck, Carolyn; Metz, Jenifer; Peirce, Katelynn; Montaño, Brian

    2017-03-01

    Cancer "survivorship" is a distinct and important aspect of the cancer experience. More research is needed about survivorship care in underserved populations such as Latinas. This study examined issues of breast cancer survivorship care among Latinas to understand their experiences and needs, to inform the design of future programs. Six English- and six Spanish-language focus groups were conducted, with a nonprobability sample. About 74 Latinas who varied in terms of characteristics including stage, time since diagnosis, and English proficiency were recruited through support groups, health fairs, and promotoras. A semi-structured question guide was used to examine experiences with follow-up care, barriers, and meaning associated with breast cancer survivorship. Results indicate numerous gaps and unmet needs in Latinas' survivorship care experiences, including problems with finances, continuity of care, unmet needs for information, and symptom management. Participants identified sources of support including patient navigators, and assigned both positive and negative meanings to survivorship. This research lays a foundation for future work to develop interventions addressing Latina breast cancer survivors' unmet needs. Recommendations include enhancing peer and professional support services for patients, family, and caregivers. Further work is also needed to promote the implementation of survivorship care plans. © 2016 Wiley Periodicals, Inc.

  8. Barriers and Facilitators to Implementing Cancer Survivorship Care Plans

    PubMed Central

    Dulko, Dorothy; Pace, Claire M.; Dittus, Kim L.; Sprague, Brian L.; Pollack, Lori A.; Hawkins, Nikki A.; Geller, Berta M.

    2015-01-01

    Purpose/Objectives To evaluate the process of survivorship care plan (SCP) completion and to survey oncology staff and primary care physicians (PCPs) regarding challenges of implementing SCPs. Design Descriptive pilot study. Setting Two facilities in Vermont, an urban academic medical center and a rural community academic cancer center. Sample 17 oncology clinical staff created SCPs, 39 PCPs completed surveys, and 58 patients (breast or colorectal cancer) participated in a telephone survey. Methods Using Journey Forward tools, SCPs were created and presented to patients. PCPs received the SCP with a survey assessing its usefulness and barriers to delivery. Oncology staff were interviewed to assess perceived challenges and benefits of SCPs. Qualitative and quantitative data were used to identify challenges to the development and implementation process as well as patient perceptions of the SCP visit. Main Research Variables SCP, healthcare provider perception of barriers to completion and implementation, and patient perception of SCP visit. Findings Oncology staff cited the time required to obtain information for SCPs as a challenge. Completing SCPs 3–6 months after treatment ended was optimal. All participants felt advanced practice professionals should complete and review SCPs with patients. The most common challenge for PCPs to implement SCP recommendations was insufficient knowledge of cancer survivor issues. Most patients found the care plan visit very useful, particularly within six months of diagnosis. Conclusions Creation time may be a barrier to widespread SCP implementation. Cancer survivors find SCPs useful, but PCPs feel insufficient knowledge of cancer survivor issues is a barrier to providing best follow-up care. Incorporating SCPs in electronic medical records may facilitate patient identification, appropriate staff scheduling, and timely SCP creation. Implications for Nursing Oncology nurse practitioners are well positioned to create and deliver

  9. Facilitators of Survivorship Care Among Underserved Breast Cancer Survivors: a Qualitative Study.

    PubMed

    Ustjanauskas, Amy E; Quinn, Gwendolyn P; Pan, Tonya M; Rivera, Maria; Vázquez-Otero, Coralia; Ung, Danielle; Roetzheim, Richard G; Laronga, Christine; Johnson, Kenneth; Norton, Marilyn; Carrizosa, Claudia; Muñoz, Dariana; Goldenstein, Marissa; Nuhaily, Sumayah; Wells, Kristen J

    2016-07-07

    Research investigating facilitators of survivorship care among underserved breast cancer survivors (BCS) is sparse. This study aimed to explore facilitators of survivorship care among underserved BCS within the first 5 years following chemotherapy, radiation, or surgery for breast cancer. In-depth interviews were conducted, using a semi-structured interview guide, with underserved BCS exploring survivorship care experiences. Content analysis of the verbatim transcripts was applied, and results were summarized according to themes related to facilitators of breast cancer survivorship care. Interviews were conducted with 25 BCS. Eight main themes were identified: coordination of care; positive perceptions of health care providers; communication between patient and health care providers; financial and insurance facilitators; information, classes, and programs provided; assistance provided by organizations and health care professionals; transportation facilitators; and job flexibility. This study provides a comprehensive look at facilitators of survivorship care among underserved BCS. BCS endorsed several facilitators of their survivorship care, mainly at the interpersonal, organizational, and societal level. This study adds to the research literature on catalysts of care among underserved BCS. Results from this study are currently being used to inform a patient navigation intervention to facilitate care among this population.

  10. Follow-up after treatment for breast cancer: Practical guide to survivorship care for family physicians.

    PubMed

    Sisler, Jeffrey; Chaput, Genevieve; Sussman, Jonathan; Ozokwelu, Emmanuel

    2016-10-01

    To offer FPs a summary of evidence-based recommendations to guide their follow-up survivorship care of women treated for breast cancer. A literature search was conducted in MEDLINE from 2000 to 2016 using the search words breast cancer, survivorship, follow-up care, aftercare, guidelines, and survivorship care plans, with a focus on review of recent guidelines published by national cancer organizations. Evidence ranges from level I to level III. Survivorship care involves 4 main tasks: surveillance and screening, management of long-term effects, health promotion, and care coordination. Surveillance for recurrence involves only annual mammography, and screening for other cancers should be done according to population guidelines. Management of the long-term effects of cancer and its treatment addresses common issues of pain, fatigue, lymphedema, distress, and medication side effects, as well as longer-term concerns for cardiac and bone health. Health promotion emphasizes the benefits of active lifestyle change in cancer survivors, with an emphasis on physical activity. Survivorship care is enhanced by the involvement of various health professionals and services, and FPs play an important role in care coordination. Family physicians are increasingly the main providers of follow-up care after breast cancer treatment. Breast cancer should be viewed as a chronic medical condition even in women who remain disease free, and patients benefit from the approach afforded other chronic conditions in primary care. Copyright© the College of Family Physicians of Canada.

  11. Applying evidence from economic evaluations to translate cancer survivorship research into care.

    PubMed

    de Moor, Janet S; Alfano, Catherine M; Breen, Nancy; Kent, Erin E; Rowland, Julia

    2015-09-01

    This paper summarizes recommendations stemming from the meeting, Applying Evidence from Economic Evaluations to Translate Cancer Survivorship Research into Care, hosted by the National Cancer Institute. The meeting convened funded investigators, experts in cancer control, survivorship, health economics, and team science to identify the economic and health services data needed to facilitate the dissemination of cancer survivorship interventions into care and how survivorship and health economic investigators can successfully collaborate together and with other stakeholders. Recommendations from the meeting are as follows. First, investigators must engage key stakeholders early in the planning process to understand the outcomes and cost domains on which they base decisions. Second, evaluations of intervention efficacy and value should be conducted using standardized and comparable measures and analytic approaches to enable comparisons across studies. Finally, a health economist should be included during the planning phase of the study so that the economic evaluation is pursued in concert with the survivorship intervention. Economic analyses, from the perspective of key stakeholders, must be incorporated into survivorship intervention research. The results from these analyses should be disseminated in a manner that is transparent, accessible, and comparable across studies. To optimize cancer survivors' health and quality of life, it is essential deliver high-quality and high-value care. Incorporating economic analyses into survivorship intervention research can inform the translation of effective interventions into practice.

  12. Survivorship

    MedlinePlus

    ... Advocacy Survivorship About Cancer Survivorship Follow-up Care After Cancer Treatment Life After Cancer Long-Term Side Effects of Cancer Treatment ... cancer treatment along with tips for healthier living. Life After Cancer This section outlines a wide variety of ...

  13. American Cancer Society Colorectal Cancer Survivorship Care Guidelines.

    PubMed

    El-Shami, Khaled; Oeffinger, Kevin C; Erb, Nicole L; Willis, Anne; Bretsch, Jennifer K; Pratt-Chapman, Mandi L; Cannady, Rachel S; Wong, Sandra L; Rose, Johnie; Barbour, April L; Stein, Kevin D; Sharpe, Katherine B; Brooks, Durado D; Cowens-Alvarado, Rebecca L

    2015-01-01

    Colorectal cancer (CRC) is the third most common cancer and third leading cause of cancer death in both men and women and second leading cause of cancer death when men and women are combined in the United States (US). Almost two-thirds of CRC survivors are living 5 years after diagnosis. Considering the recent decline in both incidence and mortality, the prevalence of CRC survivors is likely to increase dramatically over the coming decades with the increase in rates of CRC screening, further advances in early detection and treatment and the aging and growth of the US population. Survivors are at risk for a CRC recurrence, a new primary CRC, other cancers, as well as both short-term and long-term adverse effects of the CRC and the modalities used to treat it. CRC survivors may also have psychological, reproductive, genetic, social, and employment concerns after treatment. Communication and coordination of care between the treating oncologist and the primary care clinician is critical to effectively and efficiently manage the long-term care of CRC survivors. The guidelines in this article are intended to assist primary care clinicians in delivering risk-based health care for CRC survivors who have completed active therapy.

  14. Understanding fragmentation of prostate cancer survivorship care: implications for cost and quality.

    PubMed

    Skolarus, Ted A; Zhang, Yun; Hollenbeck, Brent K

    2012-06-01

    Cancer survivors are particularly prone to the effects of a fragmented health care delivery system. The implications of fragmented cancer care across providers likely include greater spending and worse quality of care. For this reason, the authors measured relations between increasing fragmentation of cancer care, expenditures, and quality of care among prostate cancer survivors. A total of 67,736 patients diagnosed with prostate cancer between 1992 and 2005 were identified using Surveillance, Epidemiology, and End Results (SEER)-Medicare data. Using the Herfindahl-Hirschman Index and a measure of the average number of prostate cancer providers over time, patients were sorted into 3 fragmentation groups (low, intermediate, and high). The authors then examined annual per capita survivorship expenditures and a measure of quality (ie, repetitive prostate-specific antigen [PSA] testing within 30 days) according to their fragmentation exposure using multinomial logistic regression. Patients with highly fragmented cancer care tended to be younger, white, and of higher socioeconomic status (all P < .001). Prostate cancer survivorship interventions were most common among patients with the highest fragmentation of care across providers (P < .001). After adjustment for clinical characteristics and prostate cancer survivorship interventions, higher degrees of fragmentation continued to be associated with repetitive PSA testing (13.6% for high vs 7.0% for low fragmentation; P < .001) and greater spending, particularly among patients not treated with androgen deprivation therapy. Fragmented prostate cancer survivorship care is expensive and associated with potentially unnecessary services. Efforts to improve care coordination via current policy initiatives, electronic medical records, and the implementation of cancer survivorship tools may help to decrease fragmentation of care and mitigate downstream consequences for prostate cancer survivors. Copyright © 2011 American Cancer

  15. American Cancer Society Colorectal Cancer Survivorship Care Guidelines

    PubMed Central

    El-Shami, Khaled; Oeffinger, Kevin C.; Erb, Nicole L.; Willis, Anne; Bretsch, Jennifer; Pratt-Chapman, Mandi L.; Cannady, Rachel; Wong, Sandra L.; Rose, Johnie; Barbour, April; Stein, Kevin; Sharpe, Katherine; Brooks, Durado D.; Cowens-Alvarado, Rebecca L.

    2016-01-01

    Colorectal cancer (CRC) is the third most common malignant disease in the United States (U.S.). Almost two-thirds of CRC survivors are living 5 years following diagnosis. The prevalence of CRC survivors is likely to increase dramatically over the coming decades with further advances in early detection and treatment and the aging and growth of the U.S. population. Survivors are at risk for a CRC recurrence, a new primary CRC, other cancers, as well as both short and long-term adverse effects of the CRC and the modalities used to treat it. CRC survivors may also have psychological, reproductive, genetic, social, and employment concerns following treatment. Communication and coordination of care between the treating oncologist and the primary care clinician is critical to effectively and efficiently manage the long-term care of CRC survivors. The following guidelines are intended to assist primary care clinicians in delivering risk-based health care for CRC survivors who have completed active therapy. PMID:26348643

  16. Cancer survivorship: current status of research, care, and policy in Japan.

    PubMed

    Takahashi, Miyako

    2016-07-01

    Progress in early detection and treatment has been changing cancer into a chronic illness, and this has initiated an imperative shift in focus among healthcare providers, researchers and policy makers in many countries, including Japan, to cancer survivorship issues rather than mere survival. This article reviews the history of the cancer survivorship concept and examines how the concept has been integrated into cancer policy in Japan. It also discusses the characteristics of survivorship research and briefly reviews the current status of research and care, both in Japan and globally, regarding five important survivorship topics: developing measures for long-term complications and delayed effects, interpersonal relationships, lifestyle modifications and health promotion, sexuality and fertility, and work-related issues. Cooperation with practitioners and researchers in areas outside the medical fields will be indispensable to promote survivorship research and care practice. Also, the importance of collaboration with cancer survivors for developing support systems and policy measures related to survivorship cannot be emphasized enough. © The Author 2016. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  17. Cancer survivorship care-planning: Practice, research, and policy implications for social work.

    PubMed

    Wagner, Richard W; Pritzker, Suzanne

    2016-01-01

    Increasing numbers of cancer survivors are living longer than 5 years from their diagnosis date. This has resulted in a growing population of cancer survivors, expected to reach 19 million by 2024. Survivors frequently experience late effects caused by cancer and its treatment, reducing survivors' quality of life in multiple domains. Survivorship care-plans may aid the many physical, psychosocial, and financial needs that emerge posttreatment. However, the lack of reimbursement mechanisms, the limited amount of effectiveness research, and minimal guidelines for content and delivery are barriers to the widespread provision of survivorship care-plans. Challenges and opportunities for social work practice, research, and policy are identified and discussed.

  18. What are the barriers of quality survivorship care for haematology cancer patients? Qualitative insights from cancer nurses.

    PubMed

    Langbecker, Danette; Ekberg, Stuart; Yates, Patsy; Chan, Alexandre; Chan, Raymond Javan

    2016-02-01

    Many haematological cancer survivors report long-term physiological and psychosocial effects beyond treatment completion. These survivors continue to experience impaired quality of life (QoL) as a result of their disease and aggressive treatment. As key members of the multidisciplinary team, the purpose of this study is to examine the insights of cancer nurses to inform future developments in survivorship care provision. Open text qualitative responses from two prospective Australian cross-sectional surveys of nurses (n = 136) caring for patients with haematological cancer. Data were analysed thematically, using an inductive approach to identify themes. This study has identified a number of issues that nurses perceive as barriers to quality survivorship care provision. Two main themes were identified: the first relating to the challenges nurses face in providing care ('care challenges') and the second relating to the challenges of providing survivorship care within contemporary health care systems ('system challenges'). Cancer nurses perceive the nature of haematological cancer and its treatment and of the health care system itself, as barriers to the provision of quality survivorship care. Care challenges such as the lack of a standard treatment path and the relapsing or remitting nature of haematological cancers may be somewhat intractable, but system challenges relating to clearly defining and delineating professional responsibilities and exchanging information with other clinicians are not. Addressing the issues identified will facilitate cancer nurses' provision of survivorship care and help address haematological survivors' needs with regard to the physical and psychosocial consequences of their cancer and treatment.

  19. Development of the cancer survivorship care plan: what's next? Life after cancer treatment.

    PubMed

    Jackson, Jody M; Scheid, Kathy; Rolnick, Sharon J

    2013-06-01

    Long-term information needs are increasingly important as more people are diagnosed with cancer and living well beyond initial diagnosis and treatment. Consequently, cancer is joining the ranks of chronic conditions (e.g., asthma, diabetes) for which ongoing, long-term surveillance and management should be the model of care. However, the post-treatment period is fraught with uncertainty for patients and care providers. The "who, what, and when" of follow-up care, in particular, can be complex and confusing. Therefore, survivorship care plans (SCPs) are recommended. The Minnesota Cancer Alliance, a coalition working to improve quality of life for cancer survivors, developed a patient-focused SCP. This user-friendly SCP could be considered for use in patient care--particularly by nurses, who are well suited and positioned to implement SCPs.

  20. American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline.

    PubMed

    Runowicz, Carolyn D; Leach, Corinne R; Henry, N Lynn; Henry, Karen S; Mackey, Heather T; Cowens-Alvarado, Rebecca L; Cannady, Rachel S; Pratt-Chapman, Mandi L; Edge, Stephen B; Jacobs, Linda A; Hurria, Arti; Marks, Lawrence B; LaMonte, Samuel J; Warner, Ellen; Lyman, Gary H; Ganz, Patricia A

    2016-01-01

    Answer questions and earn CME/CNE The purpose of the American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline is to provide recommendations to assist primary care and other clinicians in the care of female adult survivors of breast cancer. A systematic review of the literature was conducted using PubMed through April 2015. A multidisciplinary expert workgroup with expertise in primary care, gynecology, surgical oncology, medical oncology, radiation oncology, and nursing was formed and tasked with drafting the Breast Cancer Survivorship Care Guideline. A total of 1073 articles met inclusion criteria; and, after full text review, 237 were included as the evidence base. Patients should undergo regular surveillance for breast cancer recurrence, including evaluation with a cancer-related history and physical examination, and should be screened for new primary breast cancer. Data do not support performing routine laboratory tests or imaging tests in asymptomatic patients to evaluate for breast cancer recurrence. Primary care clinicians should counsel patients about the importance of maintaining a healthy lifestyle, monitor for post-treatment symptoms that can adversely affect quality of life, and monitor for adherence to endocrine therapy. Recommendations provided in this guideline are based on current evidence in the literature and expert consensus opinion. Most of the evidence is not sufficient to warrant a strong evidence-based recommendation. Recommendations on surveillance for breast cancer recurrence, screening for second primary cancers, assessment and management of physical and psychosocial long-term and late effects of breast cancer and its treatment, health promotion, and care coordination/practice implications are made.

  1. Breast Cancer Survivorship Care: Targeting a Colorectal Cancer Education Intervention

    PubMed Central

    Homan, Sherri G.; Yun, Shumei; Stewart, Bob R.; Armer, Jane M.

    2015-01-01

    Breast cancer survivors are at risk of developing a second primary cancer. Colorectal cancer (CRC) is one of the leading second primary cancers, and it is often preventable. We developed a multi-component educational tool to inform and encourage women breast cancer survivors to engage in CRC screening. To assess the strengths and weakness of the tool and to improve the relevancy to the target audience, we convened four focus groups of women breast cancer survivors in Missouri. We also assessed the potential impact of the tool on the knowledge, attitudes, and beliefs regarding CRC and collected information on the barriers to CRC screening through pre- and post-focus groups’ questionnaires. A total of 43 women breast cancer survivors participated and provided very valuable suggestions on design and content to update the tool. Through the process and comparing pre- and post-focus group assessments, a significantly higher proportion of breast cancer survivors strongly agreed or agreed that CRC is preventable (78.6% vs. 96.9%, p = 0.02) and became aware that they were at a slightly increased risk for CRC (18.6% vs. 51.7%, p = 0.003). The most cited barrier was the complexity of preparation for colonoscopy. PMID:26258794

  2. Breast Cancer Survivorship Care: Targeting a Colorectal Cancer Education Intervention.

    PubMed

    Homan, Sherri G; Yun, Shumei; Stewart, Bob R; Armer, Jane M

    2015-08-06

    Breast cancer survivors are at risk of developing a second primary cancer. Colorectal cancer (CRC) is one of the leading second primary cancers, and it is often preventable. We developed a multi-component educational tool to inform and encourage women breast cancer survivors to engage in CRC screening. To assess the strengths and weakness of the tool and to improve the relevancy to the target audience, we convened four focus groups of women breast cancer survivors in Missouri. We also assessed the potential impact of the tool on the knowledge, attitudes, and beliefs regarding CRC and collected information on the barriers to CRC screening through pre- and post-focus groups' questionnaires. A total of 43 women breast cancer survivors participated and provided very valuable suggestions on design and content to update the tool. Through the process and comparing pre- and post-focus group assessments, a significantly higher proportion of breast cancer survivors strongly agreed or agreed that CRC is preventable (78.6% vs. 96.9%, p = 0.02) and became aware that they were at a slightly increased risk for CRC (18.6% vs. 51.7%, p = 0.003). The most cited barrier was the complexity of preparation for colonoscopy.

  3. Survivorship care plan preferences of cancer survivors and health care providers: a systematic review and quality appraisal of the evidence.

    PubMed

    Klemanski, Dori L; Browning, Kristine K; Kue, Jennifer

    2016-02-01

    The purpose of this systematic review was to describe and examine the current use of treatment summaries and survivorship care plans (TSs/SCPs) for cancer survivors, as well as to summarize and critically assess relevant literature regarding their preferences and usefulness. There is a knowledge gap regarding the preferences of stakeholders as to what is useful on a treatment summary or survivorship care plan. A systematic review of eligible manuscripts was conducted using preferred reporting items for systematic reviews and meta-analyses (PRISMA) guidelines. Relevant studies were identified via PubMed, CINAHL Plus, and the Cochrane Library from 2005 through 2013. Eligible studies were critically appraised with qualitative and quantitative appraisal tools. There were 29 studies included in this review; 19 were quantitative. Survivors and primary care physicians preferred a printable format delivered 0 to 6 months posttreatment and highlighting signs and symptoms of recurrence, late, and long-term effects, and recommendations for healthy living. Oncology providers supported the concept of treatment summary and survivorship care plan but reported significant barriers to their provision. No studies incorporated caregiver perspectives of treatment summary and survivorship care plan. This systematic review did not reveal conclusive evidence regarding the needs of survivors or providers regarding treatment summaries and survivorship care plans. A lack of rigorous studies contributed to this. Treatment summaries and survivorship care plans are useful for cancer survivors; however, future rigorous studies should be conducted to identify and prioritize the preferences of survivors regarding these.

  4. A survivorship care plan for breast cancer survivors: extended results of a randomized clinical trial.

    PubMed

    Boekhout, Annelies H; Maunsell, Elizabeth; Pond, Gregory R; Julian, Jim A; Coyle, Doug; Levine, Mark N; Grunfeld, Eva

    2015-12-01

    Prevailing wisdom suggests that implementation of a survivorship care plan (SCP) will address deficits in survivorship care planning and delivery for cancer patients. Here, we present 24-month results of a randomized clinical trial on health service and patient-reported outcomes among breast cancer patients transferred to their primary care physician for follow-up care. The 24-month assessments represent the long-term benefit and sustainability of the implantation of a SCP. In all, 408 patients with early-stage breast cancer were randomized to the SCP or control group. Patient self-completed questionnaires, supplemented with telephone interviews, during the 24-month study period assessed health service and patient-reported outcomes. The primary outcome was cancer-specific distress. Secondary outcomes included health-related quality of life, patient satisfaction, continuity and coordination of care, and health service outcomes such as adherence to guidelines. Over the course of 24 months, there were no differences between both groups in health service and patient-reported outcomes. Women from Quebec compared to those from Western Canada (p < 0.001), women within 2 years of completion of primary treatment compared to a longer period (p = 0.013), and those with a higher SF-36 mental component score compared to a lower score (p = 0.044) were positively associated with adherence to guidelines. The implementation of a SCP in the transition of survivorship care from cancer center to primary care did not contribute to improved health service or patient-reported outcomes in this study population. Therefore, additional research is needed before widespread implementation of a SCP in clinical practice. The transition of survivorship care from cancer center to the primary care setting showed no negative effect on health service and patient-reported outcomes.

  5. American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline.

    PubMed

    Runowicz, Carolyn D; Leach, Corinne R; Henry, N Lynn; Henry, Karen S; Mackey, Heather T; Cowens-Alvarado, Rebecca L; Cannady, Rachel S; Pratt-Chapman, Mandi L; Edge, Stephen B; Jacobs, Linda A; Hurria, Arti; Marks, Lawrence B; LaMonte, Samuel J; Warner, Ellen; Lyman, Gary H; Ganz, Patricia A

    2016-02-20

    The purpose of the American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline is to provide recommendations to assist primary care and other clinicians in the care of female adult survivors of breast cancer. A systematic review of the literature was conducted using PubMed through April 2015. A multidisciplinary expert workgroup with expertise in primary care, gynecology, surgical oncology, medical oncology, radiation oncology, and nursing was formed and tasked with drafting the Breast Cancer Survivorship Care Guideline. A total of 1,073 articles met inclusion criteria; and, after full text review, 237 were included as the evidence base. Patients should undergo regular surveillance for breast cancer recurrence, including evaluation with a cancer-related history and physical examination, and should be screened for new primary breast cancer. Data do not support performing routine laboratory tests or imaging tests in asymptomatic patients to evaluate for breast cancer recurrence. Primary care clinicians should counsel patients about the importance of maintaining a healthy lifestyle, monitor for post-treatment symptoms that can adversely affect quality of life, and monitor for adherence to endocrine therapy. Recommendations provided in this guideline are based on current evidence in the literature and expert consensus opinion. Most of the evidence is not sufficient to warrant a strong evidence-based recommendation. Recommendations on surveillance for breast cancer recurrence, screening for second primary cancers, assessment and management of physical and psychosocial long-term and late effects of breast cancer and its treatment, health promotion, and care coordination/practice implications are made.This guideline was developed through a collaboration between the American Cancer Society and the American Society of Clinical Oncology and has been published jointly by invitation and consent in both CA: A Cancer Journal for

  6. Survivorship Care Plan Information Needs: Perspectives of Safety-Net Breast Cancer Patients

    PubMed Central

    Napoles, Tessa M.; Banks, Priscilla J.; Orenstein, Fern S.; Luce, Judith A.; Joseph, Galen

    2016-01-01

    Purpose Despite the Institute of Medicine’s (IOM) 2005 recommendation, few care organizations have instituted standard survivorship care plans (SCPs). Low health literacy and low English proficiency are important factors to consider in SCP development. Our study aimed to identify information needs and survivorship care plan preferences of low literacy, multi-lingual patients to support the transition from oncology to primary care and ongoing learning in survivorship. Methods We conducted focus groups in five languages with African American, Latina, Russian, Filipina, White, and Chinese medically underserved breast cancer patients. Topics explored included the transition to primary care, access to information, knowledge of treatment history, and perspectives on SCPs. Results Analysis of focus group data identified three themes: 1) the need for information and education on the transition between “active treatment” and “survivorship”; 2) information needed (and often not obtained) from providers; and 3) perspectives on SCP content and delivery. Conclusions Our data point to the need to develop a process as well as written information for medically underserved breast cancer patients. An SCP document will not replace direct communication with providers about treatment, symptom management and transition, a communication that is missing in participating safety-net patients’ experiences of cancer care. Women turned to peer support and community-based organizations in the absence of information from providers. Implications for Cancer Survivors “Clear and effective” communication of survivorship care for safety-net patients requires dedicated staff trained to address wide-ranging information needs and uncertainties. PMID:27992491

  7. Survivorship and the chronic cancer patient: Patterns in treatment-related effects, follow-up care, and use of survivorship care plans.

    PubMed

    Frick, Melissa A; Vachani, Carolyn C; Bach, Christina; Hampshire, Margaret K; Arnold-Korzeniowski, Karen; Metz, James M; Hill-Kayser, Christine E

    2017-06-27

    The survivorship needs of patients living with chronic cancer (CC) and their use of survivorship care plans (SCPs) have been overlooked and underappreciated. A convenience sample of 39,088 SCPs completed for cancer survivors with an Internet-based SCP tool was examined; it included 5847 CC survivors (15%; CC was defined as chronic leukemia and/or recurrent/metastatic cancer of another nature). Patient-reported treatment effects and follow-up care patterns were compared between CC survivors and survivors treated with curative intent (CI). Responses from a follow-up survey regarding SCP satisfaction and use were reviewed. CC survivors had greater odds of experiencing multiple treatment-related effects than survivors treated with CI; these effects included fatigue, cognitive changes, dyspnea, peripheral neuropathy, lymphedema, and erectile dysfunction. Nearly half of CC survivors were managed by an oncologist alone, and they were less likely than CI patients to be comanaged by a primary care provider and an oncologist. Fewer SCPs were generated by health care providers (HCPs) for CC survivors versus CI survivors. A smaller proportion of CC users versus CI users rated their experience and satisfaction with the SCP tool as very good or excellent, and CC users were less likely to share the HCP summary with their health care team. A substantial number of CC survivors, often considered incurable but treatable, seek survivorship support. Tools to facilitate participation, communication, and coordination of care are valuable for these patients, and future iterations of SCPs should be designed to address the particular circumstances of living with CC. Cancer 2017. © 2017 American Cancer Society. © 2017 American Cancer Society.

  8. Survivorship: adult cancer survivors.

    PubMed

    Ganz, Patricia A

    2009-12-01

    During the next decade, a rapid increase in the number of new cancer diagnoses in the population as well as a growing number of cancer survivors can be expected. Cancer is anticipated to exceed cardiovascular disease as the primary cause of mortality in the United States population. Despite efforts in tobacco control, the aging of the population and obesity epidemic will contribute toward the increasing incidence of cancer. Although oncology specialists will continue to play a critical role in the diagnosis and initial treatment of patients with cancer, primary care providers will need to play an expanding role in the early detection of cancer, as well as the follow-up, health promotion, and cancer surveillance that will be necessary after initial cancer treatment. Oncology specialists will need to do a better job coordinating the care of their patients with primary care providers, and work toward a shared care model that will optimize the quality of care delivered by the health care system. Cancer treatment summaries and survivorship care plans are an initial attempt to address the current fragmentation and lack of coordination in care that exist today. Cancer survivors are at risk for a wide range of late effects after their primary cancer treatment. Unfortunately, there is limited information about the exact incidence and prevalence of many physical late effects. For example, how many women given standard adjuvant chemotherapy with doxorubicin and cyclophosphamide for breast cancer at age 35 years will develop permanent amenorrhea after treatment, and be infertile? What is the excess risk of osteoporosis in a 70-year-old man receiving endocrine therapy for prostate cancer? What is the risk of coronary artery disease after mantle irradiation for Hodgkin lymphoma? Because of the limited database for many of these sequelae of treatment, clinicians have to keep all of these potential risks in mind as they interview a survivor, and develop a long-term management plan

  9. Survivorship care plans for people with colorectal cancer: do they reflect the research evidence?

    PubMed Central

    D’Souza, V.; Daudt, H.; Kazanjian, A.

    2016-01-01

    Aim In the present study, we synthesized the published literature about the psychosocial aspects of colorectal cancer (crc) survivorship to support an update of the evidentiary base of the survivorship care plans (scps) created in our jurisdiction. Methods The psychosocial topics identified in the crc scps created by two different initiatives in our province were used as search criteria: quality of life (qol), sexual function, fatigue, and lifestyle behaviors. An umbrella review was conducted to retrieve the best possible evidence. Only reviews that investigated the intended outcomes in crc survivors and those with moderate-to-high methodologic quality scores were included. Results Of 462 retrieved reports, eight reviews met the inclusion criteria for the synthesis. Of those eight, six investigated the challenges of crc survivors and two investigated the effect of physical activity on survivor well-being. Our results indicate that emotional and physical challenges are common in crc survivors and that physical activity is associated with clinically important benefits for the fatigue and physical functioning of crc survivors. Conclusions Our study findings update the evidence and indicate that existing scps in our province concerning the physical and emotional challenges of crc survivors reflect the evidence at the time of their issue. However, the literature concerning cancer risks specific to crc survivors is lacking. Although systematic reviews are considered to be the “gold standard” in knowledge synthesis, our findings suggest that much remains to be done in the area of synthesis research to better guide practice in cancer survivorship. PMID:27803610

  10. Defining cancer survivors, their needs, and perspectives on survivorship health care in the USA.

    PubMed

    Mayer, Deborah K; Nasso, Shelly Fuld; Earp, Jo Anne

    2017-01-01

    More people are living after a diagnosis of cancer than ever before and now account for around 5% of the US population. The specialty of cancer survivorship has been developing and growing since the mid-1980s, but the term survivor is open to debate by people living with cancer and those caring for them. Regardless of the term used, many ongoing physical, psychological, and social needs affect quality of life for people who are living with cancer and those who have survived the disease. Survivors prefer to have these needs addressed by their oncologist but also want their primary care provider to have a role. However, survivors also believe there are communication and coordination barriers between care providers. The existing method for delivering cancer care is becoming unsustainable and is not adequately configured to deliver high-quality cancer care to this growing population in the USA, especially when confronted with projected health-care shortages by 2020. In this Series paper, we define the term cancer survivor, discuss survivors' ongoing needs and preferences for care over time, and consider the implications for delivering coordinated cancer care in the USA. Copyright © 2017 Elsevier Ltd. All rights reserved.

  11. Survivorship Care in Reducing Symptoms in Young Adult Cancer Survivors

    ClinicalTrials.gov

    2016-10-04

    Breast Carcinoma; Cancer Survivor; Depression; Fatigue; Leukemia; Lymphoma; Malignant Bone Neoplasm; Malignant Digestive System Neoplasm; Malignant Female Reproductive System Neoplasm; Malignant Male Reproductive System Neoplasm; Pain; Sleep Disorder; Soft Tissue Sarcoma

  12. Survivorship care plans and adherence to lifestyle recommendations among breast cancer survivors.

    PubMed

    Greenlee, Heather; Molmenti, Christine L Sardo; Crew, Katherine D; Awad, Danielle; Kalinsky, Kevin; Brafman, Lois; Fuentes, Deborah; Shi, Zaixing; Tsai, Wei-Yann; Neugut, Alfred I; Hershman, Dawn L

    2016-12-01

    The effectiveness of survivorship care plans has not been widely tested. We evaluated whether a one-time brief lifestyle consultation as part of a broader survivorship care plan was effective at changing diet and lifestyle patterns. A diverse sample of women with stage 0-III breast cancer were randomized to control or intervention groups within 6 weeks of completing adjuvant treatment. Both groups received the National Cancer Institute publication, "Facing Forward: Life after Cancer Treatment." The intervention group also met with a nurse (1 h) and a nutritionist (1 h) to receive personalized lifestyle recommendations based upon national guidelines. Diet, lifestyle, and perceived health were assessed at baseline, 3 and 6 months. Linear regression analyses evaluated the effects of the intervention adjusted for covariates. A total of 126 women completed the study (60 control/66 intervention, 61 Hispanic/65 non-Hispanic). At 3 months, the intervention group reported greater knowledge of a healthy diet (P = 0.047), importance of physical activity (P = 0.03), and appropriate use of dietary supplements (P = 0.006) and reported lower frequency of alcohol drinking (P = 0.03) than controls. At 6 months, only greater knowledge of a healthy diet (P = 0.01) persisted. The intervention was more effective among non-Hispanics than Hispanics on improving attitude towards healthy eating (P = 0.03) and frequency of physical activity (P = 0.006). The intervention changed lifestyle behaviors and knowledge in the short-term, but the benefits did not persist. Culturally competent long-term behavioral interventions should be tested beyond the survivorship care plan to facilitate long-term behavior change among breast cancer survivors.

  13. Provision and Discussion of Survivorship Care Plans Among Cancer Survivors: Results of a Nationally Representative Survey of Oncologists and Primary Care Physicians

    PubMed Central

    Blanch-Hartigan, Danielle; Forsythe, Laura P.; Alfano, Catherine M.; Smith, Tenbroeck; Nekhlyudov, Larissa; Ganz, Patricia A.; Rowland, Julia H.

    2014-01-01

    Purpose Survivorship care planning should involve discussions between providers and cancer survivors to address survivors' needs and optimize adherence. We examined the frequency and factors associated with oncologists' and primary care physicians' (PCPs) reports of provision of written survivorship care plans (SCPs) and discussion of survivorship care recommendations with survivors. Methods A nationally representative sample of 1,130 oncologists and 1,020 PCPs was surveyed about survivorship care practices with survivors. Logistic regression models predicted multilevel factors associated with providing SCPs or discussing recommendations with survivors. Results Although a majority of oncologists (64%) reported always/almost always discussing survivorship care recommendations with survivors, fewer also discussed who survivors should see for cancer-related and other follow-up care (32%); fewer still also provided a written SCP to the survivor (< 5%). Survivorship care recommendations and provider responsibility were not regularly discussed by PCPs and survivors (12%). Oncologists who reported detailed training about late and long-term effects of cancer were more likely to provide written SCPs (odds ratio [OR], 1.73; 95% CI, 1.22 to 2.44) and discuss survivorship care planning with survivors (OR, 2.02; 95% CI, 1.51 to 2.70). PCPs who received SCPs from oncologists were 9× more likely (95% CI, 5.74 to 14.82) to report survivorship discussions with survivors. Conclusion A minority of both PCPs and oncologists reported consistently discussing and providing SCPs to cancer survivors. Training and knowledge specific to survivorship care and coordinated care between PCPs and oncologists were associated with increased survivorship discussions with survivors. These nationally representative data provide a useful benchmark to assess implementation of new efforts to improve the follow-up care of survivors. PMID:24752057

  14. Survivorship after lower gastrointestinal cancer: Patient-reported outcomes and planning for care.

    PubMed

    Frick, Melissa A; Vachani, Carolyn C; Hampshire, Margaret K; Bach, Christina; Arnold-Korzeniowski, Karen; Metz, James M; Hill-Kayser, Christine E

    2017-05-15

    There is significant need for quality follow-up care to optimize long-term outcomes for the growing population of lower gastrointestinal (GI) cancer survivors. Patient-reported outcomes (PROs) provide valuable information regarding late and long-term effects (LLTEs). A convenience sample from 1129 colon, rectal, and anal cancer survivors (n = 792; 218, and 119, respectively) who participated in an Internet-based survivorship care plan (SCP) tool between May 2010 and October 2014 was used to examine patient-reported demographics, treatment, and toxicity data. Responses from a follow-up survey were reviewed. The median age of diagnosis was 51 years, and 81% of survivors were Caucasian. The most commonly reported LLTEs for all survivors were neuropathy, fatigue, cognitive changes, changes in GI function, urogenital and sexual dysfunction, and dermatologic effects. The prevalence of these effects varied with time since diagnosis, treatment modality, and treatment center. Individuals who had survived anal cancer reported a high prevalence of sexual dysfunction and radiation-induced dermatologic effects. Over 87% of users reported satisfaction levels of good to excellent using the SCP tool, and 69% reported that they intend to share the SCP with their health care team. For lower GI cancer survivors, it is feasible to obtain PROs from an Internet-based survivorship tool. Survivors report a wide spectrum of LLTEs, and these can be used to inform counseling at the time of diagnosis and to help anticipate and respond to disease-related and treatment-related sequelae during follow-up. The authors are among the first to report on PROs in anal cancer survivors. Further investigation on the impact of SCPs on health care communication and use is needed. Cancer 2017;123:1860-1868. © 2017 American Cancer Society. © 2017 American Cancer Society.

  15. It's who you know: patient-sharing, quality, and costs of cancer survivorship care.

    PubMed

    Pollack, Craig Evan; Frick, Kevin D; Herbert, Robert J; Blackford, Amanda L; Neville, Bridget A; Wolff, Antonio C; Carducci, Michael A; Earle, Craig C; Snyder, Claire F

    2014-06-01

    Cancer survivors frequently receive care from a large number of physicians, creating challenges for coordination. We sought to explore whether cancer survivors whose providers have more patients in common (e.g., shared patients) tend to have higher quality and lower cost care. We performed a retrospective cohort study of 8,661 patients diagnosed with loco-regional breast, prostate, or colorectal cancer. We examined survivorship care from days 366 to 1,095 following their cancer diagnosis. Our primary independent variable was "care density," a novel metric of the extent to which a patient's providers share patients with one another. Our outcome measures were health care utilization, quality metrics, and costs. In adjusted analyses, we found that patients with high care density--indicating high levels of patient-sharing among their providers--had significantly lower rates of hospitalization (OR 0.87, 95% CI 0.75-1.00) and higher odds of an eye examination for diabetes (OR 1.31, 95% CI 1.03-1.66) compared to patients with low care density. High care density was not associated with emergency department visits, avoidable outcomes, lipid profile following an angina diagnosis, or odds of glycosylated hemoglobin testing for diabetes. Patients with high care density had significantly lower total costs of care over 24 months (beta coefficient -$2,116, 95% CI -$3,107 to -$1,125) along with lower inpatient and outpatient costs. Cancer survivors treated by physicians who share more patients with one another tend to have some higher aspects of quality and lower cost care. If validated, care density may be a useful indicator for monitoring care coordination among cancer survivors and potentially targeting interventions that seek to improve care delivery.

  16. Summing It Up: An Integrative Review of Studies of Cancer Survivorship Care Plans (2006–2013)

    PubMed Central

    Mayer, Deborah K.; Birken, Sarah A.; Check, Devon K.; Chen, Ronald C.

    2016-01-01

    Background The Institute of Medicine (2006) recommended that cancer survivors completing primary treatment receive a survivorship care plan (SCP) based on face validity. The state of scientific knowledge regarding SCP is unclear. We conducted an integrative review of existing evidence regarding SCP. Methods We searched MEDLINE /PubMed, EMBASE, and CINAHL for relevant studies published between 2006 – 2013 using a combination of keywords: ‘survivors,’ ‘survivorship,’ ‘care plans,’ ‘care planning,’ ‘treatment summaries’ and ‘cancer.’ Articles were included if they (1) reported results of an empirical study; (2) included cancer survivors diagnosed at age 18 or older; (3) related to SCP; and (4) were published in English. A total of 781 records were retrieved; 77 were duplicates, 665 were abstracts or presentations, did not relate to SCP for adults or were not empirical – leaving 42 for inclusion in this review. Results Studies regarding SCP fell into three categories: (a) content (n=14); (b) dissemination and implementation (n=14); and (c) survivor and provider outcomes (n=14). SCP were endorsed and associated with improved knowledge, but SCP use remains sporadic. Only 4 studies were randomized controlled trials (RCT) that avoided many biases associated with observational studies. Other limitations included cross-sectional or pre-post designs, limited generalizability due to lacking sample diversity, and lack of systematic testing of data collection tools. Conclusions The quantity and quality of SCP research is limited. SCP were endorsed, but evidence of improved outcomes associated with SCP is limited. Future research that addresses extant studies’ methodological concerns is needed regarding SCP use, content, and outcomes. PMID:25252164

  17. Oncology Nurse Participation in Survivorship Care

    PubMed Central

    Grant, Marcia; Economou, Denice; Ferrell, Betty

    2011-01-01

    Oncology nurses are playing an important role in the provision of survivorship care. Their involvement includes educating and coordinating multidiscipline teams to initiate and provide care to patients and families. Oncology nurses participate in this evolving model of care in a variety of ways. Using the IOM report recommendations for the provision of quality cancer care nurses provide care based on the specific characteristics of individual health care settings and the populations they serve. Evaluating the settings resources and goals for desired survivorship activities as part of the planning process can be the difference between success and failure. Collaborating with local and national resources for cancer survivors can help expand services for a setting in an efficient and cost effective manner. Models of care vary and resources and communication differs among cancer care settings. Survivorship care differs as a result, across different models. Nurses are key to the dissemination and coordination of survivorship activities and are critical in facilitating communication between health care providers, the patients and caregivers. Nurses have a significant role in the dissemination and coordination of information between the patient and other health care providers. Oncology care does not end when treatment ends. PMID:21112849

  18. Views of family physicians about survivorship care plans to provide breast cancer follow-up care: exploration of results from a randomized controlled trial.

    PubMed

    O'Brien, M A; Grunfeld, E; Sussman, J; Porter, G; Mobilio, M Hammond

    2015-08-01

    The U.S. Institute of Medicine recommends that cancer patients receive survivorship care plans, but evaluations to date have found little evidence of the effectiveness of such plans. We conducted a qualitative follow-on study to a randomized controlled trial (rct) to understand the experiences of family physicians using survivorship care plans to support the follow-up of breast cancer patients. A subset of family physicians whose patients were enrolled in the parent rct in Ontario and Nova Scotia were eligible for this study. In interviews, the physicians discussed survivorship care plans (intervention) or usual discharge letters (control), and their confidence in providing follow-up cancer care. Of 123 eligible family physicians, 18 (10 intervention, 8 control) were interviewed. In general, physicians receiving a survivorship care plan found only the 1-page care record to be useful. Physicians who received only a discharge letter had variable views about the letter's usefulness; several indicated that it lacked information about potential cancer- or treatment-related problems. Most physicians were comfortable providing care 3-5 years after diagnosis, but desired timely and informative communication with oncologists. Although family physicians did not find extensive survivorship care plans useful, discharge letters might not be sufficiently comprehensive for follow-up breast cancer care. Effective strategies for two-way communication between family physicians and oncologists are still lacking.

  19. Toward improved survivorship: supportive care needs of esophageal cancer patients, a literature review.

    PubMed

    Graham, L; Wikman, A

    2016-11-01

    The growing prevalence of esophageal cancer survivors represent a population typified by an extensive treatment regime, significant postsurgical long-term effects, and a dismal prognosis. Despite this, little is known of the supportive care needs of this patient group and the extent to which these are being met in practice. This review provides a synthesis of the research evidence to date; emphasizing opportunities for clinical application and setting a future agenda with research priorities. A literature search was performed using Medline/Embase, PsycINFO, and Web of Science. Search headings used included; [esophagus] or [esopohageal] or [upper gastrointestinal] or [upper GI] AND [cancer] or [carcinoma] or [squamous cell] AND [supportive care] or [survivorship] or [psychological] or [emotional] or [information] or [social] or [communication] or [spiritual] or [health-related-quality-of-life] or [HRQL] or [qualitative] or [patient narrative] or [clinical nurse specialist] or [CNS]. Related articles in English were reviewed, with additional articles harvested from reference sections. Esophageal cancer survivors report significant late-term effects posttreatment, encompassing sustained impairment in most areas of health-related quality of life. With a necessitated change in eating behavior, survivors find it particularly challenging to adjust to a new social identity and as a cancer population report high levels of psychological morbidity. Although the determinants of psychological morbidity are largely unknown, illness representations may be a key contributor. Several multidisciplinary supportive care interventions have been developed with promising results. The research summarized in this paper provides valuable insight into the psychosocial well-being of the esophageal cancer survivor. However, knowledge gaps remain, alongside a dearth of applied examples in meeting supportive care need. © 2015 International Society for Diseases of the Esophagus.

  20. Evaluating survivorship care plans: results of a randomized, clinical trial of patients with breast cancer.

    PubMed

    Grunfeld, Eva; Julian, Jim A; Pond, Gregory; Maunsell, Elizabeth; Coyle, Douglas; Folkes, Amy; Joy, Anil A; Provencher, Louise; Rayson, Daniel; Rheaume, Dorianne E; Porter, Geoffrey A; Paszat, Lawrence F; Pritchard, Kathleen I; Robidoux, André; Smith, Sally; Sussman, Jonathan; Dent, Susan; Sisler, Jeffrey; Wiernikowski, Jennifer; Levine, Mark N

    2011-12-20

    An Institute of Medicine report recommends that patients with cancer receive a survivorship care plan (SCP). The trial objective was to determine if an SCP for breast cancer survivors improves patient-reported outcomes. Women with early-stage breast cancer who completed primary treatment at least 3 months previously were eligible. Consenting patients were allocated within two strata: less than 24 months and ≥ 24 months since diagnosis. All patients were transferred to their own primary care physician (PCP) for follow-up. In addition to a discharge visit, the intervention group received an SCP, which was reviewed during a 30-minute educational session with a nurse, and their PCP received the SCP and guideline on follow-up. The primary outcome was cancer-related distress at 12 months, assessed by the Impact of Event Scale (IES). Secondary outcomes included quality of life, patient satisfaction, continuity/coordination of care, and health service measures. Overall, 408 survivors were enrolled through nine tertiary cancer centers. There were no differences between groups on cancer-related distress or on any of the patient-reported secondary outcomes, and there were no differences when the two strata were analyzed separately. More patients in the intervention than control group correctly identify their PCP as primarily responsible for follow-up (98.7% v 89.1%; difference, 9.6%; 95% CI, 3.9 to 15.9; P = .005). The results do not support the hypothesis that SCPs are beneficial for improving patient-reported outcomes. Transferring follow-up to PCPs is considered an important strategy to meet the demand for scarce oncology resources. SCPs were no better than a standard discharge visit with the oncologist to facilitate transfer.

  1. About Survivorship

    MedlinePlus

    ... Advocacy Survivorship About Cancer Survivorship Follow-up Care After Cancer Treatment Life After Cancer Long-Term Side Effects of Cancer ... this section About Cancer Survivorship Follow-up Care After Cancer Treatment Life After Cancer Long-Term Side Effects of Cancer ...

  2. Patient Engagement in Cancer Survivorship Care through mHealth: A Consumer-centered Review of Existing Mobile Applications

    PubMed Central

    Geng, Yimin; Myneni, Sahiti

    2015-01-01

    With improvements in early detection and treatment, the number of cancer survivors has been on the rise. Studies suggest that cancer survivors do not often receive proper follow-up care despite existing guidelines. Patient engagement is key to healthy survivorship, and mHealth provides a viable platform to empower survivors with just- in-time personalized support. However, our understanding of existing mHealth solutions in cancer survivorship is limited. In this paper, we use Patient Engagement Framework to investigate existing apps to bridge this knowledge gap. App features are mapped to the framework components to determine the level of engagement facilitated. Ability to record treatment summaries has been found in five out of seven apps examined. While collaborative care and social engagement are found minimally, the majority of features (95%) are limited to information and way finding, e-tools, and interactive forms. Limitations of the existing apps and possible improvements to the framework are discussed. PMID:26958192

  3. Reconceptualizing Cancer Survivorship Through Veterans' Lived Experiences

    PubMed Central

    Martin, Lindsey Ann; Moye, Jennifer; Street, Richard L.; Naik, Aanand D.

    2015-01-01

    This study assessed the biopsychosocial impact of cancer on Veteran older adult survivors by garnering their accounts of their illness experiences. A narrative analysis of 73 cancer diagnosis and treatment stories reveals five “paths” Veterans are taking 18 months postdiagnosis. These paths indicate that cancer survivorship cannot be conceptualized as a one-size-fits-all experience but rather is a process of Veterans understanding and making sense of the effects of cancer on their lives. Our future goal is to develop a screening tool to help clinicians identify a patient's “path” to tailor survivorship care to meet specific needs. PMID:24611460

  4. Considerations for developing chronic care system for traumatic brain injury based on comparisons of cancer survivorship and diabetes management care.

    PubMed

    Heiden, Siobhan M; Caldwell, Barrett S

    2017-07-12

    Experts in traumatic brain injury (TBI) rehabilitation recently proposed the framing of TBI as a chronic disease rather than a discrete event. Within the framework of the Chronic Care Model (CCM), a systematic comparison of three diseases - cancer survivorship, diabetes management and TBI chronic care - was conducted regarding chronic needs and the management of those needs. In addition, comparisons of these conditions require comparative evaluations of disease management characteristics and the survivor concept. The analysis found diabetes is more established within the CCM, where care is integrated across specialists and primary care providers. No single comparison provides a full analogue for understanding the chronic care health delivery system for TBI, indicating the need for a separate model to address needs and resources for TBI survivors. The findings from this research can provide practitioners with a context to develop a robust continued care health system for TBI. Practitioner Summary: We examine development of a chronic care system for traumatic brain injury. We conducted a systematic comparison of Chronic Care Model elements of decision and information support. Development of capabilities using a benchmark of diabetes care, with additional insights from cancer care, provides insights for implementing TBI chronic care systems.

  5. Empowering survivors after colorectal and lung cancer treatment: Pilot study of a Self-Management Survivorship Care Planning intervention.

    PubMed

    Reb, Anne; Ruel, Nora; Fakih, Marwan; Lai, Lily; Salgia, Ravi; Ferrell, Betty; Sampath, Sagus; Kim, Jae Y; Raz, Dan J; Sun, Virginia

    2017-08-01

    This study evaluates the feasibility and acceptability of a Self-Management Survivorship Care Planning (SM-SCP) intervention in colorectal and lung cancer survivors. This is a single-group, pre- and post-mixed methods study of an advance practice nurse-driven survivorship care intervention that integrates a survivorship care plan with self-management skills coaching. Colorectal and lung cancer survivors with stage I-III disease were enrolled at 3-6 months after completing treatments, and the intervention was administered in one in-person or telephone session. Survivor outcome measures included depression, anxiety, self-efficacy, QOL, and satisfaction. Paired t-tests were used for exploratory evaluations of pre-to post-intervention score changes. Content analysis was conducted to analyze the qualitative data to describe survivors' experience with the intervention. Thirty participants (15 colorectal, 15 lung) enrolled and completed the study (73% retention). It took an average of 40 min to complete the TS/CP and 34.2 min to deliver the intervention. Exploratory analysis revealed significant differences from baseline to post-intervention in depression, anxiety, self-efficacy, physical functioning, role limitations-physical, pain, general health, health transition, physical health summary, and total QOL. Three qualitative themes emerged: 1) Feeling empowered about having a plan; 2) Struggling with psychosocial concerns; and 3) Suggestions for intervention content and delivery. The SM-SCP intervention was feasible and acceptable for colorectal and lung cancer survivors after treatment completion. Survivorship care interventions have potential to fulfill the unmet needs of colorectal and lung cancer survivors. Their effectiveness might be greater by integrating conceptually-based models of care, such as self-management skills building. Copyright © 2017 Elsevier Ltd. All rights reserved.

  6. Structuring survivorship care: discipline-specific clinician perspectives

    PubMed Central

    Pailler, Megan; Zevon, Michael A.; Ch'ng, James; Groman, Adrienne; Kelly, Maureen; Panagakis, Christina; Wilding, Gregory E.; Yasko, Joyce; Gruber, Marcia

    2011-01-01

    Introduction Several models for survivorship care are prominent within the cancer literature; however, there is little empirical research that examines what oncology clinicians perceive to be the best approach to caring for cancer survivors, what services survivorship programs should include, and how prepared they feel to care for cancer survivors. Methods An IRB approved web-based survey of all clinical staff was conducted at a NCI designated comprehensive cancer center with a 49.8% response rate (N=377). Data were summarized using frequencies and relative frequencies, and pairwise tests of statistical significance were utilized to evaluate differences between clinician type groups. Results Overall, the largest proportion of respondents preferred a disease-specific survivorship model (37.6%). This preference was specifically observed in oncology physicians and nurses. When asked where specific survivorship services should be provided, respondents indicated a preference for services directly related to survivors' medical treatment (i.e. information about late effects) to be delivered in a disease-specific survivorship clinic, and ancillary services (i.e. nutrition and fertility counseling) to be housed in a centralized comprehensive survivorship clinic. Physicians felt that they have significantly more information, training, and resources to care for cancer survivors than did oncology nurses. Discussion/conclusion These results indicate that oncology clinicians prefer a combination of survivorship care delivery models where continuing medical needs are met in disease-specific clinics, and comprehensive wellness services are offered in a centralized comprehensive survivorship clinic. Results also suggest that planning for survivorship initiatives should include additional resources, education, and training for clinical staff. Implications for cancer survivors These findings underscore the need for a universally accepted definition of cancer survivorship, and support

  7. Primary care-led survivorship care for patients with colon cancer and the use of eHealth: a qualitative study on perspectives of general practitioners

    PubMed Central

    Duineveld, Laura A M; Wieldraaijer, Thijs; Wind, Jan; Verdonck-de Leeuw, Irma M; van Weert, Henk C P M; van Uden-Kraan, Cornelia F

    2016-01-01

    Objectives The aim of this study was to explore the perspectives of general practitioners (GPs) regarding their current and future role in survivorship care of patients with colon cancer, and to assess their perspectives on patients’ self-management capacities and the value of the eHealth application Oncokompas2.0 used by patients. Setting GPs from the central part of the Netherlands were interviewed at their location of preference. Participants 20 GPs participated (10 men, 10 women, age range 34–65 years, median age 49.5 years). The median years of experience as a GP was 14.5 years (range 3–34 years). Results GPs indicated attempting to keep in contact with patients after colon cancer treatment and mentioned being aware of symptoms of recurrent disease. Most participants would have liked to be more involved and expected to be able to provide survivorship care of colon cancer. Requirements mentioned were agreements with secondary care and a protocol. GPs considered Oncokompas2.0, which stimulates patients to structure their own survivorship care, as a useful additional tool for a specific group of patients (ie, young and highly-educated patients). Conclusions Based on the perspectives of the GPs, survivorship care of colon cancer in primary care is deemed feasible and the use of an eHealth application such as Oncokompas2.0 is expected to benefit specific groups of patients after colon cancer treatment. PMID:27126977

  8. Structuring survivorship care: discipline-specific clinician perspectives.

    PubMed

    Gage, Elizabeth A; Pailler, Megan; Zevon, Michael A; Ch'ng, James; Groman, Adrienne; Kelly, Maureen; Panagakis, Christina; Wilding, Gregory E; Yasko, Joyce; Gruber, Marcia

    2011-09-01

    Several models for survivorship care are prominent within the cancer literature; however, there is little empirical research that examines what oncology clinicians perceive to be the best approach to caring for cancer survivors, what services survivorship programs should include, and how prepared they feel to care for cancer survivors. An IRB approved web-based survey of all clinical staff was conducted at a NCI designated comprehensive cancer center with a 49.8% response rate (N  =  377). Data were summarized using frequencies and relative frequencies, and pairwise tests of statistical significance were utilized to evaluate differences between clinician type groups. Overall, the largest proportion of respondents preferred a disease-specific survivorship model (37.6%). This preference was specifically observed in oncology physicians and nurses. When asked where specific survivorship services should be provided, respondents indicated a preference for services directly related to survivors' medical treatment (i.e. information about late effects) to be delivered in a disease-specific survivorship clinic, and ancillary services (i.e. nutrition and fertility counseling) to be housed in a centralized comprehensive survivorship clinic. Physicians felt that they have significantly more information, training, and resources to care for cancer survivors than did oncology nurses. These results indicate that oncology clinicians prefer a combination of survivorship care delivery models where continuing medical needs are met in disease-specific clinics, and comprehensive wellness services are offered in a centralized comprehensive survivorship clinic. Results also suggest that planning for survivorship initiatives should include additional resources, education, and training for clinical staff. These findings underscore the need for a universally accepted definition of cancer survivorship, and support a model for delivering care to cancer survivors that is a blend of the

  9. An eHealth Application in Head and Neck Cancer Survivorship Care: Health Care Professionals' Perspectives.

    PubMed

    Duman-Lubberding, Sanne; van Uden-Kraan, Cornelia F; Peek, Niels; Cuijpers, Pim; Leemans, C René; Verdonck-de Leeuw, Irma M

    2015-10-21

    Although many cancer survivors could benefit from supportive care, they often do not utilize such services. Previous studies have shown that patient-reported outcomes (PROs) could be a solution to meet cancer survivors' needs, for example through an eHealth application that monitors quality of life and provides personalized advice and supportive care options. In order to develop an effective application that can successfully be implemented in current health care, it is important to include health care professionals in the development process. The aim of this study was to investigate health care professionals' perspectives toward follow-up care and an eHealth application, OncoKompas, in follow-up cancer care that monitors quality of life via PROs, followed by automatically generated tailored feedback and personalized advice on supportive care. Health care professionals involved in head and neck cancer care (N=11) were interviewed on current follow-up care and the anticipated value of the proposed eHealth application (Step 1). A prototype of the eHealth application, OncoKompas, was developed (Step 2). Cognitive walkthroughs were conducted among health care professionals (N=21) to investigate perceived usability (Step 3). Interviews were recorded, transcribed verbatim, and analyzed by 2 coders. Health care professionals indicated several barriers in current follow-up care including difficulties in detecting symptoms, patients' perceived need for supportive care, and a lack of time to encourage survivors to obtain supportive care. Health care professionals expected the eHealth application to be of added value. The cognitive walkthroughs demonstrated that health care professionals emphasized the importance of tailoring care. They considered the navigation structure of OncoKompas to be complex. Health care professionals differed in their opinion toward the best strategy to implement the application in clinical practice but indicated that it should be incorporated in the

  10. An eHealth Application in Head and Neck Cancer Survivorship Care: Health Care Professionals' Perspectives

    PubMed Central

    van Uden-Kraan, Cornelia F; Peek, Niels; Cuijpers, Pim; Leemans, C René; Verdonck-de Leeuw, Irma M

    2015-01-01

    Background Although many cancer survivors could benefit from supportive care, they often do not utilize such services. Previous studies have shown that patient-reported outcomes (PROs) could be a solution to meet cancer survivors’ needs, for example through an eHealth application that monitors quality of life and provides personalized advice and supportive care options. In order to develop an effective application that can successfully be implemented in current health care, it is important to include health care professionals in the development process. Objective The aim of this study was to investigate health care professionals’ perspectives toward follow-up care and an eHealth application, OncoKompas, in follow-up cancer care that monitors quality of life via PROs, followed by automatically generated tailored feedback and personalized advice on supportive care. Methods Health care professionals involved in head and neck cancer care (N=11) were interviewed on current follow-up care and the anticipated value of the proposed eHealth application (Step 1). A prototype of the eHealth application, OncoKompas, was developed (Step 2). Cognitive walkthroughs were conducted among health care professionals (N=21) to investigate perceived usability (Step 3). Interviews were recorded, transcribed verbatim, and analyzed by 2 coders. Results Health care professionals indicated several barriers in current follow-up care including difficulties in detecting symptoms, patients’ perceived need for supportive care, and a lack of time to encourage survivors to obtain supportive care. Health care professionals expected the eHealth application to be of added value. The cognitive walkthroughs demonstrated that health care professionals emphasized the importance of tailoring care. They considered the navigation structure of OncoKompas to be complex. Health care professionals differed in their opinion toward the best strategy to implement the application in clinical practice but

  11. Survivorship care planning in skin cancer: An unbiased statistical approach to identifying patterns of care-plan use.

    PubMed

    Benci, Joseph L; Minn, Andy J; Vachani, Carolyn C; Bach, Christina; Arnold-Korzeniowski, Karen; Hampshire, Margaret K; Metz, James M; Hill-Kayser, Christine E

    2017-09-08

    Nearly 1 in 5 Americans will develop skin cancer, and as a result, survivors of skin cancer compose one of the largest groups of cancer survivors. Survivorship care plans (SCPs) are an important tool for improving patient outcomes and provide critical information to both survivors and health care professionals. Recent efforts have been made to expand SCP utilization; however, which patients currently receive SCPs is poorly understood. This study used 596 individuals with a diagnosis of melanoma (n = 391) or nonmelanoma skin cancer (n = 205) who had used an Internet-based SCP tool from May 2010 to December 2016 to model the patient and provider characteristics that determine SCP utilization. Survivors were predominantly white (95.3%) and female (56.5%). Survivors who received a treatment summary were more likely to also receive an SCP. University and nonuniversity cancer centers used SCPs at a higher rate than other care settings. Survivors whose care was managed by a team rather than just an individual physician were also more likely to receive an SCP. Survivors older than 70 years at diagnosis were almost twice as likely to receive a plan as survivors who were diagnosed at a younger age. With a convenience sample of skin cancer survivors, it is possible to model factors that predict the receipt of SCPs. Important variables include the diagnosis age, treatment setting, physician type, and treatment-summary utilization. A closer examination of these variables identified several disparities in care-plan use and, therefore, opportunities to improve the distribution of SCPs. Further validation in additional cohorts of survivors is necessary to confirm these conclusions. Cancer 2017. © 2017 American Cancer Society. © 2017 American Cancer Society.

  12. An Internet Tool for Creation of Cancer Survivorship Care Plans for Survivors and Health Care Providers: Design, Implementation, Use and User Satisfaction

    PubMed Central

    Vachani, Carolyn; Hampshire, Margaret K; Jacobs, Linda A; Metz, James M

    2009-01-01

    Background Survivorship care plans have been recommended by the Institute of Medicine for all cancer survivors. We implemented an Internet-based tool for creation of individualized survivorship care plans. To our knowledge, this is the first tool of this type to be designed and made publicly accessible. Objective To investigate patterns of use and satisfaction with an Internet-based tool for creation of survivorship care plans. Methods OncoLife, an Internet-based program for creation of survivorship care plans, was designed by a team of dedicated oncology nurses and physicians at the University of Pennsylvania. The program was designed to provide individualized, comprehensive health care recommendations to users responding to queries regarding demographics, diagnosis, and cancer treatments. After being piloted to test populations, OncoLife was made publicly accessible via Oncolink, a cancer information website based at the University of Pennsylvania which averages 3.9 million page views and over 385,000 unique visits per month. Data entered by anonymous public users was maintained and analyzed. Results From May 2007 to November 2008, 3343 individuals utilized this tool. Most (63%) identified themselves as survivors, but also health care providers (25%) and friends/family of survivors (12%). Median age at diagnosis was 48 years (18 - 100+), and median current age 51 (19 - 100+). Most users were Caucasian (87%), female (71%), and college-educated (82%). Breast cancer was the most common diagnosis (46%), followed by hematologic (12%), gastrointestinal (11%), gynecologic (9%), and genitourinary (8%). Of all users, 84% had undergone surgery, 80% chemotherapy, and 60% radiotherapy. Half of users (53%) reported receiving follow-up care from only an oncologist, 13% only a primary care provider (PCP), and 32% both; 12% reported having received survivorship information previously. Over 90% of users, both survivors and health care providers, reported satisfaction levels of

  13. Head and Neck Cancer Survivorship Care Guideline: American Society of Clinical Oncology Clinical Practice Guideline Endorsement of the American Cancer Society Guideline.

    PubMed

    Nekhlyudov, Larissa; Lacchetti, Christina; Davis, Nancy B; Garvey, Thomas Q; Goldstein, David P; Nunnink, J Chris; Ninfea, Jose I Ruades; Salner, Andrew L; Salz, Talya; Siu, Lillian L

    2017-02-27

    Purpose This guideline provides recommendations on the management of adults after head and neck cancer (HNC) treatment, focusing on surveillance and screening for recurrence or second primary cancers, assessment and management of long-term and late effects, health promotion, care coordination, and practice implications. Methods ASCO has a policy and set of procedures for endorsing clinical practice guidelines that have been developed by other professional organizations. The American Cancer Society (ACS) HNC Survivorship Care Guideline was reviewed for developmental rigor by methodologists. An ASCO Expert Panel reviewed the content and recommendations, offering modifications and/or qualifying statements when deemed necessary. Results The ASCO Expert Panel determined that the ACS HNC Survivorship Care Guideline, published in 2016, is clear, thorough, clinically practical, and helpful, despite the limited availability of high-quality evidence to support many of the recommendations. ASCO endorsed the ACS HNC Survivorship Care Guideline, adding qualifying statements aimed at promoting team-based, multispecialty, multidisciplinary, collaborative head and neck survivorship care. Recommendations The ASCO Expert Panel emphasized that caring for HNC survivors requires a team-based approach that includes primary care clinicians, oncology specialists, otolaryngologists, dentists, and other allied professionals. The HNC treatment team should educate the primary care clinicians and patients about the type(s) of treatment received, the likelihood of potential recurrence, and the potential late and long-term complications. Primary care clinicians should recognize symptoms of recurrence and coordinate a prompt evaluation. They should also be prepared to manage late effects either directly or by referral to appropriate specialists. Health promotion is critical, particularly regarding tobacco cessation and dental care. Additional information is available at www.asco.org/HNC-Survivorship

  14. Development and Implementation of an Internet-Based Survivorship Care Program for Cancer Survivors Treated with Hematopoietic Stem Cell Transplantation

    PubMed Central

    Syrjala, Karen L.; Stover, Allison C.; Yi, Jean C.; Artherholt, Samantha B.; Romano, Eleni M.; Schoch, Gary; Stewart, Susan; Flowers, Mary E.D.

    2011-01-01

    Introduction The internet provides a widely accessible modality for meeting survivorship care needs of cancer survivors. In this paper we describe the development and implementation of an internet site designed as a base from which to conduct a randomized controlled trial to meet psycho-educational needs of hematopoietic stem cell transplantation (HSCT) survivors. Methods A cross-disciplinary team designed, wrote content and programmed an internet site for online study registration, consent, assessment, and study implementation. All 3–18 year survivors of HSCT for hematologic malignancy treated at one transplant center were approached by mail for participation. All study activities could be conducted without study staff contact. However, participants had options for phone or email contact with study staff as desired. Results Of 1775 participants approached for the study, 775 (58% of those eligible) consented and completed baseline assessment. Mean age was 51.7 (SD=12.5, age range 18–79), with 56% male. 57% required staff contact one or more times; a majority were for minor technical issues or delays in completion of enrollment or baseline assessment. Discussions/Conclusions This study demonstrated the potential for providing internet-based survivorship care to long-term survivors of HSCT. Although building a survivorship internet site requires a team with diverse expertise, once built, these resources can be implemented rapidly with large numbers of survivors. Implications for Cancer Survivors While internet-based services will not meet all the needs of cancer survivors, this methodology represents an important modality for augmenting onsite clinical services as a method for meeting psycho-educational, information and resource needs of cancer survivors. PMID:21544671

  15. Comprehensive survivorship care with cost and revenue analysis.

    PubMed

    Rosales, Alicia R; Byrne, Dia; Burnham, Christa; Watts, Lori; Clifford, Kathleen; Zuckerman, Dan S; Beck, Thomas

    2014-03-01

    The 2015 Commission on Cancer standards require that cancer survivors receive an individualized survivorship care plan (SCP). To meet this new standard, St Luke's Mountain States Tumor Institute (MSTI), with support from the National Community Cancer Centers Program, implemented a successful survivorship model. At MSTI, the patient's SCP is prepared in the electronic health record by a registered health information technician. This document is reviewed during an appointment with a nurse practitioner and social worker. The provider's dictation is mailed to the primary care physician with the SCP. From August 2011 to Oct 2012, 118 patients with breast cancer were seen for survivorship appointments. Medical record audit and follow-up telephone call were completed to evaluate patient survivorship needs and satisfaction with the appointment. Patient accounts were reviewed for reimbursement. From medical record review, the most common patient concerns were weight management (35%), fatigue (30%), sexuality (27%), anxiety (23%), caregiver stress (17%), and depression (16%). Telephone calls showed high patient satisfaction and understanding. Patients rated the following statements on a Likert scale from 1 (strongly disagree) to 5 (strongly agree): I understand my treatment summary and care plan (88% strongly agree or agree), and I feel the survivorship visit met my survivorship needs (86% strongly agree or agree). At 1 month, 80% of participants were still working on wellness goals. Patient accounts analysis showed revenue covered costs. Survivorship care at MSTI meets new standards, allows for patient engagement and satisfaction, and improves care coordination. Costs are covered by reimbursement.

  16. Functional Deficits and Quality of Life Among Cancer Survivors: Implications for Occupational Therapy in Cancer Survivorship Care.

    PubMed

    Hwang, Eric J; Lokietz, Nicole C; Lozano, Rachel L; Parke, Megan A

    2015-01-01

    This study aimed to explore functional deficits and perceived quality of life (QoL) among cancer survivors. Sixty-six participants completed the Post Cancer Outcome Survey developed for the purpose of this study. The results indicated (1) modest to moderate degrees of functional deficits in 28 of the 70 items measuring areas of occupation, performance skills, body functions, and psychosocial well-being within the first year after cancer treatment; (2) significantly lower perceived QoL during the first year of survivorship compared with that before diagnosis, at present, and 5 yr hereafter (p < .001); (3) significant moderate negative correlations between the reported functional deficits and QoL (rs = -.45 to -.57); and (4) a very low percentage of participants (4.5%) receiving occupational therapy during the first year posttreatment. Functional difficulties and compromised QoL identified in this study indicate the need for occupational therapy among cancer survivors. Increasing clients' awareness of occupational therapy for postcancer care is also suggested.

  17. Development and implementation of an Internet-based survivorship care program for cancer survivors treated with hematopoietic stem cell transplantation.

    PubMed

    Syrjala, Karen L; Stover, Allison C; Yi, Jean C; Artherholt, Samantha B; Romano, Eleni M; Schoch, Gary; Stewart, Susan; Flowers, Mary E D

    2011-09-01

    The Internet provides a widely accessible modality for meeting survivorship care needs of cancer survivors. In this paper, we describe the development and implementation of an Internet site designed as a base from which to conduct a randomized controlled trial to meet psycho-educational needs of hematopoietic stem cell transplantation (HSCT) survivors. A cross-disciplinary team designed, wrote content, and programmed an Internet site for online study registration, consent, assessment, and study implementation. All survivors who were 3-18 years after HSCT for hematologic malignancy and treated at one transplant center were approached by mail for participation. All study activities could be conducted without study staff contact. However, participants had options for phone or email contact with study staff as desired. Of 1,775 participants approached for the study, 775 (58% of those eligible) consented and completed baseline assessment. Mean age was 51.7 (SD, 12.5; age range, 18-79 years), with 56% male. Fifty-seven percent required staff contact one or more times; a majority were for minor technical issues or delays in completion of enrollment or baseline assessment. This study demonstrated the potential for providing Internet-based survivorship care to long-term survivors of HSCT. Although building a survivorship Internet site requires a team with diverse expertise, once built, these resources can be implemented rapidly with large numbers of survivors. While Internet-based services will not meet all the needs of cancer survivors, this methodology represents an important modality for augmenting onsite clinical services as a method for meeting psycho-educational, information, and resource needs of cancer survivors.

  18. The unmet supportive care needs of long-term head and neck cancer caregivers in the extended survivorship period.

    PubMed

    Balfe, Myles; O'Brien, Katie; Timmons, Aileen; Butow, Phyllis; O' Sullivan, Eleanor; Gooberman-Hill, Rachael; Sharp, Linda

    2016-06-01

    To examine the unmet supportive care needs of long-term head and neck cancer caregivers, and the factors associated with those needs. Research on the unmet needs of head and neck cancer caregivers is lacking, particularly in the long-term survivorship period. Survey of 197 caregivers. The study collected information on caregivers' demographic characteristics and their unmet supportive care needs (as measured by the Partners and Caregivers Supportive Care Needs Survey). An overall score of unmet need was generated, as were scores for four separate domains of unmet needs (emotional, health, information and work/social). Seventy six percentage of respondents were female, and 88% reported being married or living with a partner. Mean age was 57 years. Most caregivers had low levels of unmet needs. Managing fears about the cancer recurring was the most commonly reported individual need, described by slightly more than one in five respondents. The highest levels of need were located in the emotional and the health services domains. Loneliness and financial stress were consistently and significantly associated with high levels of unmet need in the multivariable analysis. Most head and neck cancer caregivers appear to have low levels of unmet need in the extended survivorship period. The greatest levels of unmet need that are experienced occur in relation to emotional and health service domains. Needs diminish over time. Health professionals should be aware that a minority of long-term head and neck caregivers continue to experience strong fears of cancer recurrence. To reduce unmet needs across multiple domains, health professionals should seek to reduce caregivers' feelings of loneliness, and to assist caregivers to reduce the financial burdens that they experience as a result of long-term caring. © 2016 John Wiley & Sons Ltd.

  19. Cancer survivorship and sexual orientation.

    PubMed

    Boehmer, Ulrike; Miao, Xiaopeng; Ozonoff, Al

    2011-08-15

    Lesbian, gay, and bisexual populations are not part of cancer surveillance, resulting in scarce information about the cancer survivorship of these populations. To address this information gap, the authors examined the prevalence of cancer survivorship by sexual orientation and cancer survivors' self-reported health by sexual orientation. The authors explored these issues by analyzing pooled data from the California Health Interview survey from 2001, 2003, and 2005. By using descriptive statistics and logistic regressions, they examined the cancer prevalence in men and women by sexual orientation and subsequently compared the self-reported health of male and female cancer survivors by sexual orientation. Among women, the authors found no significant differences in cancer prevalence by sexual orientation, but lesbian and bisexual female cancer survivors had 2.0 and 2.3× the odds of reporting fair or poor health compared with heterosexual female cancer survivors. Among men, we found significant differences in cancer prevalence, with gay men having 1.9× the odds of reporting a cancer diagnosis compared with heterosexual men. There were no differences by sexual orientation in male cancer survivors' self-reported health. Our novel findings suggest sex differences in the impact of cancer on lesbian, gay, and bisexual cancer survivors. Lesbian and bisexual cancer survivors need to be targeted by programs and services to assist these cancer survivors in improving their health perceptions, whereas healthcare providers and public health agencies need to be made aware of the higher prevalence of cancer in gay men to prevent future cancers through increased screening and primary prevention. Copyright © 2011 American Cancer Society.

  20. Rethinking assumptions about cancer survivorship.

    PubMed

    Ristovski-Slijepcevic, Svetlana; Bell, Kirsten

    2014-01-01

    A growing body of research informed by theories and methods in the social sciences and humanities indicates that certain problematic messages are commonly embedded in popular and oncological representations of cancer. Becoming more aware of these underlying messages has the potential to improve the ways clinicians think about and manage cancer. (Note: A written response to this article appears in Truant, Kohli, & Stephens (2014), Response to "Rethinking Assumptions about Cancer Survivorship": A Nursing Disciplinary Perspective, Canadian Oncology Nursing Journal, Vol. 24, Issue 3, p. 169).

  1. Breast Cancer Survivorship: Why, What and When?

    PubMed

    Gass, Jennifer; Dupree, Beth; Pruthi, Sandhya; Radford, Diane; Wapnir, Irene; Antoszewska, Reza; Curtis, Audrey; Johnson, Nathalie

    2016-10-01

    Survivorship medicine is fairly new in the realm of oncology. As we broaden our focus from treatment and prevention to include survivorship there is substantial opportunity to enhance the care of the patient. Important in successful management of recovery after cancer treatment is managing the side effects of therapy and improving quality of life. This ranges from sexual dysfunction, depression to lymphedema. Guideline-based surveillance after treatment with clear communication of care plans to the patient and their providers, especially primary care, is paramount. Thoughtful pre-surgical treatment planning, which may include neoadjuvant approaches or consideration of fertility preservation, results in superior long-term patient outcomes. Understanding the importance of the teachable moment in effecting behavioral and lifestyle changes that reduce risk of recurrence is also an essential component of excellent cancer survivor patient care. We identified the following areas for focus as they represent the key areas for accreditation and patient driven needs. Development of survivorship plans, post treatment surveillance, sexuality and fertility preservation, lymphedema management and risk reduction lifestyle and behavioral changes.

  2. Supportive care after curative treatment for breast cancer (survivorship care): resource allocations in low- and middle-income countries. A Breast Health Global Initiative 2013 consensus statement.

    PubMed

    Ganz, Patricia A; Yip, Cheng Har; Gralow, Julie R; Distelhorst, Sandra R; Albain, Kathy S; Andersen, Barbara L; Bevilacqua, Jose Luiz B; de Azambuja, Evandro; El Saghir, Nagi S; Kaur, Ranjit; McTiernan, Anne; Partridge, Ann H; Rowland, Julia H; Singh-Carlson, Savitri; Vargo, Mary M; Thompson, Beti; Anderson, Benjamin O

    2013-10-01

    Breast cancer survivors may experience long-term treatment complications, must live with the risk of cancer recurrence, and often experience psychosocial complications that require supportive care services. In low- and middle-income settings, supportive care services are frequently limited, and program development for survivorship care and long-term follow-up has not been well addressed. As part of the 5th Breast Health Global Initiative (BHGI) Global Summit, an expert panel identified nine key resources recommended for appropriate survivorship care, and developed resource-stratified recommendations to illustrate how health systems can provide supportive care services for breast cancer survivors after curative treatment, using available resources. Key recommendations include health professional education that focuses on the management of physical and psychosocial long-term treatment complications. Patient education can help survivors transition from a provider-intense cancer treatment program to a post-treatment provider partnership and self-management program, and should include: education on recognizing disease recurrence or metastases; management of treatment-related sequelae, and psychosocial complications; and the importance of maintaining a healthy lifestyle. Increasing community awareness of survivorship issues was also identified as an important part of supportive care programs. Other recommendations include screening and management of psychosocial distress; management of long-term treatment-related complications including lymphedema, fatigue, insomnia, pain, and women's health issues; and monitoring survivors for recurrences or development of second primary malignancies. Where possible, breast cancer survivors should implement healthy lifestyle modifications, including physical activity, and maintain a healthy weight. Health professionals should provide well-documented patient care records that can follow a patient as they transition from active treatment

  3. The menopause specialist and breast cancer survivorship.

    PubMed

    Marsden, Jo

    2016-09-15

    Due to improvement in survival rates, breast cancer is the most prevalent female malignancy in Europe and hence the management of breast cancer survivorship is garnering significant attention. Most of the health issues associated with treatment result from iatrogenic estrogen deficiency and recognition of this in the recent National Institute for Health and Care Excellence (NICE) menopause guidance has resulted in the recommendation for referral of breast cancer patients to menopause specialists for appropriate counselling about and management of early menopause, estrogen deficiency symptoms and lifestyle risk modification. The latter has significant implications for both all-cause and breast cancer-specific mortality. Extending the role of health professionals with an interest in menopause to provide such service for breast cancer patients is necessary as this is not within the remit or expertise of specialist breast cancer teams; however it will in turn, require menopause specialists to expand and regularly update their knowledge of breast cancer and its treatment.

  4. A patient-centered perspective on cancer survivorship.

    PubMed

    Zebrack, Brad

    2015-04-15

    Survivorship is a complicated notion because people often confuse a process of survivorship with a mythic identity of being a cancer survivor. This confusion may be a distraction to addressing the real-life struggles and challenges experienced by all people diagnosed with cancer. A more expansive perspective of survivorship, one that attends to patients' physical, psychological, social, spiritual, and existential challenges throughout a continuum of care, would be more in line with what is known empirically about people's experiences with cancer. In an effort to gain a patient-centered perspective on cancer, and one that emphasizes multiple dimensions of cancer survivorship, the author reports findings from a non-scientific social media poll (via Facebook and personal emails) in which survivors and colleagues working in the field of cancer survivorship answered the question: What does cancer survivorship mean to you? The comments are enlightening and useful for guiding the development of a patient-centered, and, thus, more comprehensive, approach to caring for people affected by cancer.

  5. Towards developing a bilingual treatment summary and survivorship care plan responsive to Spanish language preferred breast cancer survivors.

    PubMed

    Ashing, Kimlin; Serrano, Mayra; Weitzel, Jeffery; Lai, Lily; Paz, Benjamin; Vargas, Roberto

    2014-12-01

    Treatment summary and survivorship care plan studies are at the forefront of research priorities with precedence for ethnic minority inclusion. This preliminary study joined the advocacy, scientific, and medical communities to inform the development and evaluation of the Treatment Summary and Survivorship Care Plan (TSSCP-S) template targeted for Latino breast cancer patients (LCA). The development of the TSSCP-S began as modifications to the American Society of Cancer Oncology (ASCO) (TSSCP-ASCO) template via a transcreation process informed by 12 LCA survivors/advocates, and evaluated by 10 survivor/advocates and health professionals. The TSSCP-S template development was guided by the Shared Care, Psychooncology Models, and Contextual Model of Health Related Quality of Life. The bilingual TSSCP-S was independently evaluated by bilingual, survivor/advocates, and health professionals (n = 10). Preliminary analyses indicate that the TSSCP-S template was rated more favorably than the TSSCP-ASCO on the following domains: content (p = 0.02), clarity (p = 0.02), utility (p = 0.04), cultural and linguistic responsiveness (p = 0.03), and socioecological responsiveness (p = 0.01). Evaluators noted that the TSSCP-S template was more patient-centered, and endorsed the acceptability as well as the potential utility and applicability of the bilingual TSSCP-S template to appropriately guide surveillance and follow-up care. Our findings indicate that the TSSCP-S achieved clinical, cultural, and linguistic responsiveness relevant to Latinos. Patient-centered TSSCP that are presented in a bilingual format are necessary to achieve the intended goals of TSSCP including appropriate patient information, education, and resources pertaining to their treatment, potential side effects, and recommended surveillance and follow-up care for English language limited patients. Additionally, our culturally responsive TSSCP-S development framework offers a model for TSSCP

  6. Building a Shared Vision for an Online Cancer Survivorship Community

    PubMed Central

    Weiss, Jacob B.; Lorenzi, Nancy M.

    2009-01-01

    In order to achieve comprehensive, closed-loop care for cancer survivors, new strategies are needed to bring together patients, providers, and support services in local communities. To address this challenge, an online community for cancer survivorship was envisioned and designed collaboratively by cancer survivors, family members, community professionals, and informatics researchers in middle Tennessee. The vision developed by the community members serves as a foundation for medical informatics systems to build capacity in local communities to improve cancer care and social support. Using ecological systems theory and social capital as theoretical frameworks, key themes are identified for the future of communication and collaboration in cancer survivorship. PMID:20351942

  7. Recovery issues in cancer survivorship: a new challenge for supportive care.

    PubMed

    Alfano, Catherine M; Rowland, Julia H

    2006-01-01

    The growing population of cancer survivors represents a clear challenge to clinicians and researchers to look beyond the search for a cure and to address the multifaceted needs of those living with and beyond a cancer diagnosis. Common sequelae that disrupt the psychosocial aspects of life for adult cancer survivors after primary treatment include: fatigue; cognitive changes; body image; sexual health and functioning; infertility; fear of recurrence; PTSD and stress syndromes; family/caregiver distress; socioeconomic issues; and distress, anxiety, and depression. Psychosocial interventions, particularly group-based interventions and physical activity programs, have shown great promise in improving these outcomes. Future research will identify even better targeted, more efficacious, and more cost effective programs and disseminate them into cancer care settings. Healthcare providers must realize that they serve as vital gatekeepers to services that will help optimize cancer survivors' psychosocial as well as physical outcomes. Addressing these issues in the post-treatment period represents the new challenge to supportive care.

  8. Facilitating Survivorship Program Development for Health Care Providers and Administrators

    PubMed Central

    Grant, Marcia; Economou, Denice; Ferrell, Betty; Uman, Gwen

    2014-01-01

    Purpose This manuscript will describe institutional changes observed through goal analysis that occurred following a multidisciplinary education project, aimed at preparing healthcare professionals to meet the needs of the growing numbers of cancer survivors. Method Post course evaluations consisted of quantitative questionnaires and follow up on three goals created by each participating team, during the 3-day educational program. Evaluations were performed 6, 12 and 18 months-post course for percent of goal achievement. Goals were, a priori coded based on the Institute of Medicine’s survivorship care components, along with 2 additional codes related to program development and education. Results Two hundred and four teams participated over the 4 yearly courses. A total of 51.6% of goals were related to program development, 21% to survivorship care interventions, 20.9% on educational goals, and only 4.7% related to coordination of care, 1.4% on surveillance, and 0.4% related to prevention-focused goals. Quantitative measures post course showed significant changes in comfort and effectiveness in survivorship care in the participating institutions. Conclusion During the period 2006–2009, healthcare institutions focused on developing survivorship care programs and educating staff, in an effort to prepare colleagues to provide and coordinate survivorship care, in cancer settings across the country. Implications Goal-directed education provided insight into survivorship activities occurring across the nation. Researchers were able to identify survivorship care programs and activities, as well as the barriers to developing these programs. This presented opportunities to discuss possible interventions to improve follow-up care and survivors’ quality of life. PMID:25216608

  9. Health information needs and preferences in relation to survivorship care plans of long-term cancer survivors in the American Cancer Society's Study of Cancer Survivors-I

    PubMed Central

    Ferrucci, Leah M.; McCorkle, Ruth; Stein, Kevin D.; Cannady, Rachel; Sanft, Tara; Cartmel, Brenda

    2016-01-01

    Purpose Survivorship care plans (SCPs) provide cancer patients and health care providers with a treatment summary and outline of recommended medical follow-up. Few studies have investigated the information needs and preferred sources among long-term cancer survivors. Methods Cancer survivors of the ten most common cancers enrolled in the longitudinal Study of Cancer Survivors-I (SCS-I) completed a survey 9 years post-diagnosis (n = 3138); at time of diagnosis of the SCS-I cohort, SCPs were not considered usual care. We assessed participants' current desire and preferred sources for information across ten SCP items and evaluated factors associated with information need 9 years after diagnosis. Results The proportion of long-term cancer survivors endorsing a need for cancer and health information 9 years post-diagnosis ranged from 43 % (cancer screening) to 9 % (consequences of cancer on ability to work). Print media and personalized reading materials were the most preferred information sources. Younger age, higher education, race other than non-Hispanic white, later cancer stage, having breast cancer, having ≥2 comorbidities, and self-reporting poor health were associated with greater informational need (p < 0.05). Conclusions/Implications for Cancer Survivors Long-term cancer survivors continue to report health information needs for most SCP items and would prefer a print format; however, level of need differs by socio-demographic and cancer characteristics. Cancer survivors who did not previously receive a SCP may still benefit from receiving SCP content, and strategies for enabling dissemination to long-term survivors warrant further investigation. PMID:26744339

  10. Survivorship Care Plan in Promoting Physical Activity in Breast or Colorectal Cancer Survivors in Wisconsin

    ClinicalTrials.gov

    2017-05-01

    Cancer Survivor; Healthy Subject; Stage I Colorectal Cancer; Stage IA Breast Cancer; Stage IB Breast Cancer; Stage IIA Breast Cancer; Stage IIA Colorectal Cancer; Stage IIB Breast Cancer; Stage IIB Colorectal Cancer; Stage IIC Colorectal Cancer; Stage IIIA Breast Cancer; Stage IIIA Colorectal Cancer; Stage IIIB Breast Cancer; Stage IIIB Colorectal Cancer; Stage IIIC Breast Cancer; Stage IIIC Colorectal Cancer

  11. Development of a text messaging system to improve receipt of survivorship care in adolescent and young adult survivors of childhood cancer.

    PubMed

    Casillas, Jacqueline; Goyal, Anju; Bryman, Jason; Alquaddoomi, Faisal; Ganz, Patricia A; Lidington, Emma; Macadangdang, Joshua; Estrin, Deborah

    2017-08-01

    This study aimed to develop and examine the acceptability, feasibility, and usability of a text messaging, or Short Message Service (SMS), system for improving the receipt of survivorship care for adolescent and young adult (AYA) survivors of childhood cancer. Researchers developed and refined the text messaging system based on qualitative data from AYA survivors in an iterative three-stage process. In stage 1, a focus group (n = 4) addressed acceptability; in stage 2, key informant interviews (n = 10) following a 6-week trial addressed feasibility; and in stage 3, key informant interviews (n = 23) following a 6-week trial addressed usability. Qualitative data were analyzed using a constant comparative analytic approach exploring in-depth themes. The final system includes programmed reminders to schedule and attend late effect screening appointments, tailored suggestions for community resources for cancer survivors, and messages prompting participant feedback regarding the appointments and resources. Participants found the text messaging system an acceptable form of communication, the screening reminders and feedback prompts feasible for improving the receipt of survivorship care, and the tailored suggestions for community resources usable for connecting survivors to relevant services. Participants suggested supplementing survivorship care visits and forming AYA survivor social networks as future implementations for the text messaging system. The text messaging system may assist AYA survivors by coordinating late effect screening appointments, facilitating a partnership with the survivorship care team, and connecting survivors with relevant community resources. The text messaging system has the potential to improve the receipt of survivorship care.

  12. Survivorship Care Planning in Patients With Colorectal or Non-Small Cell Lung Cancer

    ClinicalTrials.gov

    2013-12-16

    Stage I Colon Cancer; Stage I Rectal Cancer; Stage IA Non-small Cell Lung Cancer; Stage IB Non-small Cell Lung Cancer; Stage IIA Colon Cancer; Stage IIA Non-small Cell Lung Cancer; Stage IIA Rectal Cancer; Stage IIB Colon Cancer; Stage IIB Non-small Cell Lung Cancer; Stage IIB Rectal Cancer; Stage IIC Colon Cancer; Stage IIC Rectal Cancer; Stage IIIA Colon Cancer; Stage IIIA Non-small Cell Lung Cancer; Stage IIIA Rectal Cancer; Stage IIIB Colon Cancer; Stage IIIB Non-small Cell Lung Cancer; Stage IIIB Rectal Cancer; Stage IIIC Colon Cancer; Stage IIIC Rectal Cancer

  13. Survivorship Care Planning in Improving Quality of Life in Survivors of Ovarian Cancer

    ClinicalTrials.gov

    2017-02-19

    Cancer Survivor; Stage IA Ovarian Epithelial Cancer; Stage IB Ovarian Epithelial Cancer; Stage IC Ovarian Epithelial Cancer; Stage IIA Ovarian Epithelial Cancer; Stage IIB Ovarian Epithelial Cancer; Stage IIC Ovarian Epithelial Cancer; Stage IIIA Ovarian Epithelial Cancer; Stage IIIB Ovarian Epithelial Cancer; Stage IIIC Ovarian Epithelial Cancer

  14. Multilingual Self-Management Resources for Prostate Cancer Survivors and Their Partners: Results of a Long-Term Academic-State Health Department Partnership to Promote Survivorship Care.

    PubMed

    Skolarus, Ted A; Ragnoni, Jennifer A; Garlinghouse, Carol; Schafenacker, Ann; Webster, Debbie; Hager, Polly; Wittmann, Daniela; Northouse, Laurel

    2017-06-23

    There is increasing need for innovative, sustainable ways to provide evidence-based self-management information and supportive care for prostate cancer survivors and their partners. For these reasons, we describe how an academic-public partnership facilitated the broad dissemination of evidence-based, multilingual survivorship educational materials via a state-managed prostate cancer website. We outline the steps of an academic-public partnership leading to dissemination of online, survivorship materials as a resource for prostate cancer survivors and their partners. We examined the 5-year utilization of the materials from January 2011 through December 2015 according to 14 content areas (e.g., urinary, bowel, and sexual problems, fatigue, communication, cancer stress) and across three languages (English, Spanish, Arabic). The total number of prostate cancer survivorship materials downloaded from January 2011 through December 2015 was 89,348. The number of downloaded materials increased over time from 6,421 in 2011 to 17,496 in 2015. The most commonly downloaded content area was Urine Problems (27.5%), followed by Bowel Problems (23.4%) and Sexual Side Effects (16.2%). The majority of downloaded material was in English (86.3%), followed by Spanish (9.8%) and Arabic (3.9%). The academic-public partnership facilitated broad dissemination of evidence-based informational materials for prostate cancer survivors and their partners via a state-managed website from 2011 through 2015. Given the increasing role of academic-public partnerships in funding and development of robust, sustainable prostate cancer survivorship resources, this work serves as an introduction to these evidence-based materials and highlights a successful model of engagement between practitioners, research scientists, and public health administration. Copyright © 2017. Published by Elsevier Inc.

  15. Cancer treatment and survivorship statistics, 2016.

    PubMed

    Miller, Kimberly D; Siegel, Rebecca L; Lin, Chun Chieh; Mariotto, Angela B; Kramer, Joan L; Rowland, Julia H; Stein, Kevin D; Alteri, Rick; Jemal, Ahmedin

    2016-07-01

    The number of cancer survivors continues to increase because of both advances in early detection and treatment and the aging and growth of the population. For the public health community to better serve these survivors, the American Cancer Society and the National Cancer Institute collaborate to estimate the number of current and future cancer survivors using data from the Surveillance, Epidemiology, and End Results cancer registries. In addition, current treatment patterns for the most prevalent cancer types are presented based on information in the National Cancer Data Base and treatment-related side effects are briefly described. More than 15.5 million Americans with a history of cancer were alive on January 1, 2016, and this number is projected to reach more than 20 million by January 1, 2026. The 3 most prevalent cancers are prostate (3,306,760), colon and rectum (724,690), and melanoma (614,460) among males and breast (3,560,570), uterine corpus (757,190), and colon and rectum (727,350) among females. More than one-half (56%) of survivors were diagnosed within the past 10 years, and almost one-half (47%) are aged 70 years or older. People with a history of cancer have unique medical and psychosocial needs that require proactive assessment and management by primary care providers. Although there are a growing number of tools that can assist patients, caregivers, and clinicians in navigating the various phases of cancer survivorship, further evidence-based resources are needed to optimize care. CA Cancer J Clin 2016;66:271-289. © 2016 American Cancer Society. © 2016 American Cancer Society, Inc.

  16. The Meaning of Survivorship as Defined by African American Breast Cancer Survivors.

    PubMed

    Davis, Claudia M; Myers, Hector F; Nyamathi, Adeline M; Lewis, MaryAnn; Brecht, Mary-Lynn

    2016-05-01

    While there is an abundance of cancer survivorship research among various racial/ethnic groups, there is a paucity of research on survivors of African descent. To date, the meaning of survivorship has not been reported exclusively among African American breast cancer survivors (AABCS). The purpose was to describe and understand the meaning of survivorship among community-dwelling AABCS, mostly recruited from breast cancer support groups. Using a qualitative descriptive approach, an open-ended questionnaire explored the meaning of survivorship among 155 AABCS. An analysis of the content was performed. Among AABCS, survivorship meant having a strong spiritual base, thriving, being resilient, and being altruistic. The survivors self-identified with and embraced the termsurvivor. These results provide an important understanding of the perspectives and meaning of survivorship among AABCS and may assist in developing cancer survivorship care plans that are relevant, responsive, patient centered, and culturally appropriate. © The Author(s) 2014.

  17. Dialogues on cancer survivorship: a new model of international cooperation.

    PubMed

    Stein, Kevin; Mattioli, Vittorio

    2013-06-01

    The authors describe the rationale and background of the present supplement to Cancer intended to stimulate a dialogue among researchers from Europe and North America regarding important issues faced by cancer survivors. Through jointly written articles addressing various aspects of cancer survivorship, each manuscript reports on the similarities, disparities, and problems viewed from the point of view of each author's respective continent. The supplement is meant to create a springboard for increased collaboration and aid in the development of a shared care model to improve the quality of cancer care, both during and after the completion of primary treatment. We hope that this effort may represent a new model of international cooperation, which is fruitful not only for the field of scientific research but also for identifying and sharing new approaches to the care and management of cancer survivorship issues, ultimately bringing improvements to quality of life of the growing population of cancer survivors. Copyright © 2013 American Cancer Society.

  18. Cancer research network: using integrated healthcare delivery systems as platforms for cancer survivorship research.

    PubMed

    Nekhlyudov, Larissa; Greene, Sarah M; Chubak, Jessica; Rabin, Borsika; Tuzzio, Leah; Rolnick, Sharon; Field, Terry S

    2013-03-01

    Much progress has been made in cancer survivorship research, but there are still many unanswered questions that can and need to be addressed by collaborative research consortia. Since 1999, the National Cancer Institute-funded HMO Cancer Research Network (CRN) has engaged in a wide variety of research focusing on cancer survivorship. With a focus on thematic topics in cancer survivorship, we describe how the CRN has contributed to research in cancer survivorship and the resources it offers for future collaborations. We identified the following areas of cancer survivorship research: surveillance for and predictors of recurrences, health care delivery and care coordination, health care utilization and costs, psychosocial outcomes, cancer communication and decision making, late effects of cancer and its treatment, use of and adherence to adjuvant therapies, and lifestyle and behavioral interventions following cancer treatment. With over a decade of experience using cancer data in community-based settings, the CRN investigators and their collaborators are poised to generate evidence in cancer survivorship research. Collaborative research within these settings can improve the quality of care for cancer survivors within and beyond integrated health care delivery systems.

  19. Evaluating a nurse-led survivorship care package (SurvivorCare) for bowel cancer survivors: study protocol for a randomized controlled trial

    PubMed Central

    2013-01-01

    Background Colorectal cancer (CRC) is the most common cancer affecting both men and women in Australia. The illness and related treatments can cause distressing adverse effects, impact on emotional and psychological well-being, and adversely affect social, occupational and relationship functioning for many years after the end of treatment or, in fact, lifelong. Current models of follow-up fail to address the complex needs arising after treatment completion. Strategies to better prepare and support survivors are urgently required. We previously developed a nurse-led supportive care program (SurvivorCare) and tested it in a pilot study involving 10 CRC survivors. The intervention was found to be highly acceptable, appropriate, relevant and useful. Methods/design This study is a multisite, randomised controlled trial, designed to assess the impact of the addition of the SurvivorCare intervention to usual post-treatment care, for people with potentially cured CRC. SurvivorCare comprises the provision of survivorship educational materials, a tailored survivorship care plan, an individually tailored nurse-led, face-to-face end of treatment consultation and three subsequent telephone calls. Eligible patients have completed treatment for potentially cured CRC. Other eligibility criteria include stage I to III disease, age greater than 18 years and adequate understanding of English. All consenting patients complete questionnaires at three time points over a six-month period (baseline, two and six months). Measures assess psychological distress, unmet needs and quality of life. Discussion This supportive care package has the potential to significantly reduce individual suffering, whilst reducing the burden of follow-up on acute cancer services through enhanced engagement with and utilisation of general practitioners and community based services. If the intervention is successful in achieving the expected health benefits, it could be disseminated readily. All training and

  20. Partner's survivorship care needs: An analysis in head and neck cancer patients.

    PubMed

    Giuliani, Meredith; Milne, Robin; McQuestion, Maurene; Sampson, Lorna; Le, Lisa W; Jones, Jennifer; Cheng, Terry; Waldron, John; Ringash, Jolie

    2017-08-01

    To determine the number, type and predictors of unmet needs for head and neck cancer (HNC) survivors' partner's. Partners of HNC patients were invited to complete the Cancer Survivors' Partners Unmet Needs Survey (CaSPUN). Analysis determined number, proportion and factors associated with greater unmet needs using linear regression. Agreement between the unmet needs of patients and their partners was determined. Among the 44 partners participated 29 reported ≥1 unmet need and 4 had a very high number of needs (31-35). The most common unmet needs were related to concerns about cancer returning, coping with supporting someone with cancer, and the changes cancer has caused. The highest reported needs were in the Relationships domain. Increasing patient unmet needs was significantly associated with increasing partner unmet needs (p<0.01). A significant proportion of head and neck cancer partners experience unmet needs, which often differ from the patient's needs. Copyright © 2017 Elsevier Ltd. All rights reserved.

  1. ReCAP: ASCO Core Curriculum for Cancer Survivorship Education.

    PubMed

    Shapiro, Charles L; Jacobsen, Paul B; Henderson, Tara; Hurria, Arti; Nekhlyudov, Larissa; Ng, Andrea; Surbone, Antonella; Mayer, Deborah K; Rowland, Julia H; Shapiro, Charles L; Jacobsen, Paul B; Henderson, Tara; Hurria, Arti; Nekhlyudov, Larissa; Ng, Andrea; Surbone, Antonella; Mayer, Deborah K; Rowland, Julia H

    2016-02-01

    The number of cancer survivors is increasing exponentially. Currently there about 15 million cancer survivors, and by 2025, there will be nearly 20 million. Who will provide survivorship care, what are evidenced-based or best care practices, what are best methods to disseminate this information and assess its impact on physician practice, and what are the most cost-effective health care delivery models to serve the majority of survivors? The ASCO Survivorship Committee in collaboration with the ASCO Professional Development Committee developed a core curriculum and core competencies for physicians, allied health professionals, training programs, and policymaking organizations. Adapted from Institute of Medicine recommendations for survivorship care, the core curriculum and competencies include the following subheadings: surveillance for recurrence and second malignancies, long-term and late effects, health promotion and prevention, psychosocial well-being, special populations including adolescent and young adult survivors, older adult cancer survivors, caregivers of cancer survivors and communication and care coordination. An environmental scan (a process that systematically surveys and interprets relevant data to identify opportunities and barriers) for survivorship was performed. Although survivorship content exists in various courses, conferences, guidelines, and Web-based applications, the information is incomplete and not easily found. Hence, there was a need for this content to be easy to access and available in one place. Content experts formulated the individual sections based on the environmental scan and their knowledge of the various subheadings. Both an environmental scan and a comprehensive literature review have standard methodologies. The differences are in scope; an environmental scan is more like an overview, and the standard literature review is more granular. For this article, we felt that environmental scan better served the purpose of

  2. Survivorship after childhood cancer: PanCare: a European Network to promote optimal long-term care.

    PubMed

    Hjorth, Lars; Haupt, Riccardo; Skinner, Roderick; Grabow, Desiree; Byrne, Julianne; Karner, Sabine; Levitt, Gill; Michel, Gisela; van der Pal, Helena; Bárdi, Edit; Beck, Jörn D; de Vathaire, Florent; Essig, Stefan; Frey, Eva; Garwicz, Stanislaw; Hawkins, Mike; Jakab, Zsuzsanna; Jankovic, Momcilo; Kazanowska, Bernarda; Kepak, Tomas; Kremer, Leontien; Lackner, Herwig; Sugden, Elaine; Terenziani, Monica; Zaletel, Lorna Zadravec; Kaatsch, Peter

    2015-07-01

    Survival after childhood cancer has improved substantially over recent decades. Although cancer in childhood is rare increasingly effective treatments have led to a growing number of long-term survivors. It is estimated that there are between 300,000 and 500,000 childhood cancer survivors in Europe. Such good survival prospects raise important questions relating to late effects of treatment for cancer. Research has shown that the majority will suffer adverse health outcomes and premature mortality compared with the general population. While chronic health conditions are common among childhood cancer survivors, each specific type of late effect is very rare. Long-term effects must be considered particularly when addressing complex multimodality treatments, and taking into account the interaction between aspects of treatment and genotype. The PanCare Network was set up across Europe in order to effectively answer many of these questions and thereby improve the care and quality of life of survivors. The need for a structured long-term follow-up system after childhood cancer has been recognised for some time and strategies for implementation have been developed, first nationally and then trans-nationally, across Europe. Since its first meeting in Lund in 2008, the goal of the PanCare Network has been to coordinate and implement these strategies to ensure that every European survivor of childhood and adolescent cancer receives optimal long-term care. This paper will outline the structure and work of the PanCare Network, including the results of several European surveys, the start of two EU-funded projects and interactions with relevant stakeholders and related projects. Copyright © 2015 Elsevier Ltd. All rights reserved.

  3. Public Health Action Model for Cancer Survivorship

    PubMed Central

    Moore, Angela R.; Buchanan, Natasha D.; Fairley, Temeika L.; Smith, Judith Lee

    2016-01-01

    Long-term objectives associated with cancer survivors have been suggested by Healthy People 2020, including increasing the proportion of survivors living beyond 5 years after diagnosis and improving survivors’ mental and physical health-related quality of life. Prior to reaching these objectives, several intermediate steps must be taken to improve the physical, social, emotional, and financial well-being of cancer survivors. Public health has a role in developing strategic, actionable, and measurable approaches to facilitate change at multiple levels to improve the lives of survivors and their families. The social ecological model has been used by the public health community as the foundation of multilevel intervention design and implementation, encouraging researchers and practitioners to explore methods that promote internal and external changes at the individual, interpersonal, organizational, community, and policy levels. The survivorship community, including public health professionals, providers, policymakers, survivors, advocates, and caregivers, must work collaboratively to identify, develop, and implement interventions that benefit cancer survivors. The National Action Plan for Cancer Survivorship highlights public health domains and associated strategies that can be the impetus for collaboration between and among the levels in the social ecological model and are integral to improving survivor outcomes. This paper describes the Public Health Action Model for Cancer Survivorship, an integrative framework that combines the National Action Plan for Cancer Survivorship with the social ecological model to demonstrate how interaction among the various levels may promote better outcomes for survivors. PMID:26590641

  4. Addressing psychosocial issues in cancer survivorship: past, present and future.

    PubMed

    Walsh, Katherine

    2016-12-01

    With a burgeoning population of cancer survivors, organizations in the USA and around the world are considering how to address the many long-term and late psychosocial effects of cancer and cancer treatment. This article reviews the changing landscape of survivorship care over the past 50 years, from the time when there were relatively few survivors to the future, when the number of cancer survivors in the USA alone is expected to reach close to 20 million. Institute of Medicine Reports, intra-organizational summits and accrediting standards that have influenced the development of survivorship care plans and programs and the roles of the Internet and smartphone applications along with oncology specialist and primary care providers are discussed.

  5. Do Active Duty Cancer Survivors with a Concurrent Behavioral Health Diagnosis Have Distinct Survivorship Care Needs

    DTIC Science & Technology

    2014-09-23

    categories: eating; sleep; dissociative ; somatoform; psychogenic; sexual and gender identity ; and mental disorders due to general medical conditions...eating; sleep; dissociative ; somatoform; psychotic; psychogenic; sexual and gender identity ; personality; substance use; cognitive; childhood...Anxiety/Adjustment (χ2(1, N = 347) = 10.65, p < 0.01), and Other Disorders (χ2(1, N = 347) = 5.90, p < 0.05), than non-Active Duty cancer survivors

  6. Breast Cancer Survivors’ Perception of Survivorship

    PubMed Central

    Documet, Patricia I.; Trauth, Jeanette M.; Key, Meghan; Flatt, Jason; Jernigan, Jan

    2012-01-01

    Purpose/Objectives To explore (a) how women who were diagnosed with breast cancer (BC) defined themselves as survivors and when this occurred, and (b) the types of benefits they derived from their experiences. Research Approach An exploratory, qualitative approach. Participants 112 women who had BC (response rate = 70%). Setting Participants were recruited from two cancer survivor organizations in a northeastern U.S. city. Methodologic Approach Responses to open-ended questions in telephone interviews were examined by age at diagnosis using thematic analysis. Chi squares were used to conduct analyses by age (younger than 51 years; aged 51 years or older). Main Research Variables Meaning of survivorship, defining moment, benefits derived from surviving from breast cancer. Findings Participants’ perceptions of survivorship included two main components, a defining moment and the meaning attached to being a survivor. Becoming a survivor is an active process, except in the case of those participants who realized they were survivors when informed by a third party. Meanings differed by age at diagnosis. Most participants listed at least one benefit from surviving cancer. Conclusions The definitions of survivorship and benefits outlined here suggest that many positive aspects of the survivorship experience exist that may inform future interventions’ designs. Implications for Practice Providers should acknowledge the strength survivors show in the process of meaning-making and finding benefits in their adverse experiences. The use of expressive and supportive interventions may hold promise for women facing difficulties in coping with their diagnosis. PMID:22543389

  7. Breast cancer survivorship and South Asian women: understanding about the follow-up care plan and perspectives and preferences for information post treatment

    PubMed Central

    Singh–Carlson, S.; Wong, F.; Martin, L.; Nguyen, S.K.A.

    2013-01-01

    Background and Objectives As more treatment options become available and supportive care improves, a larger number of people will survive after treatment for breast cancer. In the present study, we explored the experiences and concerns of female South Asian (sa) breast cancer survivors (bcss) from various age groups after treatment to determine their understanding of follow-up care and to better understand their preferences for a survivorship care plan (scp). Methods Patients were identified by name recognition from BC Cancer Agency records for sa patients who were 3–60 months post treatment, had no evidence of recurrence, and had been discharged from the cancer centre to follow-up. Three focus groups and eleven face-to-face semistructured interviews were audio-recorded, transcribed verbatim, cross-checked for accuracy, and analyzed using thematic and content analysis. Participants were asked about their survivorship experiences and their preferences for the content and format of a scp. Results Fatigue, cognitive changes, fear of recurrence, and depression were the most universal effects after treatment. “Quiet acceptance” was the major theme unique to sa women, with a unique cross-influence between faith and acceptance. Emphasis on a generalized scp with individualized content echoed the wide variation in breast cancer impacts for sa women. Younger women preferred information on depression and peer support. Conclusions For sa bcss, many of the psychological and physical impacts of breast cancer diagnosis and treatment may be experienced in common with bcss of other ethnic backgrounds, but the present study also suggests the presence of unique cultural nuances such as spiritual and language-specific support resource needs. The results provide direction for designing key content and format of scps, and information about elements of care that can be customized to individual patient needs. PMID:23559888

  8. Providing Breast Cancer Survivorship: Lessons Learned From a Pilot Project Implementation.

    PubMed

    Johnson, Kathleen J; Minchew, Leigh A; Richter, Sara; Craft, Cheryl; Lerner, Rachel

    Many cancer survivors have gaps in knowledge of their disease and treatments received. The goal of this project was to evaluate the development and implementation of a pilot breast cancer survivorship program aimed at decreasing the gap in patient knowledge of disease and treatment, from both the staff and patient perspectives. A mixed methods approach used data from multiple sources: (1) historical data, (2) medical record review, (3) a mailed patient questionnaire, (4) 1:1 semistructured telephone interviews with patients, and (5) 1:1 semistructured interviews with staff members. The implementation of the pilot survivorship program resulted in increased patient knowledge of disease and treatments received. The majority of breast cancer survivors (80%) reported that the survivorship packet given at the end of treatment met most or all of their needs, and half reported that they did not feel they needed a 1:1 survivorship visit. The 20 staff interviews validated that most staff (80%) were able to accurately define cancer survivorship and aspects of providing survivorship care; however, 50% reported that they felt they needed more training. The pilot program was successful in increasing patient knowledge. Informal education and written material provided throughout the course of cancer care were found to meet most patient needs. Cancer center staff desire more training on providing survivorship care. Survivorship care may be best provided through educational interventions began at diagnosis and provided on an ongoing basis.

  9. Cancer Survivorship and Aging: Moving the Science Forward

    PubMed Central

    Bellizzi, Keith M.; Mustian, Karen M.; Palesh, Oxana G.; Diefenbach, Michael

    2011-01-01

    Given the high incidence and prevalence of cancer in older adults and the anticipated growth of this population over the next few decades, oncologists, geriatricians and primary care providers will be challenged to provide timely and appropriate post-treatment care to a diverse population of older cancer survivors. Few post-treatment epidemiologic or clinical trial studies have investigated the mental, social and physical health issues among older cancer survivors. The behavioral oncology, gerontology, geriatric and psychology literature on cancer survivorship and aging is reviewed. This article highlights several methodological challenges investigators face when conducting epidemiological and cancer clinical trial research with older cancer survivors following treatment. These challenges must be considered and overcome to develop an informative body of scientific knowledge to address the post-treatment health care needs of this growing population. Future research directions, new models of care, and the need for trans-disciplinary approaches are discussed. PMID:19058147

  10. Patient-centered support in the survivorship care transition: Outcomes from the Patient-Owned Survivorship Care Plan Intervention.

    PubMed

    Kvale, Elizabeth A; Huang, Chao-Hui Sylvia; Meneses, Karen M; Demark-Wahnefried, Wendy; Bae, Sejong; Azuero, Casey B; Rocque, Gabrielle B; Bevis, Kerri S; Ritchie, Christine S

    2016-10-15

    To the authors' knowledge, few studies to date have evaluated the effects of survivorship care planning on the care transition process from specialty cancer care to self-management and primary care, patient experience, or health outcomes. The Patient-owned Survivorship Transition Care for Activated, Empowered survivors (POSTCARE) is a single coaching encounter based on the Chronic Care Model that uses motivational interviewing techniques to engage survivors of breast cancer. The current study examined the effects of the POSTCARE intervention on patient outcomes and care coordination. A total of 79 survivors of American Joint Commision on Cancer TNM System stage 0 to IIIB breast cancer were randomized to POSTCARE (40 patients) or usual care (39 patients). Patient outcomes were assessed using the 36-Item Short Form Health Survey (SF-36), Social/Role Activities Limitations, Self-Efficacy for Managing Chronic Disease 6-Item Scale, the Patient Activation Measure-Short Form, and Patient Health Questionnaire depression scale at baseline and at 3-month follow-up. Care coordination was assessed using confirmed primary care physician visits and reported discussion of the survivorship care plan at the 3-month follow-up. Logistic and linear regression analyses were conducted to examine the effect of POSTCARE on selected outcomes. Participants in the intervention group versus those receiving usual care demonstrated significantly higher self-reported health (F-statistic (3,71), 3.63; P =.017) and lower social role limitations (F (3,70), 3.82; P =.014) and a trend toward greater self-efficacy (F (3,69), 2.51; P = .07). Three quality-of-life domains reached clinically meaningful improvement at the 3-month follow-up, including physical role (P =.0009), bodily pain (P =.03), and emotional role (P =.04). The POSTCARE intervention appeared to have a positive impact on patient outcomes and demonstrated promise as a strategy with which to improve survivors' experience, care coordination

  11. Improving the quality of survivorship for older adults with cancer.

    PubMed

    Mohile, Supriya G; Hurria, Arti; Cohen, Harvey J; Rowland, Julia H; Leach, Corinne R; Arora, Neeraj K; Canin, Beverly; Muss, Hyman B; Magnuson, Allison; Flannery, Marie; Lowenstein, Lisa; Allore, Heather G; Mustian, Karen M; Demark-Wahnefried, Wendy; Extermann, Martine; Ferrell, Betty; Inouye, Sharon K; Studenski, Stephanie A; Dale, William

    2016-08-15

    In May 2015, the Cancer and Aging Research Group, in collaboration with the National Cancer Institute and the National Institute on Aging through a U13 grant, convened a conference to identify research priorities to help design and implement intervention studies to improve the quality of life and survivorship of older, frailer adults with cancer. Conference attendees included researchers with multidisciplinary expertise and advocates. It was concluded that future intervention trials for older adults with cancer should: 1) rigorously test interventions to prevent the decline of or improve health status, especially interventions focused on optimizing physical performance, nutritional status, and cognition while undergoing cancer treatment; 2) use standardized care plans based on geriatric assessment findings to guide targeted interventions; and 3) incorporate the principles of geriatrics into survivorship care plans. Also highlighted was the need to integrate the expertise of interdisciplinary team members into geriatric oncology research, improve funding mechanisms to support geriatric oncology research, and disseminate high-impact results to the research and clinical community. In conjunction with the 2 prior U13 meetings, this conference provided the framework for future research to improve the evidence base for the clinical care of older adults with cancer. Cancer 2016;122:2459-68. © 2016 American Cancer Society. © 2016 American Cancer Society.

  12. Physical Activity and Cancer Survivorship

    PubMed Central

    Garcia, David O.; Thomson, Cynthia A.

    2015-01-01

    There has been an increase in the cancer survivor population in the United States over the past several decades primarily due to improvements in early detection of first malignancies and effective treatment modalities. A wealth of evidence has demonstrated that regular physical activity is associated with a lower risk of death, all-cause mortality, cancer recurrence, and several chronic diseases, including type 2 diabetes and cardiovascular disease, common comorbid conditions in people who have survived cancer. Physical activity also is a central component of weight management. Methods This review summarizes the current physical activity recommendations and the evidence linking physical activity to improvements in weight management, physiological effects, and psychological health outcomes for cancer survivors. Results The available literature suggests physical activity is safe and is positively associated with weight management, cardiorespiratory fitness, muscular strength and endurance, quality of life, fatigue, and other psychosocial factors in cancer survivors. Yet relationships related to specific cancer diagnoses, treatments, and underlying cardiometabolic mechanisms associated with survival have not been thoroughly examined in randomized controlled trials. Furthermore, factors that influence adherence to physical activity behaviors must be identified to develop effective exercise programs. The use of objective measures of physical activity and the standardization of reporting outcome measures within intervention trials are needed to complement this effort. Conclusions Healthcare providers should consider individual differences among cancer survivors and tailor physical activity programs to meet the individual needs of the patient to assist in the adoption and maintenance of a physically active lifestyle. PMID:25335787

  13. Developing a Cancer Survivorship Curriculum for Family Medicine Residents: A Needs Assessment

    ERIC Educational Resources Information Center

    Schubart, Jane R.; Gusani, Niraj J.; Kass, Rena; Lewis, Peter

    2013-01-01

    With the increasing survival of cancer patients, primary care residents must be familiar with the late effects of cancer treatment and be able to offer appropriate survivorship care in partnership with cancer care specialists. To address these paired public health and educational needs, an interdisciplinary group at our institution is developing,…

  14. Evaluating Survivorship Experiences and Needs Among Rural African American Breast Cancer Survivors.

    PubMed

    Adams, Natasia; Gisiger-Camata, Silvia; Hardy, Claudia M; Thomas, Tammi F; Jukkala, Angela; Meneses, Karen

    2015-10-24

    Disparities in cancer survivorship exist among specific populations of breast cancer survivors, specifically rural African American breast cancer survivors (AA-BCS). While effective survivorship interventions are available to address and improve quality of life, interventions must be culturally tailored for relevance to survivors. Here, we report the results of our formative research using focus groups and in-depth interview to better understand unique rural AA-BCS survivorship experiences and needs in the Alabama Black Belt. Surveys were used to gather sociodemographic and cancer treatment data. Fifteen rural AA-BCS shared their experiences and concerns about keeping their cancer a secret, lack of knowledge about survivorship, lingering symptoms, religion and spirituality, cancer surveillance, and general lack of survivorship education and support. Rural AA-BCS were unwilling to share their cancer diagnosis, preferring to keep it a secret to protect family and friends. Quality-of-life issues like lymphedema body image and sexuality were not well understood. They viewed spirituality and religion as essential in coping and accepting cancer. Participants also discussed the importance of and barriers to maintaining health through regular check-ups. They needed social support from family and friends and health care providers. Overall, rural AA-BCS expressed their need for knowledge about survivorship self-management by providing a vivid picture of the realities of cancer survival based on shared concerns for survivorship support and education within the context of culture.

  15. Survivorship: Screening for Cancer and Treatment Effects, Version 2.2014

    PubMed Central

    Denlinger, Crystal S.; Ligibel, Jennifer A.; Are, Madhuri; Baker, K. Scott; Demark-Wahnefried, Wendy; Dizon, Don; Friedman, Debra L.; Goldman, Mindy; Jones, Lee; King, Allison; Ku, Grace H.; Kvale, Elizabeth; Langbaum, Terry S.; Leonardi-Warren, Kristin; McCabe, Mary S.; Melisko, Michelle; Montoya, Jose G.; Mooney, Kathi; Morgan, Mary Ann; Moslehi, Javid J.; O’Connor, Tracey; Overholser, Linda; Paskett, Electra D.; Peppercorn, Jeffrey; Raza, Muhammad; Rodriguez, M. Alma; Syrjala, Karen L.; Urba, Susan G; Wakabayashi, Mark T.; Zee, Phyllis; McMillian, Nicole; Freedman-Cass, Deborah

    2015-01-01

    The NCCN Guidelines for Survivorship provide screening, evaluation, and treatment recommendations for common physical and psychosocial consequences of cancer and cancer treatment. This portion of the guidelines describes recommendations regarding screening for the effects of cancer and its treatment. The panel created a sample screening tool, specifically for use in combination with the NCCN Guidelines for Survivorship, to guide providers to topics that require more in-depth assessment. Effective screening and assessment can help providers deliver necessary and comprehensive survivorship care. PMID:25361799

  16. National Coalition for Cancer Survivorship

    MedlinePlus

    ... said, “The ACA is the law of the land for the foreseeable future.” But this week lawmakers ... Care Act (ACA) is the “law of the land for the foreseeable future.” The National Coalition for ...

  17. The Medical Expenditure Panel Survey (MEPS) experiences with cancer survivorship supplement.

    PubMed

    Yabroff, K Robin; Dowling, Emily; Rodriguez, Juan; Ekwueme, Donatus U; Meissner, Helen; Soni, Anita; Lerro, Catherine; Willis, Gordon; Forsythe, Laura P; Borowski, Laurel; Virgo, Katherine S

    2012-12-01

    The prevalence of cancer survivorship in the USA is expected to increase in the future because the US population is increasing in size and is aging and because survival following diagnosis is improving for many types of cancer. Medical care costs associated with cancer are also projected to increase dramatically. However, currently available data for estimating medical care costs and other important aspects of the burden of cancer, including time spent receiving medical care, productivity loss due to morbidity for patients and their families, and financial hardship, are limited, particularly in the population under the age of 65. We describe selected publicly available data sources for estimating the burden of cancer in the USA and a new collaborative effort to improve the quality of these data: the nationally representative Medical Expenditure Panel Survey (MEPS) Experiences with Cancer Survivorship Supplement. Data from this effort can be used to address key gaps in cancer survivorship research related to medical care costs, employment patterns, financial hardship, and other aspects of the burden of illness for cancer survivors and their families. Research using the MEPS Experiences with Cancer Survivorship Supplement can inform efforts by health care policy makers, healthcare systems, providers, and employers to improve the cancer survivorship experience in the USA.

  18. Survivorship: How to Survive Cancer and Still Lose Your Life
.

    PubMed

    Colón, Yvette

    2017-04-01

    Cancer survivorship implies that the cancer has been treated and the survivor can return to his or her precancer life. The term fails to acknowledge the radical change to the person's mind, body, and spirit, nor does it address the diminished quality of life that can occur secondary to treatment. The survivorship struggle is often overlooked as public interests lies only in "success stories."

  19. Adherence to Survivorship Care Guidelines in Health Care Providers for Non-Small Cell Lung Cancer and Colorectal Cancer Survivor Care

    ClinicalTrials.gov

    2017-04-05

    Adenocarcinoma of the Lung; Mucinous Adenocarcinoma of the Colon; Mucinous Adenocarcinoma of the Rectum; Signet Ring Adenocarcinoma of the Colon; Signet Ring Adenocarcinoma of the Rectum; Squamous Cell Lung Cancer; Stage I Colon Cancer; Stage I Rectal Cancer; Stage IA Non-small Cell Lung Cancer; Stage IB Non-small Cell Lung Cancer; Stage IIA Colon Cancer; Stage IIA Non-small Cell Lung Cancer; Stage IIA Rectal Cancer; Stage IIB Colon Cancer; Stage IIB Non-small Cell Lung Cancer; Stage IIB Rectal Cancer; Stage IIC Colon Cancer; Stage IIC Rectal Cancer; Stage IIIA Colon Cancer; Stage IIIA Non-small Cell Lung Cancer; Stage IIIA Rectal Cancer; Stage IIIB Colon Cancer; Stage IIIB Non-small Cell Lung Cancer; Stage IIIB Rectal Cancer; Stage IIIC Colon Cancer; Stage IIIC Rectal Cancer

  20. A Case of Complicated Survivorship Care

    PubMed Central

    Rosiak, Jean; Humphreys, Candi

    2014-01-01

    At age 34, Ms. P., a premenopausal African American woman, was diagnosed with stage IA poorly differentiated invasive ductal carcinoma of the left breast. Her tumor was estrogen and progesterone receptor (PR) positive but HER2 negative. Ms. P.’s treatment included a partial mastectomy, radiation therapy, and 2 years of tamoxifen, although tamoxifen was discontinued due to pregnancy. She was then lost to follow-up. At age 40, Ms. P. discovered a mass in her left breast upon self- exam. There was a delay in diagnosis due to pregnancy, which was terminated. A core biopsy was performed, and the pathology was positive for poorly differentiated invasive ductal carcinoma that was ER and PR positive but HER2 negative. She was clinically stage IIIB, with the tumor fixed to the chest wall. Ms. P.’s family history included premenopausal breast cancer in her mother, three of her maternal aunts, and her maternal grandmother. Genetic testing was performed; she was found to have a BRCA2 deleterious mutation. After an intrauterine device (IUD) was placed to prevent pregnancy, Ms. P. began neoadjuvant chemotherapy consisting of doxorubicin and cyclophosphamide for 4 cycles followed by paclitaxel for 4 cycles. She then underwent a left salvage mastectomy and sentinel lymph node biopsy. After treatment, she was assessed at pathologic stage IA. Tamoxifen was reinitiated. After completing treatment, Ms. P. presented for a survivorship visit accompanied by her fiancé. PMID:25032037

  1. Effects of complementary and integrative medicine on cancer survivorship.

    PubMed

    Frenkel, Moshe; Sierpina, Victor; Sapire, Kenneth

    2015-01-01

    Cancer survivorship has become a topic of great interest in the past few years. Unfortunately, even with successful treatment as well as good follow-up care, many patients continue to experience unmet physical, emotional, and spiritual needs as well as having an unsettling fear, fear of recurrence, a fear which most survivors share, even many years after their treatment ended. As a result, patients are continually looking for additional ways to address these needs and fears. Among the most popular approach is the use of complementary and integrative medicine (CIM). Most studies on CIM use among cancer patients and survivors concentrate on symptom improvement and improvement of quality of life and do not touch a crucial question if these therapies can affect patients' survival in terms of prolongation of life. Interestingly, in recent years, there are a growing number of studies that suggest that approaches such as mind-body interventions, enhanced general nutrition, nutritional supplements, physical activity, and other CIM approaches may have a positive effect on survival of cancer patients. Although additional studies are needed to confirm these findings, given the low cost of these CIM interventions, their minimal risk, and the potential magnitude of their effects, these approaches might be considered as additional important tools to integrate into cancer survivorship care plans.

  2. Development and evaluation of an online educational resource about cancer survivorship for cancer nurses: a mixed-methods sequential study.

    PubMed

    Shaw, T; Yates, P; Moore, B; Ash, K; Nolte, L; Krishnasamy, M; Nicholson, J; Rynderman, M; Avery, J; Jefford, M

    2017-07-01

    Cancer survivorship is recognised globally as a key issue. In spite of the key role played by nurses in survivorship care, there is an identified gap in nurse's knowledge in this area. This study reports on the development and evaluation of an educational resource for nurses working with people affected by cancer. The resource was designed using adult learning principles and includes a variety of learning materials and point of care resources. A mixed-methods sequential exploratory design was used to undertake an evaluation of the programme. This included the use of online surveys and semi-structured interviews with pilot participants. A total of 21 participants completed an online survey and 11 participants completed a telephone interview. Overall, the participants found the Cancer Survivorship resource to be engaging, practical and intuitive. A major theme emerging from the survey and interview data was that the resource was applicable to practice and useful in developing survivorship care plans. Respondents requested additional information be included on the role of various health professionals working in survivorship as well as guidelines on when to make referrals. This study provides evidence that the Cancer Survivorship tool may be a promising vehicle for delivering evidence-based education on survivorship care. © 2016 John Wiley & Sons Ltd.

  3. Male breast cancer: risk factors, biology, diagnosis, treatment, and survivorship.

    PubMed

    Ruddy, K J; Winer, E P

    2013-06-01

    The causes, optimal treatments, and medical/psychosocial sequelae of breast cancer in men are poorly understood. A systematic review of the English language literature was conducted to identify studies relevant to male breast cancer between 1987 and 2012 and including at least 20 patients. Searches were carried out on PubMed using the title terms 'male breast cancer' or 'male breast carcinoma'. Relevant published data regarding risk factors, biological characteristics, presentation and prognosis, appropriate evaluation and treatment, and survivorship issues in male breast cancer patients are presented. BRCA2 mutations, age, conditions that alter the estrogen/androgen ratio, and radiation are proven risk factors. Disease biology is distinct in men, but diagnostic approaches and treatments for men are generally extrapolated from those in women due to inadequate research in men. Survivorship issues in men may include sexual and hormonal side-effects of endocrine therapies as well as unique psychosocial impacts of the disease. Further research is needed to address gaps in knowledge pertaining to care of male breast cancer patients and survivors.

  4. A Review of Breast Cancer Survivorship Issues from Survivors' Perspectives

    PubMed Central

    Cho, Jihyoung; Jung, So-Youn; Lee, Jung Eun; Shim, Eun-Jung; Kim, Nam Hyoung; Kim, Zisun; Sohn, Guiyun; Youn, Hyun Jo; Kim, Ku Sang; Kim, Hanna; Lee, Jong Won

    2014-01-01

    Despite the fact that more breast cancer survivors are currently enjoying longer lifespans, there remains limited knowledge about the factors and issues that are of greatest significance for these survivors, particularly from their perspectives. This review was based on the concept that the topics addressed should focus on the perspectives of current survivors and should be extended to future modalities, which physicians will be able to use to gain a better understanding of the hidden needs of these patients. We intended to choose and review dimensions other than the pathology and the disease process that could have been overlooked during treatment. The eight topics upon which we focused included: delay of treatment and survival outcome; sexual well-being; concerns about childbearing; tailored follow-up; presence of a family history of breast cancer; diet and physical activity for survivors and their families; qualitative approach toward understanding of breast cancer survivorship, and; mobile health care for breast cancer survivors. Through this review, we aimed to examine the present clinical basis of the central issues noted from the survivors' perspectives and suggest a direction for future survivorship-related research. PMID:25320616

  5. Coping - Care for Childhood Cancer Survivors

    Cancer.gov

    Survivorship care for children who have been treated for cancer is important. Get your child's treatment summary, survivorship plan, and recommendations on follow-up care clinics. Learn about long-term and late effects.

  6. Wellness Beyond Cancer Program: building an effective survivorship program

    PubMed Central

    Rushton, M.; Morash, R.; Larocque, G.; Liska, C.; Stoica, L.; DeGrasse, C.; Segal, R.

    2015-01-01

    Background The Wellness Beyond Cancer Program (wbcp) was launched in 2012, first accepting patients with colorectal cancer (crc) and, subsequently, those with breast cancer (bca), with the aim of standardizing and streamlining the discharge process from our cancer centre. Patients are discharged either to the wbcp nurse practitioner or to their primary care provider (pcp). The program incorporates survivorship care plans (scps) and education classes; it also has a rapid re-entry system in case of recurrence. The objective of this paper is to describe the process by which a cancer survivorship program was developed at our institution and to present preliminary evaluation results. Methods Qualitative surveys were mailed to patients and pcps 1 year after patients had been referred to the wbcp. The surveys addressed knowledge of the program content, satisfaction on the part of patients and providers, and whether scp recommendations were followed. Questions were scored on the level of agreement with each of a list of statements (1 = strongly disagree to 5 = strongly agree). Results From March 2012 to November 2014, 2630 patients were referred to the wbcp (809 with crc, 1821 with bca). Surveys were received from 289 patients and 412 pcps. Patients and pcps gave similar scores (average: 4) to statements about satisfaction; pcps gave scores below 4 to statements about communication with the wbcp. Conclusions At 1 year after discharge, patients and pcps were satisfied with program content, but there is an opportunity to improve on communication and provision of cancer-specific information to the pcps. Using the wbcp to ensure a safe transition to the most appropriate health care provider, we have standardized the discharge process for crc and bca patients. PMID:26715879

  7. Testicular Cancer Survivorship: Research Strategies and Recommendations

    PubMed Central

    Beard, Clair; Allan, James M.; Dahl, Alv A.; Feldman, Darren R.; Oldenburg, Jan; Daugaard, Gedske; Kelly, Jennifer L.; Dolan, M. Eileen; Hannigan, Robyn; Constine, Louis S.; Oeffinger, Kevin C.; Okunieff, Paul; Armstrong, Greg; Wiljer, David; Miller, Robert C.; Gietema, Jourik A.; van Leeuwen, Flora E.; Williams, Jacqueline P.; Nichols, Craig R.; Einhorn, Lawrence H.; Fossa, Sophie D.

    2010-01-01

    Testicular cancer represents the most curable solid tumor, with a 10-year survival rate of more than 95%. Given the young average age at diagnosis, it is estimated that effective treatment approaches, in particular, platinum-based chemotherapy, have resulted in an average gain of several decades of life. This success, however, is offset by the emergence of considerable long-term morbidity, including second malignant neoplasms, cardiovascular disease, neurotoxicity, nephrotoxicity, pulmonary toxicity, hypogonadism, decreased fertility, and psychosocial problems. Data on underlying genetic or molecular factors that might identify those patients at highest risk for late sequelae are sparse. Genome-wide association studies and other translational molecular approaches now provide opportunities to identify testicular cancer survivors at greatest risk for therapy-related complications to develop evidence-based long-term follow-up guidelines and interventional strategies. We review research priorities identified during an international workshop devoted to testicular cancer survivors. Recommendations include 1) institution of lifelong follow-up of testicular cancer survivors within a large cohort setting to ascertain risks of emerging toxicities and the evolution of known late sequelae, 2) development of comprehensive risk prediction models that include treatment factors and genetic modifiers of late sequelae, 3) elucidation of the effect(s) of decades-long exposure to low serum levels of platinum, 4) assessment of the overall burden of medical and psychosocial morbidity, and 5) the eventual formulation of evidence-based long-term follow-up guidelines and interventions. Just as testicular cancer once served as the paradigm of a curable malignancy, comprehensive follow-up studies of testicular cancer survivors can pioneer new methodologies in survivorship research for all adult-onset cancer. PMID:20585105

  8. Web based survivorship interventions for women with breast cancer: An integrative review.

    PubMed

    Post, Kathryn E; Flanagan, Jane

    2016-12-01

    Breast cancer survivors' experience a range of negative sequelae post-treatment including depression, anxiety, physical side effects from treatment, sexuality concerns and decreased quality of life. Survivorship care is recommended by the IOM to meet the post treatment needs of survivors but implementation is variable and barriers to delivery such as time and resource restraints have been identified. Web-based interventions may be a way to overcome some barriers to providing quality survivorship care that is efficacious, cost efficient and convenient. The purpose of this integrative review is to summarize and synthesize the current research on web-based interventions for breast cancer survivorship care and evaluate the data to determine potential implications for practice. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were used to guide this integrative review. Key search terms included breast cancer, survivor, intervention, web, internet and technology. Articles evaluating web-based survivorship interventions (n = 405) for early stage breast cancer patients who completed active therapy were included. Fifteen studies met inclusion criteria: six randomized controlled trials, six survey based studies, one qualitative study, one retrospective chart review and one mixed methods study. Studies evaluating cognitive behavioral therapy provided the strongest data. Other studies evaluated exercise and lifestyle interventions, symptom management programs and pilot/exploratory work. Findings suggest that web-based survivorship interventions are feasible and acceptable to breast cancer survivors. Web-based survivorship interventions have the potential to meet the needs of breast cancer survivors while possibly overcoming some of the documented barriers to survivorship care implementation. Copyright © 2016 Elsevier Ltd. All rights reserved.

  9. The Relationship between Communication and Health-related Quality of Life in Survivorship Care for Chinese- and Korean-American Breast Cancer Survivors

    PubMed Central

    Lim, Jung-won; Paek, Min-so

    2012-01-01

    Objective The purpose of this study was (1) to compare family communication, decision support (i.e., supporting the patient in making decisions), self-efficacy in patient-physician communication (i.e., patients’ confidence level in communicating with physicians), and health-related quality of life (HRQOL) between Chinese- and Korean-American breast cancer survivors (BCS), and (2) to investigate how family communication, decision support, and self-efficacy in patient-physician communication influences HRQOL for Chinese- and Korean-American BCS. Methods A cross-sectional design was used. A total of 157 Chinese- (n=86) and Korean-American (n=71) BCS were recruited from the California Cancer Surveillance Program and area hospitals in Los Angeles County. The Chronic Care Model was utilized. Results Chinese- and Korean-Americans showed a significant difference in the decision support only. Self-efficacy in patient-physician communication was directly associated with HRQOL for Chinese-Americans, whereas for Korean-Americans, family communication was related to HRQOL. The mediating effects of decision support and self-efficacy in physician-patient communication in the relationship between family communication and HRQOL were observed for Chinese-Americans only. Multiple group analysis demonstrated that the structural paths varied between Chinese- and Korean-American BCS. Conclusions Our results provide insight into the survivorship care of Chinese- and Korean-American BCS, allowing a better understanding of communication among survivors, family, and healthcare providers. Communication skills to manage conflict and attain consensus among them under the cultural contexts are essential to improve HRQOL for BCS. PMID:23111944

  10. "I've been through something": poetic explorations of African American women's cancer survivorship.

    PubMed

    Kooken, Wendy Carter; Haase, Joan E; Russell, Kathleen M

    2007-11-01

    This article describes common experiences of African American women breast cancer survivors through poetic analysis. Group-as-a-whole theory and empirical and interpretive phenomenology guided analysis of transcripts from three focus groups (n = 21) of African American breast cancer survivors. Familiarity with transcripts and themes led to awareness of poetic ways in which African American women described experiences. Black feminist literature and African American historical references contextualized survivors' experiences. Poetic interpretations of African American women's breast cancer experiences, from diagnosis to survivorship, were created from transcript dialogues. Verbatim words were used to construct the poems, as often as possible. Eleven poems describe the journey from diagnosis to survivorship as experienced by African American women. The poetry may raise levels of awareness of African American women's breast cancer survivorship experiences. Attention to subtleties that underpin culture within the context of health care environments may help health care providers to improve cultural competence.

  11. A Contextual Approach to Understanding Breast Cancer Survivorship Among Latinas

    PubMed Central

    Lopez-Class, Maria; Gomez-Duarte, Jessika; Graves, Kristi; Ashing-Giwa, Kimlin

    2012-01-01

    Objectives The purpose of this review is to describe the empirical literature on the health-related quality of life (HRQOL) in Latina breast cancer survivors by exploring the social determinants of health. In framing the key domains of survivors’ quality of life within a ecological-contextual model that evaluates individual and societal contributions to health outcomes, we provide a comprehensive landscape of the diverse factors constituting Latina survivors’ lived experiences and their resultant quality of life outcomes. Methods We retrieved 244 studies via search engines and reference lists, of which 37 studies met the inclusion criteria. Results Findings document the importance of the social determinants of HRQOL, with studies documenting ecological and contextual factors accounting for significant variance in HRQOL outcomes. Our review identifies a dearth of research examining community-, institutional-, and policy-level factors, such as health care access, legal and immigration factors, physical and built environments, and health care affordability and policies affecting Latina breast cancer survivors’ HRQOL. Conclusions Overall research on Latina breast cancer survivorship is sparse, with even greater underrepresentation within longitudinal and intervention studies. Results highlight a need for clear documentation of the comprehensive care needs of underserved cancer survivors and interventions considering integrated systems of care to address the medical and ecological factors known to impact the HRQOL of breast cancer survivors. PMID:21674680

  12. Expectations of survivors, caregivers and healthcare providers for testicular cancer survivorship and quality of life.

    PubMed

    De Padova, Silvia; Rosti, Giovanni; Scarpi, Emanuela; Salvioni, Roberto; Amadori, Dino; De Giorgi, Ugo

    2011-01-01

    We compared expectations of testicular cancer survivors and their caregivers with those of healthcare providers for testicular cancer survivorship care and quality of life to identify experiences and potential expectations in which there was disagreement. In a meeting with testicular cancer survivors, their caregivers, and care providers with an interest in testicular cancer, we distributed a structured questionnaire with 24 questions divided into 3 sections: personal information, information on the quality of life of survivors, information on the role of care providers, general practitioners and health-related internet sources in the expectations of survivors. The overall response rate was 91% (29 of 32) for patients and 100% (14 of 14) for caregivers with all questionnaires evaluable, while among 60 care providers, 42 (70%) responded with 41 (68%) evaluable. Between patients/caregivers and care providers, expectations were most incongruent for the role of primary care physicians in testicular cancer follow-up: important/fundamental for 58% of patients/caregivers and 88% of care providers (P = 0.010). Comparing patients/caregivers with care providers in their views of the experience of testicular cancer survivorship, we found several discrepancies: the fear of recurrence was high/very high for 18 of 43 (42%) patients/caregivers and in the perception of 40 of 41 (98%) care providers (P <0.001), and psychological distress was considered as highly relevant by 35% of patients/caregivers and 93% of care providers (P <0.001). Patients/caregivers and care providers have different perceptions of survivors' experiences and discordant expectations with respect to the roles of primary care providers in testicular cancer survivorship care. Uncertainties about the roles and responsibilities of physicians can lead to deficiencies in care, supporting the need to make survivorship care planning a standard component in cancer management.

  13. Passing Through: Meanings of Survivorship and Support Among Filipinas With Breast Cancer

    PubMed Central

    Burke, Nancy J.; Villero, Ofelia; Guerra, Claudia

    2012-01-01

    Breast cancer among Filipinas in the United States is a major but largely neglected cancer disparity. In 2004, a community– university partnership resulted in the first Filipina breast cancer support group in the San Francisco Bay Area. Building on this partnership, we explored the social and cultural contexts of Filipinas’ experiences with breast cancer to inform development of culturally appropriate and sustainable support services and outreach. We utilized multiple qualitative methods (participant observation, individual and small group in-depth qualitative interviews) to identify meanings of survivorship and support. Interviews and observations revealed the influences of social context and immigration experiences on women’s understandings of cancer, what “surviving” cancer means, and what it means to take care of someone with breast cancer (or be taken care of). Our findings highlight the importance of a transnational perspective for the study of immigrant women’s experiences of cancer and survivorship. PMID:21876208

  14. Prevalence and nature of survivorship needs in patients with head and neck cancer.

    PubMed

    Giuliani, Meredith; McQuestion, Maurene; Jones, Jennifer; Papadakos, Janet; Le, Lisa W; Alkazaz, Nour; Cheng, Terry; Waldron, John; Catton, Pamela; Ringash, Jolie

    2016-07-01

    The purpose of this study was to determine the number, type, and predictors of patients with head and neck cancer unmet survivorship needs. This study accrued patients with head and neck cancer at any time point in their survivorship course, and they completed a survey, including demographic information and the Cancer Survivors' Unmet Needs Measure (CaSUN). The median age of the 158 participants was 64 years. Ninety-six patients (61%) reported at least one unmet need on the CaSUN and 6 patients had a very high number of needs between 31 and 35. The mean number of unmet needs was 5.8 ± 8.9. Comprehensive Cancer Care was the most common domain of unmet need (n = 69; 45%). Younger age, earlier survivorship phase, and worse quality of life were associated with increased survivorship unmet needs on multivariable analysis. A high proportion of patients with head and neck cancer have unmet needs. These data can guide the development of head and neck survivorship programs. © 2016 Wiley Periodicals, Inc. Head Neck 38: 1097-1103, 2016. © 2016 Wiley Periodicals, Inc.

  15. Evaluating primary care providers' views on survivorship care plans generated by an electronic health record system.

    PubMed

    Donohue, SarahMaria; Sesto, Mary E; Hahn, David L; Buhr, Kevin A; Jacobs, Elizabeth A; Sosman, James M; Andreason, Molly J; Wiegmann, Douglas A; Tevaarwerk, Amye J

    2015-05-01

    Survivorship care plans for cancer survivors may facilitate provider-to-provider communication. Primary care provider (PCP) perspectives on care plan provision and use are limited, especially when care plans are generated by an electronic health record (EHR) system. We sought to examine PCPs' perspectives regarding EHR-generated care plans. PCPs (N = 160) who were members of the Wisconsin Research and Education Network listserv received a sample 10-page plan (WREN cohort). PCPs (n = 81) who had or were currently seeing survivors enrolled onto one of our survivorship clinical trials received a copy of the survivor's personalized care plan (University of Wisconsin [UW] cohort). Both cohorts received a survey after reviewing the plan. All plans were generated within an EHR. Forty-six and 26 PCPs participated in the WREN and UW cohorts, respectively. PCPs regarded EHR-generated plans as useful in coordinating care (88%), understanding treatments (94%), understanding treatment adverse effects (89%), and supporting clinical decisions (82%). Few felt using EHR-generated plans would disrupt clinic workflow (14%) or take too much time (11%). Most (89%) preferred receiving the plan via EHR. PCPs reported consistent provision (81%) and standard location in the medical record (89%) as key factors facilitating their use of survivorship care plans. Important facilitators of care plan use included a more abbreviated plan, ideally one to three pages (32%), and/or a plan specifically tailored to PCP use (57%). Plans were viewed as useful for coordinating care and making clinical decisions. However, PCPs desired shorter, clinician-oriented plans, accessible within an EHR and delivered and located in a standardized manner. Copyright © 2015 by American Society of Clinical Oncology.

  16. Evaluating Primary Care Providers' Views on Survivorship Care Plans Generated by an Electronic Health Record System

    PubMed Central

    Donohue, SarahMaria; Sesto, Mary E.; Hahn, David L.; Buhr, Kevin A.; Jacobs, Elizabeth A.; Sosman, James M.; Andreason, Molly J.; Wiegmann, Douglas A.; Tevaarwerk, Amye J.

    2015-01-01

    Purpose: Survivorship care plans for cancer survivors may facilitate provider-to-provider communication. Primary care provider (PCP) perspectives on care plan provision and use are limited, especially when care plans are generated by an electronic health record (EHR) system. We sought to examine PCPs' perspectives regarding EHR-generated care plans. Methods: PCPs (N = 160) who were members of the Wisconsin Research and Education Network listserv received a sample 10-page plan (WREN cohort). PCPs (n = 81) who had or were currently seeing survivors enrolled onto one of our survivorship clinical trials received a copy of the survivor's personalized care plan (University of Wisconsin [UW] cohort). Both cohorts received a survey after reviewing the plan. All plans were generated within an EHR. Results: Forty-six and 26 PCPs participated in the WREN and UW cohorts, respectively. PCPs regarded EHR-generated plans as useful in coordinating care (88%), understanding treatments (94%), understanding treatment adverse effects (89%), and supporting clinical decisions (82%). Few felt using EHR-generated plans would disrupt clinic workflow (14%) or take too much time (11%). Most (89%) preferred receiving the plan via EHR. PCPs reported consistent provision (81%) and standard location in the medical record (89%) as key factors facilitating their use of survivorship care plans. Important facilitators of care plan use included a more abbreviated plan, ideally one to three pages (32%), and/or a plan specifically tailored to PCP use (57%). Conclusion: Plans were viewed as useful for coordinating care and making clinical decisions. However, PCPs desired shorter, clinician-oriented plans, accessible within an EHR and delivered and located in a standardized manner. PMID:25804989

  17. Breast cancer survivorship: the role of perceived discrimination and sexual orientation.

    PubMed

    Jabson, Jennifer M; Donatelle, Rebecca J; Bowen, Deborah

    2011-03-01

    Breast cancer disproportionately affects sexual minority women (SMW) compared to heterosexual women and a small but growing literature indicates that SMW may have diminished survivorship outcomes; outcomes that are measurably and importantly different from heterosexual breast cancer survivors. However, it remains unknown how sexual orientation influences breast cancer survivorship outcomes such as quality of life. One possible route of influence is SMW's perceived discrimination in the health care setting. This cross-sectional study examines SMW perceptions of discrimination as one of the multiple facets of the breast cancer survivorship process. This study assessed SMW breast cancer survivor's perceptions of discrimination during their breast cancer treatment experience and secondarily, examined the role of this perceived discrimination on SMW's quality of life. Sixty-eight purposefully sampled sexual minority breast cancer survivors completed assessments of quality of life, perceived discrimination, perceived social support and perceived stress via an online survey. Statistical analyses point to perceived discrimination and perceived social support as important indicators for predicting SMW's quality of life. Future research on SMW's breast cancer survivorship should include measures of perceived discrimination.

  18. Perspectives of the Breast Cancer Survivorship Continuum: Diagnosis through 30 Months Post-Treatment

    PubMed Central

    Hulett, Jennifer M.; Armer, Jane M.; Stewart, Bob R.; Wanchai, Ausanee

    2015-01-01

    This study explored breast cancer survivors’ perspectives regarding their experiences of the survivorship continuum from diagnosis through 30 months post-treatment. The sample included women (N = 379) with newly-diagnosed breast cancer undergoing treatment at a Midwestern university-affiliated cancer center. Semi-structured interviews were conducted using the Lymphedema and Breast Cancer Questionnaire at time of diagnosis, post-operatively, quarterly during the first year, and then semi-annually thereafter through 30 months post-treatment. A mixed-methodology was used to analyze participants’ comments. Themes central to long-term survivorship experiences included social support, positive worldviews, breast cancer and lymphedema health literacy, religious/spiritual beliefs, self-empowerment, and recovery expectations. These themes were consistent with a psychoneuroimmunological model of health in which psychosocial variables mediate stress and influence health outcomes. Qualitative data showed that social support and positive worldviews were the two themes with the most significant impact on long-term breast cancer survivorship experiences. Survivors expressed a need to advance their health care literacy in order to share ownership of breast cancer and lymphedema treatment decisions. Since breast cancer is an immune-mediated disease, long-term survivorship planning should address psychosocial factors that influence the long-term psychological distress associated with immune dysfunction. PMID:26030800

  19. Advancing Breast Cancer Survivorship among African American Women

    PubMed Central

    Coughlin, Steven S.; Yoo, Wonsuk; Whitehead, Mary S.; Smith, Selina A.

    2015-01-01

    Purpose Advances have occurred in breast cancer survivorship but, for many African American women, challenges and gaps in relevant information remain. Methods This article identifies opportunities to address disparities in breast cancer survival and quality of life, and thereby to increase breast cancer survivorship among African American women. Results For breast cancer survivors, common side effects, lasting for long periods after cancer treatment, include fatigue, loss of strength, difficulty sleeping, and sexual dysfunction. For addressing physical and mental health concerns, a variety of interventions have been evaluated, including exercise and weight training, dietary interventions, yoga and mindfulness-based stress reduction, and support groups or group therapy. Obesity has been associated with breast cancer recurrence and poorer survival. Relative to white survivors, African American breast cancer survivors are more likely to be obese and less likely to engage in physical activity, although exercise improves overall quality of life and cancer-related fatigue. Considerable information exists about the effectiveness of such interventions for alleviating distress and improving quality of life among breast cancer survivors, but few studies have focused specifically on African American women with a breast cancer diagnosis. Studies have identified a number of personal factors that are associated with resilience, increased quality of life, and positive adaptation to a breast cancer diagnosis. Conclusions There is a need for a better understanding of breast cancer survivorship among African American women. Additional evaluations of interventions for improving the quality of life and survival of African American breast cancer survivors are desirable. PMID:26303657

  20. Advancing breast cancer survivorship among African-American women.

    PubMed

    Coughlin, Steven S; Yoo, Wonsuk; Whitehead, Mary S; Smith, Selina A

    2015-09-01

    Advances have occurred in breast cancer survivorship but, for many African-American women, challenges and gaps in relevant information remain. This article identifies opportunities to address disparities in breast cancer survival and quality of life, and thereby to increase breast cancer survivorship among African-American women. For breast cancer survivors, common side effects, lasting for long periods after cancer treatment, include fatigue, loss of strength, difficulty sleeping, and sexual dysfunction. For addressing physical and mental health concerns, a variety of interventions have been evaluated, including exercise and weight training, dietary interventions, yoga and mindfulness-based stress reduction, and support groups or group therapy. Obesity has been associated with breast cancer recurrence and poorer survival. Relative to white survivors, African-American breast cancer survivors are more likely to be obese and less likely to engage in physical activity, although exercise improves overall quality of life and cancer-related fatigue. Considerable information exists about the effectiveness of such interventions for alleviating distress and improving quality of life among breast cancer survivors, but few studies have focused specifically on African-American women with a breast cancer diagnosis. Studies have identified a number of personal factors that are associated with resilience, increased quality of life, and positive adaptation to a breast cancer diagnosis. There is a need for a better understanding of breast cancer survivorship among African-American women. Additional evaluations of interventions for improving the quality of life and survival of African-American breast cancer survivors are desirable.

  1. "Forewarned and forearmed": Long-term childhood cancer survivors' and parents' information needs and implications for survivorship models of care.

    PubMed

    Vetsch, Janine; Fardell, Joanna E; Wakefield, Claire E; Signorelli, Christina; Michel, Gisela; McLoone, Jordana K; Walwyn, Thomas; Tapp, Heather; Truscott, Jo; Cohn, Richard J

    2017-02-01

    This mixed-method study assessed 1) survivors' and parents' information needs; and 2) associations between unmet information needs and clinical and socio-demographic characteristics. Stage 1: CCS and parents of CCS, >5years post-diagnosis completed a questionnaire on information needs, overall health and perceived risk. Predictors for unmet information needs were assessed by multivariable regression. Stage 2: participants were interviewed in-depth on these topics. Questionnaires were completed by 485 participants comprising 322 survivors (mean age: 26.7years, SD=7.9; time since diagnosis: 19.7years, SD=8.8) and 163 parents (child age: 12.9years, SD=2.4; time since diagnosis: 9.7years, SD=2.3), and complemented by 70 interviews. Survivors reported unmet information needs about late effects (57.5%) and parents for fertility issues (62.5%). Survivors had more unmet needs for medical information whereas parents had significantly more regarding sexual issues and lifestyle. Being a parent (p=0.001), dissatisfaction with follow-up care (p=0.003), lower overall health (p=0.014), higher perceived risk of late effects (p<0.001), and greater anxiety/depression (p<0.001) were significantly associated with more unmet needs. Unmet information needs were common for survivors and parents of CCS. Future efforts towards tailoring information on potential late effects, healthy lifestyles and follow-up care may help to address unmet information needs. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

  2. The Italian response to cancer survivorship research and practice: developing an evidence base for reform.

    PubMed

    Mattioli, Vittorio; Montanaro, Rosanna; Romito, Francesca

    2010-09-01

    Improvement in cancer survival rates have increased longevity but have also revealed physical and psycho-social sequelae of long-term survivorship and raised many questions regarding how to assess, treat, and prevent these survival-related problems. The United States, Australia, and some northern European Union countries have already started to address these issues. Italy still needs to take up this challenge, taking into account its specific social and cultural background that shapes a different survivorship scenario. This brief report summarizes the concept of cancer survivorship and the response to this emerging public health issue in Italy. Two current nationwide research programs on long-term cancer survivorship and post-cancer pain are described to provide readers with a perspective of how Italy is seeking to increase the understanding of the needs and problems of cancer survivors. The results of these nationwide research programs will provide an evidence base for reforming the national care plans to address the needs of the growing number of Italian people with a history of cancer. It is hoped that this description of Italy's response to this public health challenge will offer some insight into how Italy is responding to the health and psychosocial needs of cancer survivors.

  3. Physical activity and lung cancer survivorship.

    PubMed

    Jones, Lee W

    2011-01-01

    A lung cancer diagnosis and associated therapeutic management is associated with unique and varying degrees of adverse physical/functional impairments that dramatically reduce a patient's ability to tolerate exercise. Poor exercise tolerance predisposes to increased susceptibility to other common age-related diseases, poor quality of life (QOL), and likely premature death. Here we review the putative literature investigating the role of exercise as an adjunct therapy across the lung cancer continuum (i.e., diagnosis to palliation). The current evidence suggests that exercise training is a safe and feasible adjunct therapy for operable lung cancer patients both before and after pulmonary resection. Among patients with inoperable disease, feasibility and safety studies of carefully prescribed exercise training are warranted. Preliminary evidence in this area supports that exercise therapy may be an important consideration in multidisciplinary management of patients diagnosed with lung cancer.

  4. Addressing cancer survivorship through public health: an update from the Centers for Disease Control and Prevention.

    PubMed

    Fairley, Temeika L; Pollack, Lori A; Moore, Angela R; Smith, Judith Lee

    2009-10-01

    Currently, there are nearly 12 million cancer survivors living in the United States. They face a myriad of personal and health issues related to their cancer treatment. Increased recognition of cancer survivorship as a distinct and important phase that follows the diagnosis and treatment of cancer has contributed to the development of public health-related strategies and plans to address those strategies. CDC's Division of Cancer Prevention and Control (DCPC) uses an interdisciplinary public health approach to address the needs of cancer survivors through applied research, public health surveillance and data collection, education, and health promotion, especially among underserved populations that may be at risk for health disparities. Our surveillance activities contribute to population-based descriptions of the health and treatment experiences of cancer survivors in the United States. These data inform applied research activities as well as provide baseline data on cancer survivors for local comprehensive cancer control programs. The knowledge gained by our research efforts informs the development of interventions, awareness and education campaigns, and other outreach activities targeting cancer survivors and those who care for and support them. Our partnerships with national organizations, state health agencies, and other key groups are essential in the development, implementation, and promotion of effective cancer control practices related to cancer survivorship. This article provides an overview of the cancer survivorship activities currently being implemented by DCPC. We highlight several public health surveillance, research, and programmatic outreach and partnership activities currently underway.

  5. Coping with breast cancer survivorship in Chinese women: the role of fatalism or fatalistic voluntarism.

    PubMed

    Cheng, Huilin; Sit, Janet W H; Twinn, Sheila F; Cheng, Karis K F; Thorne, Sally

    2013-01-01

    The existing knowledge on fatalism in the field of cancer has arisen largely from the cancer prevention and screening literature. Little is known about the role of fatalism in cancer survivorship, particularly within Chinese population. This study aimed to explore the role of fatalism in coping with breast cancer survivorship in Chinese women. In-depth interviews were conducted on 29 participants selected from those who attended a local cancer self-help organization in China. Interview transcripts were transcribed and analyzed using qualitative content analysis. Although they actively engaged in emotional regulation and self-care management to cope with survivorship, participants believed in fatalism and accepted their inability to change the final outcome of cancer. Such contradictory behavioral and cognitive aspects of coping reported by participants highlighted the role of a complex belief system involving Ming in positively influencing the interpretation of fatalism and the actual coping efforts taken. Findings suggest that fatalism related to coping in the Chinese context combined 2 elements: fatalistic belief in and acceptance of the way things are as well as the exertion of personal efforts over the situation. As such, it seems more effectively depicted in terms of the emerging concept "fatalistic voluntarism." When planning intervention for Chinese population, incorporating fatalistic voluntarism as a cognitive belief system in the process of adaptation to survivorship may be more culturally relevant for facilitating their coping behaviors.

  6. Childhood Cancer Survivorship Research in Minority Populations: A Position Paper from the Childhood Cancer Survivor Study

    PubMed Central

    Bhatia, Smita; Gibson, Todd M; Ness, Kirsten K; Liu, Qi; Oeffinger, Kevin C; Krull, Kevin R; Nathan, Paul C; Neglia, Joseph P; Leisenring, Wendy; Yasui, Yutaka; Robison, Leslie L; Armstrong, Gregory T

    2016-01-01

    By the middle of this century, racial/ethnic minority populations will collectively constitute 50% of the US population. This temporal shift in the racial/ethnic make-up of the US population demands a close look at the race/ethnicity-specific burden of morbidity and premature mortality among childhood cancer survivors. To optimize targeted long-term follow-up care, it is essential to understand whether the burden of morbidity borne by survivors of childhood cancer differs by race/ethnicity. This is challenging because the number of minority participants is often limited in current childhood cancer survivorship research, resulting in a paucity of race/ethnicity-specific recommendations and/or interventions. We show that while the overall childhood cancer incidence increased between 1973 and 2003, the mortality rate declined; however these changes did not differ appreciably by race/ethnicity. We speculate that any racial/ethnic differences in outcome are likely to be multifactorial, and draw upon data from the Childhood Cancer Survivor Study to illustrate the various contributors (socioeconomic characteristics, health behaviors and comorbidities) that could explain any observed differences in key treatment-related complications. Finally, we outline challenges in conducting race/ethnicity-specific childhood cancer survivorship research, showing that there are limited absolute numbers of children who are diagnosed and survive cancer in any one racial/ethnic minority population, precluding a rigorous evaluation of adverse events among specific primary cancer diagnoses and treatment exposure groups. PMID:27253866

  7. Advocacy, support and survivorship in prostate cancer.

    PubMed

    Dunn, J; Casey, C; Sandoe, D; Hyde, M K; Cheron-Sauer, M-C; Lowe, A; Oliffe, J L; Chambers, S K

    2017-02-01

    Across Australia, prostate cancer support groups (PCSG) have emerged to fill a gap in psychosocial care for men and their families. However, an understanding of the triggers and influencers of the PCSG movement is absent. We interviewed 21 SG leaders (19 PC survivors, two partners), of whom six also attended a focus group, about motivations, experiences, past and future challenges in founding and leading PCSGs. Thematic analysis identified four global themes: illness experience; enacting a supportive response; forming a national collective and challenges. Leaders described men's feelings of isolation and neglect by the health system as the impetus for PCSGs to form and give/receive mutual help. Negotiating health care systems was an early challenge. National affiliation enabled leaders to build a united voice in the health system and establish a group identity and collective voice. Affiliation was supported by a symbiotic relationship with tensions between independence, affiliation and governance. Future challenges were group sustainability and inclusiveness. Study findings describe how a grassroots PCSG movement arose consistent with an embodied health movement perspective. Health care organisations who seek to leverage these community resources need to be cognisant of SG values and purpose if they are to negotiate effective partnerships that maximise mutual benefit.

  8. Development and evaluation of a survey to assess survivor knowledge change after survivorship care plans: WiSDOM-B (Wisconsin Survey of cancer DiagnOsis and Management in Breast cancer).

    PubMed

    Rocque, Gabrielle B; Wisinski, Kari B; Buhr, Kevin A; Froeschner, Jamie L; Jones, Nathan; Donohue, Sarah; Wiegmann, Douglas; Sesto, Mary E; Tevaarwerk, Amye J

    2014-06-01

    The oncology community has increased efforts to inform survivors about long-term risks and planned follow-up after cancer treatment. Survivorship care plans (SCPs) have been recommended since 2005, yet the benefits of implementation are only now being emphasized. SCPs are hypothesized to enhance patient knowledge. The Wisconsin Survey of Diagnosis and Management in Breast Cancer (WiSDOM-B) was developed to measure changes in breast cancer survivor knowledge pre- and postdelivery of an SCP. The WiSDOM-B was developed with input from oncologists (medical, radiation, and surgical), patient advocates, cancer survivors, and survey design experts. Initially, nine patients evaluated survey content, and modifications were made to enhance clarity. Subsequently, 38 patients were enrolled in a randomized pilot trial assessing SCP impact on knowledge of diagnosis, treatment, late effects, and follow-up (WiSDOM-B) and satisfaction with knowledge (existing survey). The WiSDOM-B was developed using feedback from multiple stakeholders. Baseline knowledge was poor and remained stable in the control arm. There was a suggestion of increased survivor knowledge following receipt of SCPs in the intervention arm (68.4 vs. 74.4%). Change was not statistically significant compared with the control arm. Despite knowledge deficits, baseline satisfaction with knowledge was high for both groups, with 100% of patients being satisfied/very satisfied with information provided. Satisfaction did not change significantly following SCP receipt. The WiSDOM-B assesses survivor knowledge of cancer diagnosis, treatment, follow-up, and side effects. It will be a useful tool for future studies assessing the impact of care plans on survivor knowledge.

  9. Survivorship: Introduction and Definition

    PubMed Central

    Denlinger, Crystal S.; Carlson, Robert W.; Are, Madhuri; Baker, K. Scott; Davis, Elizabeth; Edge, Stephen B.; Friedman, Debra L.; Goldman, Mindy; Jones, Lee; King, Allison; Kvale, Elizabeth; Langbaum, Terry S.; Ligibel, Jennifer A.; McCabe, Mary S.; McVary, Kevin T.; Melisko, Michelle; Montoya, Jose G.; Mooney, Kathi; Morgan, Mary Ann; O’Connor, Tracey; Paskett, Electra D.; Raza, Muhammad; Syrjala, Karen L.; Urba, Susan G.; Wakabayashi, Mark T.; Zee, Phyllis; McMillian, Nicole; Freedman-Cass, Deborah

    2015-01-01

    Many cancer survivors experience physical and/or psychosocial side effects, which can be severe, debilitating, and sometimes permanent. These NCCN Guidelines for Survivorship provide screening, evaluation, and treatment recommendations for common consequences of cancer and cancer treatment for health care professionals who work with survivors of adult-onset cancer in the posttreatment period. These introductory sections of the guidelines include the panel’s definition of cancer survivors, a discussion of the effects of cancer and its treatment, general principles and standards for survivorship care, and guidance regarding screening for problems that require further assessment. PMID:24453291

  10. Surveillance and Survivorship after Treatment for Colon Cancer

    PubMed Central

    Makhoul, Rami; Alva, Suraj; Wilkins, Kirsten B.

    2015-01-01

    Colorectal cancer is the third most common cancer diagnosed in the United States. Majority of patients have localized disease that is amenable to curative resection. Disease recurrence remains a major concern after resection. In addition, patients are at an increased risk for developing a second or metachronous colon cancer. The principal goal of surveillance following treatment of colon cancer is to improve disease-free and overall survival. Survivorship is a distinct phase following surveillance to help improve quality of life and promote longevity. PMID:26648797

  11. Cancer survivorship research in Europe and the United States: where have we been, where are we going, and what can we learn from each other?

    PubMed

    Rowland, Julia H; Kent, Erin E; Forsythe, Laura P; Loge, Jon Håvard; Hjorth, Lars; Glaser, Adam; Mattioli, Vittorio; Fosså, Sophie D

    2013-06-01

    The growing number of cancer survivors worldwide has led to of the emergence of diverse survivorship movements in the United States and Europe. Understanding the evolution of cancer survivorship within the context of different political and health care systems is important for identifying the future steps that need to be taken and collaborations needed to promote research among and enhance the care of those living after cancer. The authors first review the history of survivorship internationally and important related events in both the United States and Europe. Lessons learned from survivorship research are then broadly discussed, followed by examination of the infrastructure needed to sustain and advance this work, including platforms for research, assessment tools, and vehicles for the dissemination of findings. Future perspectives concern the identification of collaborative opportunities for investigators in Europe and the United States to accelerate the pace of survivorship science going forward.

  12. Paper-Based Survivorship Care Plans May be Less Helpful for Cancer Patients Who Search for Disease-Related Information on the Internet: Results of the Registrationsystem Oncological Gynecology (ROGY) Care Randomized Trial

    PubMed Central

    Ezendam, Nicole PM; Pijnenborg, Johanna MA; Boll, Dorry; Vos, Maria Caroline; Kruitwagen, Roy FPM; van de Poll-Franse, Lonneke V

    2016-01-01

    Background The Institute of Medicine recommends Survivorship Care Plans (SCPs) for all cancer survivors. However, it is unclear whether certain patient groups may or may not benefit from SCPs. Objective The aim was to assess whether the effects of an automatically generated paper SCP on patients’ satisfaction with information provision and care, illness perceptions, and health care utilization were moderated by disease-related Internet use. Methods Twelve hospitals were randomized to either SCP care or usual care in the pragmatic cluster randomized Registrationsystem Oncological GYnecology (ROGY) Care trial. Newly diagnosed endometrial cancer patients completed questionnaires after diagnosis (N=221; response: 74.7%, 221/296), 6 months (n=158), and 12 months (n=147), including patients’ satisfaction with information provision and care, illness perceptions, health care utilization (how many times patients visited a medical specialist or primary care physician about their cancer in the past 6 months), and disease-related Internet use (whether patients used the Internet to look for information about cancer). Results In total, 80 of 221 (36.2%) patients used the Internet to obtain disease-related information. Disease-related Internet use moderated the SCP care effect on the amount of information received about the disease (P=.03) and medical tests (P=.01), helpfulness of the information (P=.01), and how well patients understood their illness (P=.04). All stratified analyses were not statistically significant. However, it appeared that patients who did not seek disease-related information on the Internet in the SCP care arm reported receiving more information about their disease (mean 63.9, SD 20.1 vs mean 58.3, SD 23.7) and medical tests (mean 70.6, SD 23.5 vs mean 64.7, SD 24.9), finding the information more helpful (76.7, SD 22.9 vs mean 67.8, SD 27.2; scale 0-100), and understanding their illness better (mean 6.6, SD 3.0 vs mean 6.1, SD 3.2; scale 1-10) than

  13. Paper-Based Survivorship Care Plans May be Less Helpful for Cancer Patients Who Search for Disease-Related Information on the Internet: Results of the Registrationsystem Oncological Gynecology (ROGY) Care Randomized Trial.

    PubMed

    Nicolaije, Kim Ah; Ezendam, Nicole Pm; Pijnenborg, Johanna Ma; Boll, Dorry; Vos, Maria Caroline; Kruitwagen, Roy Fpm; van de Poll-Franse, Lonneke V

    2016-07-08

    The Institute of Medicine recommends Survivorship Care Plans (SCPs) for all cancer survivors. However, it is unclear whether certain patient groups may or may not benefit from SCPs. The aim was to assess whether the effects of an automatically generated paper SCP on patients' satisfaction with information provision and care, illness perceptions, and health care utilization were moderated by disease-related Internet use. Twelve hospitals were randomized to either SCP care or usual care in the pragmatic cluster randomized Registrationsystem Oncological GYnecology (ROGY) Care trial. Newly diagnosed endometrial cancer patients completed questionnaires after diagnosis (N=221; response: 74.7%, 221/296), 6 months (n=158), and 12 months (n=147), including patients' satisfaction with information provision and care, illness perceptions, health care utilization (how many times patients visited a medical specialist or primary care physician about their cancer in the past 6 months), and disease-related Internet use (whether patients used the Internet to look for information about cancer). In total, 80 of 221 (36.2%) patients used the Internet to obtain disease-related information. Disease-related Internet use moderated the SCP care effect on the amount of information received about the disease (P=.03) and medical tests (P=.01), helpfulness of the information (P=.01), and how well patients understood their illness (P=.04). All stratified analyses were not statistically significant. However, it appeared that patients who did not seek disease-related information on the Internet in the SCP care arm reported receiving more information about their disease (mean 63.9, SD 20.1 vs mean 58.3, SD 23.7) and medical tests (mean 70.6, SD 23.5 vs mean 64.7, SD 24.9), finding the information more helpful (76.7, SD 22.9 vs mean 67.8, SD 27.2; scale 0-100), and understanding their illness better (mean 6.6, SD 3.0 vs mean 6.1, SD 3.2; scale 1-10) than patients in the usual care arm did. In

  14. Survivorship services for adult cancer populations: a pan-Canadian guideline

    PubMed Central

    Howell, D.; Hack, T.F.; Oliver, T.K.; Chulak, T.; Mayo, S.; Aubin, M.; Chasen, M.; Earle, C.C.; Friedman, A.J.; Green, E.; Jones, G.W.; Jones, J.M.; Parkinson, M.; Payeur, N.; Sabiston, C.M.; Sinclair, S.

    2011-01-01

    Objective Our goal was to develop evidence-based recommendations for the organization and structure of cancer survivorship services, and best-care practices to optimize the health and well-being of post–primary treatment survivors. This review sought to determine the optimal organization and care delivery structure for cancer survivorship services, and the specific clinical practices and interventions that would improve or maximize the psychosocial health and overall well-being of adult cancer survivors. Data Sources We conducted a systematic search of the Inventory of Cancer Guidelines at the Canadian Partnership Against Cancer, the U.S. National Guideline Clearinghouse, the Canadian Medical Association InfoBase, medline (ovid: 1999 through November 2009), embase (ovid: 1999 through November 2009), Psychinfo (ovid: 1999 through November 2009), the Cochrane Library (ovid; Issue 1, 2009), and cinahl (ebsco: 1999 through December 2009). Reference lists of related papers and recent review articles were scanned for additional citations. Methods Articles were selected for inclusion as evidence in the systematic review if they reported on organizational system components for survivors of cancer, or on psychosocial or supportive care interventions HOWELL et al. designed for survivors of cancer. Articles were excluded from the systematic review if they focused only on pediatric cancer survivor populations or on populations that transitioned from pediatric cancer to adult services; if they addressed only pharmacologic interventions or diagnostic testing and follow-up of cancer survivors; if they were systematic reviews with inadequately described methods; if they were qualitative or descriptive studies; and if they were opinion papers, letters, or editorials. Data Extraction and Synthesis Evidence was selected and reviewed by three members of the Cancer Journey Survivorship Expert Panel (SM, TC, TKO). The resulting summary of the evidence was guided further and reviewed

  15. Home-based multidimensional survivorship programmes for breast cancer survivors.

    PubMed

    Cheng, Karis Kin Fong; Lim, Yee Ting Ethel; Koh, Zhi Min; Tam, Wilson Wai San

    2017-08-24

    The prognosis and survival rate of women with breast cancer have significantly improved worldwide. Effective home-based multidimensional programmes for breast cancer survivors have gained an ever greater emphasis in survivorship care to maximise women's quality of life for their successful transition to rehabilitation and normal life. It is important to summarise the best available evidence to evaluate the effects of home-based multidimensional survivorship programmes on quality of life in women within 10 years of the completion of surgery or adjuvant cancer therapy for breast cancer, or both. To assess the effects of home-based, multidimensional survivorship (HBMS) programmes on maintaining or improving the quality of life in breast cancer survivors. In April 2016 we searched the Cochrane Breast Cancer Specialised Register, CENTRAL, PubMed, Embase, CINAHL Plus, PsycINFO, Web of Science, and the World Health Organization's International Clinical Trials Registry Platform (WHO ICTRP) and ClinicalTrials.gov. We also screened reference lists of all identified studies and contacted study authors. Randomised controlled trials (RCTs) and quasi-RCTs assessing the effects of HBMS programmes in maintaining or improving quality of life in women with stages 0 to 3 breast cancer who completed primary cancer treatment (surgery or adjuvant cancer therapy, or both) up to 10 years earlier. We considered studies where the interventions included more than one of the following listed components: educational (such as information provision and self-management advice), physical (such as exercise training and resistance training) and psychological (such as counselling and cognitive therapies), to constitute a multidimensional programme. Interventions had to be allowed to be carried out at home. Two authors independently assessed eligible studies for inclusion, and performed quality assessment and extracted relevant data of the included studies. Quality of life was the primary outcome of

  16. Symptom Burden and Integrative Medicine in Cancer Survivorship

    PubMed Central

    Cutshall, Susanne M.; Cha, Stephen S.; Ness, Sheryl M.; Stan, Daniela L.; Christensen, Sarah A.; Bhagra, Anjali; Price, Katharine A.; Thompson, Carrie A.; Hashmi, Shahrukh K.; Chon, Tony Y.; McCray, Tracy J.; Sood, Amit; Bauer, Brent A.; Ruddy, Kathryn J.

    2015-01-01

    Purpose To learn the level of experience with, interest in, and desire for knowledge about integrative medicine (IM) among cancer survivors. Methods Cancer survivors attending the 2014 National Cancer Survivors Day in Rochester, Minnesota, were recruited to participate in a 1-page survey about their ongoing health concerns and symptoms, as well as their experience with, interest in, and desire for knowledge about IM. Two-sided t test was used for univariate analyses of impact of sex, time since diagnosis, and age. Results Among the 260 cancer survivors, 171 persons (female, 74%; male, 26%) completed the survey (mean age, 64.6 years). Symptoms most commonly somewhat or more bothersome were fear of recurrence (52%), stress (43%), fatigue (43%), difficulty sleeping (33%), and weight gain (31%). The most used IM resources were exercise (75%), improved nutrition and diet (66%), stress management (42%), dietary supplementation (33%), meditation (25%), and massage (22%). Older patients (age, ≥65 years) were less experienced with, interested in, and desiring of knowledge about IM techniques. Sex and time since diagnosis were not strongly predictive of most survey response categories. Conclusions Cancer survivors have adverse effects for years into survivorship. They use and express interest in various IM techniques to help manage symptoms. It is critical that oncology providers help survivors address ongoing health concerns. Education about and access to evidence-based IM techniques may have important roles in comprehensive cancer survivorship programs. PMID:25724408

  17. Evaluation of a breast and colon cancer survivorship program.

    PubMed

    McCollum, Kennon H; Wood, Felecia G; Auriemma, Kimberly

    2014-04-01

    This article describes a cancer survivorship program that addressed quality of life (QOL) changes related to chemotherapy. The program focused on adult breast and colon cancer survivors at a community oncology practice in the southeastern United States, and consisted of an educational visit designed to identify and address QOL changes that occurred as a result of chemotherapy. The QOL of Cancer Survivors (QOL-CS) survey administered before and after the visit analyzed QOL metrics, which were combined with program evaluation data to assess physical, psychosocial, social, and spiritual well-being changes that may have occurred as a result of program participation. Differences in QOL-CS scores did not represent statistically significant changes in QOL for program participants. However, program evaluation responses identified perceived changes in QOL as a result of participating in cancer treatment and a subsequent cancer survivorship program, which demonstrated clinical significance for program participants. Physical, psychosocial, social, and spiritual well-being measures were affected by program participation. Improvement in distress related to the initial cancer diagnosis and family distress were the most significant reported changes, and male gender and advanced age were associated with improved psychosocial well-being.

  18. Cancer Survivorship Research in Europe and the United States: Where have we been, where are we going, and what can we learn from each other?

    PubMed Central

    Kent, Erin E.; Forsythe, Laura P.; Loge, Jon Håvard; Hjorth, Lars; Glaser, Adam; Mattioli, Vittorio; Fosså, Sophie D.

    2013-01-01

    The growing number of cancer survivors worldwide has led to of the emergence of diverse survivorship movements in the United States and Europe. Understanding the evolution of cancer survivorship within the context of different political and healthcare systems is important for identifying the future steps that need to be taken and collaborations needed to promote research among and enhance the care of those living after cancer. We first review the history of survivorship internationally and important related events in both the US and Europe. We then discuss lessons learned from survivorship research broadly, followed by examination of the infrastructure needed to sustain and advance this work, including: platforms for research, assessment tools, and vehicles for the dissemination of findings. We end with future perspectives, identifying the collaborative opportunities for investigators in Europe and the United States to accelerate the pace of survivorship science going forward. PMID:23695922

  19. Cancer survivorship, health insurance, and employment transitions among older workers.

    PubMed

    Tunceli, Kaan; Short, Pamela Farley; Moran, John R; Tunceli, Ozgur

    2009-01-01

    This study examined the effect of job-related health insurance on employment transitions (labor force exits, reductions in hours, and job changes) of older working cancer survivors. Using multivariate models, we compared longitudinal data for the period 1997-2002 from the Penn State Cancer Survivor Study to similar data for workers with no cancer history in the Health and Retirement Study, who were also ages 55 to 64 at follow-up. The interaction of cancer survivorship with health insurance at diagnosis was negative and significant in predicting labor force exits, job changes, and transitions to part-time employment for both genders. The differential effect of job-related health insurance on the labor market dynamics of cancer survivors represents an additional component of the economic and psychosocial burden of cancer on survivors.

  20. Cancer Survivorship, Health Insurance, and Employment Transitions among Older Workers

    PubMed Central

    Tunceli, Kaan; Short, Pamela Farley; Moran, John R.; Tunceli, Ozgur

    2014-01-01

    This study examined the effect of job-related health insurance on employment transitions (labor force exits, reductions in hours, and job changes) of older working cancer survivors. Using multivariate models, we compared longitudinal data for the period 1997–2002 from the Penn State Cancer Survivor Study to similar data for workers with no cancer history in the Health and Retirement Study, who were also ages 55 to 64 at follow up. The interaction of cancer survivorship with health insurance at diagnosis was negative and significant in predicting labor force exits, job changes, and transitions to part-time employment for both genders. The differential effect of job-related health insurance on the labor market dynamics of cancer survivors represents an additional component of the economic and psychosocial burden of cancer on survivors. PMID:19489481

  1. Physical activity motivation and cancer survivorship.

    PubMed

    Pinto, Bernardine M; Ciccolo, Joseph T

    2011-01-01

    Physical activity (PA) participation has been shown to be helpful in improving physical and mental well-being among cancer survivors. The purpose of this chapter is to review the literature on the determinants of physical activity motivation and behavior among cancer survivors. Using theories of behavior change, researchers have sought to identify the correlates of motivation that predict the participation in regular physical activity in observational studies, while intervention studies have focused on manipulating those factors to support the initiation of physical activity. The majority of this work has been conducted with breast cancer survivors, and there is an interest in expanding this work to survivors of others cancers (e.g., prostate, lung, and colorectal cancer). Results suggest that constructs from the Theory of Planned Behavior (TPB), Transtheoretical Model (TTM), and Social Cognitive Theory (SCT) are associated with greater motivation for physical activity, and some of these constructs have been used in interventions to promote physical activity adoption. There is scope for understanding the determinants of physical activity adoption in various cancer survivor populations. Much more needs to done to identify the determinants of maintenance of physical activity.

  2. Childhood cancer survivorship research in minority populations: A position paper from the Childhood Cancer Survivor Study.

    PubMed

    Bhatia, Smita; Gibson, Todd M; Ness, Kirsten K; Liu, Qi; Oeffinger, Kevin C; Krull, Kevin R; Nathan, Paul C; Neglia, Joseph P; Leisenring, Wendy; Yasui, Yutaka; Robison, Leslie L; Armstrong, Gregory T

    2016-08-01

    By the middle of this century, racial/ethnic minority populations will collectively constitute 50% of the US population. This temporal shift in the racial/ethnic composition of the US population demands a close look at the race/ethnicity-specific burden of morbidity and premature mortality among survivors of childhood cancer. To optimize targeted long-term follow-up care, it is essential to understand whether the burden of morbidity borne by survivors of childhood cancer differs by race/ethnicity. This is challenging because the number of minority participants is often limited in current childhood cancer survivorship research, resulting in a paucity of race/ethnicity-specific recommendations and/or interventions. Although the overall childhood cancer incidence increased between 1973 and 2003, the mortality rate declined; however, these changes did not differ appreciably by race/ethnicity. The authors speculated that any racial/ethnic differences in outcome are likely to be multifactorial, and drew on data from the Childhood Cancer Survivor Study to illustrate the various contributors (socioeconomic characteristics, health behaviors, and comorbidities) that could explain any observed differences in key treatment-related complications. Finally, the authors outlined challenges in conducting race/ethnicity-specific childhood cancer survivorship research, demonstrating that there are limited absolute numbers of children who are diagnosed and survive cancer in any one racial/ethnic minority population, thereby precluding a rigorous evaluation of adverse events among specific primary cancer diagnoses and treatment exposure groups. Cancer 2016;122:2426-2439. © 2016 American Cancer Society.

  3. Adolescent and Young Adult Cancer Survivorship Educational Programming: A Qualitative Evaluation.

    PubMed

    Vollmer Dahlke, Deborah; Fair, Kayla; Hong, Yan Alicia; Kellstedt, Debra; Ory, Marcia G

    2017-02-10

    This program evaluation considers the need for increased professional and patient education for adolescent and young adult (AYA) cancer survivorship. Due to the high incidence of late effects of cancer treatment among AYA cancer survivors, knowledge sharing and communications are needed throughout the transition from cancer care into community care. AYA survivors are likely to need developmentally appropriate psychosocial care as well as extensive follow-on surveillance by physicians who are educated and aware of the likely chronic conditions and late effects that may occur in these patients. The objective of this study was to evaluate the outcomes of the After Cancer Care Ends, Survivorship Starts for Adolescent and Young Adults (ACCESS AYA) programming. The intent of the ACCESS AYA program was to build health literacy around AYA survivorship issues and to stimulate improved communications between survivors and health care providers. This paper addresses the central research question of "How did the ACCESS AYA program increase health literacy, communications, and understanding among AYA survivors and providers?" The primarily qualitative evaluation included a brief introductory survey of participant awareness and effectiveness of the ACCESS AYA project serving as a recruitment tool. Survey respondents were invited to participate in in-depth interviews based on interview guides tailored to the different stakeholder groups. The evaluation used the Atlas Ti qualitative database and software for coding and key word analyses. Interrater reliability analyses were assessed using Cohen kappa analysis with Stata 12.1 (StataCorp LLC) software. The key themes, which included survivor wellbeing, health care professional education, cancer advocates role and education, hospital and community-based resources, and the role of societal support, are presented in a concept map. The interrater reliability scores (ranging from 1 to minus 1) were .893 for first cycle coding and .784

  4. Adolescent and Young Adult Cancer Survivorship Educational Programming: A Qualitative Evaluation

    PubMed Central

    Fair, Kayla; Hong, Yan Alicia; Kellstedt, Debra; Ory, Marcia G

    2017-01-01

    Background This program evaluation considers the need for increased professional and patient education for adolescent and young adult (AYA) cancer survivorship. Due to the high incidence of late effects of cancer treatment among AYA cancer survivors, knowledge sharing and communications are needed throughout the transition from cancer care into community care. AYA survivors are likely to need developmentally appropriate psychosocial care as well as extensive follow-on surveillance by physicians who are educated and aware of the likely chronic conditions and late effects that may occur in these patients. Objective The objective of this study was to evaluate the outcomes of the After Cancer Care Ends, Survivorship Starts for Adolescent and Young Adults (ACCESS AYA) programming. The intent of the ACCESS AYA program was to build health literacy around AYA survivorship issues and to stimulate improved communications between survivors and health care providers. This paper addresses the central research question of “How did the ACCESS AYA program increase health literacy, communications, and understanding among AYA survivors and providers?” Methods The primarily qualitative evaluation included a brief introductory survey of participant awareness and effectiveness of the ACCESS AYA project serving as a recruitment tool. Survey respondents were invited to participate in in-depth interviews based on interview guides tailored to the different stakeholder groups. The evaluation used the Atlas Ti qualitative database and software for coding and key word analyses. Interrater reliability analyses were assessed using Cohen kappa analysis with Stata 12.1 (StataCorp LLC) software. Results The key themes, which included survivor wellbeing, health care professional education, cancer advocates role and education, hospital and community-based resources, and the role of societal support, are presented in a concept map. The interrater reliability scores (ranging from 1 to minus 1

  5. A qualitative investigation of cancer survivorship experiences among rural Hispanics.

    PubMed

    Livaudais, Jennifer C; Thompson, Beti; Godina, Ruby; Islas, Ilda; Ibarra, Genoveva; Coronado, Gloria D

    2010-01-01

    Cancer survivorship experiences were explored among Hispanic men and women with cancer and family members of cancer survivors, recruited from two rural Washington communities in the Lower Yakima Valley. Five focus groups were conducted from February 2006 to October 2007 with 31 women and 10 men. Disbelief, fear, sadness, strength, courage, faith, and hope were common reactions to diagnosis. Concerns about family/children, losing medical coupons, and feelings of depression/isolation were identified as challenges faced after diagnosis. Participants identified smoking and environmental exposures as causes of cancer, but many believed operating on tumors caused cancer to spread. Participants used conventional treatments but identified herbal/natural remedies as cures. Most participants reported negative experiences with physicians and believed their community would benefit from language-appropriate information regarding prevention and treatment. The importance of linking survivors through support groups was emphasized and information elicited from sessions has been used to organize survivor support groups in these two communities.

  6. Childhood cancer survivorship educational resources in North American pediatric hematology/oncology fellowship training programs: a survey study.

    PubMed

    Nathan, Paul C; Schiffman, Joshua D; Huang, Sujuan; Landier, Wendy; Bhatia, Smita; Eshelman-Kent, Debra; Wright, Jennifer; Oeffinger, Kevin C; Hudson, Melissa M

    2011-12-15

    Childhood cancer survivors require life-long care by clinicians with an understanding of the specific risks arising from the prior cancer and its therapy. We surveyed North American pediatric hematology/oncology training programs to evaluate their resources and capacity for educating medical trainees about survivorship. An Internet survey was sent to training program directors and long-term follow-up clinic (LTFU) directors at the 56 US and Canadian centers with pediatric hematology/oncology fellowship programs. Perceptions regarding barriers to and optimal methods of delivering survivorship education were compared among training program and LTFU clinic directors. Responses were received from 45/56 institutions of which 37/45 (82%) programs require that pediatric hematology/oncology fellows complete a mandatory rotation focused on survivorship. The rotation is 4 weeks or less in 21 programs. Most (36/45; 80%) offer didactic lectures on survivorship as part of their training curriculum, and these are considered mandatory for pediatric hematology/oncology fellows at 26/36 (72.2%). Only 10 programs (22%) provide training to medical specialty trainees other than pediatric hematology/oncology fellows. Respondents identified lack of time for trainees to spend learning about late effects as the most significant barrier to providing survivorship teaching. LTFU clinic directors were more likely than training program directors to identify lack of interest in survivorship among trainees and survivorship not being a formal or expected part of the fellowship training program as barriers. The results of this survey highlight the need to establish standard training requirements to promote the achievement of basic survivorship competencies by pediatric hematology/oncology fellows. Copyright © 2011 Wiley Periodicals, Inc.

  7. Adaptation of the Illness Trajectory Theory to Describe the Work of Transitional Cancer Survivorship

    PubMed Central

    Klimmek, Rachel; Wenzel, Jennifer

    2013-01-01

    Purpose/Objectives Although frameworks for understanding survivorship continue to evolve, most are abstract and do not address the complex context of survivors’ transition following treatment completion. The purpose of this theory adaptation was to examine and refine the Illness Trajectory Theory, which describes the work of managing chronic illness, to address transitional cancer survivorship. Data Sources CINAHL, PubMed, and relevant Institute of Medicine reports were searched for survivors’ experiences during the year following treatment. Data Synthesis Using an abstraction tool, sixty-eight articles were selected from the initial search (N>700). Abstracted data were placed into a priori categories refined according to recommended procedures for theory derivation, followed by expert review. Conclusions Derivation resulted in a framework describing “the work of transitional cancer survivorship” (TCS work). TCS work is defined as survivor tasks, performed alone or with others, to carry out a plan of action for managing one or more aspects of life following primary cancer treatment. Theoretically, survivors engage in 3 reciprocally-interactive lines of work: (1) illness-related; (2) biographical; and (3) everyday life work. Adaptation resulted in refinement of these domains and the addition of survivorship care planning under “illness-related work”. Implications for Nursing Understanding this process of work may allow survivors/co-survivors to better prepare for the post-treatment period. This adaptation provides a framework for future testing and development. Validity and utility of this framework within specific survivor populations should also be explored. PMID:23107863

  8. The impact of chronic conditions on the economic burden of cancer survivorship: a systematic review

    PubMed Central

    Rim, Sun Hee; Guy, Gery P.; Yabroff, K. Robin; McGraw, Kathleen A.; Ekwueme, Donatus U.

    2016-01-01

    Introduction This systematic review examines the excess cost of chronic conditions on the economic burden of cancer survivorship among adults in the US. Areas covered Twelve published studies were identified. Although studies varied substantially in populations, comorbidities examined, methods, and types of cost reported, costs for cancer survivors with comorbidities generally increased with greater numbers of comorbidities or an increase in comorbidity index score. Survivors with comorbidities incurred significantly more in total medical costs, out-of-pocket costs, and costs by service type compared to cancer survivors without additional comorbidities. Expert commentary Cancer survivors with comorbidities bear significant excess out-of-pocket costs and their care is also more expensive to the healthcare system. On-going evaluation of different payment models, care coordination, and disease management programs for cancer survivors with comorbidities will be important in monitoring impact on healthcare costs. PMID:27649815

  9. Collaborative Research in Childhood Cancer Survivorship: The Current Landscape

    PubMed Central

    Bhatia, Smita; Armenian, Saro H.; Armstrong, Gregory T.; van Dulmen-den Broeder, Eline; Hawkins, Michael M.; Kremer, Leontien C.M.; Kuehni, Claudia E.; Olsen, Jørgen H.; Robison, Leslie L.; Hudson, Melissa M.

    2015-01-01

    Survivors of childhood cancer carry a substantial burden of morbidity and are at increased risk for premature death. Furthermore, clear associations exist between specific therapeutic exposures and the risk for a variety of long-term complications. The entire landscape of health issues encountered for decades after successful completion of treatment is currently being explored in various collaborative research settings. These settings include large population-based or multi-institutional cohorts and single-institution studies. The ascertainment of outcomes has depended on self-reporting, linkage to registries, or clinical assessments. Survivorship research in the cooperative group setting, such as the Children's Oncology Group, has leveraged the clinical trials infrastructure to explore the molecular underpinnings of treatment-related adverse events, and to understand specific complications in the setting of randomized risk-reduction strategies. This review highlights the salient findings from these large collaborative initiatives, emphasizing the need for life-long follow-up of survivors of childhood cancer, and describing the development of several guidelines and efforts toward harmonization. Finally, the review reinforces the need to identify populations at highest risk, facilitating the development of risk prediction models that would allow for targeted interventions across the entire trajectory of survivorship. PMID:26304891

  10. Collaborative Research in Childhood Cancer Survivorship: The Current Landscape.

    PubMed

    Bhatia, Smita; Armenian, Saro H; Armstrong, Gregory T; van Dulmen-den Broeder, Eline; Hawkins, Michael M; Kremer, Leontien C M; Kuehni, Claudia E; Olsen, Jørgen H; Robison, Leslie L; Hudson, Melissa M

    2015-09-20

    Survivors of childhood cancer carry a substantial burden of morbidity and are at increased risk for premature death. Furthermore, clear associations exist between specific therapeutic exposures and the risk for a variety of long-term complications. The entire landscape of health issues encountered for decades after successful completion of treatment is currently being explored in various collaborative research settings. These settings include large population-based or multi-institutional cohorts and single-institution studies. The ascertainment of outcomes has depended on self-reporting, linkage to registries, or clinical assessments. Survivorship research in the cooperative group setting, such as the Children's Oncology Group, has leveraged the clinical trials infrastructure to explore the molecular underpinnings of treatment-related adverse events, and to understand specific complications in the setting of randomized risk-reduction strategies. This review highlights the salient findings from these large collaborative initiatives, emphasizing the need for life-long follow-up of survivors of childhood cancer, and describing the development of several guidelines and efforts toward harmonization. Finally, the review reinforces the need to identify populations at highest risk, facilitating the development of risk prediction models that would allow for targeted interventions across the entire trajectory of survivorship.

  11. Gender and Role Differences in Couples' Communication During Cancer Survivorship.

    PubMed

    Lim, Jung-won; Paek, Min-so; Shon, En-jung

    2015-01-01

    Individuals with cancer and their partners often experience communication difficulties. However, questions still remain regarding the influence of gender and role in cancer survivor-partner communication within couples. The current study intended to examine the communication patterns in breast, colorectal, and prostate cancer survivor-partner couples during cancer survivorship and whether gender and role differences in couples communication exist. The dominant-less dominant method of sequential mixed design was used. Ten couples who were recruited from the University Hospital registry in Cleveland, Ohio, participated in both mail surveys and individual interviews. Family and cancer-related communication was assessed in the quantitative phase. Both male survivors and partners demonstrated better family communication scores compared with their female counterparts, whereas there were no gender differences in the cancer-related communication scores. In the qualitative phase, 3 major themes were identified: (1) selective sharing of cancer-related issues, (2) initiation of cancer-related communication, and (3) emotional reaction in communication. The patterns associated with these themes differed between the male survivor-female partner and female survivor-male partner couples. This study provides new knowledge about family and cancer-related communication. Our findings highlight the importance of understanding different perspectives in the quality of communication by gender and role. Exploring couples' communication patterns by gender and role stimulates the research and the development of effective consumer-centered communication interventions. The findings provide assessment tools to inform dyadic communication patterns for clinical and scientific purposes.

  12. Breast Cancer Survivorship: A Comprehensive Review of Long-Term Medical Issues and Lifestyle Recommendations

    PubMed Central

    Bodai, Balazs I; Tuso, Phillip

    2015-01-01

    Long-term survival rates after a diagnosis of breast cancer are steadily rising. This is good news, but clinicians must also recognize that this brings new challenges to the medical community. As breast cancer becomes a chronic condition rather than a life-threatening illness owing to advances in early diagnosis and more effective treatments, health care practitioners must recognize and manage the long-term sequelae of the constellation of therapeutic modalities. Survivors of breast cancer represent a unique and extremely complex group of patients; not only do they have the challenge of dealing with multiple long-term side effects of treatment protocols, but many are also forced to address the preexisting comorbidities of their therapies, which often include multiple other issues. Therapies have additional and/or additive side effects that may interfere with treatments directed toward the new primary diagnosis of breast cancer. Our mandate is to establish a smooth transition from patient with breast cancer to survivor of breast cancer while providing ongoing and future guidance. Certainly, the information and resources to accomplish this transition are readily available; however, they are scattered throughout the literature and therefore are not easily accessible or available to the primary care physician. It is imperative that the information available regarding survivorship issues be accessible in an organized and useful format. This article is a modest attempt to provide a comprehensive review of the long-term medical issues relevant to survivorship after the diagnosis and treatment of breast cancer. A predicted shortage of oncologists by 2020 is well-recognized. Therefore, the bulk of long-term care will become dependent on the primary care physician. This shift of care means that these physicians will need to be well educated in the long-term medical issues related to breast cancer treatment. PMID:25902343

  13. Sexual Health as a Survivorship Issue for Female Cancer Survivors

    PubMed Central

    Suzin, Daphne; McIlvenna, Susanne

    2014-01-01

    As more and more people are successfully treated for and live longer with cancer, greater attention is being directed toward the survivorship needs of this population. Women treated for cancer often experience issues related to sexual health and intimacy, which are frequently cited as areas of concern, even among long-term survivors. Unfortunately, data suggest that providers infrequently discuss these issues. We reviewed a contemporary understanding of sexual health of women and the impact of treatment on both sexual function and intimacy. We also provide a review of the diagnosis using the newest classification put forth by the American Psychiatric Association in the Diagnostic and Statistical Manual of Mental Disorders, fifth edition, and potential treatments, including both endocrine and nonendocrine treatments that the general oncologist may be asked about when discussing sexual health with his or her patients. PMID:24396051

  14. Cancer survivorship practices, services, and delivery: a report from the Children's Oncology Group (COG) nursing discipline, adolescent/young adult, and late effects committees.

    PubMed

    Eshelman-Kent, Debra; Kinahan, Karen E; Hobbie, Wendy; Landier, Wendy; Teal, Steve; Friedman, Debra; Nagarajan, Rajaram; Freyer, David R

    2011-12-01

    To describe survivorship services provided by the Children's Oncology Group (COG), an assessment of services was undertaken. Our overall aims were (1) to describe survivorship services, including the extent of services provided, resources (personnel, philanthropy, and research funding), billing practices, and barriers to care and 2) to describe models of care that are in use for childhood cancer survivors and adult survivors of childhood cancer. One hundred seventy-nine of 220 COG institutions (81%) completed an Internet survey in 2007. One hundred fifty-five (87%) reported providing survivorship care. Fifty-nine percent of institutions provide care for their pediatric population in specialized late effects programs. For adult survivors, 47% of institutions chose models of care, which included transitioning to adult providers for risk-based health care, while 44% of institutions keep survivors indefinitely at the treating institution (Cancer Center Based Model without Community Referral). Sixty-eight percent provide survivors with a copy of their survivorship care plan. Only 31% of institutions provide a detailed summary of results after each clinic visit, and 41% have a database to track survivor health outcomes. Minimal time required for initial and annual survivorship visits is estimated to be approximately 120 and 90 min, respectively. The most prevalent barriers to care were the lack of dedicated time for program development and a perceived insufficient knowledge on the part of the clinician receiving the transition referral. Not all COG institutions provide dedicated survivorship care, care plans, or have databases for tracking outcomes. Transitioning to adult providers is occurring within the COG. Survivorship care is time intensive.

  15. A QUALITATIVE INVESTIGATION OF CANCER SURVIVORSHIP EXPERIENCES AMONG RURAL HISPANICS

    PubMed Central

    Thompson, Beti; Godina, Ruby; Islas, Ilda; Ibarra, Genoveva; Coronado, Gloria D.

    2011-01-01

    Cancer survivorship experiences were explored among Hispanic men and women with cancer and family members of cancer survivors, recruited from two rural Washington communities in the Lower Yakima Valley. Five focus groups were conducted from February 2006–October 2007 with 31 women and 10 men. Disbelief, fear, sadness, strength, courage, faith, and hope were common reactions to diagnosis. Concerns about family/children, losing medical coupons, and feelings of depression/isolation were identified as challenges faced after diagnosis. Participants identified smoking and environmental exposures as causes of cancer, but many believed operating on tumors caused cancer to spread. Participants used conventional treatments, but identified herbal/natural remedies as cures. Most participants reported negative experiences with physicians, and believed their community would benefit from language-appropriate information regarding prevention and treatment. The importance of linking survivors through support groups was emphasized and information elicited from sessions has been used to organize survivor support groups in these two communities. PMID:20623413

  16. Omega-3 fatty acids for breast cancer prevention and survivorship.

    PubMed

    Fabian, Carol J; Kimler, Bruce F; Hursting, Stephen D

    2015-05-04

    Women with evidence of high intake ratios of the marine omega-3 fatty acids eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA) relative to the omega-6 arachidonic acid have been found to have a reduced risk of breast cancer compared with those with low ratios in some but not all case-control and cohort studies. If increasing EPA and DHA relative to arachidonic acid is effective in reducing breast cancer risk, likely mechanisms include reduction in proinflammatory lipid derivatives, inhibition of nuclear factor-κB-induced cytokine production, and decreased growth factor receptor signaling as a result of alteration in membrane lipid rafts. Primary prevention trials with either risk biomarkers or cancer incidence as endpoints are underway but final results of these trials are currently unavailable. EPA and DHA supplementation is also being explored in an effort to help prevent or alleviate common problems after a breast cancer diagnosis, including cardiac and cognitive dysfunction and chemotherapy-induced peripheral neuropathy. The insulin-sensitizing and anabolic properties of EPA and DHA also suggest supplementation studies to determine whether these omega-3 fatty acids might reduce chemotherapy-associated loss of muscle mass and weight gain. We will briefly review relevant omega-3 fatty acid metabolism, and early investigations in breast cancer prevention and survivorship.

  17. Is it time to address survivorship in advanced breast cancer? A review article.

    PubMed

    Di Lascio, Simona; Pagani, Olivia

    2017-02-01

    The outcome of advanced breast cancer has significantly improved over recent decades. As a consequence, the complex needs of patients living with the disease and their care-givers should be addressed not only in terms of supportive and palliative care but also of "survivorship" requirements. The multidisciplinary approach to advanced breast cancer should encompass - early in the history of the disease - not only physical but also functional, social, psychological and spiritual domains. It is important to clearly define the disease context with patients and families ("chronic" preferred to "incurable"), addressing the concept of uncertainty, and tailoring the treatment strategy according to both disease status and individual priorities. Specific psychosocial needs of young and elderly women and male patients - i.e. social security, job flexibility, rehabilitation (including sexuality), home and child care - should be recognized and supported. This review will address the key questions associated with survivorship in this disease context, recognizing the dearth of specific data and the urgent need for targeted clinical research and tailored interventions. Copyright © 2016 Elsevier Ltd. All rights reserved.

  18. Appraisal of the cancer experience by family members and survivors in long-term survivorship.

    PubMed

    Bowman, Karen F; Rose, Julia H; Deimling, Gary T

    2006-09-01

    This study assessed the appraisal of the stressfulness of the cancer experience and its correlates for family members and older survivors living in the long-term survivorship phase of the disease. On average, family members appraised the cancer experience as more stressful than their surviving relatives. Beliefs about the effect of the diagnosis and treatment on family members were important correlates for both family members and survivors in the appraisal process. Cancer characteristics were not related to appraisal for survivors, but stage at diagnosis was associated with a more stressful appraisal for family members. Demographic characteristics were unrelated to appraisal for family members, but being African-American was linked to a less stressful appraisal for survivors. These findings highlight the stressful impact of the cancer experience on family members and can help guide health care interventions which include family members from African-American and White ethnicities.

  19. Survivorship education for Latina breast cancer survivors: Empowering Survivors through education

    PubMed Central

    Juarez, Gloria; Mayorga, Lina; Hurria, Arti; Ferrell, Betty

    2013-01-01

    Objectives Nueva Luz is an English and Spanish quality of life (QOL) intervention developed to address the educational needs of Latina breast cancer survivors and provide strategies to assist in their transition into survivorship. Methods A qualitative approach was used to evaluate the English and Spanish educational intervention (Nueva Luz). A purposive sample of eight Latina breast cancer survivors was selected from the group who received the intervention to participate in a digitally recorded interview. Data was analyzed using thematic analysis. Results Findings provide evidence that the one-on-one tailored approach is a feasible and acceptable method of providing a bilingual psychosocial intervention. The provision of printed bilingual information along with the verbal instruction from a bilingual and culturally competent health care provider can be effective in helping Latina breast cancer survivor’s transition successfully into survivorship, improve QOL and contribute to better patient outcomes Conclusions The study informs our understanding of the cultural context in patient education content and delivery of psychosocial interventions. The findings may also have relevance for other ethnic minority cancer survivors. PMID:24416043

  20. 'Intensive care unit survivorship' - a constructivist grounded theory of surviving critical illness.

    PubMed

    Kean, Susanne; Salisbury, Lisa G; Rattray, Janice; Walsh, Timothy S; Huby, Guro; Ramsay, Pamela

    2017-10-01

    To theorise intensive care unit survivorship after a critical illness based on longitudinal qualitative data. Increasingly, patients survive episodes of critical illness. However, the short- and long-term impact of critical illness includes physical, psychological, social and economic challenges long after hospital discharge. An appreciation is emerging that care needs to extend beyond critical illness to enable patients to reclaim their lives postdischarge with the term 'survivorship' being increasingly used in this context. What constitutes critical illness survivorship has, to date, not been theoretically explored. Longitudinal qualitative and constructivist grounded theory. Interviews (n = 46) with 17 participants were conducted at four time points: (1) before discharge from hospital, (2) four to six weeks postdischarge, (3) six months and (4) 12 months postdischarge across two adult intensive care unit setting. Individual face-to-face interviews. Data analysis followed the principles of Charmaz's constructivist grounded theory. 'Intensive care unit survivorship' emerged as the core category and was theorised using concepts such as status passages, liminality and temporality to understand the various transitions participants made postcritical illness. Intensive care unit survivorship describes the unscheduled status passage of falling critically ill and being taken to the threshold of life and the journey to a life postcritical illness. Surviving critical illness goes beyond recovery; surviving means 'moving on' to life postcritical illness. 'Moving on' incorporates a redefinition of self that incorporates any lingering intensive care unit legacies and being in control of one's life again. For healthcare professionals and policymakers, it is important to realise that recovery and transitioning through to survivorship happen within an individual's time frame, not a schedule imposed by the healthcare system. Currently, there are no care pathways or policies in

  1. It takes a (virtual) village: crowdsourcing measurement consensus to advance survivorship care planning.

    PubMed

    Parry, Carla; Beckjord, Ellen; Moser, Richard P; Vieux, Sana N; Padgett, Lynne S; Hesse, Bradford W

    2015-03-01

    We report results from the use of an innovative tool (the Grid-Enabled Measures (GEM) database) to drive consensus on the use of measures evaluating the efficacy and implementation of survivorship care plans. The goal of this initiative was to increase the use of publicly available shared measures to enable comparability across studies. Between February and August 2012, research and practice communities populated the GEM platform with constructs and measures relevant to survivorship care planning, rated the measures, and provided qualitative feedback on the quality of the measures. Fifty-one constructs and 124 measures were entered into the GEM-Care Planning workspace by participants. The greatest number of measures appeared in the domains of Health and Psychosocial Outcomes, Health Behaviors, and Coordination of Care/Transitional Care. Using technology-mediated social participation, GEM presents a novel approach to how we measure and improve the quality of survivorship care.

  2. Concept analysis of empowerment from survivor and nurse perspectives within the context of cancer survivorship.

    PubMed

    Jerofke, Teresa A

    2013-01-01

    The liberal usage of the concept of empowerment has led to the development of a broad and ambiguous term. In health care, empowerment is a core principle of patient-centered care that promotes patient engagement in health management. This is an analysis of the concept of empowerment within the context of cancer survivorship using both Rodgers' evolutionary concept analysis and Caron and Bower's dimensional analysis. The dimensional analysis followed the evolutionary concept analysis as the perspectives of patients and nurse providers emerged in the analysis. Data sources included a sample of 249 papers from multiple disciplines covering the period 2000-2013. Empowerment is defined as power-with that is actualized through a beneficial relationship of mutual trust and respect for autonomy that develops within a dynamic and patient-centered process. The attributes, along with the antecedents and consequences, provide a foundation for future theory development of empowerment in the context of cancer survivorship. This analysis demonstrated that although nurses and survivors may have a similar definition of the concept of empowerment, the uses and assumptions of that definition may differ. Future studies should be conducted measuring the effectiveness of an intervention that uses the components of the process of empowerment from survivors' perspectives.

  3. Fertility Preservation: A Key Survivorship Issue for Young Women with Cancer

    PubMed Central

    Angarita, Ana Milena; Johnson, Cynae A.; Fader, Amanda Nickles; Christianson, Mindy S.

    2016-01-01

    Fertility preservation in the young cancer survivor is recognized as a key survivorship issue by the American Society of Clinical Oncology and the American Society of Reproductive Medicine. Thus, health-care providers should inform women about the effects of cancer therapy on fertility and should discuss the different fertility preservation options available. It is also recommended to refer women expeditiously to a fertility specialist in order to improve counseling. Women’s age, diagnosis, presence of male partner, time available, and preferences regarding use of donor sperm influence the selection of the appropriate fertility preservation option. Embryo and oocyte cryopreservation are the standard techniques used while ovarian tissue cryopreservation is new, yet promising. Despite the importance of fertility preservation for cancer survivors’ quality of life, there are still communication and financial barriers faced by women who wish to pursue fertility preservation. PMID:27200291

  4. A Content Analysis of Cancer Survivorship Coverage in a Representative Sample of U.S. News Outlets

    PubMed Central

    Larson, Sandra; Long, Marilee; Slater, Michael D.; Bettinghaus, Erwin P.; Read, Andrew

    2010-01-01

    Background Media are popular sources of cancer information, yet little is known about how survivors are depicted. Methods This study analyzes coverage of cancer survivors in a nationally representative sample of newspapers and television newscasts. Stories were coded for cancer type, gender, age, survivorship length and status, treatment types, and spirituality, among other variables. Results Media provide limited information about survivors. Also, while breast cancer coverage was close to survivorship rates, nearly every other cancer type was underreported for both incidence and survivorship rates. Conclusions Inaccurate media coverage may be contributing to public misunderstanding about cancer survivorship. PMID:19838887

  5. Beyond survivorship? A discursive analysis of how people with pancreatic cancer negotiate identity transitions in their health.

    PubMed

    Gibson, Alexandra F; D'Cruz, Lourdes; Janda, Monika; Beesley, Vanessa L; Neale, Rachel E; Rowlands, Ingrid J

    2016-12-01

    We explored how people negotiate, and respond to, identity transitions following a diagnosis of pancreatic cancer. Interviews with 19 people with pancreatic cancer were analysed using thematic discourse analysis. While discursively negotiating two transitions, 'moving from healthy to ill' and 'moving from active treatment to end-of-life care', participants positioned themselves as 'in control', 'optimistic' and managing their health and illness. In the absence of other discourses or models of life post-cancer, many people draw on the promise of survival. Moving away from 'survivorship' may assist people with advanced cancer to make sense of their lives in a short timeframe. © The Author(s) 2015.

  6. Top 10 research questions related to physical activity and cancer survivorship.

    PubMed

    Courneya, Kerry S; Rogers, Laura Q; Campbell, Kristin L; Vallance, Jeff K; Friedenreich, Christine M

    2015-06-01

    In the United States, there are more than 14 million cancer survivors. Many of these survivors have been treated with multimodal therapy including surgery, radiation therapy, chemotherapy, and targeted therapies. These therapies improve survival; however, they also cause acute and chronic side effects that can undermine health and quality of life. Physical activity (PA) and cancer survivorship is a rapidly growing field of inquiry that studies the role of PA in people diagnosed with cancer. In this article, we propose the following top 10 research questions for the field of PA and cancer survivorship: (1) Does PA reduce the risk for cancer recurrence and/or improve survival? (2) Does PA influence cancer treatment decisions, completion rates, and/or response? (3) What is the optimal PA prescription for cancer survivors? (4) What is the role of sedentary behavior in cancer survivorship? (5) What are the most effective PA behavior change interventions for cancer survivors? (6) Which cancer variables modify the PA response? (7) What are the safety issues concerning PA in cancer survivors? (8) Which specific cancer symptoms can be managed by PA? (9) Is there a role for PA in advanced cancer? And (10) How do we translate PA research into clinical and community oncology practice? The answers to these questions are critical not only for advancing the field of PA and cancer survivorship, but for improving the lives of the millions of cancer survivors every year who are diagnosed with cancer, going through treatments, recovering after treatments, or coping with advanced disease.

  7. Potential determinants of health-care professionals' use of survivorship care plans: a qualitative study using the theoretical domains framework.

    PubMed

    Birken, Sarah A; Presseau, Justin; Ellis, Shellie D; Gerstel, Adrian A; Mayer, Deborah K

    2014-11-15

    Survivorship care plans are intended to improve coordination of care for the nearly 14 million cancer survivors in the United States. Evidence suggests that survivorship care plans (SCPs) have positive outcomes for survivors, health-care professionals, and cancer programs, and several high-profile organizations now recommend SCP use. Nevertheless, SCP use remains limited among health-care professionals in United States cancer programs. Knowledge of barriers to SCP use is limited in part because extant studies have used anecdotal evidence to identify determinants. This study uses the theoretical domains framework to identify relevant constructs that are potential determinants of SCP use among United States health-care professionals. We conducted semi-structured interviews to assess the relevance of 12 theoretical domains in predicting SCP use among 13 health-care professionals in 7 cancer programs throughout the United States with diverse characteristics. Relevant theoretical domains were identified through thematic coding of interview transcripts, identification of specific beliefs within coded text units, and mapping of specific beliefs onto theoretical constructs. We found the following theoretical domains (based on specific beliefs) to be potential determinants of SCP use: health-care professionals' beliefs about the consequences of SCP use (benefit to survivors, health-care professionals, and the system as a whole); motivation and goals regarding SCP use (advocating SCP use; extent to which using SCPs competed for health-care professionals' time); environmental context and resources (whether SCPs were delivered at a dedicated visit and whether a system, information technology, and funding facilitated SCP use); and social influences (whether using SCPs is an organizational priority, influential people support SCP use, and people who could assist with SCP use buy into using SCPs). Specific beliefs mapped onto the following psychological constructs: outcome

  8. Socio-economic implications of cancer survivorship: results from the PROFILES registry.

    PubMed

    Mols, Floortje; Thong, Melissa S Y; Vissers, Pauline; Nijsten, Tamar; van de Poll-Franse, Lonneke V

    2012-09-01

    The goal of this large population-based study was to examine the socio-economic implications of cancer survivorship. Individuals alive and diagnosed with colorectal cancer and melanoma between 1998 and 2007 or Hodgkin lymphoma, non-Hodgkin lymphoma or multiple myeloma between 1999 and 2008 as registered in the Eindhoven Cancer Registry received a questionnaire on work changes and problems with obtaining a new (or extended) health care insurance, life insurance or a home loan; 70% (n = 2892) responded. Results showed that 28% of all cancer patients experienced changes in their work situation after cancer. Most of them switched to part-time work or stopped working entirely. Patients (3.4%) who tried to obtain a different or upgrade their health care insurance experienced problems and in most cases, these were eventually resolved. Problems with life insurance were somewhat more common with 18% of those who tried to obtain a life insurance experiencing problems. The majority of these patients was rejected by the insurance company (61%) or was accepted at a higher premium (22%). Of the 21% who tried to obtain a home loan, 9% experienced problems. However, 22.2% got accepted eventually, 27.8% got accepted but at a higher mortgage payment and 22.2% got rejected but were eventually accepted by another bank. Almost a third of cancer survivors experienced changes in their work situation after cancer. Problems with obtaining health insurance, life insurance and home loans were also common. Copyright © 2011 Elsevier Ltd. All rights reserved.

  9. Electronic patient self-assessment and management (SAM): a novel framework for cancer survivorship.

    PubMed

    Vickers, Andrew J; Salz, Talya; Basch, Ethan; Cooperberg, Matthew R; Carroll, Peter R; Tighe, Foss; Eastham, James; Rosen, Raymond C

    2010-06-17

    We propose a novel framework for management of cancer survivorship: electronic patient Self-Assessment and Management (SAM). SAM is a framework for transfer of information to and from patients in such a way as to increase both the patient's and the health care provider's understanding of the patient's progress, and to help ensure that patient care follows best practice. Patients who participate in the SAM system are contacted by email at regular intervals and asked to complete validated questionnaires online. Patient responses on these questionnaires are then analyzed in order to provide patients with real-time, online information about their progress and to provide them with tailored and standardized medical advice. Patient-level data from the questionnaires are ported in real time to the patient's health care provider to be uploaded to clinic notes. An initial version of SAM has been developed at Memorial Sloan-Kettering Cancer Center (MSKCC) and the University of California, San Francisco (UCSF) for aiding the clinical management of patients after surgery for prostate cancer. Pilot testing at MSKCC and UCSF suggests that implementation of SAM systems are feasible, with no major problems with compliance (> 70% response rate) or security. SAM is a conceptually simple framework for passing information to and from patients in such a way as to increase both the patient's and the health care provider's understanding of the patient's progress, and to help ensure that patient care follows best practice.

  10. The role of diet and physical activity in breast, colorectal, and prostate cancer survivorship: a review of the literature

    PubMed Central

    Davies, N J; Batehup, L; Thomas, R

    2011-01-01

    Background: Evidence for the role of diet and physical activity in cancer incidence is well documented, but owing to increased cancer survivorship, an understanding of these lifestyle factors after a cancer diagnosis is of crucial importance. The purpose of this review was to update the literature in a review undertaken for the National Cancer Survivorship Initiative and to include observational studies that were not included in the WCRF survivorship systematic review. Methods: Evidence was initially gathered from pre-defined searches of the Cochrane Library Database and PubMed from March 2006 to February 2010. After a comprehensive review regarding lifestyle and cancer, for the purpose of this article, any studies not related to diet and physical activity, prognostic outcomes, and breast, colorectal or prostate cancers were excluded. Another search of 2011 literature was conducted to update the evidence. Results: A total of 43 records were included in this review. Evidence from observational studies suggests that a low-fat, high-fibre diet might be protective against cancer recurrence and progression. However, there is a paucity of RCTs substantiating this. There is more support for physical activity, with a dose response for better outcomes. When synthesized with findings from the World Cancer Research Fund review of RCTs investigating the effect of diet and physical activity interventions on cancer survival, evidence suggests that the mechanism of benefit from diet and physical activity pertains to body weight, with excess body weight being a risk factor, which is modifiable through lifestyle. Implications: Cancer survivors would like to have a more active role in their health care and to know how to look after themselves after diagnosis, including what diet and lifestyle changes they should make. The challenge is in integrating lifestyle support into standardised models of aftercare. PMID:22048034

  11. Cancer survivorship: A positive side-effect of more successful cancer treatment

    PubMed Central

    Moser, Elizabeth Charlotte; Meunier, Françoise

    2014-01-01

    Over the past decades, early diagnosis, new drugs and more personalised multi-modality treatment have led to impressive increases in survival rates of patients with cancer. This success in treating cancer has resulted in a large and rapidly increasing number of cancer survivors, yet life after cancer is often compromised by a broad spectrum of late adverse treatment effects. Some encounter cardiovascular, second malignancies, cognitive or other morbidities which impair normal life in an important way. Some patients are confronted with societal discrimination due to slower performance, chronic fatigue or partial inability and these things can adversely affect employment, education, insurance or mortgage opportunities. In 2012, the European Organisation of Research and Treatment of Cancer (EORTC) Survivorship Task Force was created to focus research efforts on late morbidity of cancer treatment and its impact on society. On 30–31st January 2014, the 1st EORTC Cancer Survivorship Summit was organised to facilitate interaction between clinicians, researchers, social workers, patients, insurers, bankers and policy makers. This important event addressed the needs of cancer survivors, and new collaborations between academic groups, patient advocates, financial and political representatives were formed to guide future European research and health policies in this field. This special issue of the European Journal of Cancer is entirely dedicated to this Summit and addresses, respectively, second malignancies, cardiovascular disease, cognitive dysfunction, infertility/sexuality and psycho-social problems following cancer treatment. PMID:26217161

  12. Liminality as a framework for understanding the experience of cancer survivorship: a literature review.

    PubMed

    Blows, Emma; Bird, Lydia; Seymour, Jane; Cox, Karen

    2012-10-01

    To report a narrative review of literature that drew on the concept of liminality as a framework for understanding the cancer experience. In doing so, we explored the utility of liminality for guiding research on experiences of cancer survivorship. The 'rites of passage' model uses the concept of liminality to explore transition. Taking cancer survivorship as a process, liminality may facilitate our understanding of this phenomenon. Searches of Medline, PsycInfo, British Nursing Index, Cinahl, ASSIA, Web of Science, Cochrane Library and British Library databases were conducted, covering 1985-2011. Search terms were cancer and liminal* or rite* of passage. A narrative review, using a textual narrative approach, was undertaken to provide a comprehensive overview of the topic. Studies were arranged into groups according to the stage of the cancer trajectory on which they focused. Findings from each study were presented to highlight facets of the liminal experience at each stage. Ten studies were included for review. Liminality depicts the ambiguity and uncertainty often experienced by people affected by cancer. Although liminality appears useful for understanding experiences of cancer risk, diagnosis, treatment and the period following active treatment, little research has explored the concept with respect to long-term survivorship. Gaps in current evidence highlight the need for additional research to ascertain the utility of liminality for understanding experiences of long-term survivorship. Research exploring the personal and social implications of living a liminal life, at all stages of the cancer trajectory, is also warranted. © 2012 Blackwell Publishing Ltd.

  13. Exercise Programme in Endometrial Cancer; Protocol of the Feasibility and Acceptability Survivorship Trial (EPEC-FAST)

    PubMed Central

    Smits, Anke; Lopes, Alberto; Das, Nagindra; Bekkers, Ruud; Massuger, Leon; Galaal, Khadra

    2015-01-01

    Introduction Obesity has been associated with impaired quality of life and poorer outcomes in endometrial cancer survivors. Lifestyle interventions promoting exercise and weight reduction have been proposed for survivorship care. However, studies evaluating exercise programmes for endometrial cancer survivors are lacking. Purpose The objective of this study is to evaluate the feasibility of an individualised exercise intervention for endometrial cancer survivors to improve quality of life. Methods and analysis This is a feasibility study in which women will undergo a 10-week exercise programme with a personal trainer. The study population comprises women with confirmed diagnosis of endometrial cancer, who have completed surgical treatment with curative intent, and are aged 18 years or older. The study will take place at the Royal Cornwall Hospital Trust, UK. Feasibility will be evaluated in terms of recruitment, adherence and compliance to the programme. Secondary outcomes are quality of life, psychological distress, fatigue, pain and complication rates. In addition, the acceptability of the programme will be assessed. Ethics and dissemination Ethical approval was obtained through the Exeter NRES Committee. The study results will be used to optimise the intervention content, and may serve as the foundation for a larger definitive trial. Results will be disseminated through peer-review journals, congresses, relevant clinical groups and presented on the Trust's website. Trial registration number: NCT02367950; pre-results. PMID:26674498

  14. Biomarkers, the molecular gaze and the transformation of cancer survivorship

    PubMed Central

    Bell, Kirsten

    2013-01-01

    Over the past two decades, molecular technologies have transformed the landscape of cancer diagnosis, treatment and disease surveillance. However, although the effects of these technologies in the areas of primary and secondary cancer prevention have been the focus of growing study, their role in tertiary prevention remains largely unexamined. Treating this topic as a problematic to be conceptually explored rather than empirically demonstrated, this article focuses on the molecularisation of tertiary prevention, especially the growing use of molecular biomarkers to monitor disease recurrence. Taking a semiotic approach, I speculate on the potential meanings of molecular biomarkers for people living with and beyond cancer and suggest the meanings of these technologies may differ in important ways for those on both sides of the risk divide: that is, those ‘at risk' for cancer and those living with realised risk. Although molecular biomarkers may intensify a sense of ‘measured vulnerability', by indexing cancer's presence they may also prove reassuring. Moreover, as an invisible but ostensibly ‘transparent' sign, in some contexts they appear to enable cancer survivors to challenge biomedical decision making. In the light of recent oncological debates about the value of these biomarkers in tertiary prevention, I conclude by suggesting that signs can never be reduced to their ‘objective' biomedical denotation in spite of professional attempts to expunge meaning and value from care. PMID:23750174

  15. Psychosocial/survivorship issues in breast cancer: are we doing better?

    PubMed

    Fallowfield, Lesley; Jenkins, Valerie

    2015-01-01

    Modern breast cancer treatment offers many women greater prospects of cure or lengthier, good quality survival than was possible in the past. Advances include improved diagnostic and staging procedures, sophisticated onco-plastic surgery, enhanced radiotherapy techniques, and targeted systemic therapies. Much more attention has also been paid to cancer care delivery and access to specialist nurses, counsellors, support groups, and services provided by breast cancer charities. However, there are some concerns that these considerable improvements in treatment delivery and clinical outcomes have not led to similar benefits in the psychosocial, functional, and sexual well-being of women. The impact that non-life threatening, long-term iatrogenic harms of otherwise efficacious anticancer treatments has on patients is often overlooked; this is in part because of the emphasis given to physician-reported safety data in trials and the general exclusion of patient-reported outcomes (PROs). A failure to utilise reliable PRO measures has meant that some problems are underreported, which consequently has hampered much-needed research into ameliorative interventions. Systematic monitoring of quality of life-threatening side effects would permit early implementation of effective interventions and enhance long-term survivorship. Some examples of the pervasive difficulties that continue to affect survivors and evidence that certain interventions might help are provided in this commentary.

  16. Recruiting Chinese- and Korean-Americans in Cancer Survivorship Research: Challenges and Lessons Learned

    PubMed Central

    Paek, Min-so

    2015-01-01

    Purpose This paper describes Asian-American recruitment experiences using data from the cancer survivorship study involving Chinese- and Korean-American breast cancer survivors specifically. The article discusses challenges to the successful recruitment of Asian-American populations for cancer survivorship research and provides recommendations for future recruitment efforts. Methods The study investigated the role of family communication in coping and quality of life for survivors from Chinese- and Korean-American groups diagnosed with breast cancer. Participants were primarily recruited through cancer registries and community outreach. Results A total of 157 breast cancer survivors (86 Chinese-Americans and 71 Korean-Americans) completed the final survey, yielding a final response rate of 62.8% of the accessible samples. Chinese-Americans were more likely to agree to participate but less frequently completed the survey, and Korean-Americans were more likely to refuse to participate. Common reasons for refusal were ‘too busy or too painful to recall,’ followed by ‘not interested,’ ‘too old,’ ‘distrust of the research’ or ‘health issue.’ Participants were more likely to be young and Korean-American compared to non-participants. Conclusions Cultural and linguistic barriers, distrust, and lack of awareness about cancer research should be considered to recruit more Asian-American cancer survivors. Community participatory research is required to ensure participation by sufficient numbers of ethnic minorities in cancer survivorship research. PMID:25619194

  17. The evolving paradigm of adult cancer survivor care.

    PubMed

    Grant, Marcia; Economou, Denice

    2008-04-01

    As a result of earlier diagnosis and improved treatment, the number of cancer survivors is steadily increasing, with over 11 million in the US today. These survivors face a multitude of long-term and late effects as a result of their cancer and its treatment. It is increasingly recognized that this group has complex and ongoing needs for medical care education, surveillance, screening, and support. Many organizations have helped to advance survivorship care; key among them are the National Coalition for Cancer Survivorship, the Institute of Medicine, the Lance Armstrong Foundation, and the Office of Cancer Survivorship of the National Cancer Institute. Important reports have defined goals of care; identified interventions to improve outcomes among survivors; and recognized the need for posttreatment surveillance, healthy lifestyle behaviors, and continued research in all of these areas. With these advances, survivorship care is emerging as a distinct component of the continuum of care in oncology.

  18. SURVIVORSHIP NAVIGATION OUTCOME MEASURES: A report from the ACS Patient Navigation Working Group on Survivorship Navigation

    PubMed Central

    Pratt-Chapman, Mandi; Simon, Melissa A.; Patterson, Angela; Risendal, Betsy C.; Patierno, Steven

    2013-01-01

    Survivorship navigation is a relatively new concept in the field of patient navigation, but an important one. This paper highlights the essential functions of the survivorship navigator and defines core outcomes and measures for navigation in the survivorship period. Barriers to access to care experienced by patients during active cancer treatment can continue into the post-treatment period, affecting quality follow-up care for survivors. These barriers to care can be particularly acute for non-English speakers, immigrants, the uninsured, the underinsured and other vulnerable populations. The survivorship navigator can help reduce barriers and facilitate access to survivorship care and services through communication and information exchange for patients. Survivorship navigation may improve appropriate health care utilization through education and care coordination, potentially improving health outcomes and quality of life of survivors while reducing cost to the health care system. Survivorship navigators can also educate survivors on how to improve their overall wellness, thereby directly impacting the health of a growing population of cancer survivors. PMID:21780092

  19. Race is a Strong Predictor of Receipt of a Written Survivorship Care Plan: Results from the National Health Interview Survey.

    PubMed

    Hinyard, Leslie; Wirth, Lorinette S

    2017-04-28

    The purpose of this study is to investigate the prevalence of receipt of written documentation of follow up care and of cancer treatments and to examine the predictors of receipt of such written documentation. Data from the 2010 National Health Interview Survey was used to identify individuals 18 years or older with a history of cancer. Binary and multinomial logistic regression were used to investigate patient-level variables associated with receipt of written documentation of cancer treatment, written advice about follow-up care, or both written documents. Patient-level variables included in the analysis were age, gender, region of residence, race/ethnicity, marital status, education level, insurance coverage, cancer type, employment status, and psychosocial support. Of the 1185 responses to the questions used to access receipt of a SCP, the prevalence of any receipt of a written documentation was 68%, where 30% obtained written advice only and 8% were provided a written treatment summary only; only 31% received both. Non-white race, cancer type, and psychosocial services were associated with increased odds of receiving written documentation. Patient-level characteristics are associated with receipt of care plan documentation. Further work needs to investigate the interaction of provider and patient-level characteristics. Understanding patient-level characteristics associated with receipt of written documentation may help uncover strategies for improved survivorship care plan implementation.

  20. Survivorship of severe medically unexplained symptoms in palliative care.

    PubMed

    Dwyer, Justin; Taylor, Keryn; Boughey, Mark

    2017-09-01

    Patients who articulate their psychological distress primarily through physical symptoms (referred to as medically unexplained symptoms (MUS)) pose a challenge to the skills of most clinicians, including palliative care physicians. The philosophical underpinnings of palliative care with a stated focus on symptom management and care of the person in their psychosociospiritual context lend itself to the care of these patients. The aim of this study was to investigate the characteristics to improve identification of this patient group within palliative care. Here, we report a case series of 6 patients with severe MUS who were referred to palliative care. We use illustrative case vignettes, examine clinical and demographic characteristics and review the perspectives of the multidisciplinary team to identify the common threads. This case series highlights the complexities and challenges that are inherent in providing assessment and care for patients with MUS that present to palliative care. Characteristics that were identified included the clustering of 'trigger' symptoms, backgrounds of multiple chronic illnesses and relationship dysfunction. Patient outcomes in this group were universally poor, including the death of 2 patients. Knowledge of this patient group is vital given the likely increase in prevalence of MUS as palliative care broadens its focus earlier in the trajectory of illness. The strengths of palliative care, including psychosociospiritual assessment, multidisciplinary input and communication skills holds the potential to accurately identify patients with MUS and allow the opportunity for specialist psychiatric input with the hope of improving outcomes for patients and their families. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  1. The impact of the survivorship care plan on health care use: 2-year follow-up results of the ROGY care trial.

    PubMed

    Jeppesen, Mette Moustgaard; Ezendam, Nicole P M; Pijnenborg, Johanna M A; Caroline Vos, M; Boll, Dorry; Kruitwagen, Roy F P M; Jensen, Pernille Tine; van de Poll-Franse, Lonneke V

    2017-09-05

    The purpose of this paper was to assess the impact of survivorship care plan (SCP) provision and moderating factors on health care use following endometrial cancer treatment. Women newly diagnosed with endometrial cancer were included in a pragmatic cluster randomized trial at 12 hospitals in the Netherlands and were randomly assigned to SCP or usual care (n = 221; 75% response). The SCP was generated using the web-based Registrationsystem Oncological GYnecology (ROGY) and provided tailored information regarding disease, treatment, and possible late-effects. Cancer-related use of general practitioner, specialist, and additional health care was collected through questionnaires after diagnosis and at 6-, 12-, and 24-month follow-up and compared using linear multilevel regression analyses. Women who received an SCP had more cancer-related primary care visits compared to the usual care arm during the first year after diagnosis (β = 0.7, p < 0.01). At 6-month follow-up, women in the SCP group used more additional health care compared to women receiving usual care (24 vs. 11%, p = 0.04). Women with anxious symptoms (p = 0.03) and women who received radiotherapy (p = 0.01) had a higher primary care use within the first year after treatment, when receiving an SCP. The SCP increases primary health care consumption the first year after treatment, particularly in women treated with radiotherapy and women with anxious symptoms. These findings imply that the SCP enables women in need of supportive care to seek relevant care at an early stage after treatment. Whether this results in improved patient-reported outcomes in the long-term needs to be further studied.

  2. Reclaiming life on one's own terms: a grounded theory study of the process of breast cancer survivorship.

    PubMed

    Sherman, Deborah Witt; Rosedale, Mary; Haber, Judith

    2012-05-01

    To develop a substantive theory of the process of breast cancer survivorship. Grounded theory. A LISTSERV announcement posted on the SHARE Web site and purposeful recruitment of women known to be diagnosed and treated for breast cancer. 15 women diagnosed with early-stage breast cancer. Constant comparative analysis. Breast cancer survivorship. The core variable identified was Reclaiming Life on One's Own Terms. The perceptions and experiences of the participants revealed overall that the diagnosis of breast cancer was a turning point in life and the stimulus for change. That was followed by the recognition of breast cancer as now being a part of life, leading to the necessity of learning to live with breast cancer, and finally, creating a new life after breast cancer. Participants revealed that breast cancer survivorship is a process marked and shaped by time, the perception of support, and coming to terms with the trauma of a cancer diagnosis and the aftermath of treatment. The process of survivorship continues by assuming an active role in self-healing, gaining a new perspective and reconciling paradoxes, creating a new mindset and moving to a new normal, developing a new way of being in the world on one's own terms, and experiencing growth through adversity beyond survivorship. The process of survivorship for women with breast cancer is an evolutionary journey with short- and long-term challenges. This study shows the development of an empirically testable theory of survivorship that describes and predicts women's experiences following breast cancer treatment from the initial phase of recovery and beyond. The theory also informs interventions that not only reduce negative outcomes, but promote ongoing healing, adjustment, and resilience over time.

  3. Obesity-related endometrial cancer: an update on survivorship approaches to reducing cardiovascular death.

    PubMed

    Laskey, R A; McCarroll, M L; von Gruenigen, V E

    2016-01-01

    As the rate of obesity increases worldwide, so will the number of women diagnosed with obesity-related malignancy. The strongest correlation between obesity and cancer is endometrial cancer (EC). Obesity is the most significant modifiable risk factor for development of EC and also contributes to the most common cause of death in EC survivors-cardiovascular disease (CVD). Most cancer survivors after diagnosis do not implement lifestyle changes aimed at weight-loss and CVD risk reduction. This selective review highlights recent novel and unique approaches for managing CVD co-morbidities in EC survivorship. © 2015 Royal College of Obstetricians and Gynaecologists.

  4. The importance of immunization in cancer prevention, treatment, and survivorship.

    PubMed

    Ward, Elizabeth M; Flowers, Christopher R; Gansler, Ted; Omer, Saad B; Bednarczyk, Robert A

    2017-09-01

    Answer questions and earn CME/CNE A measles outbreak originating in California during 2014 and 2015 called attention to the potential for infectious disease outbreaks related to underimmunized populations in the United States and the potential risk to pediatric patients with cancer attending school when such outbreaks occur. Compliance with vaccine recommendations is important for the prevention of hepatitis B-related and human papillomavirus-related cancers and for protecting immunocompromised patients with cancer, and these points are often overlooked, resulting in the continued occurrence of vaccine-preventable neoplastic and infectious diseases and complications. This article provides an overview of the importance of vaccines in the context of cancer and encourages clinician, health system, and public policy efforts to promote adherence to immunization recommendations in the United States. CA Cancer J Clin 2017;67:398-410. © 2017 American Cancer Society. © 2017 American Cancer Society.

  5. Endometrial cancer and obesity: epidemiology, biomarkers, prevention and survivorship.

    PubMed

    Fader, Amanda Nickles; Arriba, Lucybeth Nieves; Frasure, Heidi E; von Gruenigen, Vivian E

    2009-07-01

    Endometrial cancer is the most common gynecologic malignancy in the Western world and is strongly associated with obesity. Despite the fact that most cases are diagnosed in early, more favorable stages, endometrial cancer incidence and mortality rates are on the rise. Morbidly obese women with endometrial cancer are more likely to die of their co-morbidities and also of their cancers when compared to their leaner cohorts. Given the increasing rates of morbid obesity in the United States, it is essential to develop appropriate screening tools and guidelines to reduce cancer morbidity and death amongst this group. Through an analysis of the existing literature, we present a review of the epidemiologic trends in obesity and endometrial cancer, discuss the promising role of screening biomarker studies, review prevention efforts and modifiable risk factors, and ways in which health outcomes and quality of life for endometrial cancer survivors may be optimized.

  6. Long-Term Effects of Cancer Survivorship on the Employment of Older Workers

    PubMed Central

    Short, Pamela Farley; Vasey, Joseph J; Moran, John R

    2008-01-01

    Objective To estimate the long-term effects of cancer survivorship on the employment of older workers. Data Sources Primary data for 504 subjects who were 55–65 in 2002 and were working when diagnosed with cancer in 1997–1999, and secondary data for a comparison group of 3,903 similarly aged workers in the Health and Retirement Study (HRS) in 2002. Study Design Three employment outcomes (working, working full time, usual hours per week) were compared between the two groups. Both Probit/Tobit regressions and propensity score matching were used to adjust for potentially confounding differences between groups. Sociodemographic characteristics, baseline employment characteristics, and the presence of other health conditions were included as covariates. Data Collection Methods Four telephone interviews were conducted annually with cancer survivors identified from tumor registries at four large hospitals in Pennsylvania and Maryland. Many of the questions were taken from the HRS to facilitate comparisons. Principal Findings Cancer survivors of both genders worked an average of 3–5 hours less per week than HRS controls. For females, we found significant effects of survivorship on the probability of working, the probability of working full-time, and hours. For males, survivorship affected the probability of full-time employment and hours without significantly reducing the probability of working. For both genders, these effects were primarily attributable to new cancers. There were no significant effects on the employment of cancer-free survivors. Conclusions Survivors with recurrences or second primary tumors may particularly benefit from employment support services and workplace accommodation. Reassuringly, any long-term effects on the employment of cancer-free survivors are fairly small. PMID:18211525

  7. Oral complications of cancer and cancer therapy: from cancer treatment to survivorship.

    PubMed

    Epstein, Joel B; Thariat, Juliette; Bensadoun, Rene-Jean; Barasch, Andrei; Murphy, Barbara A; Kolnick, Leanne; Popplewell, Leslie; Maghami, Ellie

    2012-01-01

    Answer questions and earn CME/CNE Oral complications resulting from cancer and cancer therapies cause acute and late toxicities that may be underreported, underrecognized, and undertreated. Recent advances in cancer treatment have led to changes in the incidence, nature, and severity of oral complications. As the number of survivors increases, it is becoming increasingly recognized that the aggressive management of oral toxicities is needed to ensure optimal long-term oral health and general well-being. Advances in care have had an impact on previously recognized oral complications and are leading to newly recognized adverse effects. Here, the authors briefly review advances in cancer therapy, including recent advances in surgery, oral care, radiation therapy, hematopoietic cell transplantation, and medical oncology; describe how these advances affect oral health; and discuss the frequent and/or severe oral health complications associated with cancer and cancer treatment and their effect upon long-term health. Although some of the acute oral toxicities of cancer therapies may be reduced, they remain essentially unavoidable. The significant impact of long-term complications requires increased awareness and recognition to promote prevention and appropriate intervention. It is therefore important for the primary oncologist to be aware of these complications so that appropriate measures can be implemented in a timely manner. Prevention and management is best provided via multidisciplinary health care teams, which must be integrated and communicate effectively in order to provide the best patient care in a coordinated manner at the appropriate time.

  8. Hanging by a thread: exploring the features of nonresponse in an online young adult cancer survivorship support community.

    PubMed

    Crook, Brittani; Glowacki, Elizabeth M; Love, Brad; Jones, Barbara L; Macpherson, Catherine Fiona; Johnson, Rebecca H

    2016-02-01

    Finding helpful information can be challenging for young adult (YA) cancer survivors; thus, it is critical to examine features of online posts that successfully solicit responses and assess how these differ from posts that do not solicit responses. Using posts from an online YA cancer support community, we analyzed initial posts that did and did not receive replies utilizing Linguistic Inquiry Word Count (LIWC). Independent t tests revealed significant differences between the sets of posts regarding content, emotions, cognitive processes, pronoun use, and linguistic complexity. More specifically, posts with replies contained fewer words per sentence, had more first-person pronouns, had more expressions of negative emotions, and contained more present tense and past tense verbs. The findings of this study can help improve peer-exchanged support in online communities so that YA cancer survivors can more effectively receive digital support. This research also provides communication researchers, health educators, and care providers a lens for understanding the YA cancer survivorship experience. This research helps survivors be strategic in how they use online forums to seek advice and support. More complete understanding of what kinds of prompts produce responses allows those in need to craft messages in ways that are most likely to elicit support from fellow cancer survivors. These implications for message design extend beyond blogging and can be applicable for text message and email exchanges between cancer patients and their care providers.

  9. History of Recreational Physical Activity and Survival After Breast Cancer: The California Breast Cancer Survivorship Consortium.

    PubMed

    Lu, Yani; John, Esther M; Sullivan-Halley, Jane; Vigen, Cheryl; Gomez, Scarlett Lin; Kwan, Marilyn L; Caan, Bette J; Lee, Valerie S; Roh, Janise M; Shariff-Marco, Salma; Keegan, Theresa H M; Kurian, Allison W; Monroe, Kristine R; Cheng, Iona; Sposto, Richard; Wu, Anna H; Bernstein, Leslie

    2015-06-15

    Recent epidemiologic evidence suggests that prediagnosis physical activity is associated with survival in women diagnosed with breast cancer. However, few data exist for racial/ethnic groups other than non-Latina whites. To examine the association between prediagnosis recreational physical activity and mortality by race/ethnicity, we pooled data from the California Breast Cancer Survivorship Consortium for 3 population-based case-control studies of breast cancer patients (n=4,608) diagnosed from 1994 to 2002 and followed up through 2010. Cox proportional hazards models provided estimates of the relative hazard ratio for mortality from all causes, breast cancer, and causes other than breast cancer associated with recent recreational physical activity (i.e., in the 10 years before diagnosis). Among 1,347 ascertained deaths, 826 (61%) were from breast cancer. Compared with women with the lowest level of recent recreational physical activity, those with the highest level had a marginally decreased risk of all-cause mortality (hazard ratio=0.88, 95% confidence interval: 0.76, 1.01) and a statistically significant decreased risk of mortality from causes other than breast cancer (hazard ratio=0.63, 95% confidence interval: 0.49, 0.80), and particularly from cardiovascular disease. No association was observed for breast cancer-specific mortality. These risk patterns did not differ by race/ethnicity (non-Latina white, African American, Latina, and Asian American). Our findings suggest that physical activity is beneficial for overall survival regardless of race/ethnicity. © The Author 2015. Published by Oxford University Press on behalf of the Johns Hopkins Bloomberg School of Public Health. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  10. Emotions and Emotion Regulation in Breast Cancer Survivorship.

    PubMed

    Conley, Claire C; Bishop, Brenden T; Andersen, Barbara L

    2016-08-10

    Emotional distress in cancer patients is an important outcome; however, emotional experience does not begin and end with emotion generation. Attempts to regulate emotions may lessen their potentially negative effects on physical and psychological well-being. Researchers have called for the study of emotion regulation (ER) in health psychology and psycho-oncology. Thus, this review has three aims. First, we discuss current understandings of emotion and ER across the cancer trajectory, including the principles of ER and methods for its assessment. Second, we present a model for examining the mediating effects of ER on psychosocial outcomes. Third, we "round out" the discussion with an example: new data on the role of ER in recurrent breast cancer. Taken together, these aims illustrate the impact of affective regulatory processes on cancer patients' long-term outcomes. As survival rates increase, long-term follow-up studies are needed to characterize the dynamic, reciprocal effects of emotion and ER for cancer survivors. Further research on ER may help women with breast cancer better manage the challenges associated with diagnosis and treatment.

  11. Emotions and Emotion Regulation in Breast Cancer Survivorship

    PubMed Central

    Conley, Claire C.; Bishop, Brenden T.; Andersen, Barbara L.

    2016-01-01

    Emotional distress in cancer patients is an important outcome; however, emotional experience does not begin and end with emotion generation. Attempts to regulate emotions may lessen their potentially negative effects on physical and psychological well-being. Researchers have called for the study of emotion regulation (ER) in health psychology and psycho-oncology. Thus, this review has three aims. First, we discuss current understandings of emotion and ER across the cancer trajectory, including the principles of ER and methods for its assessment. Second, we present a model for examining the mediating effects of ER on psychosocial outcomes. Third, we “round out” the discussion with an example: new data on the role of ER in recurrent breast cancer. Taken together, these aims illustrate the impact of affective regulatory processes on cancer patients’ long-term outcomes. As survival rates increase, long-term follow-up studies are needed to characterize the dynamic, reciprocal effects of emotion and ER for cancer survivors. Further research on ER may help women with breast cancer better manage the challenges associated with diagnosis and treatment. PMID:27517969

  12. Identifying radiation-induced survivorship syndromes affecting bowel health in a cohort of gynecological cancer survivors

    PubMed Central

    Steineck, Gunnar; Skokic, Viktor; Bull, Cecilia; Alevronta, Eleftheria; Dunberger, Gail; Bergmark, Karin; Wilderäng, Ulrica; Oh, Jung Hun; Deasy, Joseph O.; Jörnsten, Rebecka

    2017-01-01

    Background During radiotherapy unwanted radiation to normal tissue surrounding the tumor triggers survivorship diseases; we lack a nosology for radiation-induced survivorship diseases that decrease bowel health and we do not know which symptoms are related to which diseases. Methods Gynecological-cancer survivors were followed-up two to 15 years after having undergone radiotherapy; they reported in a postal questionnaire the frequency of 28 different symptoms related to bowel health. Population-based controls gave the same information. With a modified factor analysis, we determined the optimal number of factors, factor loadings for each symptom, factor-specific factor-loading cutoffs and factor scores. Results Altogether data from 623 survivors and 344 population-based controls were analyzed. Six factors best explain the correlation structure of the symptoms; for five of these a statistically significant difference (P< 0.001, Mann-Whitney U test) was found between survivors and controls concerning factor score quantiles. Taken together these five factors explain 42 percent of the variance of the symptoms. We interpreted these five factors as radiation-induced syndromes that may reflect distinct survivorship diseases. We obtained the following frequencies, defined as survivors having a factor loading above the 95 percent percentile of the controls, urgency syndrome (190 of 623, 30 percent), leakage syndrome (164 of 623, 26 percent), excessive gas discharge (93 of 623, 15 percent), excessive mucus discharge (102 of 623, 16 percent) and blood discharge (63 of 623, 10 percent). Conclusion Late effects of radiotherapy include five syndromes affecting bowel health; studying them and identifying the underlying survivorship diseases, instead of the approximately 30 long-term symptoms they produce, will simplify the search for prevention, alleviation and elimination. PMID:28158314

  13. Atrophic Vaginitis in Breast Cancer Survivors: A Difficult Survivorship Issue

    PubMed Central

    Lester, Joanne; Pahouja, Gaurav; Andersen, Barbara; Lustberg, Maryam

    2015-01-01

    Management of breast cancer includes systematic therapies including chemotherapy and endocrine therapy can lead to a variety of symptoms that can impair the quality of life of many breast cancer survivors. Atrophic vaginitis, caused by decreased levels of circulating estrogen to urinary and vaginal receptors, is commonly experienced by this group. Chemotherapy induced ovarian failure and endocrine therapies including aromatase inhibitors and selective estrogen receptor modulators can trigger the onset of atrophic vaginitis or exacerbate existing symptoms. Symptoms of atrophic vaginitis include vaginal dryness, dyspareunia, and irritation of genital skin, pruritus, burning, vaginal discharge, and soreness. The diagnosis of atrophic vaginitis is confirmed through patient-reported symptoms and gynecological examination of external structures, introitus, and vaginal mucosa. Lifestyle modifications can be helpful but are usually insufficient to significantly improve symptoms. Non-hormonal vaginal therapies may provide additional relief by increasing vaginal moisture and fluid. Systemic estrogen therapy is contraindicated in breast cancer survivors. Continued investigations of various treatments for atrophic vaginitis are necessary. Local estrogen-based therapies, DHEA, testosterone, and pH-balanced gels continue to be evaluated in ongoing studies. Definitive results are needed pertaining to the safety of topical estrogens in breast cancer survivors. PMID:25815692

  14. Protocol for Care After Lymphoma (CALy) trial: a phase II pilot randomised controlled trial of a lymphoma nurse-led model of survivorship care

    PubMed Central

    Joske, David; Bulsara, Max; Bulsara, Caroline; Monterosso, Leanne

    2016-01-01

    Introduction Lymphoma is the sixth most common cancer diagnosed in Australia and internationally. Owing to the aggressive nature of the disease and intensity of treatment, survivors face long-term effects that impact on quality of life. Current models of follow-up post-treatment fail to address these complex issues. Given that 74% of patients with lymphoma cancer now survive 5 years beyond diagnosis and treatment, it is important to address this gap in care. Aim To determine self-reported informational and practical needs, anxiety, depression, stress, coping and empowerment at baseline, 3 and 6 months. Methods and analysis A pilot randomised controlled trial will test the effect of a nurse-led lymphoma survivorship clinic compared with usual post-treatment care at a large tertiary cancer centre in Western Australia. The intervention will comprise three face-to-face appointments with delivery of tailored resources, a survivorship care plan and treatment summary (SCP TS). The SCP TS will be given to the participant and general practitioner (GP). Intervention participants will be interviewed at completion to explore the perceived value of the intervention components and preferred dose. An evaluation developed for GPs will assess receipt and use of SCP TS. The primary intent of analysis will be to address the feasibility of a larger trial and requisite effect and sample size. Ethics and dissemination Ethics approval has been granted by the University of Notre Dame Australia and Sir Charles Gairdner Hospital in Western Australia. Peer-reviewed publications and conference presentations will report the results of this phase II trial. Trial registration number ANZCTRN12615000530527; Pre-results. PMID:27194317

  15. Interventional nutrition in cancer survivorship. A case study.

    PubMed

    Plotnikoff, Gregory A

    2010-10-01

    Interventional nutrition is an emerging field in medicine that utilizes advanced laboratory technologies to identify a patient's clinically relevant biochemical uniqueness in order to treat the metabolic contributors to multifactorial symptoms such as fatigue, insomnia, and pain. This article presents a complex case in which a breast cancer patient's severe symptoms fit no clear disease pattern and prevented her from undergoing chemotherapy and radiation treatment. Specialized testing for metabolic, gastrointestinal, and immunologic function uncovered important nutritional deficiencies that could not be identified through isolated tests or addressed by supplementation with a daily multivitamin. Nutritional intervention based on specific measurements, rather than a one-size-fits-all approach to supplementation, resolved this patient's debilitating symptoms and restored her capacity to benefit from chemotherapy and radiation.

  16. Integrating Primary Care Providers in the Care of Cancer Survivors: Gaps in Evidence and Future Opportunities

    PubMed Central

    Nekhlyudov, Larissa; O’Malley, Denalee M.; Hudson, Shawna V.

    2017-01-01

    For over a decade since the release of the Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition, there has been a focus on providing coordinated, comprehensive care for cancer survivors that emphasized the role of primary care. Several models of care have been described which primarily focused on primary care providers (PCPs) as receivers of cancer survivors and specific types of information (e.g. survivorship care plans) from oncology based care, and not as active members of the cancer survivorship team. In this paper, we reviewed survivorship models that have been described in the literature, and specifically focused on strategies aiming to integrate primary care providers in caring for cancer survivors across different settings. We offer insights differentiating primary care providers’ level of expertise in cancer survivorship and how such expertise may be utilized. We provide recommendations for education, clinical practice, research and policy initiatives that may advance the integration of primary care providers in the care of cancer survivors in diverse clinical settings. PMID:28049575

  17. Survivorship After Prostate Cancer Treatment: Spouses’ Quality of Life at 36 Months

    PubMed Central

    Harden, Janet; Sanda, Martin G.; Wei, John Thomas; Yarandi, Hossein N.; Hembroff, Larry; Hardy, Jill; Northouse, Laurel

    2014-01-01

    Purpose/Objectives: To determine the long-term effects of prostate cancer treatment on spouse quality of life (QOL) at 36 months following treatment. Design: Descriptive-exploratory; community-based study. Setting: Telephone interviews. Sample: 95 female spouses of men treated for early-stage prostate cancer. Methods: A computer-assisted telephone interview was used to evaluate QOL among spouses of prostate cancer survivors at 36 months after initial prostate cancer treatment. Main Research Variables: Quality of life, dyadic adjustment, sexual satisfaction, appraisal of caregiving, and demographic information. Findings: Spouses who had more negative appraisal of caregiving had lower sexual satisfaction, poorer cancer-specific QOL, and poorer mental QOL. Spouses who perceived bother related to the patient’s sexual or hormone function reported more threatening appraisals of caregiving, less sexual satisfaction, and poorer QOL. Conclusions: Spouses continued to experience negative appraisal of caregiving, which affected QOL 36 months after their husbands’ treatment for prostate cancer. Additional studies related to factors that influence spouse QOL during survivorship will help guide clinical practice. Implications for Nursing: Healthcare providers must help spouses find strategies that promote positive coping and lessen negative appraisal. Giving caregivers information early in the treatment process will help them understand what to expect over time. Supporting caregivers and helping them manage stress will enhance QOL during survivorship. Knowledge Translation: Spouses who experienced more bother related to urinary, sexual, and hormonal function experience more stress and worse QOL at 36 months post-treatment. Spouse appraisal can have a significant effect on QOL. Offering counseling to couples following treatment for prostate cancer may improve QOL by helping couples manage relationship intimacy. PMID:24161635

  18. Survivorship after prostate cancer treatment: spouses' quality of life at 36 months.

    PubMed

    Harden, Janet; Sanda, Martin G; Wei, John Thomas; Yarandi, Hossein N; Hembroff, Larry; Hardy, Jill; Northouse, Laurel

    2013-11-01

    To determine the long-term effects of prostate cancer treatment on spouse quality of life (QOL) at 36 months following treatment. Descriptive-exploratory; community-based study. Telephone interviews. 95 female spouses of men treated for early-stage prostate cancer. A computer-assisted telephone interview was used to evaluate QOL among spouses of prostate cancer survivors at 36 months after initial prostate cancer treatment. Lymphedema, demographic information, self-reported comorbid diseases or medical issues, and medication usage. Spouses who had more negative appraisal of caregiving had lower sexual satisfaction, poorer cancer-specific QOL, and poorer mental QOL. Spouses who perceived bother related to the patient's sexual or hormone function reported more threatening appraisals of caregiving, less sexual satisfaction, and poorer QOL. Spouses continued to experience negative appraisal of caregiving, which affected QOL 36 months after their husbands' treatment for prostate cancer. Additional studies related to factors that influence spouse QOL during survivorship will help guide clinical practice. Healthcare providers must help spouses find strategies that promote positive coping and lessen negative appraisal. Giving caregivers information early in the treatment process will help them understand what to expect over time. Supporting caregivers and helping them manage stress will enhance QOL during survivorship. Spouses who experienced more bother related to urinary, sexual, and hormonal function experience more stress and worse QOL at 36 months post-treatment. Spouse appraisal can have a significant effect on QOL. Offering counseling to couples following treatment for prostate cancer may improve QOL by helping couples manage relationship intimacy.

  19. Preparing professional staff to care for cancer survivors

    PubMed Central

    Economou, Denice; Ferrell, Betty; Bhatia, Smita

    2010-01-01

    Introduction Oncology health care professionals frequently lack the background to implement needed survivorship activities and follow-up care. The purpose of this project is to assist providers in the clarification and initiation of potentially durable changes in survivorship care by developing a health professional curriculum, recruiting participants, implementing the course, conducting course evaluation and following participants’ defined goals over time. Materials and methods The curriculum was developed based on recommendations from the Institute of Medicine Report-From Cancer Patient to Cancer Survivor—Lost in Transition. Three concepts were used to structure the course: cancer survivorship quality of life, changing practice via performance improvement, and principles of adult education. Expert faculty designed and implemented the curriculum and teaching methods using adult learning principles and an interactive approach. Competitively-selected, two-person interdisciplinary teams for the first course (July 12–15, 2006, Pasadena, California) were selected based on stated interests, three projected goals, and letters of commitment from administrators. Results Participants represented 52 cancer care settings from 28 states. Teams included Nurses (48.1%), Social Workers (20.7%), Physicians (18.8%), Directors/Administrators (6.6%), Psychologists (2.8%), and others (3%). The institutional barriers identified by teams were lack of survivorship knowledge (94 %), financial constraints (61%), lack of administrative support (6%), and staff philosophy that excluded survivorship (15%). Evaluation of content from the first course was consistently positive. Conclusions Dissemination of survivorship education for health care professionals stimulates participants to define and begin to implement goals for improving survivors’ care. Implications for cancer survivors A training program such as the one described provides professional knowledge regarding survivorship that

  20. Adapting an evidence-based survivorship intervention for Latina breast cancer survivors

    PubMed Central

    Meneses, Karen; Gisiger-Camata, Silvia; Schoenberger, Yu-Mei; Weech-Maldonado, Robert; McNees, Patrick

    2015-01-01

    Aim About 120,000 Latina breast cancer survivors (LBCS) live in the USA with the numbers expected to increase. LBCS experience survivorship disparities and report poor quality of life outcomes. Despite poor outcomes, few survivorship interventions for LBCS are available. Adapting evidence-based interventions for Latinas may be one strategy to reduce disparities. Materials & Methods An evidence-based intervention called the Breast Cancer Education Intervention was adapted for Latinas. First, certified translation and cognitive interview to assess cultural relevance were conducted. Next, a pilot sample of 40 Latinas who participated in the intervention were asked to provide follow-up evaluation of their satisfaction with and usefulness of the translated education manual and intervention. Results Thirty LBCS completed the intervention, and 14 LBCS submitted an evaluation summary expressing satisfaction with usefulness, readability and relevance. Conclusion The process by which translation and cultural adaptation of an evidence-based intervention provides beginning foundation to support and reduce disparities among LBCS. PMID:25776285

  1. Are primary care providers implementing evidence-based care for breast cancer survivors?

    PubMed Central

    Luctkar-Flude, Marian; Aiken, Alice; McColl, Mary Ann; Tranmer, Joan; Langley, Hugh

    2015-01-01

    Abstract Objective To describe the implementation of key best practice guideline recommendations for posttreatment breast cancer survivorship care by primary care providers (PCPs). Design Descriptive cross-sectional survey. Setting Southeastern Ontario. Participants Eighty-two PCPs: 62 family physicians (FPs) and 20 primary health care nurse practitioners (PHCNPs). Main outcome measures Twenty-one “need-to-know” breast cancer survivorship care guideline recommendations rated by participants as “implemented routinely,” “aware of guideline recommendation but not implemented routinely,” or “not aware of guideline recommendation.” Results Overall, FPs and PHCNPs in our sample reported similar practice patterns in terms of implementation of breast cancer survivorship guideline recommendations. The PCPs reported routinely implementing approximately half (46.4%, 9.7 of 21) of the key guideline recommendations with breast cancer survivors in their practices. Implementation rates were higher for recommendations related to prevention and surveillance aspects of survivorship care, such as mammography and weight management. Knowledge and practice gaps were highest for recommendations related to screening for and management of long-term effects such as fatigue and distress. There were only a few minor differences reported between FPs and PHCNPs. Conclusion There are knowledge and practice gaps related to implementation of the key guideline recommendations for breast cancer survivorship care in the primary care setting that could be targeted for improvement through educational or other interventions. PMID:26889509

  2. Are primary care providers implementing evidence-based care for breast cancer survivors?

    PubMed

    Luctkar-Flude, Marian; Aiken, Alice; McColl, Mary Ann; Tranmer, Joan; Langley, Hugh

    2015-11-01

    To describe the implementation of key best practice guideline recommendations for posttreatment breast cancer survivorship care by primary care providers (PCPs). Descriptive cross-sectional survey. Southeastern Ontario. Eighty-two PCPs: 62 family physicians (FPs) and 20 primary health care nurse practitioners (PHCNPs). Twenty-one “need-to-know” breast cancer survivorship care guideline recommendations rated by participants as “implemented routinely,” “aware of guideline recommendation but not implemented routinely,” or “not aware of guideline recommendation.” Overall, FPs and PHCNPs in our sample reported similar practice patterns in terms of implementation of breast cancer survivorship guideline recommendations. The PCPs reported routinely implementing approximately half (46.4%, 9.7 of 21) of the key guideline recommendations with breast cancer survivors in their practices. Implementation rates were higher for recommendations related to prevention and surveillance aspects of survivorship care, such as mammography and weight management. Knowledge and practice gaps were highest for recommendations related to screening for and management of long-term effects such as fatigue and distress. There were only a few minor differences reported between FPs and PHCNPs. There are knowledge and practice gaps related to implementation of the key guideline recommendations for breast cancer survivorship care in the primary care setting that could be targeted for improvement through educational or other interventions.

  3. Primary care physician use across the breast cancer care continuum

    PubMed Central

    Jiang, Li; Lofters, Aisha; Moineddin, Rahim; Decker, Kathleen; Groome, Patti; Kendell, Cynthia; Krzyzanowska, Monika; Li, Dongdong; McBride, Mary L.; Mittmann, Nicole; Porter, Geoff; Turner, Donna; Urquhart, Robin; Winget, Marcy; Zhang, Yang; Grunfeld, Eva

    2016-01-01

    Abstract Objective To describe primary care physician (PCP) use and continuity of PCP care across the breast cancer care continuum. Design Population-based, retrospective cohort study using provincial cancer registries linked to health administrative databases. Setting British Columbia, Manitoba, and Ontario. Participants All women with incident invasive breast cancer from 2007 to 2012 in Manitoba and Ontario and from 2007 to 2011 in British Columbia. Main outcome measures The number and proportions of visits to PCPs were determined. Continuity of care was measured using the Usual Provider of Care index calculated as the proportion of visits to the most-often-visited PCP in the 6 to 30 months before a breast cancer diagnosis (baseline) and from 1 to 3 years following a breast cancer diagnosis (survivorship). Results More than three-quarters of patients visited their PCPs 2 or more times during the breast cancer diagnostic period, and more than 80% of patients had at least 1 PCP visit during breast cancer adjuvant treatment. Contact with the PCP decreased over time during breast cancer survivorship. Of the 3 phases, women appeared to be most likely to not have PCP contact during adjuvant treatment, with 10.7% (Ontario) to 18.7% (British Columbia) of women having no PCP visits during this phase. However, a sizable minority of women had at least monthly visits during the treatment phase, particularly in Manitoba and Ontario, where approximately a quarter of women saw a PCP at least monthly. We observed higher continuity of care with PCPs in survivorship (compared with baseline) in all provinces. Conclusion Primary care physicians were generally involved throughout the breast cancer care continuum, but the level of involvement varied across care phases and by province. Future interventions will aim to further integrate primary and oncology care. PMID:27737994

  4. Preparing professional staff to care for cancer survivors.

    PubMed

    Grant, Marcia; Economou, Denice; Ferrell, Betty; Bhatia, Smita

    2007-03-01

    Oncology health care professionals frequently lack the background to implement needed survivorship activities and follow-up care. The purpose of this project is to assist providers in the clarification and initiation of potentially durable changes in survivorship care by developing a health professional curriculum, recruiting participants, implementing the course, conducting course evaluation and following participants' defined goals over time. The curriculum was developed based on recommendations from the Institute of Medicine Report-From Cancer Patient to Cancer Survivor--Lost in Transition. Three concepts were used to structure the course: cancer survivorship quality of life, changing practice via performance improvement, and principles of adult education. Expert faculty designed and implemented the curriculum and teaching methods using adult learning principles and an interactive approach. Competitively-selected, two-person interdisciplinary teams for the first course (July 12-15, 2006, Pasadena, California) were selected based on stated interests, three projected goals, and letters of commitment from administrators. Participants represented 52 cancer care settings from 28 states. Teams included Nurses (48.1%), Social Workers (20.7%), Physicians (18.8%), Directors/Administrators (6.6%), Psychologists (2.8%), and others (3%). The institutional barriers identified by teams were lack of survivorship knowledge (94 %), financial constraints (61%), lack of administrative support (6%), and staff philosophy that excluded survivorship (15%). Evaluation of content from the first course was consistently positive. Dissemination of survivorship education for health care professionals stimulates participants to define and begin to implement goals for improving survivors' care. A training program such as the one described provides professional knowledge regarding survivorship that has the potential to facilitate change in the health care that cancer survivors receive thus

  5. Testicular cancer: A narrative review of the role of socioeconomic position from risk to survivorship

    PubMed Central

    Richardson, Lisa C.; Neri, Antonio J.; Tai, Eric; Glenn, Jeffrey D.

    2015-01-01

    Background Testicular cancer (TC) is one of the most curable cancers. Given survival rates of close to 100% with appropriate therapy, ensuring proper treatment is essential. We reviewed and summarized the literature on the association of socioeconomic position (SEP) along the cancer control spectrum from risk factors to survivorship. Methods We searched PubMed from 1966 to 2011 using the following terms: testicular cancer, testicular neoplasm, poverty, and socioeconomic factors, retrieving 119 papers. After excluding papers for the non-English (10) language and non-relevance (46), we reviewed 63 papers. We abstracted information on socioeconomic position (SEP), including occupation, education, income, and combinations of the 3. Five areas were examined: risk factors, diagnosis, treatment, survival, and survivorship. Results Most studies examined area-based measures, not individual measures of SEP. The majority of studies found an increased risk of developing TC with high SEP though recent papers have indicated increased risk in low-income populations. Regarding diagnosis, recent papers have indicated that lower levels of education and SEP are risk factors for later-stage TC diagnosis and hence higher TC mortality. For treatment, 1 study that examined the use of radiation therapy (RT) in stage I seminoma reported that living in a county with lower educational attainment led to lower use of RT. For survival (mortality), several studies found that men living in lower SEP geographic areas experience lower survival and higher mortality. Conclusion The strongest evidence for SEP impact on testicular germ cell tumor (TGCT) was found for the risk of developing cancer as well as survival. The association of SEP with TGCT risk appears to have changed over the last decade. Given the highly curable nature of TGCT, more research is needed to understand how SEP impacts diagnosis and treatment for TGCT and to design interventions to address disparities in TGCT outcomes and SEP

  6. Testicular cancer: a narrative review of the role of socioeconomic position from risk to survivorship.

    PubMed

    Richardson, Lisa C; Neri, Antonio J; Tai, Eric; Glenn, Jeffrey D

    2012-01-01

    Testicular cancer (TC) is one of the most curable cancers. Given survival rates of close to 100% with appropriate therapy, ensuring proper treatment is essential. We reviewed and summarized the literature on the association of socioeconomic position (SEP) along the cancer control spectrum from risk factors to survivorship. We searched PubMed from 1966 to 2011 using the following terms: testicular cancer, testicular neoplasm, poverty, and socioeconomic factors, retrieving 119 papers. After excluding papers for the non-English (10) language and non-relevance (46), we reviewed 63 papers. We abstracted information on socioeconomic position (SEP), including occupation, education, income, and combinations of the 3. Five areas were examined: risk factors, diagnosis, treatment, survival, and survivorship. Most studies examined area-based measures, not individual measures of SEP. The majority of studies found an increased risk of developing TC with high SEP though recent papers have indicated increased risk in low-income populations. Regarding diagnosis, recent papers have indicated that lower levels of education and SEP are risk factors for later-stage TC diagnosis and hence higher TC mortality. For treatment, 1 study that examined the use of radiation therapy (RT) in stage I seminoma reported that living in a county with lower educational attainment led to lower use of RT. For survival (mortality), several studies found that men living in lower SEP geographic areas experience lower survival and higher mortality. The strongest evidence for SEP impact on testicular germ cell tumor (TGCT) was found for the risk of developing cancer as well as survival. The association of SEP with TGCT risk appears to have changed over the last decade. Given the highly curable nature of TGCT, more research is needed to understand how SEP impacts diagnosis and treatment for TGCT and to design interventions to address disparities in TGCT outcomes and SEP. Published by Elsevier Inc.

  7. Survivorship after allogeneic transplantation-management recommendations for the primary care provider.

    PubMed

    Tichelli, André; Rovó, Alicia

    2015-03-01

    Prognosis after allogeneic hematopoietic stem cell transplantation (HSCT) has greatly improved. Therefore, long-term survivorship becomes an important issue. A number of malignant and nonmalignant late effects can cause substantial morbidity, with considerable impact on health and quality of life. The main factors responsible for late effects after HSCT are total body irradiation-based conditioning and chronic graft-versus-host disease and its treatment. The knowledge on late effects serves as guidance for surveillance and management decision. Aftercare includes screening and counseling for prevention and treatment of late complications. The care of HSCT recipients tends with time to be transferred from the transplant center back to the primary care provider, who might not be however familiar with the unique needs of long-term survivors. A broad expertise is needed for the post-transplant management; therefore, transplant centers together with primary care providers should ensure complementary care delivery. Standardized follow-up guidelines on late effects represent the best tool to guaranty good management of long-term survivors. Distribution, broad promotion, and applications of these guidelines are therefore needed.

  8. Risk-Based Health Care, the Cancer Survivor, the Oncologist and the Primary Care Physician

    PubMed Central

    McCabe, Mary S.; Partridge, Ann; Grunfeld, Eva; Hudson, Melissa M.

    2015-01-01

    Cancer survivors face substantial risks for morbidity, reduced quality of life, and premature mortality related to the cancer itself and/or the interventions undertaken to control cancer. Risk-based care that involves a personalized systematic plan of periodic screening, surveillance, and prevention relevant to the cancer experience is recommended to address the comprehensive health needs of the growing population of cancer survivors. Risk-based care and coordination between oncology and primary care providers have been identified as important metrics of quality cancer survivorship care. Various models of survivorship care, treatment summaries and survivorship care plans have been promoted as methods to facilitate communication among providers across care transitions and improve survivor access to quality survivorship care. However, research supporting the feasibility of implementing these practices and their effectiveness in enhancing health outcomes is limited. This article reviews key concepts underpinning clinical and research initiatives endeavoring to improve access to quality care among long-term survivors and summarizes results of intervention studies implementing these elements in transitioning survivors from oncology to primary care providers for long-term follow-up care. PMID:24331199

  9. Feasibility and Acceptability of the PROMIS Measures in Children and Adolescents in Active Cancer Treatment and Survivorship

    PubMed Central

    Menard, Johanna C.; Hinds, Pamela S.; Jacobs, Shana S.; Cranston, Katie; Wang, Jichuan; DeWalt, Darren A.; Gross, Heather E.

    2013-01-01

    Background Patient-reported outcomes (PROs) related to symptoms, function, and quality of life during and following cancer treatment can guide care for pediatric cancer patients. To advance the science of PROs, the National Institutes of Health funded the Patient Reported Outcomes Measurement Information System (PROMIS). Objective To assess feasibility and acceptability of the PROMIS pediatric measures, as defined by enrollment and attrition rates as well as missingness by measure, item, participant, and assessment time point. Methods 8-to-18 year olds participated in two studies: PROMIS I, a cross-sectional study of children in active cancer treatment or survivorship, and PROMIS II, a longitudinal study with 3 assessment time points for children receiving curative treatment. Results PROMIS I (n=200) and PROMIS II (n=94) had enrollment rates of 92.5% and 89.7%, respectively. For PROMIS I, measure missingness was acceptable (8% missed any measures) and was not related to other study variables. For PROMIS II, measure missingness was minimal (0.8%), and item-level missingness was relatively low. In general, items that were skipped asked about experiences that participants had not encountered in the past 7 days. Conclusions In both studies, the PROMIS instruments demonstrated good feasibility and acceptability among pediatric cancer patients. Overall, we had high enrollment, low attrition, and acceptable rates of measure and item missingness. Implications for Practice Our results demonstrate that PROMIS measures are acceptable to 8-to-18 year-olds in different points of cancer care and feasible for use in pediatric cancer inpatient and outpatient settings. PMID:24036439

  10. Mental health outcomes during colorectal cancer survivorship: a review of the literature.

    PubMed

    Mosher, Catherine E; Winger, Joseph G; Given, Barbara A; Helft, Paul R; O'Neil, Bert H

    2016-11-01

    This article reviews literature on adults' mental health outcomes during acute and long-term colorectal cancer (CRC) survivorship. We identified articles that included at least one measure of psychological symptoms or mental quality of life or well-being through a search of databases (CINAHL, MEDLINE, PsycINFO, and PsycARTICLES). Articles were published between January 2004 and April 2015. A significant proportion of CRC survivors experience clinically meaningful levels of anxiety and depressive symptoms or reduced mental well-being across the trajectory of the illness. Demographic, medical, and psychosocial predictors of mental health outcomes were identified. However, few studies were theory-driven, and gaps remain in our understanding of risk and protective factors with respect to mental health outcomes, especially during long-term CRC survivorship. Theory-driven longitudinal research with larger samples is required to identify subgroups of CRC survivors with different trajectories of psychological adjustment. Such research would assess adjustment as a function of internal resources (e.g., personality and coping) and external resources (e.g., finances and social support) to inform future interventions for CRC survivors. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

  11. Accelerating Translation of Physical Activity and Cancer Survivorship Research into Practice: Recommendations for a More Integrated and Collaborative Approach

    PubMed Central

    Phillips, Siobhan M.; Alfano, Catherine M.; Perna, Frank M.; Glasgow, Russell E.

    2015-01-01

    Physical activity has been deemed safe and effective in reducing many negative side effects of treatment for cancer survivors and promoting better overall health. However, most of this research has focused on highly controlled randomized trials and little of this research has been translated into care or policy for survivors. The purpose of the present paper is to present a research agenda for the field to accelerate the dissemination and implementation of empirically-supported physical activity interventions into care. We provide rationale for the role of basic, behavioral, clinical implementation and population scientists in moving this science forward and call for a more coordinated effort across different phases of research. In addition, we provide key strategies and examples for ongoing and future studies using the RE-AIM (Reach, Efficacy/Effectiveness, Adoption, Implementation and Maintenance) framework and pose recommendations for collaborations between researchers and stakeholders to enhance the integration of this research into policy and practice. Overall, we recommend that physical activity and cancer survivorship research employ additional study designs, include relevant stakeholders and be more collaborative, integrated, contextual, and representative in terms of both setting and participants. PMID:24599577

  12. Accelerating translation of physical activity and cancer survivorship research into practice: recommendations for a more integrated and collaborative approach.

    PubMed

    Phillips, Siobhan M; Alfano, Catherine M; Perna, Frank M; Glasgow, Russell E

    2014-05-01

    Physical activity has been deemed safe and effective in reducing many negative side effects of treatment for cancer survivors and promoting better overall health. However, most of this research has focused on highly controlled randomized trials and little of this research has been translated into care or policy for survivors. The purpose of the present article is to present a research agenda for the field to accelerate the dissemination and implementation of empirically supported physical activity interventions into care. We provide rationale for the role of basic, behavioral, clinical implementation, and population scientists in moving this science forward and call for a more coordinated effort across different phases of research. In addition, we provide key strategies and examples for ongoing and future studies using the RE-AIM (reach, efficacy/effectiveness, adoption, implementation, and maintenance) framework and pose recommendations for collaborations between researchers and stakeholders to enhance the integration of this research into policy and practice. Overall, we recommend that physical activity and cancer survivorship research use additional study designs, include relevant stakeholders, and be more collaborative, integrated, contextual, and representative in terms of both setting and participants.

  13. NCCN Guidelines Insights: Survivorship, Version 1.2016.

    PubMed

    Denlinger, Crystal S; Ligibel, Jennifer A; Are, Madhuri; Baker, K Scott; Broderick, Gregory; Demark-Wahnefried, Wendy; Friedman, Debra L; Goldman, Mindy; Jones, Lee W; King, Allison; Ku, Grace H; Kvale, Elizabeth; Langbaum, Terry S; McCabe, Mary S; Melisko, Michelle; Montoya, Jose G; Mooney, Kathi; Morgan, Mary Ann; Moslehi, Javid J; O'Connor, Tracey; Overholser, Linda; Paskett, Electra D; Peppercorn, Jeffrey; Rodriguez, M Alma; Ruddy, Kathryn J; Sanft, Tara; Silverman, Paula; Smith, Sophia; Syrjala, Karen L; Urba, Susan G; Wakabayashi, Mark T; Zee, Phyllis; McMillian, Nicole R; Freedman-Cass, Deborah A

    2016-06-01

    The NCCN Guidelines for Survivorship provide screening, evaluation, and treatment recommendations for common consequences of cancer and cancer treatment. They are intended to aid health care professionals who work with survivors of adult-onset cancer in the posttreatment period, including those in general oncology, specialty cancer survivor clinics, and primary care practices. Guidance is also provided to help promote physical activity, weight management, and proper immunizations in survivors. This article summarizes the NCCN Survivorship panel's discussions for the 2016 update of the guidelines regarding the management of anxiety, depression, posttraumatic stress disorder-related symptoms, and emotional distress in survivors.

  14. Non–Small Cell Lung Cancer: Epidemiology, Risk Factors, Treatment, and Survivorship

    PubMed Central

    Molina, Julian R.; Yang, Ping; Cassivi, Stephen D.; Schild, Steven E.; Adjei, Alex A.

    2009-01-01

    Lung cancer is the leading cause of cancer-related mortality not only in the United States but also around the world. In North America, lung cancer has become more predominant among former than current smokers. Yet in some countries, such as China, which has experienced a dramatic increase in the cigarette smoking rate during the past 2 decades, a peak in lung cancer incidence is still expected. Approximately two-thirds of adult Chinese men are smokers, representing one-third of all smokers worldwide. Non–small cell lung cancer accounts for 85% of all lung cancer cases in the United States. After the initial diagnosis, accurate staging of non–small cell lung cancer using computed tomography or positron emission tomography is crucial for determining appropriate therapy. When feasible, surgical resection remains the single most consistent and successful option for cure. However, close to 70% of patients with lung cancer present with locally advanced or metastatic disease at the time of diagnosis. Chemotherapy is beneficial for patients with metastatic disease, and the administration of concurrent chemotherapy and radiation is indicated for stage III lung cancer. The introduction of angiogenesis, epidermal growth factor receptor inhibitors, and other new anticancer agents is changing the present and future of this disease and will certainly increase the number of lung cancer survivors. We identified studies for this review by searching the MEDLINE and PubMed databases for English-language articles published from January 1, 1980, through January 31, 2008. Key terms used for this search included non–small cell lung cancer, adenocarcinoma, squamous cell carcinoma, bronchioalveolar cell carcinoma, large cell carcinoma, lung cancer epidemiology, genetics, survivorship, surgery, radiation therapy, chemotherapy, targeted therapy, bevacizumab, erlotinib, and epidermal growth factor receptor. PMID:18452692

  15. The Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship registry: scope, rationale and design of an infrastructure for the study of physical and psychosocial outcomes in cancer survivorship cohorts.

    PubMed

    van de Poll-Franse, Lonneke V; Horevoorts, Nicole; van Eenbergen, Mies; Denollet, Johan; Roukema, Jan Anne; Aaronson, Neil K; Vingerhoets, Ad; Coebergh, Jan Willem; de Vries, Jolanda; Essink-Bot, Marie-Louise; Mols, Floortje

    2011-09-01

    'Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES)' is a registry for the study of the physical and psychosocial impact of cancer and its treatment from a dynamic, growing population-based cohort of both short and long-term cancer survivors. PROFILES contains a large web-based component and are linked directly to clinical data from the population-based Eindhoven cancer registry. This paper describes the rationale and design of PROFILES. The primary aims of studies that use the PROFILES registry are: (1) psychosocial risk and outcome assessment to identify patients at high risk for poor physical and mental health outcomes, (2) to analyse mediating mechanisms to better understand the biological and behavioural factors associated with cancer treatment outcomes, and (3) to evaluate physical and psychosocial care needs of cancer survivors. PROFILES is a tool that enables data collection management; from inviting patients to participation in studies, to collecting patient-reported outcomes data via web-based or mailed questionnaires and linking these data with clinical data. The availability of a control cohort of approximately 2000 persons from the general population who complete the same basic questionnaire annually will provide the opportunity to estimate the unique impact of cancer, beyond that of normal ageing and comorbidities. Raw data from the PROFILES registry will be available for non-commercial scientific research, subject to study question, privacy and confidentiality restrictions, and registration (www.profilesregistry.nl).

  16. Radiation-induced bowel injury: the impact of radiotherapy on survivorship after treatment for gynaecological cancers

    PubMed Central

    Kuku, S; Fragkos, C; McCormack, M; Forbes, A

    2013-01-01

    Background: The number of women surviving cancer who live with symptoms of bowel toxicity affecting their quality of life continues to rise. In this retrospective study, we sought to describe and analyse the presenting clinical features in our cohort, and evaluate possible predictors of severity and chronicity in women with radiation-induced bowel injury after treatment for cervical and endometrial cancers. Methods: Review of records of 541 women treated within the North London Gynaecological Cancer Network between 2003 and 2010 with radiotherapy with or without chemotherapy for cervical and endometrial cancer identified 152 women who reported significant new bowel symptoms after pelvic radiation. Results: Factor analysis showed that the 14 most common and important presenting symptoms could be ‘clustered' into 3 groups with predictive significance for chronicity and severity of disease. Median follow-up for all patients was 60 months. Univariate analysis showed increasing age, smoking, extended field radiation, cervical cancer treatment and the need for surgical intervention to be significant predictors for severity of ongoing disease at last follow-up. On multivariate analysis, only age, cancer type (cervix) and symptom combinations/‘cluster' of (bloating, flatulence, urgency, rectal bleeding and per-rectal mucus) were found to be significant predictors of disease severity. Fifteen (19%) women in the cervical cancer group had radiation-induced bowel injury requiring surgical intervention compared with five (6.7%) in the endometrial cancer group. Conclusion: Women with cervical cancer are younger and appear to suffer more severe symptoms of late bowel toxicity, whereas women treated for endometrial cancer suffer milder more chronic disease. The impact of radiation-induced bowel injury and the effect on cancer survivorship warrants further research into investigation of predictors of severe late toxicity. There is a need for prospective trials to aid early

  17. Cancer Survivorship in the Age of YouTube and Social Media: A Narrative Analysis

    PubMed Central

    Hunt, Yvonne; Folkers, Anna

    2011-01-01

    Background As evidenced by the increasing popularity of YouTube (www.youtube.com), personal narratives shared through social media are an area of rapid development in communication among cancer survivors. Identifying the thematic and linguistic characteristics of YouTube cancer stories can provide a better understanding of this naturally occurring communication channel and inform social media communication efforts aiming to use personal stories to reach individuals with serious illnesses. Objective The objective of our study was to provide an in-depth description of authentic personal cancer stories. Through a linguistically based narrative analysis of YouTube stories, the analysis explicates the common attributes of these narratives. Methods Informed by narrative theories, we conducted an iterative, bottom-up analysis of 35 YouTube videos identified by the search terms “cancer survivor” and “cancer stories”. A list of shared thematic and linguistic characteristics was identified and analyzed. Results A subnarrative on the cancer diagnosis was present in 86% (30/35) of the stories under analysis. These diagnostic narratives were characterized by dramatic tension, emotional engagement, markers of the loss of agency or control, depersonalized reference to the medical personnel, and the unexpectedness of a cancer diagnosis. The analysis highlights the themes of story authenticity and emotional engagement in this online communication medium. Conclusions Internet advances have enabled new and efficient exchange of personal stories, including the sharing of personal cancer experience among cancer survivors and their caregivers. The analytic results of this descriptive study point to the common characteristics of authentic cancer survivorship stories online. Furthermore, the results of this descriptive study may inform development of narrative-based communication, particularly in maintaining authenticity and emotional engagement. PMID:21247864

  18. Cancer survivorship in the age of YouTube and social media: a narrative analysis.

    PubMed

    Chou, Wen-Ying Sylvia; Hunt, Yvonne; Folkers, Anna; Augustson, Erik

    2011-01-17

    As evidenced by the increasing popularity of YouTube (www.youtube.com), personal narratives shared through social media are an area of rapid development in communication among cancer survivors. Identifying the thematic and linguistic characteristics of YouTube cancer stories can provide a better understanding of this naturally occurring communication channel and inform social media communication efforts aiming to use personal stories to reach individuals with serious illnesses. The objective of our study was to provide an in-depth description of authentic personal cancer stories. Through a linguistically based narrative analysis of YouTube stories, the analysis explicates the common attributes of these narratives. Informed by narrative theories, we conducted an iterative, bottom-up analysis of 35 YouTube videos identified by the search terms "cancer survivor" and "cancer stories". A list of shared thematic and linguistic characteristics was identified and analyzed. A subnarrative on the cancer diagnosis was present in 86% (30/35) of the stories under analysis. These diagnostic narratives were characterized by dramatic tension, emotional engagement, markers of the loss of agency or control, depersonalized reference to the medical personnel, and the unexpectedness of a cancer diagnosis. The analysis highlights the themes of story authenticity and emotional engagement in this online communication medium. Internet advances have enabled new and efficient exchange of personal stories, including the sharing of personal cancer experience among cancer survivors and their caregivers. The analytic results of this descriptive study point to the common characteristics of authentic cancer survivorship stories online. Furthermore, the results of this descriptive study may inform development of narrative-based communication, particularly in maintaining authenticity and emotional engagement.

  19. Gender representation of cancer patients in medical treatment and psychosocial survivorship research: changes over three decades.

    PubMed

    Hoyt, Michael A; Rubin, Lisa R

    2012-10-01

    Prior studies raise concern about gender bias in cancer research, including insufficient inclusion of women or men, or studying women and men differently. The 1993 National Institutes of Health Revitalization Act aimed to eliminate gender bias in medicine. To examine changes in medical and psychological literature, this study reviews gender representation in biomedical treatment studies and psychosocial survivorship studies published in a single year. Research published in Cancer in 2007, and all empirical psychological studies about cancer published that year, provided a 15-year update to findings reported by Meyerowitz and Hart. The gender distribution and context of included articles were coded and compared with findings from 1983 and 1992. Across biomedical studies, 34.3% of subjects were women (vs 47% of new cancers and 48% of cancer deaths). Among men, 41.3% had sex-specific cancers (vs 12.5% [1983] and 12.3% [1992]). Among women, 46.1% had sex-specific cancers (vs 69.1% [1983] and 64.6% [1992]). Fewer women (36.8%) were represented in sex-nonspecific cancer studies (vs 41.4% [1983] and 42.5% [1992]); however, fewer studies had a significant (>20%) gender disparity. Across psychosocial studies, representation of men increased to 47.9% (vs 30.4% [1983] and 29.9% [1992]). The proportion of men in studies of feelings/relationships increased to 47% (vs 22.9% [1992]); the proportion of women in studies assessing physical/functional ability increased to 58.3% (vs 45.4%). Women remain under-represented in sex-nonspecific biomedical research, whereas men's representation in sex-specific research increased substantially. Psychosocial research trends suggest movement from research questions supporting traditional stereotypes that women feel and men act. Copyright © 2012 American Cancer Society.

  20. Cultural influences on the survivorship of families affected by childhood cancer: a case for using family systems theories.

    PubMed

    Yi, Jaehee

    2009-09-01

    This paper uses the family systems perspective to synthesize existing studies on the 3 components of Olson's (2000) Circumplex Model-family cohesion, flexibility, and communication-as they relate to family adaptation to cancer; and to extend the discussion to the cultural influences on these components. Family systems theory was found to be a useful framework for understanding the variance of positive and negative family adaptation in the survivorship of childhood cancer and the cultural impact on the family level variables.

  1. The Malaysian Breast Cancer Survivorship Cohort (MyBCC): a study protocol

    PubMed Central

    Islam, Tania; Bhoo-Pathy, Nirmala; Su, Tin Tin; Majid, Hazreen Abdul; Nahar, Azmi Mohd; Ng, Chong Guan; Dahlui, Maznah; Hussain, Samsinah; Cantwell, Marie; Murray, Liam; Taib, Nur Aishah

    2015-01-01

    Introduction Over recent decades, the burden of breast cancer has been increasing at an alarming rate in Asia. Prognostic research findings from Western countries may not readily be adapted to Asia, as the outcome of breast cancer depends on a multitude of factors ranging from genetic, clinical and histological predictors, to lifestyle and social predictors. The primary aim of this study is to determine the impact of lifestyle (eg, nutrition, physical activity), mental and sociocultural condition, on the overall survival and quality of life (QoL) among multiethnic Malaysian women following diagnosis of breast cancer. This study aims to advance the evidence on prognostic factors of breast cancer within the Asian setting. The findings may guide management of patients with breast cancer not only during active treatment but also during the survivorship period. Methods This hospital-based prospective cohort study will comprise patients with breast cancer (18 years and above), managed in the University Malaya Medical Centre (UMMC). We aim to recruit 1000 cancer survivors over a 6-year period. Data collection will occur at baseline (within 3 months of diagnosis), 6 months, and 1, 3 and 5 years following diagnosis. The primary outcomes are disease-free survival and overall survival, and secondary outcome is QoL. Factors measured are demographic and socioeconomic factors, lifestyle factors (eg, dietary intake, physical activity), anthropometry measurements (eg, height, weight, waist, hip circumference, body fat analysis), psychosocial aspects, and complementary and alternative medicine (CAM) usage. Ethics and dissemination This protocol was approved by the UMMC Ethical Committee in January 2012. All participants are required to provide written informed consent. The findings from our cohort study will be disseminated via scientific publication as well as presentation to stakeholders including the patients, clinicians, the public and policymakers, via appropriate

  2. Beyond treatment - Psychosocial and behavioural issues in cancer survivorship research and practice.

    PubMed

    Aaronson, Neil K; Mattioli, Vittorio; Minton, Ollie; Weis, Joachim; Johansen, Christoffer; Dalton, Susanne O; Verdonck-de Leeuw, Irma M; Stein, Kevin D; Alfano, Catherine M; Mehnert, Anja; de Boer, Angela; van de Poll-Franse, Lonneke V

    2014-06-01

    The population of cancer survivors has grown steadily over the past several decades. Surviving cancer, however, is not synonymous with a life free of problems related to the disease and its treatment. In this paper we provide a brief overview of selected physical and psychosocial health problems prevalent among cancer survivors, namely pain, fatigue, psychological distress and work participation. We also address issues surrounding self-management and e-Health interventions for cancer survivors, and programmes to encourage survivors to adopt healthier lifestyles. Finally, we discuss approaches to assessing health-related quality of life in cancer survivors, and the use of cancer registries in conducting psychosocial survivorship research. We highlight research and practice priorities in each of these areas. While the priorities vary per topic, common themes that emerged included: (1) Symptoms should not be viewed in isolation, but rather as part of a cluster of interrelated symptoms. This has implications for both understanding the aetiology of symptoms and for their treatment; (2) Psychosocial interventions need to be evidence-based, and where possible should be tailored to the needs of the individual cancer survivor. Relatively low cost interventions with self-management and e-Health elements may be appropriate for the majority of survivors, with resource intensive interventions being reserved for those most in need; (3) More effort should be devoted to disseminating and implementing interventions in practice, and to evaluating their cost-effectiveness; and (4) Greater attention should be paid to the needs of vulnerable and high-risk populations of survivors, including the socioeconomically disadvantaged and the elderly.

  3. The Malaysian Breast Cancer Survivorship Cohort (MyBCC): a study protocol.

    PubMed

    Islam, Tania; Bhoo-Pathy, Nirmala; Su, Tin Tin; Majid, Hazreen Abdul; Nahar, Azmi Mohd; Ng, Chong Guan; Dahlui, Maznah; Hussain, Samsinah; Cantwell, Marie; Murray, Liam; Taib, Nur Aishah

    2015-10-26

    Over recent decades, the burden of breast cancer has been increasing at an alarming rate in Asia. Prognostic research findings from Western countries may not readily be adapted to Asia, as the outcome of breast cancer depends on a multitude of factors ranging from genetic, clinical and histological predictors, to lifestyle and social predictors. The primary aim of this study is to determine the impact of lifestyle (eg, nutrition, physical activity), mental and sociocultural condition, on the overall survival and quality of life (QoL) among multiethnic Malaysian women following diagnosis of breast cancer. This study aims to advance the evidence on prognostic factors of breast cancer within the Asian setting. The findings may guide management of patients with breast cancer not only during active treatment but also during the survivorship period. This hospital-based prospective cohort study will comprise patients with breast cancer (18 years and above), managed in the University Malaya Medical Centre (UMMC). We aim to recruit 1000 cancer survivors over a 6-year period. Data collection will occur at baseline (within 3 months of diagnosis), 6 months, and 1, 3 and 5 years following diagnosis. The primary outcomes are disease-free survival and overall survival, and secondary outcome is QoL. Factors measured are demographic and socioeconomic factors, lifestyle factors (eg, dietary intake, physical activity), anthropometry measurements (eg, height, weight, waist, hip circumference, body fat analysis), psychosocial aspects, and complementary and alternative medicine (CAM) usage. This protocol was approved by the UMMC Ethical Committee in January 2012. All participants are required to provide written informed consent. The findings from our cohort study will be disseminated via scientific publication as well as presentation to stakeholders including the patients, clinicians, the public and policymakers, via appropriate avenues. Published by the BMJ Publishing Group

  4. Trajectories of Anxiety Among Women with Breast Cancer: A Proxy for Adjustment from Acute to Transitional Survivorship.

    PubMed

    Saboonchi, Fredrik; Petersson, Lena-Marie; Wennman-Larsen, Agneta; Alexanderson, Kristina; Vaez, Marjan

    2015-01-01

    Anxiety is one of the main components of distress among women with breast cancer (BC), particularly in the early stages of the disease. Changes in anxiety over time may reflect the process of adjustment or lack thereof. The process of adjustment in the traverse of acute to transitional stages of survivorship warrants further examination. To examine the trajectory of anxiety and the specific patterns that may indicate a lack of adjustment within 2 years following BC surgery, survey data from a 2-year prospective cohort study of 725 women with BC were analyzed by Mixture Growth Modelling and logistic regression and Analysis of Variance. A piece-wise growth curve displayed the best fit to the data, indicating a significant decrease in anxiety in the first year, followed by a slower rate of change during the second year. Four classes of trajectories were identified: High Stable, High Decrease, Mild Decrease, and Low Decrease. Of these, High Stable anxiety showed the most substantive indications of lack of adjustment. This subgroup was predominantly characterized by sociodemographic variables such as financial difficulties. Our results support an emphasis on the transitional nature of the stage that follows the end of primary active treatment and imply a need for supportive follow up care for those who display lack of adjustment at this stage.

  5. Coordinating care and treatment for cancer patients.

    PubMed

    Yip, Cheng Har; Samiei, Massoud; Cazap, Eduardo; Rosenblatt, Eduardo; Datta, Niloy Ranjan; Camacho, Rolando; Weller, David; Pannarunothai, Supasit; Goh, Cynthia; Black, Fraser; Kaur, Ranjit; Fitch, Margaret; Sutcliffe, Catherine; Sutcliffe, Simon

    2012-01-01

    Survival following a diagnosis of cancer is contingent upon an interplay of factors, some non-modifiable (e.g., age, sex, genetics) and some modifiable (e.g., volitional choices) but the majority determined by circumstance (personal, social, health system context and capacity, and health policy). Accordingly, mortality and survival rates vary considerably as a function of geography, opportunity, wealth and development. Quality of life is impacted similarly, such that aspects of care related to coordination and integration of care across primary, community and specialist environments; symptom control, palliative and end-of-life care for those who will die of cancer; and survivorship challenges for those who will survive cancer, differs greatly across low, middle and high-income resource settings. Session 3 of the 4th International Cancer Control Congress (ICCC-4) focused on cancer care and treatment through three plenary presentations and five interactive workshop discussions: 1) establishing, implementing, operating and sustaining the capacity for quality cancer care; 2) the role of primary, community, and specialist care in cancer care and treatment; 3) the economics of affordable and sustainable cancer care; 4) issues around symptom control, support, and palliative/end-of-life care; and 5) issues around survivorship. A number of recommendations were proposed relating to capacity-building (standards and guidelines, protocols, new technologies and training and deployment) for safe, appropriate evidence-informed care; mapping and analysis of variations in primary, community and specialist care across countries with identification of models for effective, integrated clinical practice; the importance of considering the introduction, or expansion, of evidence-supported clinical practices from the perspectives of health economic impact, the value for health resources expended, and sustainability; capacity-building for palliative, end-of-life care and symptom control and

  6. Psychosocial Follow-Up in Survivorship as a Standard of Care in Pediatric Oncology

    PubMed Central

    Lown, E. Anne; Phillips, Farya; Schwartz, Lisa A.; Rosenberg, Abby R.; Jones, Barbara

    2017-01-01

    Childhood cancer survivors (CCS) have a high risk of medical late effects following cancer therapy. Psychosocial late effects are less often recognized. Many CCS do not receive long-term follow-up (LTFU) care, and those who do are rarely screened for psychosocial late effects. An interdisciplinary team conducted a systematic review of qualitative and quantitative studies to assess social, educational, vocational, psychological, and behavioral outcomes along with factors related to receipt of LTFU care. We propose that psychosocial screening be considered a standard of care in long-term follow-up care and that education be provided to promote the use LTFU care starting early in the treatment trajectory. PMID:26700918

  7. Psychosocial Follow-Up in Survivorship as a Standard of Care in Pediatric Oncology.

    PubMed

    Lown, E Anne; Phillips, Farya; Schwartz, Lisa A; Rosenberg, Abby R; Jones, Barbara

    2015-12-01

    Childhood cancer survivors (CCS) have a high risk of medical late effects following cancer therapy. Psychosocial late effects are less often recognized. Many CCS do not receive long-term follow-up (LTFU) care, and those who do are rarely screened for psychosocial late effects. An interdisciplinary team conducted a systematic review of qualitative and quantitative studies to assess social, educational, vocational, psychological, and behavioral outcomes along with factors related to receipt of LTFU care. We propose that psychosocial screening be considered a standard of care in long-term follow-up care and that education be provided to promote the use LTFU care starting early in the treatment trajectory. © 2015 Wiley Periodicals, Inc.

  8. A Systematic Review of Spiritually Based Interventions and Psychoneuroimmunological Outcomes in Breast Cancer Survivorship

    PubMed Central

    Hulett, Jennifer M.; Armer, Jane M.

    2016-01-01

    Objective This is a review of spiritually based interventions (eg, mindfulness-based stress reduction) that utilized psychoneuroimmunological (PNI) outcome measures in breast cancer survivors. Specifically, this review sought to examine the evidence regarding relationships between spiritually based interventions, psychosocial-spiritual outcomes, and biomarker outcomes in breast cancer survivors. Methods A systematic search of 9 online databases was conducted for articles of original research, peer-reviewed, randomized and nonrandomized control trials from 2005–2015. Data were extracted in order to answer selected questions regarding relationships between psychosocial-spiritual and physiological measures utilized in spiritually based interventions. Implications for future spiritually based interventions in breast cancer survivorship are discussed. Results Twenty-two articles were reviewed. Cortisol was the most common PNI biomarker outcome studied. Compared with control groups, intervention groups demonstrated positive mental health outcomes and improved or stable neuroendocrine-immune profiles, although limitations exist. Design methods have improved with regard to increased use of comparison groups compared with previous reviews. There are few spiritually based interventions that specifically measure religious or spiritual constructs. Similarly, there are few existing studies that utilize standardized religious or spiritual measures with PNI outcome measures. Findings suggest that a body of knowledge now exists in support of interventions with mindfulness-breathing-stretching components; furthermore, these interventions appear to offer potential improvement or stabilization of neuroendocrine-immune activity in breast cancer survivors compared to control groups. Conclusion From a PNI perspective, future spiritually based interventions should include standardized measures of religiousness and spirituality in order to understand relationships between and among

  9. Diabetes and other comorbidities in breast cancer survival by race/ethnicity: the California Breast Cancer Survivorship Consortium (CBCSC).

    PubMed

    Wu, Anna H; Kurian, Allison W; Kwan, Marilyn L; John, Esther M; Lu, Yani; Keegan, Theresa H M; Gomez, Scarlett Lin; Cheng, Iona; Shariff-Marco, Salma; Caan, Bette J; Lee, Valerie S; Sullivan-Halley, Jane; Tseng, Chiu-Chen; Bernstein, Leslie; Sposto, Richard; Vigen, Cheryl

    2015-02-01

    The role of comorbidities in survival of patients with breast cancer has not been well studied, particularly in non-white populations. We investigated the association of specific comorbidities with mortality in a multiethnic cohort of 8,952 breast cancer cases within the California Breast Cancer Survivorship Consortium (CBCSC), which pooled questionnaire and cancer registry data from five California-based studies. In total, 2,187 deaths (1,122 from breast cancer) were observed through December 31, 2010. Using multivariable Cox proportional hazards regression, we estimated HRs and 95% confidence intervals (CI) for overall and breast cancer-specific mortality associated with previous cancer, diabetes, high blood pressure (HBP), and myocardial infarction. Risk of breast cancer-specific mortality increased among breast cancer cases with a history of diabetes (HR, 1.48; 95% CI, 1.18-1.87) or myocardial infarction (HR, 1.94; 95% CI, 1.27-2.97). Risk patterns were similar across race/ethnicity (non-Latina white, Latina, African American, and Asian American), body size, menopausal status, and stage at diagnosis. In subgroup analyses, risk of breast cancer-specific mortality was significantly elevated among cases with diabetes who received neither radiotherapy nor chemotherapy (HR, 2.11; 95% CI, 1.32-3.36); no increased risk was observed among those who received both treatments (HR, 1.13; 95% CI, 0.70-1.84; P(interaction) = 0.03). A similar pattern was found for myocardial infarction by radiotherapy and chemotherapy (P(interaction) = 0.09). These results may inform future treatment guidelines for patients with breast cancer with a history of diabetes or myocardial infarction. Given the growing number of breast cancer survivors worldwide, we need to better understand how comorbidities may adversely affect treatment decisions and ultimately outcome. ©2014 American Association for Cancer Research.

  10. Typologies for Restructuring Relationships in Cancer Survivorship: Temporal Changes in Social Support and Engagement With Self-Management Practices.

    PubMed

    Henshall, Catherine L; Greenfield, Sheila M; Gale, Nicola K

    2017-09-26

    Cancer survivors with good social support are generally more motivated to undertake self-management behaviors and make lifestyle changes. However, the impact of changes in social support over time, from prediagnosis through treatment and into survivorship, on the health and recovery of cancer survivors with a range of cancer diagnoses has not been explored. The aim of this study was to examine how temporal changes in social support offered to cancer survivors by family and friends influence their engagement with self-management practices and adaptation to lifestyle changes. The interview study took place in a teaching hospital in the West Midlands, United Kingdom. Forty participants were purposively sampled. A narrative approach to data collection was chosen, and data were thematically analyzed. Six typologies of restructuring relationships postcancer were identified. A greater understanding of the changes to social relationships that a cancer diagnosis can incur and the impact of this on people's outlook and ability to self-manage was developed. The restructuring of social relationships by cancer survivors over time can impact their outlook and ability to self-manage in survivorship, shaping their engagement with health promoting activities and reconciling cancer within the wider context of their lives. Appropriate clinical nursing processes and tailored interventions are required to support cancer survivors and promote engagement with self-management practices. Nurses are a vital component of the social support that enables patients to make the best health and lifestyle choices available to them.

  11. Diabetes and other comorbidities in breast cancer survival by race/ethnicity: The California Breast Cancer Survivorship Consortium (CBCSC)

    PubMed Central

    Wu, Anna H.; Kurian, Allison W.; Kwan, Marilyn L.; John, Esther M.; Lu, Yani; Keegan, Theresa H.M.; Gomez, Scarlett Lin; Cheng, Iona; Shariff-Marco, Salma; Caan, Bette J.; Lee, Valerie S.; Sullivan-Halley, Jane; Tseng, Chiu-Chen; Bernstein, Leslie; Sposto, Richard; Vigen, Cheryl

    2015-01-01

    Background The role of comorbidities in survival of breast cancer patients has not been well studied, particularly in non-white populations. Methods We investigated the association of specific comorbidities with mortality in a multiethnic cohort of 8,952 breast cancer cases within the California Breast Cancer Survivorship Consortium (CBCSC), which pooled questionnaire and cancer registry data from five California-based studies. In total, 2,187 deaths (1,122 from breast cancer) were observed through December 31, 2010. Using multivariable Cox proportional hazards regression, we estimated hazards ratios (HR) and 95% confidence intervals (CI) for overall and breast cancer-specific mortality associated with previous cancer, diabetes, high blood pressure (HBP), and myocardial infarction (MI). Results Risk of breast cancer-specific mortality increased among breast cancer cases with a history of diabetes (HR=1.48, 95% CI=1.18, 1.87) or MI (HR=1.94, 95% CI=1.27–2.97). Risk patterns were similar across race/ethnicity (non-Latina White, Latina, African American and Asian American), body size, menopausal status, and stage at diagnosis. In subgroup analyses, risk of breast cancer-specific mortality was significantly elevated among cases with diabetes who received neither radiation nor chemotherapy (HR=2.11, 95% CI=1.32–3.36); no increased risk was observed among those who received both treatments (HR=1.13, 95% CI= 0.70–1.84) (P interaction= 0.03). A similar pattern was found for MI by radiation and chemotherapy (P interaction=0.09). Conclusion These results may inform future treatment guidelines for breast cancer patients with a history of diabetes or MI. Impact Given the growing number of breast cancer survivors worldwide, we need to better understand how comorbidities may adversely affect treatment decisions and ultimately outcome. PMID:25425578

  12. Women's Educational Needs and Perceptions About Survivorship Following Bilateral Mastectomy.

    PubMed

    Suplee, Patricia D; Jerome-D'Emilia, Bonnie; Boiler, Jennifer L K

    2016-08-01

    More women are choosing to have a bilateral mastectomy to treat unilateral breast cancer despite it not being considered the standard of care. Women are making this choice for various reasons, including anxiety of follow-up screening of the other breast, risk of cancer recurrence for the rest of their lives, and desire to maintain control over the localized cancer. Currently, evidence-based information is lacking regarding this treatment choice. In addition, the concept of survivorship has yet to be examined in this population of women. This study aimed to explore women's educational needs and perceptions about survivorship following bilateral mastectomy as a treatment for unilateral breast cancer. In-depth interviews were conducted with 23 women using a semistructured interview guide. Data were elicited, coded, and analyzed using thematic analysis. Two themes were identified that addressed education and survivorship.

  13. The California Breast Cancer Survivorship Consortium (CBCSC): Prognostic factors associated with racial/ethnic differences in breast cancer survival

    PubMed Central

    Wu, Anna H.; Gomez, Scarlett Lin; Vigen, Cheryl; Kwan, Marilyn L.; Keegan, Theresa H.M.; Lu, Yani; Shariff-Marco, Salma; Monroe, Kristine R.; Kurian, Allison W.; Cheng, Iona; Caan, Bette J.; Lee, Valerie S.; Roh, Janise M.; Sullivan-Halley, Jane; Henderson, Brian E.; Bernstein, Leslie; John, Esther M.; Sposto, Richard

    2014-01-01

    Racial/ethnic disparities in mortality among US breast cancer patients are well-documented. Our knowledge of the contribution of lifestyle factors to disease prognosis is based primarily on non-Latina Whites and is limited for Latina, African American and Asian American women. To address this knowledge gap, the California Breast Cancer Survivorship Consortium (CBCSC) harmonized and pooled interview information (e.g., demographics, family history of breast cancer, parity, smoking, alcohol consumption) from six California-based breast cancer studies and assembled corresponding cancer registry data (clinical characteristics, mortality), resulting in 12,210 patients (6,501 non-Latina Whites, 2,060 African Americans, 2,032 Latinas, 1,505 Asian Americans, 112 other race/ethnicity) diagnosed with primary invasive breast cancer between 1993 and 2007. In total, 3,047 deaths (1,570 breast cancer-specific) were observed with a mean (SD) follow-up of 8.3 (3.5) years. Cox-proportional hazards regression models were fit to data to estimate hazards ratios (HR) and 95% confidence intervals (CI) for overall and breast cancer-specific mortality. Compared with non-Latina Whites, the HR of breast cancer-specific mortality was 1.13 (95% CI, 0.97-1.33) for African Americans, 0.84 (95% CI, 0.70-1.00) for Latinas, and 0.60 (95% CI, 0.37-0.97) for Asian Americans after adjustment for age, tumor characteristics, and select lifestyle factors. The CBCSC represents a large and racially/ethnically diverse cohort of breast cancer patients from California. This cohort will enable analyses to jointly consider a variety of clinical, lifestyle, and contextual factors in attempting to explain the long-standing disparities in breast cancer outcomes. PMID:23864487

  14. Sexual minority cancer survivors' satisfaction with care.

    PubMed

    Jabson, Jennifer M; Kamen, Charles S

    2016-01-01

    Satisfaction with care is important to cancer survivors' health outcomes. Satisfaction with care is not equal for all cancer survivors, and sexual minority (i.e., lesbian, gay, and bisexual) cancer survivors may experience poor satisfaction with care. Data were drawn from the 2010 LIVESTRONG national survey. The final sample included 207 sexual minority cancer survivors and 4,899 heterosexual cancer survivors. Satisfaction with care was compared by sexual orientation, and a Poisson regression model was computed to test the associations between sexual orientation and satisfaction with care, controlling for other relevant variables. Sexual minority cancer survivors had lower satisfaction with care than did heterosexual cancer survivors (B = -0.12, SE = 0.04, Wald χ(2) = 9.25, p< .002), even controlling for demographic and clinical variables associated with care. Sexual minorities experience poorer satisfaction with care compared to heterosexual cancer survivors. Satisfaction with care is especially relevant to cancer survivorship in light of the cancer-related health disparities reported among sexual minority cancer survivors.

  15. Sexual Minority Cancer Survivors’ Satisfaction with Care

    PubMed Central

    Jabson, Jennifer; Kamen, Charles S.

    2016-01-01

    Background Satisfaction with care is important to cancer survivors’ health outcomes. Satisfaction with care is not equal for all cancer survivors and sexual minority (i.e., lesbian, gay, and bisexual) cancer survivors may experience poor satisfaction with care. Methods Data were drawn from the 2010 LIVESTRONG national survey. The final sample included 207 sexual minority and 4,899 heterosexual cancer survivors. Satisfaction with care was compared by sexual orientation and a Poisson regression model was computed to test the associations between sexual orientation and satisfaction with care, controlling for other relevant variables. Results Sexual minority cancer survivors had lower satisfaction with care than heterosexual cancer survivors (B=−0.12, SE=0.04, Wald χ2=9.25, p<0.002), even controlling for demographic and clinical variables associated with care. Conclusions Sexual minorities experience poorer satisfaction with care compared to heterosexual cancer survivors. Clinical Implications: Satisfaction with care is especially relevant to cancer survivorship in light of the cancer-related health disparities reported among sexual minority cancer survivors. PMID:26577277

  16. Contribution of the neighborhood environment and obesity to breast cancer survival: the California Breast Cancer Survivorship Consortium.

    PubMed

    Cheng, Iona; Shariff-Marco, Salma; Koo, Jocelyn; Monroe, Kristine R; Yang, Juan; John, Esther M; Kurian, Allison W; Kwan, Marilyn L; Henderson, Brian E; Bernstein, Leslie; Lu, Yani; Sposto, Richard; Vigen, Cheryl; Wu, Anna H; Gomez, Scarlett Lin; Keegan, Theresa H M

    2015-08-01

    Little is known about neighborhood attributes that may influence opportunities for healthy eating and physical activity in relation to breast cancer mortality. We used data from the California Breast Cancer Survivorship Consortium and the California Neighborhoods Data System (CNDS) to examine the neighborhood environment, body mass index, and mortality after breast cancer. We studied 8,995 African American, Asian American, Latina, and non-Latina white women with breast cancer. Residential addresses were linked to the CNDS to characterize neighborhoods. We used multinomial logistic regression to evaluate the associations between neighborhood factors and obesity and Cox proportional hazards regression to examine associations between neighborhood factors and mortality. For Latinas, obesity was associated with more neighborhood crowding [quartile 4 (Q4) vs. Q1: OR, 3.24; 95% confidence interval (CI), 1.50-7.00]; breast cancer-specific mortality was inversely associated with neighborhood businesses (Q4 vs. Q1: HR, 0.46; 95% CI, 0.25-0.85) and positively associated with multifamily housing (Q3 vs. Q1: HR, 1.98; 95% CI, 1.20-3.26). For non-Latina whites, lower neighborhood socioeconomic status (SES) was associated with obesity [quintile 1 (Q1) vs. Q5: OR, 2.52; 95% CI, 1.31-4.84], breast cancer-specific (Q1 vs. Q5: HR, 2.75; 95% CI, 1.47-5.12), and all-cause (Q1 vs. Q5: HR, 1.75; 95% CI, 1.17-2.62) mortality. For Asian Americans, no associations were seen. For African Americans, lower neighborhood SES was associated with lower mortality in a nonlinear fashion. Attributes of the neighborhood environment were associated with obesity and mortality following breast cancer diagnosis, but these associations differed across racial/ethnic groups. ©2015 American Association for Cancer Research.

  17. "You're too young for this": adolescent and young adults' perspectives on cancer survivorship.

    PubMed

    Kent, Erin E; Parry, Carla; Montoya, Michael J; Sender, Leonard S; Morris, Rebecca A; Anton-Culver, Hoda

    2012-01-01

    Adolescent and young adult cancer survivors face unique challenges not systematically addressed by cancer clinicians. Four focus groups and two individual interviews were conducted with 19 survivors to profile experiences and identify key concerns for future interventions. The resultant themes reflect cancer care continuum challenges (such as delays in diagnosis, problems with adherence), psychosocial concerns (such as infertility and reproductive concerns, changing social relationships, financial burden), and the paradox of being diagnosed with cancer as a young adult. Future intervention development for adolescent and young adult survivors should involve patient voices at each stage of the research process.

  18. “You’re too young for this”: Adolescent and Young Adults’ Perspectives on Cancer Survivorship

    PubMed Central

    KENT, ERIN E.; PARRY, CARLA; MONTOYA, MICHAEL J.; SENDER, LEONARD S.; MORRIS, REBECCA A.; ANTON-CULVER, HODA

    2015-01-01

    Adolescent and young adult cancer survivors face unique challenges not systematically addressed by cancer clinicians. Four focus groups and two individual interviews were conducted with 19 survivors to profile experiences and identify key concerns for future interventions. The resultant themes reflect cancer care continuum challenges (such as delays in diagnosis, problems with adherence), psychosocial concerns (such as infertility and reproductive concerns, changing social relationships, financial burden), and the paradox of being diagnosed with cancer as a young adult. Future intervention development for adolescent and young adult survivors should involve patient voices at each stage of the research process. PMID:22416959

  19. Contribution of the Neighborhood Environment and Obesity to Breast Cancer Survival: The California Breast Cancer Survivorship Consortium

    PubMed Central

    Cheng, Iona; Shariff-Marco, Salma; Koo, Jocelyn; Monroe, Kristine R.; Yang, Juan; John, Esther M.; Kurian, Allison W.; Kwan, Marilyn L.; Henderson, Brian E.; Bernstein, Leslie; Lu, Yani; Sposto, Richard; Vigen, Cheryl; Wu, Anna H.; Gomez, Scarlett Lin; Keegan, Theresa H.M.

    2015-01-01

    Little is known about neighborhood attributes that may influence opportunities for healthy eating and physical activity in relation to breast cancer mortality. We used data from the California Breast Cancer Survivorship Consortium and the California Neighborhoods Data System to examine the neighborhood environment, body mass index, and mortality after breast cancer. We studied 8,995 African American, Asian American, Latina, and non-Latina White women with breast cancer. Residential addresses were linked to the CNDS to characterize neighborhoods. We used multinomial logistic regression to evaluate the associations between neighborhood factors and obesity, and Cox proportional hazards regression to examine associations between neighborhood factors and mortality. For Latinas, obesity was associated with more neighborhood crowding (Quartile 4 (Q4) vs. Q1: Odds Ratio (OR)=3.24; 95% Confidence Interval (CI): 1.50-7.00); breast cancer-specific mortality was inversely associated with neighborhood businesses (Q4 vs. Q1: Hazard Ratio (HR)=0.46; 95% CI: 0.25-0.85) and positively associated with multi-family housing (Q3 vs. Q1: HR=1.98; 95% CI: 1.20-3.26). For non-Latina Whites, lower neighborhood socioeconomic status (SES) was associated with obesity (Quintile 1 (Q1) vs. Q5: OR=2.52; 95% CI: 1.31-4.84), breast cancer-specific (Q1 vs. Q5: HR=2.75; 95% CI: 1.47-5.12), and all-cause (Q1 vs. Q5: HR=1.75; 95% CI: 1.17-2.62) mortality. For Asian Americans, no associations were seen. For African Americans, lower neighborhood SES was associated with lower mortality in a nonlinear fashion. Attributes of the neighborhood environment were associated with obesity and mortality following breast cancer diagnosis, but these associations differed across racial/ethnic groups. PMID:26063477

  20. A pilot trial of brief group cognitive-behavioral treatment for insomnia in an adult cancer survivorship program.

    PubMed

    Zhou, Eric S; Partridge, Ann H; Recklitis, Christopher J

    2017-06-01

    Cognitive-behavioral therapy for insomnia (CBT-Insomnia) is effective, yet rarely available for cancer survivors. This is unfortunate because survivors are at elevated risk for insomnia, which is associated with significant health consequences in this already at-risk population. Barriers to delivering CBT-Insomnia in oncology settings include a lack of trained providers, distance to cancer centers, and treatment duration. To address insomnia treatment barriers, we adapted standard CBT-Insomnia treatment and evaluated a pilot group-based approach for feasibility and efficacy in an adult cancer survivorship program. Thirty-eight cancer survivors (mean age = 52.2 years) enrolled in our three-session program delivered over 1 month. They were primarily diagnosed with breast cancer (58.6%) and were an average of 6.0 years post-diagnosis and 3.6 years post-treatment. Participants completed sleep logs throughout the study and measures of sleep at baseline and week 4. Participants reported experiencing insomnia symptoms an average of 2.4 years, with 89.7% indicating that the cancer experience had caused/exacerbated symptoms. Significant pre/post-intervention group improvements in sleep efficiency (77.3% to 88.5%), sleep quality, and insomnia symptoms were reported (all ps < .01). Less than 1 in 3 had discussed insomnia symptoms with their oncology providers in the prior year. Pilot data indicate that a brief, group-based CBT-Insomnia intervention in a survivorship setting is both feasible and efficacious. There is a need to increase awareness about insomnia and its treatment among both cancer survivors and oncology providers. If validated in future studies, this novel approach can improve cancer survivors' access to much needed insomnia treatment. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

  1. Economic evaluation alongside a clinical trial of psycho-educational interventions to improve adjustment to survivorship among patients with breast cancer.

    PubMed

    Mandelblatt, Jeanne S; Cullen, Jennifer; Lawrence, William F; Stanton, Annette L; Yi, Bin; Kwan, Lorna; Ganz, Patricia A

    2008-04-01

    There is little economic research on psychosocial interventions. We aimed to collect data alongside a randomized trial to compare the costs and benefits of three psycho-educational strategies to improve transition to cancer survivorship. We evaluated the incremental delivery costs per unit increase in energy (using the Medical Outcomes Study vitality scale) or decrease in distress (from the Revised Impact of Events Scale) in the 6 months postintervention. We also evaluated 1-year post-treatment health care costs. The costs of the control, video, and video plus counseling arms were $11.30, $25.85, and $134.47 per person, respectively. The video costs were $2.22 per unit increase in energy compared with control; among women who were the least prepared for transition, the video was more effective, resulting in even lower costs. The video cost $7,275 per unit change in distress versus control, but costs were lower in the subgroup least prepared for transition ($355). The counseling arm was more expensive and less effective than the video for virtually all end points. However, in one group, women more prepared for transition, counseling cost $1,066 per unit decrease in distress compared with the video. Health care costs tended to increase as intervention intensity increased. There are no standards for evaluating cost-effectiveness of trials with psychosocial end points. In this trial, the educational video was the most cost-effective way to improve transition to survivorship. It will be important to confirm whether there is an increased use of services after such interventions and if this represents appropriate use of rehabilitative and supportive care or over-use.

  2. Lifestyle Factors in Cancer Survivorship: Where We Are and Where We Are Headed

    PubMed Central

    Vijayvergia, Namrata; Denlinger, Crystal S.

    2015-01-01

    Advances in early detection and curative therapies have led to an increased number of cancer survivors over the last twenty years. With this population comes the need to evaluate the late and long term effects of cancer treatment and develop recommendations about how to optimally care for these survivors. Lifestyle factors (diet, body weight, physical activity, and smoking) have been linked to a higher risk of many medical comorbidities (cardiovascular, metabolic, etc.). There is increasing evidence linking these factors to the risk of developing cancer and likely cancer-related outcomes. This link has been studied extensively in common cancers like breast, colon, prostate, and lung cancers through observational studies and is now being prospectively evaluated in interventional studies. Realizing that survivors are highly motivated to improve their overall health after a diagnosis of cancer, healthy lifestyle recommendations from oncology providers can serve as a strong tool to motivate survivors to adopt health behavior changes. Our article aims to review the evidence that links lifestyle factors to cancer outcomes and provides clinical recommendations for cancer survivors. PMID:26147495

  3. Cervical cancer survivorship: Long-term quality of life and social support

    PubMed Central

    Pfaendler, Krista S.; Wenzel, Lari; Mechanic, Mindy B.; Penner, Kristine R.

    2015-01-01

    Purpose Surgery, radiotherapy and chemotherapy are the mainstays of cervical cancer treatment. Many patients receive multiple treatment modalities, each with its own long-term effects. Given the high 5 year survival rate for cervical cancer patients, evaluation and improvement of long-term quality of life are essential. Methods Pertinent articles were identified through searches of PubMed for literature published from 1993-2014. We summarize quality of life data from long-term follow up studies of cervical cancer patients. We additionally summarize small group interviews of Hispanic and non-Hispanic cervical cancer survivors regarding social support and coping. Findings Data is varied in terms of the long term impact of treatment on quality of life but consistent in suggesting that patients who receive radiotherapy as part of their treatment have the highest risk of increased long term dysfunction of bladder and bowel, as well as sexual dysfunction and psychosocial consequences. Rigorous investigations regarding long-term consequences of treatment modalities are lacking. Implications Continued work to improve treatment outcomes and survival should also include a focus on reducing adverse long-term side effects. Providing supportive care during treatment, and evaluating the effects of supportive care, may reduce the prevalence and magnitude of long-term sequelae of cervical cancer, which will in turn improve quality of life and quality of care. PMID:25592090

  4. Cancer Patient Navigator Tasks across the Cancer Care Continuum

    PubMed Central

    Braun, Kathryn L.; Kagawa-Singer, Marjorie; Holden, Alan E. C.; Burhansstipanov, Linda; Tran, Jacqueline H.; Seals, Brenda F.; Corbie-Smith, Giselle; Tsark, JoAnn U.; Harjo, Lisa; Foo, Mary Anne; Ramirez, Amelie G.

    2011-01-01

    Cancer patient navigation (PN) programs have been shown to increase access to and utilization of cancer care for poor and underserved individuals. Despite mounting evidence of its value, cancer patient navigation is not universally understood or provided. We describe five PN programs and the range of tasks their navigators provide across the cancer care continuum (education and outreach, screening, diagnosis and staging, treatment, survivorship, and end-of-life). Tasks are organized by their potential to make cancer services understandable, available, accessible, affordable, appropriate, and accountable. Although navigators perform similar tasks across the five programs, their specific approaches reflect differences in community culture, context, program setting, and funding. Task lists can inform the development of programs, job descriptions, training, and evaluation. They also may be useful in the move to certify navigators and establish mechanisms for reimbursement for navigation services. PMID:22423178

  5. Cancer Survivorship: Defining the Incidence of Incisional Hernia After Resection for Intra-Abdominal Malignancy.

    PubMed

    Baucom, Rebeccah B; Ousley, Jenny; Beveridge, Gloria B; Phillips, Sharon E; Pierce, Richard A; Holzman, Michael D; Sharp, Kenneth W; Nealon, William H; Poulose, Benjamin K

    2016-12-01

    Cancer survivorship focuses largely on improving quality of life. We aimed to determine the rate of ventral incisional hernia (VIH) formation after cancer resection, with implications for survivorship. Patients without prior VIH who underwent abdominal malignancy resections at a tertiary center were followed up to 2 years. Patients with a viewable preoperative computed tomography (CT) scan and CT within 2 years postoperatively were included. Primary outcome was postoperative VIH on CT, reviewed by a panel of surgeons uninvolved with the original operation. Factors associated with VIH were determined using Cox proportional hazards regression. 1847 CTs were reviewed among 491 patients (59 % men), with inter-rater reliability 0.85 for the panel. Mean age was 60 ± 12 years; mean follow-up time 13 ± 8 months. VIH occurred in 41 % and differed across diagnoses: urologic/gynecologic (30 %), colorectal (53 %), and all others (56 %) (p < 0.001). Factors associated with VIH (adjusting for stage, age, adjuvant therapy, smoking, and steroid use) included: incision location [flank (ref), midline, hazard ratio (HR) 6.89 (95 %CI 2.43-19.57); periumbilical, HR 6.24 (95 %CI 1.84-21.22); subcostal, HR 4.55 (95 %CI 1.51-13.70)], cancer type [urologic/gynecologic (ref), other {gastrointestinal, pancreatic, hepatobiliary, retroperitoneal, and others} HR 1.86 (95 %CI 1.26-2.73)], laparoscopic-assisted operation [laparoscopic (ref), HR 2.68 (95 %CI 1.44-4.98)], surgical site infection [HR 1.60 (95 %CI 1.08-2.37)], and body mass index [HR 1.06 (95 %CI 1.03-1.08)]. The rate of VIH after abdominal cancer operations is high. VIH may impact cancer survivorship with pain and need for additional operations. Further studies assessing the impact on QOL and prevention efforts are needed.

  6. Quality of Life and Survivorship Care in Patients Undergoing Hyperthermic Intraperitoneal Chemotherapy (HIPEC)

    ClinicalTrials.gov

    2017-01-17

    Advanced Malignant Mesothelioma; Carcinoma of the Appendix; Ovarian Sarcoma; Ovarian Stromal Cancer; Pseudomyxoma Peritonei; Recurrent Colon Cancer; Recurrent Malignant Mesothelioma; Recurrent Ovarian Epithelial Cancer; Recurrent Ovarian Germ Cell Tumor; Stage III Colon Cancer; Stage III Ovarian Epithelial Cancer; Stage III Ovarian Germ Cell Tumor; Stage IV Colon Cancer; Stage IV Ovarian Epithelial Cancer; Stage IV Ovarian Germ Cell Tumor; Unspecified Childhood Solid Tumor, Protocol Specific

  7. Obesity and mortality after breast cancer by race/ethnicity: The California Breast Cancer Survivorship Consortium.

    PubMed

    Kwan, Marilyn L; John, Esther M; Caan, Bette J; Lee, Valerie S; Bernstein, Leslie; Cheng, Iona; Gomez, Scarlett Lin; Henderson, Brian E; Keegan, Theresa H M; Kurian, Allison W; Lu, Yani; Monroe, Kristine R; Roh, Janise M; Shariff-Marco, Salma; Sposto, Richard; Vigen, Cheryl; Wu, Anna H

    2014-01-01

    We investigated body size and survival by race/ethnicity in 11,351 breast cancer patients diagnosed from 1993 to 2007 with follow-up through 2009 by using data from questionnaires and the California Cancer Registry. We calculated hazard ratios and 95% confidence intervals from multivariable Cox proportional hazard model-estimated associations of body size (body mass index (BMI) (weight (kg)/height (m)(2)) and waist-hip ratio (WHR)) with breast cancer-specific and all-cause mortality. Among 2,744 ascertained deaths, 1,445 were related to breast cancer. Being underweight (BMI <18.5) was associated with increased risk of breast cancer mortality compared with being normal weight in non-Latina whites (hazard ratio (HR) = 1.91, 95% confidence interval (CI): 1.14, 3.20), whereas morbid obesity (BMI ≥ 40) was suggestive of increased risk (HR = 1.43, 95% CI: 0.84, 2.43). In Latinas, only the morbidly obese were at high risk of death (HR = 2.26, 95% CI: 1.23, 4.15). No BMI-mortality associations were apparent in African Americans and Asian Americans. High WHR (quartile 4 vs. quartile 1) was associated with breast cancer mortality in Asian Americans (HR = 2.21, 95% CI: 1.21, 4.03; P for trend = 0.01), whereas no associations were found in African Americans, Latinas, or non-Latina whites. For all-cause mortality, even stronger BMI and WHR associations were observed. The impact of obesity and body fat distribution on breast cancer patients' risk of death may vary across racial/ethnic groups.

  8. Obesity and Mortality After Breast Cancer by Race/Ethnicity: The California Breast Cancer Survivorship Consortium

    PubMed Central

    Kwan, Marilyn L.; John, Esther M.; Caan, Bette J.; Lee, Valerie S.; Bernstein, Leslie; Cheng, Iona; Gomez, Scarlett Lin; Henderson, Brian E.; Keegan, Theresa H.M.; Kurian, Allison W.; Lu, Yani; Monroe, Kristine R.; Roh, Janise M.; Shariff-Marco, Salma; Sposto, Richard; Vigen, Cheryl; Wu, Anna H.

    2014-01-01

    We investigated body size and survival by race/ethnicity in 11,351 breast cancer patients diagnosed from 1993 to 2007 with follow-up through 2009 by using data from questionnaires and the California Cancer Registry. We calculated hazard ratios and 95% confidence intervals from multivariable Cox proportional hazard model–estimated associations of body size (body mass index (BMI) (weight (kg)/height (m)2) and waist-hip ratio (WHR)) with breast cancer–specific and all-cause mortality. Among 2,744 ascertained deaths, 1,445 were related to breast cancer. Being underweight (BMI <18.5) was associated with increased risk of breast cancer mortality compared with being normal weight in non-Latina whites (hazard ratio (HR) = 1.91, 95% confidence interval (CI): 1.14, 3.20), whereas morbid obesity (BMI ≥40) was suggestive of increased risk (HR = 1.43, 95% CI: 0.84, 2.43). In Latinas, only the morbidly obese were at high risk of death (HR = 2.26, 95% CI: 1.23, 4.15). No BMI–mortality associations were apparent in African Americans and Asian Americans. High WHR (quartile 4 vs. quartile 1) was associated with breast cancer mortality in Asian Americans (HR = 2.21, 95% CI: 1.21, 4.03; P for trend = 0.01), whereas no associations were found in African Americans, Latinas, or non-Latina whites. For all-cause mortality, even stronger BMI and WHR associations were observed. The impact of obesity and body fat distribution on breast cancer patients' risk of death may vary across racial/ethnic groups. PMID:24107615

  9. Prostate cancer survivorship: a review of erectile dysfunction and penile rehabilitation after prostate cancer therapy.

    PubMed

    Chung, Eric; Gillman, Michael

    2014-06-02

    Prostate cancer diagnosis and treatment adversely affect quality of life for most men. The true incidence of erectile dysfunction (ED) after prostate cancer therapy is unknown, and the rates of ED in radical prostatectomy (RP) and radiation groups are similar, although the onset of ED is often later in patients treated with radiation therapy. Proposed pathophysiological mechanisms of ED include neurovascular injury, local inflammatory changes, damage to nearby supporting structures, cavernosal smooth muscle hypoxia with ensuing smooth muscle apoptosis and fibrosis, and corporal veno-occlusive dysfunction causing venous leakage. Penile rehabilitation aims to help men regain the ability to achieve erections sufficient for satisfactory sexual intercourse during rehabilitation from prostate cancer treatment, and ultimately to return to pretreatment erectile function. While there is no consensus on the ideal rehabilitation regimen, many sexual health experts agree that treatment should start as soon as possible to protect and/or prevent corporal endothelial and smooth muscle damage. Current management strategies for erectile function rehabilitation predominantly relate to patients who have had RP. Phosphodiesterase type 5 inhibitors, intracavernosal injection of vasoactive agents and vacuum erection devices are options which can be used in a rehabilitation program. Penile implants should be considered if patients do not respond to medical therapies. To facilitate informed decision making, patients should be presented with all treatment options, and told that rehabilitation and treatment for ED as early as possible after prostate cancer therapy will result in faster and better recovery of erectile function and preserve sexual continuity.

  10. Quality of cancer follow-up care: a focus on Latina breast cancer survivors

    PubMed Central

    Ashing, Kimlin; Napoles, Anna

    2014-01-01

    Introduction Receiving quality cancer follow-up care influences survivorship outcomes. Among Latinas, breast cancer is the number one cause of cancer death; yet Latinas do not receive adequate follow-up care. This study examined quality of cancer follow-up care among Latina breast cancer survivors (BCS) and whether it differs by participant language and healthcare system variables (provider specialty, and medical setting). Methods Two hundred thirty-two (95 English-speaking Latina and 137 Spanish-speaking) Latina BCS were recruited from the California Cancer Registry, hospital cancer registries, and community agencies. Results English-speaking Latina BCS were more likely to report receiving cancer follow-up care at a doctor’s office (p<0.001). BCS without a regular place for cancer follow-up care were more likely to report not seeing a primary care provider (p<0.05) or cancer specialist (p<0.001) in the past 12 months. English-speaking Latina BCS (p<0.001), BCS who saw a cancer specialist in the past 12 months (p<0.001), and received follow-up care at a doctor’s office (p<0.05) reported higher quality of care. Speaking English, having seen a cancer specialist, and receiving follow-up care at a doctor’s office were independently associated with higher quality of care, explaining 44 % of the variance. Conclusions Our study findings suggest that examining the influence of ethnic and linguistic factors on quality of cancer follow-up care is necessary to address health disparities. Improved access to cancer follow-up care for Spanish-speaking Latina BCS is of particular concern. Implication of Cancer Survivors Identifying follow-up care needs of Latina BCS may contribute to providing high-quality care and improved survivorship outcomes. PMID:24563169

  11. Apps Seeking Theories: Results of a Study on the Use of Health Behavior Change Theories in Cancer Survivorship Mobile Apps

    PubMed Central

    Fair, Kayla; Hong, Y Alicia; Beaudoin, Christopher E; Pulczinski, Jairus; Ory, Marcia G

    2015-01-01

    Background Thousands of mobile health apps are now available for use on mobile phones for a variety of uses and conditions, including cancer survivorship. Many of these apps appear to deliver health behavior interventions but may fail to consider design considerations based in human computer interface and health behavior change theories. Objective This study is designed to assess the presence of and manner in which health behavior change and health communication theories are applied in mobile phone cancer survivorship apps. Methods The research team selected a set of criteria-based health apps for mobile phones and assessed each app using qualitative coding methods to assess the application of health behavior change and communication theories. Each app was assessed using a coding derived from the taxonomy of 26 health behavior change techniques by Abraham and Michie with a few important changes based on the characteristics of mHealth apps that are specific to information processing and human computer interaction such as control theory and feedback systems. Results A total of 68 mobile phone apps and games built on the iOS and Android platforms were coded, with 65 being unique. Using a Cohen’s kappa analysis statistic, the inter-rater reliability for the iOS apps was 86.1 (P<.001) and for the Android apps, 77.4 (P<.001). For the most part, the scores for inclusion of theory-based health behavior change characteristics in the iOS platform cancer survivorship apps were consistently higher than those of the Android platform apps. For personalization and tailoring, 67% of the iOS apps (24/36) had these elements as compared to 38% of the Android apps (12/32). In the area of prompting for intention formation, 67% of the iOS apps (34/36) indicated these elements as compared to 16% (5/32) of the Android apps. Conclusions Mobile apps are rapidly emerging as a way to deliver health behavior change interventions that can be tailored or personalized for individuals. As these

  12. Apps seeking theories: results of a study on the use of health behavior change theories in cancer survivorship mobile apps.

    PubMed

    Vollmer Dahlke, Deborah; Fair, Kayla; Hong, Y Alicia; Beaudoin, Christopher E; Pulczinski, Jairus; Ory, Marcia G

    2015-03-27

    Thousands of mobile health apps are now available for use on mobile phones for a variety of uses and conditions, including cancer survivorship. Many of these apps appear to deliver health behavior interventions but may fail to consider design considerations based in human computer interface and health behavior change theories. This study is designed to assess the presence of and manner in which health behavior change and health communication theories are applied in mobile phone cancer survivorship apps. The research team selected a set of criteria-based health apps for mobile phones and assessed each app using qualitative coding methods to assess the application of health behavior change and communication theories. Each app was assessed using a coding derived from the taxonomy of 26 health behavior change techniques by Abraham and Michie with a few important changes based on the characteristics of mHealth apps that are specific to information processing and human computer interaction such as control theory and feedback systems. A total of 68 mobile phone apps and games built on the iOS and Android platforms were coded, with 65 being unique. Using a Cohen's kappa analysis statistic, the inter-rater reliability for the iOS apps was 86.1 (P<.001) and for the Android apps, 77.4 (P<.001). For the most part, the scores for inclusion of theory-based health behavior change characteristics in the iOS platform cancer survivorship apps were consistently higher than those of the Android platform apps. For personalization and tailoring, 67% of the iOS apps (24/36) had these elements as compared to 38% of the Android apps (12/32). In the area of prompting for intention formation, 67% of the iOS apps (34/36) indicated these elements as compared to 16% (5/32) of the Android apps. Mobile apps are rapidly emerging as a way to deliver health behavior change interventions that can be tailored or personalized for individuals. As these apps and games continue to evolve and include

  13. Maintaining success, reducing treatment burden, focusing on survivorship: highlights from the third European consensus conference on diagnosis and treatment of germ-cell cancer.

    PubMed

    Beyer, J; Albers, P; Altena, R; Aparicio, J; Bokemeyer, C; Busch, J; Cathomas, R; Cavallin-Stahl, E; Clarke, N W; Claßen, J; Cohn-Cedermark, G; Dahl, A A; Daugaard, G; De Giorgi, U; De Santis, M; De Wit, M; De Wit, R; Dieckmann, K P; Fenner, M; Fizazi, K; Flechon, A; Fossa, S D; Germá Lluch, J R; Gietema, J A; Gillessen, S; Giwercman, A; Hartmann, J T; Heidenreich, A; Hentrich, M; Honecker, F; Horwich, A; Huddart, R A; Kliesch, S; Kollmannsberger, C; Krege, S; Laguna, M P; Looijenga, L H J; Lorch, A; Lotz, J P; Mayer, F; Necchi, A; Nicolai, N; Nuver, J; Oechsle, K; Oldenburg, J; Oosterhuis, J W; Powles, T; Rajpert-De Meyts, E; Rick, O; Rosti, G; Salvioni, R; Schrader, M; Schweyer, S; Sedlmayer, F; Sohaib, A; Souchon, R; Tandstad, T; Winter, C; Wittekind, C

    2013-04-01

    In November 2011, the Third European Consensus Conference on Diagnosis and Treatment of Germ-Cell Cancer (GCC) was held in Berlin, Germany. This third conference followed similar meetings in 2003 (Essen, Germany) and 2006 (Amsterdam, The Netherlands) [Schmoll H-J, Souchon R, Krege S et al. European consensus on diagnosis and treatment of germ-cell cancer: a report of the European Germ-Cell Cancer Consensus Group (EGCCCG). Ann Oncol 2004; 15: 1377-1399; Krege S, Beyer J, Souchon R et al. European consensus conference on diagnosis and treatment of germ-cell cancer: a report of the second meeting of the European Germ-Cell Cancer Consensus group (EGCCCG): part I. Eur Urol 2008; 53: 478-496; Krege S, Beyer J, Souchon R et al. European consensus conference on diagnosis and treatment of germ-cell cancer: a report of the second meeting of the European Germ-Cell Cancer Consensus group (EGCCCG): part II. Eur Urol 2008; 53: 497-513]. A panel of 56 of 60 invited GCC experts from all across Europe discussed all aspects on diagnosis and treatment of GCC, with a particular focus on acute and late toxic effects as well as on survivorship issues. The panel consisted of oncologists, urologic surgeons, radiooncologists, pathologists and basic scientists, who are all actively involved in care of GCC patients. Panelists were chosen based on the publication activity in recent years. Before the meeting, panelists were asked to review the literature published since 2006 in 20 major areas concerning all aspects of diagnosis, treatment and follow-up of GCC patients, and to prepare an updated version of the previous recommendations to be discussed at the conference. In addition, ∼50 E-vote questions were drafted and presented at the conference to address the most controversial areas for a poll of expert opinions. Here, we present the main recommendations and controversies of this meeting. The votes of the panelists are added as online supplements.

  14. An innovative path to improving cancer care in Indian country.

    PubMed Central

    Burhansstipanov, L.; Gilbert, A.; LaMarca, K.; Krebs, L. U.

    2001-01-01

    The Native American Cancer Survivors' Support Network is an innovative public health program designed to improve survival from cancer and the quality of life after a cancer diagnosis for American Indians, Alaska Natives, and Canadian Aboriginal patients and their loved ones. The Network, initiated in 1999, now has more than 300 survivors enrolled as members. This article briefly describes the process that led to its formation and preliminary findings, primarily for breast cancer survivors, of ongoing qualitative and quantitative research. Network data show patterns of cancer care that are partially responsible for poor survivorship outcomes. PMID:12042607

  15. Survivorship clinic group educational sessions: adoption, acceptance, and attendance.

    PubMed

    Wheelock, Alyse; Mihalis, Eva; Hamolsky, Debby; Ernest, Mary Lou; Lopez, Nancy Shepard; Hwang, Jimmy; Melisko, Michelle

    2013-03-01

    The number of breast cancer survivors now exceeds 2.5 million in the USA. In the near future, it is likely that existing systems will not be sufficient to provide follow-up care and services for all these patients. Because survivors have many concerns in common and providers may not have enough time to address them individually, group educational sessions (GES) provide an opportunity to inform patients of current breast cancer-related health issues, treatment updates, and follow-up guidelines in an efficient and structured environment. At the University of California San Francisco Breast Care Center, we implemented a GES for patients referred into the Survivorship Clinic. To improve content and convenience, patients were asked at the end of each session to complete a survey measuring their satisfaction with the GES. Clinic staff tracked GES attendance, reasons for declining participation in the GES, and utilization of the Survivorship Clinic for follow-up care. Of the 381 patients referred to the Survivorship Clinic, 177 patients have attended the GES, and 204 ultimately have not attended the GES. Eighty four of the 177 patients who attended completed a survey at the end of the GES. Ninety-five percent of these patients agreed or somewhat agreed that the information presented was clear and understandable. Eighty-five percent of patients agreed or somewhat agreed that they learned about resources for recovery. Utilization of follow-up appointments within the Survivorship Clinic was significantly higher among those who attended the GES compared to those who did not attend. Overall, the GES allows for efficient patient education, and evaluation of the GES leads to new innovations to improve survivorship care.

  16. Psychosocial needs of patients with cancer in the primary care setting.

    PubMed

    Baum, L D

    2000-01-01

    The diagnosis of cancer exacts an emotional toll on patients and their family members, necessitating attention to psychosocial factors by primary care providers. This article describes the usual course of emotional reactions to cancer, high-risk times for emotional vulnerability, and the role of the primary care provider in assessment, treatment, and referral. Additionally, the unique challenges of cancer survivorship are described, along with resources for patients seeking additional information about medical and psychosocial issues.

  17. 'Swimming against the tide'--the influence of fertility matters on the transition to adulthood or survivorship following adolescent cancer.

    PubMed

    Crawshaw, M A; Sloper, P

    2010-09-01

    Psychosocial research into cancer-related fertility has concentrated on fertility preservation or adult survivors' concerns. This study reports on its hitherto unreported impact over the time from diagnosis to survivorship. Thirty-eight men and women aged<30, diagnosed as teens, were recruited to an exploratory qualitative study. Analysis used the constant comparison method, considered conceptually within a lifespan approach. Four key experiences of managing fertility matters influenced, or were influenced by, the aftermath of cancer treatment: (1) prioritising 'normality' and marginalising fertility; (2) fertility concerns compromising 'normality'; (3) ongoing impairments/health concerns mediating fertility matters; (4) fertility concerns dominating the cancer legacy. Professional and social networks provided few opportunities to ask questions, receive information, process feelings or develop handling strategies. Beliefs about the extent of fertility damage did not necessarily relate to information received. For some, fertility matters affected identity, well-being and life planning as well as reproductive function. This was not restricted to particular ages, life stages, gender or time since treatment ended and was heightened by associated stigma and silence. Opportunities for dialogue should be offered regularly across health and social work disciplines given fertility's psychological and social as well as medical significance.

  18. Interventions to Improve the Quality of Life and Survivorship of Older Adults with Cancer: The Funding Landscape at NIH, ACS and PCORI

    PubMed Central

    Flannery, Marie; Mohile, Supriya Gupta; Dale, William; Arora, Neeraj K.; Azar, Lauren; Breslau, Erica S.; Cohen, Harvey Jay; Dotan, Efrat; Eldadah, Basil A.; Leach, Corinne R.; Mitchell, Sandra A.; Rowland, Julia H.; Hurria, Arti

    2016-01-01

    Identifying knowledge gaps and research opportunities in cancer and aging research was the focus of a three-part conference series led by the Cancer and Aging Research Group from 2010 to 2015. The third meeting, featured representatives from the NIA, NCI, ACS and PCORI each of whom discussed research priorities and funding opportunities in cancer and aging at their respective agencies. This manuscript reports on the proceedings of that conference with a specific focus on funding priorities for interventions to improve the quality of life and survivorship of older adults with cancer. Helpful tips from each funder regarding writing a good research proposal are presented. PMID:27197917

  19. Risk Factors for Decreased Quality of Life in Thyroid Cancer Survivors: Initial Findings from the North American Thyroid Cancer Survivorship Study

    PubMed Central

    James, Benjamin; Nagar, Sapna; Kaplan, Sharone; Seng, Vanessa; Ahsan, Habibul; Angelos, Peter; Kaplan, Edwin L.; Guerrero, Marlon A.; Kuo, Jennifer H.; Lee, James A.; Mitmaker, Elliot J.; Moalem, Jacob; Ruan, Daniel T.; Shen, Wen T.; Grogan, Raymon H.

    2015-01-01

    Background: The prevalence of thyroid cancer survivors is rising rapidly due to the combination of an increasing incidence, high survival rates, and a young age at diagnosis. The physical and psychosocial morbidity of thyroid cancer has not been adequately described, and this study therefore sought to improve the understanding of the impact of thyroid cancer on quality of life (QoL) by conducting a large-scale survivorship study. Methods: Thyroid cancer survivors were recruited from a multicenter collaborative network of clinics, national survivorship groups, and social media. Study participants completed a validated QoL assessment tool that measures four morbidity domains: physical, psychological, social, and spiritual effects. Data were also collected on participant demographics, medical comorbidities, tumor characteristics, and treatment modalities. Results: A total of 1174 participants with thyroid cancer were recruited. Of these, 89.9% were female, with an average age of 48 years, and a mean time from diagnosis of five years. The mean overall QoL was 5.56/10, with 0 being the worst. Scores for each of the sub-domains were 5.83 for physical, 5.03 for psychological, 6.48 for social, and 5.16 for spiritual well-being. QoL scores begin to improve five years after diagnosis. Female sex, young age at diagnosis, and lower educational attainment were highly predictive of decreased QoL. Conclusion: Thyroid cancer diagnosis and treatment can result in a decreased QoL. The present findings indicate that better tools to measure and improve thyroid cancer survivor QoL are needed. The authors plan to follow-up on these findings in the near future, as enrollment and data collection are ongoing. PMID:26431811

  20. Primary Care Physician Perceptions of Adult Survivors of Childhood Cancer

    PubMed Central

    Sima, Jody L.; Perkins, Susan M.; Haggstrom, David A.

    2015-01-01

    Increasing cure rates for childhood cancers have resulted in a population of adult childhood cancer survivors (CCS) that are at risk for late effects of cancer-directed therapy. Our objective was to identify facilitators and barriers to primary care physicians (PCPs) providing late effects screening and evaluate information tools PCPs perceive as useful. We analyzed surveys from 351 practicing internal medicine and family practice physicians nationwide. A minority of PCPs perceived that their medical training was adequate to recognize late effects of chemotherapy (27.6%), cancer surgery (36.6%), and radiation therapy (38.1%). Most PCPs (93%) had never used Children’s Oncology Group guidelines, but 86% would follow their recommendations. Most (84–86%) PCPs stated that they had never received a cancer treatment summary or survivorship care plan but (>90%) thought these documents would be useful. PCPs have a low level of awareness and receive inadequate training to recognize late effects. Overall, PCPs infrequently utilize guidelines, cancer treatment summaries, and survivorship care plans, although they perceive such tools as useful. We have identified gaps to address when providing care for CCS in routine general medical practice. PMID:24309612

  1. Primary care physician use across the breast cancer care continuum: CanIMPACT study using Canadian administrative data.

    PubMed

    Jiang, Li; Lofters, Aisha; Moineddin, Rahim; Decker, Kathleen; Groome, Patti; Kendell, Cynthia; Krzyzanowska, Monika; Li, Dongdong; McBride, Mary L; Mittmann, Nicole; Porter, Geoff; Turner, Donna; Urquhart, Robin; Winget, Marcy; Zhang, Yang; Grunfeld, Eva

    2016-10-01

    To describe primary care physician (PCP) use and continuity of PCP care across the breast cancer care continuum. Population-based, retrospective cohort study using provincial cancer registries linked to health administrative databases. British Columbia, Manitoba, and Ontario. All women with incident invasive breast cancer from 2007 to 2012 in Manitoba and Ontario and from 2007 to 2011 in British Columbia. The number and proportions of visits to PCPs were determined. Continuity of care was measured using the Usual Provider of Care index calculated as the proportion of visits to the most-often-visited PCP in the 6 to 30 months before a breast cancer diagnosis (baseline) and from 1 to 3 years following a breast cancer diagnosis (survivorship). More than three-quarters of patients visited their PCPs 2 or more times during the breast cancer diagnostic period, and more than 80% of patients had at least 1 PCP visit during breast cancer adjuvant treatment. Contact with the PCP decreased over time during breast cancer survivorship. Of the 3 phases, women appeared to be most likely to not have PCP contact during adjuvant treatment, with 10.7% (Ontario) to 18.7% (British Columbia) of women having no PCP visits during this phase. However, a sizable minority of women had at least monthly visits during the treatment phase, particularly in Manitoba and Ontario, where approximately a quarter of women saw a PCP at least monthly. We observed higher continuity of care with PCPs in survivorship (compared with baseline) in all provinces. Primary care physicians were generally involved throughout the breast cancer care continuum, but the level of involvement varied across care phases and by province. Future interventions will aim to further integrate primary and oncology care. Copyright© the College of Family Physicians of Canada.

  2. Maintaining success, reducing treatment burden, focusing on survivorship: highlights from the third European consensus conference on diagnosis and treatment of germ-cell cancer

    PubMed Central

    Beyer, J.; Albers, P.; Altena, R.; Aparicio, J.; Bokemeyer, C.; Busch, J.; Cathomas, R.; Cavallin-Stahl, E.; Clarke, N. W.; Claßen, J.; Cohn-Cedermark, G.; Dahl, A. A.; Daugaard, G.; De Giorgi, U.; De Santis, M.; De Wit, M.; De Wit, R.; Dieckmann, K. P.; Fenner, M.; Fizazi, K.; Flechon, A.; Fossa, S. D.; Germá Lluch, J. R.; Gietema, J. A.; Gillessen, S.; Giwercman, A.; Hartmann, J. T.; Heidenreich, A.; Hentrich, M.; Honecker, F.; Horwich, A.; Huddart, R. A.; Kliesch, S.; Kollmannsberger, C.; Krege, S.; Laguna, M. P.; Looijenga, L. H. J.; Lorch, A.; Lotz, J. P.; Mayer, F.; Necchi, A.; Nicolai, N.; Nuver, J.; Oechsle, K.; Oldenburg, J.; Oosterhuis, J. W.; Powles, T.; Rajpert-De Meyts, E.; Rick, O.; Rosti, G.; Salvioni, R.; Schrader, M.; Schweyer, S.; Sedlmayer, F.; Sohaib, A.; Souchon, R.; Tandstad, T.; Winter, C.; Wittekind, C.

    2013-01-01

    In November 2011, the Third European Consensus Conference on Diagnosis and Treatment of Germ-Cell Cancer (GCC) was held in Berlin, Germany. This third conference followed similar meetings in 2003 (Essen, Germany) and 2006 (Amsterdam, The Netherlands) [Schmoll H-J, Souchon R, Krege S et al. European consensus on diagnosis and treatment of germ-cell cancer: a report of the European Germ-Cell Cancer Consensus Group (EGCCCG). Ann Oncol 2004; 15: 1377–1399; Krege S, Beyer J, Souchon R et al. European consensus conference on diagnosis and treatment of germ-cell cancer: a report of the second meeting of the European Germ-Cell Cancer Consensus group (EGCCCG): part I. Eur Urol 2008; 53: 478–496; Krege S, Beyer J, Souchon R et al. European consensus conference on diagnosis and treatment of germ-cell cancer: a report of the second meeting of the European Germ-Cell Cancer Consensus group (EGCCCG): part II. Eur Urol 2008; 53: 497–513]. A panel of 56 of 60 invited GCC experts from all across Europe discussed all aspects on diagnosis and treatment of GCC, with a particular focus on acute and late toxic effects as well as on survivorship issues. The panel consisted of oncologists, urologic surgeons, radiooncologists, pathologists and basic scientists, who are all actively involved in care of GCC patients. Panelists were chosen based on the publication activity in recent years. Before the meeting, panelists were asked to review the literature published since 2006 in 20 major areas concerning all aspects of diagnosis, treatment and follow-up of GCC patients, and to prepare an updated version of the previous recommendations to be discussed at the conference. In addition, ∼50 E-vote questions were drafted and presented at the conference to address the most controversial areas for a poll of expert opinions. Here, we present the main recommendations and controversies of this meeting. The votes of the panelists are added as online supplements. PMID:23152360

  3. Impact of obesity on cancer survivorship and the potential relevance of race and ethnicity.

    PubMed

    Schmitz, Kathryn H; Neuhouser, Marian L; Agurs-Collins, Tanya; Zanetti, Krista A; Cadmus-Bertram, Lisa; Dean, Lorraine T; Drake, Bettina F

    2013-09-18

    Evidence that obesity is associated with cancer incidence and mortality is compelling. By contrast, the role of obesity in cancer survival is less well understood. There is inconsistent support for the role of obesity in breast cancer survival, and evidence for other tumor sites is scant. The variability in findings may be due in part to comorbidities associated with obesity itself rather than with cancer, but it is also possible that obesity creates a physiological setting that meaningfully alters cancer treatment efficacy. In addition, the effects of obesity at diagnosis may be distinct from the effects of weight change after diagnosis. Obesity and related comorbid conditions may also increase risk for common adverse treatment effects, including breast cancer-related lymphedema, fatigue, poor health-related quality of life, and worse functional health. Racial and ethnic groups with worse cancer survival outcomes are also the groups for whom obesity and related comorbidities are more prevalent, but findings from the few studies that have addressed these complexities are inconsistent. We outline a broad theoretical framework for future research to clarify the specifics of the biological-social-environmental feedback loop for the combined and independent contributions of race, comorbid conditions, and obesity on cancer survival and adverse treatment effects. If upstream issues related to comorbidities, race, and ethnicity partly explain the purported link between obesity and cancer survival outcomes, these factors should be among those on which interventions are focused to reduce the burden of cancer.

  4. Knowledge, ignorance and priorities for research in key areas of cancer survivorship: findings from a scoping review

    PubMed Central

    Richardson, A; Addington-Hall, J; Amir, Z; Foster, C; Stark, D; Armes, J; Brearley, S G; Hodges, L; Hook, J; Jarrett, N; Stamataki, Z; Scott, I; Walker, J; Ziegler, L; Sharpe, M

    2011-01-01

    Background: Patients who have completed initial cancer treatment (cancer survivors) have been relatively neglected. We need data to help us better understand the needs of this group and to underpin evidence-based service development. Methods: Scoping reviews of research published in the last two decades focussing on the problems faced by cancer survivors, and the effectiveness of interventions for these problems were undertaken. The aim was to identify what we know, what we do not know and opportunities where research could provide new information. We searched for, retrieved and rapidly appraised systematic reviews sourced from the most common electronic databases supplemented by more recently published individual studies. Results: The research evidence is surprisingly limited. We have some knowledge of the prevalence and nature of depression, pain and fatigue in cancer survivors. We know much less about cognitive and physical impairment, employment, financial well-being and relationships. Even where we have evidence, it is mostly of only moderate quality, is most often only for breast cancer and focuses almost exclusively on the early phase of survivorship. We have good evidence for the effectiveness of drug treatments for pain and moderate evidence for fatigue and depression, but not for other symptoms. Interventions based on rehabilitative and self-management approaches remain in the early stages of evaluation. Interpretation: There has been a substantial amount of research describing many of the problems experienced by the cancer survivors. This is strongest in the area of symptoms in the period soon after treatment. However, the quality of the evidence is often poor, and some topics have been little examined. We urgently need data on the natural evolution and scale of the problems of cancer survivors obtained from well-designed, large-scale cohort studies and the robust testing of interventions in clinical trials. Given the current financially constrained

  5. Impact of Obesity on Cancer Survivorship and the Potential Relevance of Race and Ethnicity

    PubMed Central

    2013-01-01

    Evidence that obesity is associated with cancer incidence and mortality is compelling. By contrast, the role of obesity in cancer survival is less well understood. There is inconsistent support for the role of obesity in breast cancer survival, and evidence for other tumor sites is scant. The variability in findings may be due in part to comorbidities associated with obesity itself rather than with cancer, but it is also possible that obesity creates a physiological setting that meaningfully alters cancer treatment efficacy. In addition, the effects of obesity at diagnosis may be distinct from the effects of weight change after diagnosis. Obesity and related comorbid conditions may also increase risk for common adverse treatment effects, including breast cancer–related lymphedema, fatigue, poor health–related quality of life, and worse functional health. Racial and ethnic groups with worse cancer survival outcomes are also the groups for whom obesity and related comorbidities are more prevalent, but findings from the few studies that have addressed these complexities are inconsistent. We outline a broad theoretical framework for future research to clarify the specifics of the biological–social–environmental feedback loop for the combined and independent contributions of race, comorbid conditions, and obesity on cancer survival and adverse treatment effects. If upstream issues related to comorbidities, race, and ethnicity partly explain the purported link between obesity and cancer survival outcomes, these factors should be among those on which interventions are focused to reduce the burden of cancer. PMID:23990667

  6. Survivorship: immunizations and prevention of infections, version 2.2014.

    PubMed

    Denlinger, Crystal S; Ligibel, Jennifer A; Are, Madhuri; Baker, K Scott; Demark-Wahnefried, Wendy; Dizon, Don; Friedman, Debra L; Goldman, Mindy; Jones, Lee; King, Allison; Ku, Grace H; Kvale, Elizabeth; Langbaum, Terry S; Leonardi-Warren, Kristin; McCabe, Mary S; Melisko, Michelle; Montoya, Jose G; Mooney, Kathi; Morgan, Mary Ann; Moslehi, Javid J; O'Connor, Tracey; Overholser, Linda; Paskett, Electra D; Peppercorn, Jeffrey; Raza, Muhammad; Rodriguez, M Alma; Syrjala, Karen L; Urba, Susan G; Wakabayashi, Mark T; Zee, Phyllis; McMillian, Nicole R; Freedman-Cass, Deborah A

    2014-08-01

    Cancer survivors are at an elevated risk for infection because of immune suppression associated with prior cancer treatments, and they are at increased risk of complications from vaccine-preventable diseases. This section of the NCCN Guidelines for Survivorship provides recommendations for the prevention of infections in survivors through education, antimicrobial prophylaxis, and the judicious use of vaccines. These guidelines provide information about travel and gardening precautions and safe pet care/avoidance of zoonosis, and include detailed recommendations regarding vaccinations that should be considered and encouraged in cancer and transplant survivors.

  7. Caring for people living with, and beyond, cancer: an online survey of GPs in England

    PubMed Central

    Walter, Fiona M; Usher-Smith, Juliet A; Yadlapalli, Suresh; Watson, Eila

    2015-01-01

    Background Increasing numbers of people are living with, and beyond, cancer. They are at risk of long-term morbidity and premature mortality due to the consequences of their disease and its treatment. Primary care can contribute to providing ongoing care. Aim To determine the current practice and views of GPs in England regarding cancer survivorship care. Design and setting Online survey of a sample of 500 GPs, stratified by NHS region in England. Method The survey included questions adapted from prior surveys assessing physician knowledge and attitudes regarding care of patients with cancer. Results In total, 500 GPs responded; approximately half reported often providing care to people living beyond cancer for treatment-related side effects (51%), psychological symptoms (65%), and lifestyle advice (55%). Only 29% felt very confident managing treatment-related side effects compared with 46% and 65% for psychological symptoms and lifestyle advice respectively. Half reported usually receiving cancer treatment summaries and survivorship care plans but most of the sample felt these would improve their ability to provide care (76%). Only 53% were convinced of the usefulness of cancer care reviews. Although most felt that primary and specialist care should share responsibility for managing bone (81%) and cardiovascular (77%) health consequences, fewer than half reported often taking previous history of cancer or cancer treatment into consideration when assessing bone health; only one-fifth did this in relation to cardiovascular health. Most responders were interested in receiving education to improve their knowledge and expertise. Conclusion GPs have a potentially important role to play in caring for people following cancer treatment. This study has highlighted areas where further support and education are needed to enable GPs to optimise their role in cancer survivorship care. PMID:26500324

  8. Maintaining Sexual Health throughout Gynecologic Cancer Survivorship: A Comprehensive Review and Clinical Guide

    PubMed Central

    Huffman, Laura B.; Hartenbach, Ellen M.; Carter, Jeanne; Rash, Joanne K.; Kushner, David M.

    2016-01-01

    Objective The diagnosis and treatment of gynecologic cancer can cause short- and long-term negative effects on sexual health and quality of life (QoL). The aim of this article is to present a comprehensive overview of the sexual health concerns of gynecologic cancer survivors and discuss evidence-based treatment options for commonly encountered sexual health issues. Methods A comprehensive literature search of English language studies on sexual health in gynecologic cancer survivors and the treatment of sexual dysfunction was conducted in MEDLINE databases. Relevant data are presented in this review. Additionally, personal and institutional practices are incorporated where relevant. Results Sexual dysfunction is prevalent among gynecologic cancer survivors as a result of surgery, radiation, and chemotherapy--negatively impacting QoL. Many patients expect their healthcare providers to address sexual health concerns, but most have never discussed sex-related issues with their physician. Lubricants, moisturizers, and dilators are effective, simple, non-hormonal interventions that can alleviate the morbidity of vaginal atrophy, stenosis, and pain. Pelvic floor physical therapy can be an additional tool to address dyspareunia. Cognitive behavioral therapy has been shown to be beneficial to patients reporting problems with sexual interest, arousal, and orgasm. Conclusion Oncology providers can make a significant impact on the QoL of gynecologic cancer survivors by addressing sexual health concerns. Simple strategies can be implemented into clinical practice to discuss and treat many sexual issues. Referral to specialized sexual health providers may be needed to address more complex problems. PMID:26556768

  9. Nonsurgical Management of Cervical Cancer: Locally Advanced, Recurrent, and Metastatic Disease, Survivorship, and Beyond

    PubMed Central

    Mackay, Helen J.; Wenzel, Lari; Mileshkin, Linda

    2016-01-01

    Overview Despite the declining incidence of cervical cancer as a result of the introduction of screening programs, globally it remains a leading cause of cancer-related death in women. Outcomes for patients who are diagnosed with anything but early-stage disease remain poor. Here we examine emerging strategies to improve the treatment of locally advanced disease. We discuss emerging biologic data, which are informing our investigation of new therapeutic interventions in persistent, recurrent, and metastatic cervical cancer. We recognize the importance of interventions to improve quality of life and to prevent long-term sequelae in women undergoing treatment. Finally, and perhaps most importantly, we recognize the need for global collaboration and advocacy to improve the outcome for all women at risk of and diagnosed with this disease. PMID:25993189

  10. Breast cancer survivorship--intersecting gendered discourses in a 5-year follow-up study.

    PubMed

    Norberg, Monika; Magnusson, Eva; Egberg Thyme, Karin; Åström, Sture; Lindh, Jack; Öster, Inger

    2015-01-01

    In this article the authors present a follow-up study of women's interview narratives about life 5 to 7 years after a breast cancer operation. The women had taken part in a study during the 6-month postoperation period. Art therapy contributed to well-being, including strengthening personal boundaries. In the new study, interview analysis informed by critical discursive psychology indicated three problematic discourses that the women still struggled with several years after the operation: the female survivor, the "good woman," and individual responsibility. We concluded that many women with a history of breast cancer need support several years after their medical treatment is finished.

  11. Young Adult Cancer Survivors' Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care.

    PubMed

    Berg, Carla J; Stratton, Erin; Esiashvili, Natia; Mertens, Ann

    2016-09-01

    We examined correlates of low engagement in the healthcare system, experiences with survivorship care, barriers to follow-up care, and potential resources for promoting follow-up care among young adult survivors of childhood cancers. We conducted a mixed-method study involving surveys of 106 survivors of childhood cancer aged 18-34 recruited from a university-affiliated children's hospital and an NCI-designated cancer center in the Southeastern USA. Phone-based semistructured interviews were then conducted in a subset of 26. Assessments included health factors, psychosocial factors, healthcare system interaction, and interest in resources to promote engagement in healthcare. Survey participants were on average 22.14 (SD = 3.16) years old, 50.0 % female, and 77.4 % White. Overall, 46.0 % had attended survivorship clinic, 47.2 % reported receiving a treatment summary, 68.9 % had a primary care provider, and 17.0 % reported no interaction with healthcare in the past 2 years. Correlates of less than annual healthcare provider visits included being older (p = 0.003), being male (p < 0.001), lack of insurance (p = 0.002), and having had chemotherapy (p = 0.05). Participants reported varied experiences in terms of how health and treatment information was presented, from none or too little to overwhelming or anxiety-provoking amounts. Barriers to engaging in survivorship care included no/limited insurance, time, or transportation; major life changes; anxiety; and difficulty transitioning from pediatrics to adult care. Participants highlighted the need for educational and psychosocial resources, particularly technology-based resources. Multilevel interventions are needed to increase engagement in survivorship care among young adult cancer survivors. Technology-based resources addressing social support and mental well-being are intervention possibilities.

  12. Young Adult Cancer Survivors’ Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care

    PubMed Central

    Stratton, Erin; Esiashvili, Natia; Mertens, Ann

    2016-01-01

    We examined correlates of low engagement in the healthcare system, experiences with survivorship care, barriers to follow-up care, and potential resources for promoting follow-up care among young adult survivors of childhood cancers. We conducted a mixed-method study involving surveys of 106 survivors of childhood cancer aged 18–34 recruited from a university-affiliated children’s hospital and an NCI-designated cancer center in the Southeastern USA. Phone-based semistructured interviews were then conducted in a subset of 26. Assessments included health factors, psychosocial factors, healthcare system interaction, and interest in resources to promote engagement in healthcare. Survey participants were on average 22.14(SD=3.16) years old, 50.0 % female, and 77.4 % White. Overall, 46.0 % had attended survivorship clinic, 47.2 % reported receiving a treatment summary, 68.9 % had a primary care provider, and 17.0 % reported no interaction with healthcare in the past 2 years. Correlates of less than annual healthcare provider visits included being older (p=0.003), being male (p<0.001), lack of insurance (p=0.002), and having had chemotherapy (p=0.05). Participants reported varied experiences in terms of how health and treatment information was presented, from none or too little to overwhelming or anxiety-provoking amounts. Barriers to engaging in survivorship care included no/limited insurance, time, or transportation; major life changes; anxiety; and difficulty transitioning from pediatrics to adult care. Participants highlighted the need for educational and psychosocial resources, particularly technology-based resources. Multilevel interventions are needed to increase engagement in survivor-ship care among young adult cancer survivors. Technology-based resources addressing social support and mental well-being are intervention possibilities. PMID:25948413

  13. Top 10 Research Questions Related to Physical Activity and Cancer Survivorship

    ERIC Educational Resources Information Center

    Courneya, Kerry S.; Rogers, Laura Q.; Campbell, Kristin L.; Vallance, Jeff K.; Friedenreich, Christine M.

    2015-01-01

    In the United States, there are more than 14 million cancer survivors. Many of these survivors have been treated with multimodal therapy including surgery, radiation therapy, chemotherapy, and targeted therapies. These therapies improve survival; however, they also cause acute and chronic side effects that can undermine health and quality of life.…

  14. Marital quality and survivorship: Slowed recovery for breast cancer patients in distressed relationships (Original Article)

    PubMed Central

    Yang, Hae-Chung; Schuler, Tammy A.

    2008-01-01

    Background Although marital distress has been implicated in difficulties with adjustment to a breast cancer diagnosis, its long-term effects, especially on physical recovery, are unknown. Methods Longitudinal data from newly diagnosed breast cancer patients (N=100) who were married or cohabiting were used. Patients were assessed post diagnosis and surgery (baseline) and then reassessed every four or six months for the next five years. Women in stable, distressed relationships (n=28) were compared to those in stable, non-distressed relationships (n=72). Stress, health behavior, and health outcomes were examined using mixed-effects modeling. Results Overall, marital distress was associated with slowed recovery trajectories and poor outcomes. At baseline both groups had equivalent, high levels of stress, but diverged thereafter. Stress declined more slowly for the Distressed group and by five years it remained significantly higher. Differential reductions in physical activity were also observed. Regarding health, the Distressed group was found to have a slower recovery in performance status and more symptoms/signs of illness and treatment side effects through three years. Finally, all of the effects were observed above and beyond reductions occurring with depressive symptomatology, which was significantly higher in the Distressed group. Conclusions Marital distress is not only associated with worse psychological outcomes for breast cancer survivors, but poorer health and a steeper decline in physical activity. These novel data show recovery trajectories for breast cancer survivors to be constrained for those also coping with ongoing difficulties in their marriage. PMID:18951520

  15. Top 10 Research Questions Related to Physical Activity and Cancer Survivorship

    ERIC Educational Resources Information Center

    Courneya, Kerry S.; Rogers, Laura Q.; Campbell, Kristin L.; Vallance, Jeff K.; Friedenreich, Christine M.

    2015-01-01

    In the United States, there are more than 14 million cancer survivors. Many of these survivors have been treated with multimodal therapy including surgery, radiation therapy, chemotherapy, and targeted therapies. These therapies improve survival; however, they also cause acute and chronic side effects that can undermine health and quality of life.…

  16. CancerCare

    MedlinePlus

    ... social worker » Cancer Care ® E-News and E-Alerts Get news and updates from Cancer Care ® right ... Hope Video Library Blog E-News and E-Alerts Calendar Resource Database Open Portals For Patients and ...

  17. CancerCare

    MedlinePlus

    ... social worker » Cancer Care ® E-News and E-Alerts Get news and updates from Cancer Care ® right ... Hope Video Library Blog E-News and E-Alerts Calendar Resource Database Open Portals For Patients and ...

  18. Advancing Cancer Survivorship in a Country with 1.35 Billion People: The China Lymphoma Project.

    PubMed

    Coughlin, Steven; Reno, Jamie

    Rates of lymphoma are rising rapidly and lymphoma is now the ninth most common cancer among Chinese males. The China Lymphoma Project was founded to increase awareness of lymphoma in China, including the survivability of the disease and the availability of potentially life-saving treatments, and to provide social support for men, women, and children in China who are living with the disease. The project is working with China government officials, several of the top cancer hospitals in China and the U.S., internationally known oncologists and cancer researchers, pharmaceutical and biotech companies in China and the U.S., healthcare and environmental companies, the Confucius Institute at San Diego State University, and the Asian Heritage Society. Advances in e-Health are being utilized to provide patient education and social support. The project will provide free e-books that profile lymphoma survivors (e.g., Kai-Fu Lee, creator of Google China), new videos, websites, pamphlets, blogs, video logs (vlogs), peer-to-peer counseling and support, and information about the latest treatments and oncology clinical trials.

  19. Advancing Cancer Survivorship in a Country with 1.35 Billion People: The China Lymphoma Project

    PubMed Central

    Coughlin, Steven; Reno, Jamie

    2016-01-01

    Rates of lymphoma are rising rapidly and lymphoma is now the ninth most common cancer among Chinese males. The China Lymphoma Project was founded to increase awareness of lymphoma in China, including the survivability of the disease and the availability of potentially life-saving treatments, and to provide social support for men, women, and children in China who are living with the disease. The project is working with China government officials, several of the top cancer hospitals in China and the U.S., internationally known oncologists and cancer researchers, pharmaceutical and biotech companies in China and the U.S., healthcare and environmental companies, the Confucius Institute at San Diego State University, and the Asian Heritage Society. Advances in e-Health are being utilized to provide patient education and social support. The project will provide free e-books that profile lymphoma survivors (e.g., Kai-Fu Lee, creator of Google China), new videos, websites, pamphlets, blogs, video logs (vlogs), peer-to-peer counseling and support, and information about the latest treatments and oncology clinical trials. PMID:27570834

  20. Survivorship in Non-Small Cell Lung Cancer: Challenges Faced and Steps Forward.

    PubMed

    Vijayvergia, Namrata; Shah, Prashant C; Denlinger, Crystal S

    2015-09-01

    Improvements in curative therapies and the advent of screening have led to increased numbers of non-small cell lung cancer (NSCLC) survivors. Most survivors have undergone invasive treatment (surgery, radiation therapy, and/or chemotherapy) and carry a higher comorbidity burden than survivors of other cancers. Overall quality of life (QOL) and health-related quality of life (HRQOL) suffer during the treatment phase, with the potential for long-term decline, and both clinical characteristics and treatment impact these measures. Physical and mental components of HRQOL seem to be most at risk for decline. The issues faced by survivors include physical symptoms such as respiratory issues, fatigue, hearing loss, neuropathy, and postsurgical pain; psychological distress leading to depression, financial issues, and poor compliance with recommended guidelines; and fear or risk of recurrence and secondary malignancies. This article summarizes the major issues faced by NSCLC survivors and suggests appropriate management. Future collaborative efforts are needed to further elucidate the complex issues that affect overall QOL and HRQOL in NSCLC survivors and to develop appropriate interventions in this large and diverse survivor population. Copyright © 2015 by the National Comprehensive Cancer Network.

  1. Neurotherapy As a Catalyst in the Treatment of Fatigue in Breast Cancer Survivorship.

    PubMed

    Nelson, David V; Esty, Mary Lee

    2016-01-01

    Pharmacologic and non-pharmacologic treatments for cancer-related fatigue (CRF) have produced mixed and often disappointing results. Treatment using the Flexyx Neurotherapy System (FNS), a novel variant of electroencephalograph biofeedback that involves minutely pulsed electromagnetic (EM) stimulation of brainwave functioning, was explored to determine utility for alleviating CRF in a 45-year-old woman who had debilitating fatigue with onset during chemotherapy for stage II infiltrating right breast cancer, who had been free of signs of disease for over five years, and who had been struggling to increase her activity level and engage in regular exercise without benefit. FNS was administered in 10 weekly sessions. Alleviation of fatigue and other potentially interrelated symptoms (cognitive clouding, sleep disturbance, pain, and negative mood/emotions) and overall greater activity level was sustained at six-month follow-up. Very low energy EM brainwave stimulation therapies such as FNS may contribute to an enlivening of drive to engage in greater energized activity. Copyright © 2016 Elsevier Inc. All rights reserved.

  2. Survivorship in Non–Small Cell Lung Cancer: Challenges Faced and Steps Forward

    PubMed Central

    Vijayvergia, Namrata; Shah, Prashant C.; Denlinger, Crystal S.

    2016-01-01

    Improvements in curative therapies and the advent of screening have led to increased numbers of non–small cell lung cancer (NSCLC) survivors. Most survivors have undergone invasive treatment (surgery, radiation therapy, and/or chemotherapy) and carry a higher comorbidity burden than survivors of other cancers. Overall quality of life (QOL) and health-related quality of life (HRQOL) suffer during the treatment phase, with the potential for long-term decline, and both clinical characteristics and treatment impact these measures. Physical and mental components of HRQOL seem to be most at risk for decline. The issues faced by survivors include physical symptoms such as respiratory issues, fatigue, hearing loss, neuropathy, and postsurgical pain; psychological distress leading to depression, financial issues, and poor compliance with recommended guidelines; and fear or risk of recurrence and secondary malignancies. This article summarizes the major issues faced by NSCLC survivors and suggests appropriate management. Future collaborative efforts are needed to further elucidate the complex issues that affect overall QOL and HRQOL in NSCLC survivors and to develop appropriate interventions in this large and diverse survivor population. PMID:26358799

  3. Complementary therapy support in cancer survivorship: a survey of complementary and alternative medicine practitioners' provision and perception of skills.

    PubMed

    Samuel, C A; Faithfull, S

    2014-03-01

    This study reviewed the confidence and perceived skills of complementary and alternative medicine (CAM) practitioners in providing care and symptom management for clients post cancer. An e-survey was mailed to approximately 21, 000 CAM practitioners, targeted at those working with clients who were experiencing consequences of cancer and its treatments. Questions were asked about the main symptoms and concerns of clients, the confidence and current skill levels of practitioners and additional training requirements. Six hundred and twelve practitioners responded to the survey, 507 of whom were working with individuals experiencing the consequences of cancer and its treatments. Forty-five per cent (n = 134) had undertaken training in cancer prior to working with cancer patients, 61% (n = 182) had undertaken courses or study days relative to cancer care in the past two years. The most often treated symptoms or concerns of patients were those of a psychosocial nature, pain management and lymphoedema. CAM practitioners with limited knowledge and training are providing support to cancer survivors, particularly in services where the National Health Service has limited provision. CAM practitioners may fulfil a future role in providing long-term support for cancer survivors; however, in order to properly safeguard patients they are in need of further training and development.

  4. Design and Implementation of a Comprehensive Web-based Survey for Ovarian Cancer Survivorship with an Analysis of Prediagnosis Symptoms via Text Mining.

    PubMed

    Sun, Jiayang; Bogie, Kath M; Teagno, Joe; Sun, Yu-Hsiang Sam; Carter, Rebecca R; Cui, Licong; Zhang, Guo-Qiang

    2014-01-01

    Ovarian cancer (OvCa) is the most lethal gynecologic disease in the United States, with an overall 5-year survival rate of 44.5%, about half of the 89.2% for all breast cancer patients. To identify factors that possibly contribute to the long-term survivorship of women with OvCa, we conducted a comprehensive online Ovarian Cancer Survivorship Survey from 2009 to 2013. This paper presents the design and implementation of our survey, introduces its resulting data source, the OVA-CRADLE™ (Clinical Research Analytics and Data Lifecycle Environment), and illustrates a sample application of the survey and data by an analysis of prediagnosis symptoms, using text mining and statistics. The OVA-CRADLE™ is an application of our patented Physio-MIMI technology, facilitating Web-based access, online query and exploration of data. The prediagnostic symptoms and association of early-stage OvCa diagnosis with endometriosis provide potentially important indicators for future studies in this field.

  5. Cancer care in Jordan.

    PubMed

    Abdel-Razeq, Hikmat; Attiga, Fadwa; Mansour, Asem

    2015-06-01

    Cancer is the second leading cause of death in Jordan after cardiovascular diseases. Due to increase in life expectancy and prolonged exposure to risk factors, cancer mortality and morbidity are expected to increase as the young population ages. This increase will constitute a challenging burden on healthcare systems in Jordan and many other neighboring countries. Planning is key to managing the expected rise in the demand for cancer care, and this will require public health initiatives to guarantee access to quality cancer care. Over the past decade, cancer care in Jordan has witnessed remarkable improvement through access to advanced diagnostics and therapeutics. In this review, we address the history of cancer care in Jordan, including cancer statistics, infrastructure, workforce as well as cancer care outcomes. We also discuss many of the challenges that we face and offer suggestions for the improvement of cancer management in Jordan and the region. Copyright © 2015 King Faisal Specialist Hospital & Research Centre. Published by Elsevier B.V. All rights reserved.

  6. Long-Term Impact of Endometrial Cancer Diagnosis and Treatment on Health-Related Quality of Life and Cancer Survivorship: Results From the Randomized PORTEC-2 Trial.

    PubMed

    de Boer, Stephanie M; Nout, Remi A; Jürgenliemk-Schulz, Ina M; Jobsen, Jan J; Lutgens, Ludy C H W; van der Steen-Banasik, Elzbieta M; Mens, Jan Willem M; Slot, Annerie; Stenfert Kroese, Marika C; Oerlemans, Simone; Putter, Hein; Verhoeven-Adema, Karen W; Nijman, Hans W; Creutzberg, Carien L

    2015-11-15

    To evaluate the long-term health-related quality of life (HRQL) after external beam radiation therapy (EBRT) or vaginal brachytherapy (VBT) among PORTEC-2 trial patients, evaluate long-term bowel and bladder symptoms, and assess the impact of cancer on these endometrial cancer (EC) survivors. In the PORTEC-2 trial, 427 patients with stage I high-intermediate-risk EC were randomly allocated to EBRT or VBT. The 7- and 10-year HRQL questionnaires consisted of EORTC QLQ-C30; subscales for bowel and bladder symptoms; the Impact of Cancer Questionnaire; and 14 questions on comorbidities, walking aids, and incontinence pads. Analysis was done using linear mixed models for subscales and (ordinal) logistic regression with random effects for single items. A two-sided P value <.01 was considered statistically significant. Longitudinal HRQL analysis showed persisting higher rates of bowel symptoms with EBRT, without significant differences in global health or any of the functioning scales. At 7 years, clinically relevant fecal leakage was reported by 10.6% in the EBRT group, versus 1.8% for VBT (P=.03), diarrhea by 8.4% versus 0.9% (P=.04), limitations due to bowel symptoms by 10.5% versus 1.8% (P=.001), and bowel urgency by 23.3% versus 6.6% (P<.001). Urinary urgency was reported by 39.3% of EBRT patients, 25.5% for VBT, P=.05. No difference in sexual activity was seen between treatment arms. Long-term impact of cancer scores was higher among the patients who had an EC recurrence or second cancer. More than 7 years after treatment, EBRT patients reported more bowel symptoms with impact on daily activities, and a trend for more urinary symptoms, without impact on overall quality of life or difference in cancer survivorship issues. Copyright © 2015 Elsevier Inc. All rights reserved.

  7. Mindfulness Meditation or Survivorship Education in Improving Behavioral Symptoms in Younger Stage 0-III Breast Cancer Survivors (Pathways to Wellness)

    ClinicalTrials.gov

    2017-03-21

    Cancer Survivor; Early-Stage Breast Carcinoma; Stage 0 Breast Cancer; Stage IA Breast Cancer; Stage IB Breast Cancer; Stage IIA Breast Cancer; Stage IIB Breast Cancer; Stage IIIA Breast Cancer; Stage IIIB Breast Cancer; Stage IIIC Breast Cancer

  8. Optimal delivery of colorectal cancer follow-up care: improving patient outcomes

    PubMed Central

    Jorgensen, Mikaela L; Young, Jane M; Solomon, Michael J

    2015-01-01

    Colorectal cancer (CRC) is the third most commonly diagnosed cancer worldwide. With population aging and increases in survival, the number of CRC survivors is projected to rise dramatically. The time following initial treatment is often described as a period of transition from intensive hospital-based care back into “regular life.” This review provides an overview of recommended follow-up care for people with CRC who have been treated with curative intent, as well as exploring the current state of the research that underpins these guidelines. For patients, key concerns following treatment include the development of recurrent and new cancers, late and long-term effects of cancer and treatment, and the interplay of these factors with daily function and general health. For physicians, survivorship care plans can be a tool for coordinating the surveillance, intervention, and prevention of these key patient concerns. Though much of the research in cancer survivorship to date has focused on surveillance for recurrent disease, many national guidelines differ in their conclusions about the frequency and timing of follow-up tests. Most CRC guidelines refer only briefly to the management of side effects, despite reports that many patients have a range of ongoing physiological, psychosocial, and functional needs. Guidance for surveillance and intervention is often limited by a small number of heterogeneous trials conducted in this patient group. However, recently released survivorship guidelines emphasize the potential for the effectiveness of secondary prevention strategies, such as physical activity, to improve patient outcomes. There is also emerging evidence for the role of primary care providers and nurse coordinated care to support the transition and increase the cost-effectiveness of follow-up. The shift in focus from recurrence alone to the assessment and management of a range of survivorship issues will be important for ensuring that this growing group of

  9. Homeopathy in cancer care.

    PubMed

    Frenkel, Moshe

    2010-01-01

    Homeopathy is a controversial system of care that is practiced extensively in Europe, Asia, and South America primarily for functional and minor ailments. In this review, published studies on homeopathic remedies and cancer were examined. Data were obtained from multiple research disciplines, ranging from basic science to scientifically valid animal and clinical studies. The data from a few laboratory experiments in cancer models show some beneficial effect of homeopathic remedies on selected cancer cell lines. However, in the clinical arena, this effect is not clear. Several published outcome studies and some randomized controlled trials have shown that there may be a role for homeopathy in symptom relief and improving quality of life in patients touched by cancer. Such effects have not been demonstrated unequivocally, and specific antitumor effects have not been shown in any controlled clinical research to date, which raises the need for further clinical trials to investigate the use of homeopathy in cancer care.

  10. Caring for Alaska Native prostate cancer survivors in primary care: a survey of Alaska Tribal Health System providers.

    PubMed

    Tilburt, Jon C; Kelley, Stacy; DeCourtney, Christine A; Humeniuk, Katherine M; Latini, Jerilyn; Kim, Simon P

    2014-01-01

    Little is known about the constraints of optimizing health care for prostate cancer survivors in Alaska primary care. To describe the experiences and attitudes of primary care providers within the Alaska Tribal Health System (ATHS) regarding the care of prostate cancer survivors. In late October 2011, we emailed a 22-item electronic survey to 268 ATHS primary care providers regarding the frequency of Prostate Specific Antigen (PSA) monitoring for a hypothetical prostate cancer survivor; who should be responsible for the patient's life-long prostate cancer surveillance; who should support the patient's emotional and medical needs as a survivor; and providers' level of comfort addressing recurrence monitoring, erectile dysfunction, urinary incontinence, androgen deprivation therapy, and emotional needs. We used simple logistic regression to examine the association between provider characteristics and their responses to the survivorship survey items. Of 221 individuals who were successfully contacted, a total of 114 responded (52% response rate). Most ATHS providers indicated they would order a PSA test every 12 months (69%) and believed that, ideally, the hypothetical patient's primary care provider should be responsible for his life-long prostate cancer surveillance (60%). Most providers reported feeling either "moderately" or "very" comfortable addressing topics such as prostate cancer recurrence (59%), erectile dysfunction (64%), urinary incontinence (63%), and emotional needs (61%) with prostate cancer survivors. These results varied somewhat by provider characteristics including female sex, years in practice, and the number of prostate cancer survivors seen in their practice. These data suggest that most primary care providers in Alaska are poised to assume the care of prostate cancer survivors locally. However, we also found that large minorities of providers do not feel confident in their ability to manage common issues in prostate cancer survivorship

  11. Healing and survivorship: what makes a difference?

    PubMed Central

    Braude, H.D.; Macdonald, N.; Chasen, M.

    2008-01-01

    Literature demonstrating the importance of social relationships for cancer survivorship is accumulating. Building on that literature, the term “Healing Ties” refers to the scientific and popular factors supporting the idea that relationships and community are essential for healing. However, difficulties arise in assessing the effect of social support for survivorship. The current paper reviews the role in survivorship of social support, with respect to the explanatory model provided by neuro-oncology and psycho-neuro-immunology. Taking cognizance of the importance of social relationships, the model of cancer rehabilitation aims, through its interdisciplinary framework, to restore a sense of well-being and to facilitate healing by optimizing the capability for full social relationships and engagement with the world. PMID:18769605

  12. Policy statement on multidisciplinary cancer care.

    PubMed

    Borras, Josep M; Albreht, Tit; Audisio, Riccardo; Briers, Erik; Casali, Paolo; Esperou, Hélène; Grube, Birgitte; Hamoir, Marc; Henning, Geoffrey; Kelly, Joan; Knox, Susan; Nabal, Maria; Pierotti, Marco; Lombardo, Claudio; van Harten, Wim; Poston, Graeme; Prades, Joan; Sant, Milena; Travado, Luzia; Valentini, Vincenzo; van de Velde, Cornelis; van den Bogaert, Saskia; van den Bulcke, Marc; van Hoof, Elke; van den Neucker, Ingrid; Wilson, Robin

    2014-02-01

    Cancer care is undergoing an important paradigm shift from a disease-focused management to a patient-centred approach, in which increasingly more attention is paid to psychosocial aspects, quality of life, patients' rights and empowerment and survivorship. In this context, multidisciplinary teams emerge as a practical necessity for optimal coordination among health professionals and clear communication with patients. The European Partnership for Action Against Cancer (EPAAC), an initiative launched by the European Commission in 2009, addressed the multidisciplinary care from a policy perspective in order to define the core elements that all tumour-based multidisciplinary teams (MDTs) should include. To that effect, a working group conference was held in January 2013 within the EPAAC Work Package 7 (on Healthcare) framework. The consensus group consisted of high-level representatives from the following European scientific societies, patient associations and stakeholders: European CanCer Organisation (ECCO), European SocieTy for Radiology & Oncology (ESTRO), European Society for Medical Oncology (ESMO), European Society of Surgical Oncology (ESSO), International Society of Geriatric Oncology (SIOG), European Association for Palliative Care (EAPC), European Oncology Nursing Society (EONS), International Psycho-Oncology Society (IPOS),European Cancer Patient Coalition (ECPC), EuropaColon, Europa Donna - The European Breast Cancer Coalition, Association of European Cancer Leagues (ECL), Organisation of European Cancer Institutes (OECI), EUSOMA - European Society of Breast Cancer Specialists, European Hospital and Healthcare Federation (HOPE) and EPAAC Work Packages 5 (Health promotion and prevention), 7, 8 (Research), 9 (Information systems) and 10 (Cancer plans). A background document with a list of 26 core issues drawn from a systematic review of the literature was used to guide the discussion. Five areas related to MDTs were covered: care objectives, organisation

  13. Being prepared: essential to self-care and quality of life for the person with cancer.

    PubMed

    Knobf, M Tish

    2013-06-01

    Being adequately prepared for an experience such as cancer empowers patients, lowers distress, improves coping, supports self-management, promotes recovery, and improves quality of life. However, patients with cancer report unmet informational and support needs across the cancer trajectory. The purpose of this article is to describe the relationship of information preparation and patient outcomes, identify information and support needs across the cancer trajectory, and describe the role of oncology nurses in the delivery of high-quality patient-centered cancer care. The middle range theory of "Carrying On" was used to identify information and support needs during different phases of the cancer trajectory from treatment to survivorship. The authors concluded that nurses should engage the patient in a relational exchange of information; provide concrete, understandable information across specific times in the cancer experience; and use creative approaches to minimize barriers in meeting patient needs to achieve high-quality patient-centered cancer care.

  14. A Randomized Controlled Trial of a Nurse-Led Supportive Care Package (SurvivorCare) for Survivors of Colorectal Cancer.

    PubMed

    Jefford, Michael; Gough, Karla; Drosdowsky, Allison; Russell, Lahiru; Aranda, Sanchia; Butow, Phyllis; Phipps-Nelson, Jo; Young, Jane; Krishnasamy, Mei; Ugalde, Anna; King, Dorothy; Strickland, Andrew; Franco, Michael; Blum, Robert; Johnson, Catherine; Ganju, Vinod; Shapiro, Jeremy; Chong, Geoffrey; Charlton, Julie; Haydon, Andrew; Schofield, Penelope

    2016-08-01

    Colorectal cancer (CRC) and its treatments can cause distressing sequelae. We conducted a multicenter randomized controlled trial aiming to improve psychological distress, supportive care needs (SCNs), and quality of life (QOL) of patients with CRC. The intervention, called SurvivorCare (SC), comprised educational materials, needs assessment, survivorship care plan, end-of-treatment session, and three follow-up telephone calls. At the end of treatment for stage I-III CRC, eligible patients were randomized 1:1 to usual care (UC) or to UC plus SC. Distress (Brief Symptom Inventory 18), SCNs (Cancer Survivors' Unmet Needs measure), and QOL (European Organization for Research and Treatment of Cancer [EORTC] QOL questionnaires C30 and EORTC CRC module CR29) were assessed at baseline and at 2 and 6 months (follow-up 1 [FU1] and FU2, respectively). The primary hypothesis was that SC would have a beneficial effect on distress at FU1. The secondary hypotheses were that SC would have a beneficial effect on (a) SCN and QOL at FU1 and on (b) distress, SCNs, and QOL at FU2. A total of 15 items assessed experience of care. Of 221 patients randomly assigned, 4 were ineligible for the study and 1 was lost to FU, leaving 110 in the UC group and 106 in the SC group. Patients' characteristics included the following: median age, 64 years; men, 52%; colon cancer, 56%; rectal cancer, 35%; overlapping sites of disease, 10%; stage I disease, 7%; stage II, 22%; stage III, 71%. Baseline distress and QOL scores were similar to population norms. Between-group differences in distress at FU1 (primary outcome) and at FU2, and SCNs and QOL at FU1 and FU2 were small and nonsignificant. Patients in the SC group were more satisfied with survivorship care than those in the UC group (significant differences on 10 of 15 items). The addition of SC to UC did not have a beneficial effect on distress, SCNs, or QOL outcomes, but patients in the SC group were more satisfied with care. Some survivors of

  15. Cancer Survivors' Reported Discussions with Health Care Providers About Follow-Up Care and Receipt of Written Care Plans.

    PubMed

    Reed, Sarah C; Walker, Rod; Ziebell, Rebecca; Rabin, Borsika; Nutt, Stephanie; Chubak, Jessica; Nekhlyudov, Larissa

    2017-05-08

    Prior studies reveal gaps in cancer survivors' discussions with health care providers about follow-up care and receipt of care plans; however, whether survivorship care planning may vary by cancer type is not known. We surveyed 615 survivors of breast, colorectal, prostate, lung cancer, and melanoma enrolled in three health plans to examine cancer survivors' self-reported discussions of follow-up care, including the need for surveillance, late and long-term effects, emotional needs, and health behaviors. We assessed whether cancer survivors received a written treatment summary and post-treatment care instructions. Most (92%) survivors reported having a discussion about the need for surveillance; 75%, late and long-term effects; 69%, lifestyle and health behaviors; and 53%, emotional and social needs. Most (88%) reported receiving post-treatment care instructions and 47%, a treatment summary. While there was little difference among survivors' receipt of surveillance or health behavior recommendations by cancer type (p = 0.85 and p = 0.66, respectively), discussions of late and long-term effects occurred among 82% of prostate, 78% of breast, 73% of melanoma, 72% of colorectal, and 67% of lung survivors (p = 0.06). Approximately half of survivors reported discussions of emotional needs, with modest differences by cancer type (p = 0.08). Our findings indicate that most patient-provider discussions cover information on surveillance, with less emphasis on late and long-term effects, lifestyle and health behaviors, and substantially less focusing on emotional and social needs. No or modest differences in discussions occurred by cancer type. Whether tailoring information to individual cancer survivor needs is beneficial should be examined.

  16. The primary health care physician and the cancer patient: tips and strategies for managing sexual health

    PubMed Central

    Zhou, Eric S.; Nekhlyudov, Larissa

    2015-01-01

    There is a large and growing population of long-term cancer survivors. Primary care physicians (PCPs) are playing an increasingly greater role in the care of these patients across the continuum of cancer survivorship. In this role, PCPs are faced with the responsibility of managing a range of medical and psychosocial late effects of cancer treatment. In particular, the sexual side effects of treatment which are common and have significant impact on quality of life for the cancer survivor, often go unaddressed. This is an area of clinical care and research that has received increasing attention, highlighted by the presentation of this special issue on Cancer and Sexual Health. The aims of this review are 3-fold. First, we seek to overview common presentations of sexual dysfunction related to major cancer diagnoses in order to give the PCP a sense of the medical issues that the survivor may present with. Barriers to communication about sexual health issues between patient/PCPs in order are also described in order to emphasize the importance of PCPs initiating this important conversation. Next, we provide strategies and resources to help guide the PCP in the management of sexual dysfunction in cancer survivors. Finally, we discuss case examples of survivorship sexual health issues and highlight the role that a PCP can play in each of these case examples. PMID:26816826

  17. Psychosocial outcomes in active treatment through survivorship.

    PubMed

    Reed, Sarah C; Bell, Janice F; Whitney, Robin; Lash, Rebecca; Kim, Katherine K; Bold, Richard J; Joseph, Jill G

    2017-04-20

    The objective of the study is to understand potential differences in psychosocial outcomes from active treatment to survivorship. Using the Medical Expenditure Panel Survey Experiences with Cancer Survivorship Supplement (n = 1360), we examined and compared psychosocial outcomes among respondents in active treatment with survivors by year(s) since treatment ended. Survey-weighted regression models were used to test associations between year(s) since treatment and depressive symptoms (Patient Health Questionnaire-2), psychological distress (K6), and cancer-specific worry related to recurrence. Unadjusted estimates showed no significant differences in depressive symptoms or psychological distress between those in active treatment and cancer survivors at any time posttreatment. In contrast, the prevalence of cancer-specific worry was lowest among survivors more than 5 years since treatment (10%), slightly higher among those with less than 1 year since treatment (15%), and highest among those in active treatment (32%). In models controlled for sociodemographic and health-related covariates, the year(s) since treatment ended was inversely associated with the odds of cancer-specific worry but was not associated with depressive symptoms or psychological distress. In this population-based sample, worry about cancer recurrence may diminish with years since treatment ended, while depressive symptoms and distress are persistent across the trajectory. These findings highlight unmet psychosocial needs among cancer survivors and demonstrate the importance of targeted interventions across the survivorship continuum. Copyright © 2017 John Wiley & Sons, Ltd.

  18. Quality of life among immigrant Latina breast cancer survivors: realities of culture and enhancing cancer care.

    PubMed

    Lopez-Class, Maria; Perret-Gentil, Monique; Kreling, Barbara; Caicedo, Larisa; Mandelblatt, Jeanne; Graves, Kristi D

    2011-12-01

    Breast cancer is the most common cancer among Latinas. This study examined social, cultural, and health care system factors that impact the quality of life and survivorship experiences of Latina immigrant breast cancer survivors. We interviewed Latina breast cancer survivors (n = 19) and, based on the interview findings, conducted two focus groups (n = 9). Research staff translated transcripts from Spanish into English. Two trained raters reviewed the content and identified themes. Thematic content analysis was used to categorize and organize data. Participants were largely monolingual in Spanish, predominantly from Central and South America and most (68%) had lived in the U.S. for ten or more years. All women were diagnosed and treated in the U.S. and were an average of 3.1 years from diagnosis. Women's survivorship experiences appeared to be shaped by cultural beliefs and experiences as immigrants such as secrecy/shame about a breast cancer diagnosis, feelings of isolation, importance of family support (familism), challenges with developing social relationships in the U.S. (less personalismo), and, for some, their partner's difficulty with showing emotional support (machismo). Navigating the U.S. medical system and language barriers were additional challenges in the participants' health care interactions. Latina breast cancer survivors adhere to certain cultural values and face unique issues as immigrants, potentially influencing overall quality of life and doctor-patient communication. Efforts to improve Latina immigrant breast cancer survivors' quality of life could include increased assessment of psychosocial functioning and referral to social support services, culturally sensitive navigation programs, and consistent use of appropriately trained interpreters.

  19. Quality of Life among Immigrant Latina Breast Cancer Survivors: Realities of Culture and Enhancing Cancer Care

    PubMed Central

    Lopez-Class, Maria; Perret-Gentil, Monique; Kreling, Barbara; Caicedo, Larisa; Mandelblatt, Jeanne; Graves, Kristi D.

    2012-01-01

    Objectives Breast cancer is the most common cancer among Latinas. This study examined social, cultural, and health care system factors that impact quality of life and survivorship experiences of Latina immigrant breast cancer survivors. Design We interviewed Latina breast cancer survivors (n=19) and, based on the interview findings, conducted two focus groups (n=9). Research staff translated transcripts from Spanish into English. Two trained raters reviewed the content and identified themes. Thematic content analysis was used to categorize and organize data. Results Participants were largely mono-lingual in Spanish, predominantly from Central and South America and most (68%) had lived in the U.S. for 10 or more years. All women were diagnosed and treated in the U.S. and were an average of 3.1 years from diagnosis. Women’s survivorship experiences appeared to be shaped by cultural beliefs and experiences as immigrants such as secrecy/shame about a breast cancer diagnosis, feelings of isolation, importance of family support (familism), challenges with developing social relationships in the U.S. (less personalismo), and, for some, their partner’s difficulty with showing emotional support (machismo). Navigating the U.S. medical system and language barriers were additional challenges in participants’ health care interactions. Conclusion Latina breast cancer survivors adhere to certain cultural values and face unique issues as immigrants, potentially influencing overall quality of life and doctor-patient communication. Efforts to improve Latina immigrant breast cancer survivors’ quality of life could include increased assessment of psychosocial functioning and referral to social support services, culturally-sensitive navigation programs and consistent use of appropriately trained interpreters. PMID:21706194

  20. Linking dispositional mindfulness and positive psychological processes in cancer survivorship: a multivariate path analytic test of the mindfulness-to-meaning theory.

    PubMed

    Garland, Eric L; Thielking, Paul; Thomas, Elizabeth A; Coombs, Mary; White, Shelley; Lombardi, Joy; Beck, Anna

    2017-05-01

    Research indicates that dispositional mindfulness is associated with positive psychological functioning. Although this disposition has been linked with beneficial outcomes in the broader mental health literature, less is known about dispositional mindfulness in cancer survivors and how it may be linked with indices of psychological and physical health relevant to cancer survivorship. We conducted a multivariate path analysis of data from a heterogeneous sample of cancer patients (N = 97) to test the Mindfulness-to-Meaning Theory, an extended process model of emotion regulation linking dispositional mindfulness with cancer-related quality of life via positive psychological processes. We found that patients endorsing higher levels of dispositional mindfulness were more likely to pay attention to positive experiences (β = .56), a tendency which was associated with positive reappraisal of stressful life events (β = .51). Patients who engaged in more frequent positive reappraisal had a greater sense of meaning in life (β = .43) and tended to savor rewarding or life affirming events (β = .50). In turn, those who engaged in high levels of savoring had better quality of life (β = .33) and suffered less from emotional distress (β = -.54). Findings provide support for the Mindfulness-to-Meaning Theory and help explicate the processes by which mindfulness promotes psychological flourishing in the face of cancer. Cancer survivors may benefit from enhancing mindfulness, reappraisal, and savoring. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

  1. Hypnosis in Cancer Care.

    PubMed

    Wortzel, Joshua; Spiegel, David

    2017-07-01

    Cancer affects a growing proportion of the population as survival improves. The illness and its treatment brings a substantial burden of symptoms, including pain, anxiety, insomnia, and grief. Here, the uses of hypnosis in the treatment of these cancer-related problems will be reviewed. The utility of measuring hypnotizability in the clinical setting will be discussed. The current neurobiology of hypnotizability and hypnosis will be reviewed. Methods and results of using hypnosis for pain control in acute and chronic settings will be presented. Effects of hypnotic analgesia in specific brain regions associated with pain reduction, notably the dorsal anterior cingulate cortex and the somatosensory cortex, underlies its utility as a potent and side-effect free analgesic. Methods for helping those with cancer to better manage their anxiety, insomnia, and grief will be described. These involve facing disease-related stressors while dissociating the experience from somatic arousal. Given the serious complications of medications widely used to treat pain, anxiety, and insomnia, this article provides methods and an evidence base for wider use of techniques involving hypnosis in cancer care. Altering patients' perception of pain, disease-related stress, and anxiety can help change the reality of their life with cancer.

  2. Qualitative evaluation of care plans for Canadian breast and head-and-neck cancer survivors

    PubMed Central

    Collie, K.; McCormick, J.; Waller, A.; Railton, C.; Shirt, L.; Chobanuk, J.; Taylor, A.; Lau, H.; Hao, D.; Walley, B.; Kapusta, B.; Joy, A.A.; Carlson, L.E.; Giese–Davis, J.

    2014-01-01

    Background Survivorship care plans (scps) have been recommended as a way to ease the transition from active cancer treatment to follow-up care, to reduce uncertainty for survivors in the management of their ongoing health, and to improve continuity of care. The objective of the demonstration project reported here was to assess the value of scps for cancer survivors in western Canada. Methods The Alberta CancerBridges team developed, implemented, and evaluated scps for 36 breast and 21 head-and-neck cancer survivors. For the evaluation, we interviewed 12 of the survivors, 9 nurses who delivered the scps, and 3 family physicians who received the scps (n = 24 in total). We asked about satisfaction, usefulness, emotional impact, and communication value. We collected written feedback from the three groups about positive aspects of the scps and possible improvements (n = 85). We analyzed the combined data using qualitative thematic analysis. Results Survivors, nurses, and family physicians agreed that scps could ease the transition to survivorship partly by enhancing communication between survivors and care providers. Survivors appreciated the individualized attention and the comprehensiveness of the plans. They described positive emotional impacts, but wanted a way to ensure that their physicians received the scps. Nurses and physicians responded positively, but expressed concern about the time required to implement the plans. Suggestions for streamlining the process included providing survivors with scp templates in advance, auto-populating the templates for the nurses, and creating summary pages for physicians. Conclusions The results suggest ways in which scps could help to improve the transition to cancer survivorship and provide starting points for larger feasibility studies. PMID:24523618

  3. The development and preliminary testing of a multimedia patient-provider survivorship communication module for breast cancer survivors.

    PubMed

    Wen, Kuang-Yi; Miller, Suzanne M; Stanton, Annette L; Fleisher, Linda; Morra, Marion E; Jorge, Alexandra; Diefenbach, Michael A; Ropka, Mary E; Marcus, Alfred C

    2012-08-01

    This paper describes the development of a theory-guided and evidence-based multimedia training module to facilitate breast cancer survivors' preparedness for effective communication with their health care providers after active treatment. The iterative developmental process used included: (1) theory and evidence-based content development and vetting; (2) user testing; (3) usability testing; and (4) participant module utilization. Formative evaluation of the training module prototype occurred through user testing (n = 12), resulting in modification of the content and layout. Usability testing (n = 10) was employed to improve module functionality. Preliminary web usage data (n = 256, mean age = 53, 94.5% White, 75% college graduate and above) showed that 59% of the participants accessed the communication module, for an average of 7 min per login. The iterative developmental process was informative in enhancing the relevance of the communication module. Preliminary web usage results demonstrate the potential feasibility of such a program. Our study demonstrates survivors' openness to the use of a web-based communication skills training module and outlines a systematic iterative user and interface program development and testing process, which can serve as a prototype for others considering such an approach. Copyright © 2012. Published by Elsevier Ireland Ltd.

  4. The development and preliminary testing of a multimedia patient–provider survivorship communication module for breast cancer survivors

    PubMed Central

    Wen, Kuang-Yi; Miller, Suzanne M.; Stanton, Annette L.; Fleisher, Linda; Morra, Marion E.; Jorge, Alexandra; Diefenbach, Michael A.; Ropka, Mary E.; Marcus, Alfred C.

    2012-01-01

    Objective This paper describes the development of a theory-guided and evidence-based multimedia training module to facilitate breast cancer survivors’ preparedness for effective communication with their health care providers after active treatment. Methods The iterative developmental process used included: (1) theory and evidence-based content development and vetting; (2) user testing; (3) usability testing; and (4) participant module utilization. Results Formative evaluation of the training module prototype occurred through user testing (n = 12), resulting in modification of the content and layout. Usability testing (n = 10) was employed to improve module functionality. Preliminary web usage data (n = 256, mean age = 53, 94.5% White, 75% college graduate and above) showed that 59% of the participants accessed the communication module, for an average of 7 min per login. Conclusion The iterative developmental process was informative in enhancing the relevance of the communication module. Preliminary web usage results demonstrate the potential feasibility of such a program. Practice implications Our study demonstrates survivors’ openness to the use of a web-based communication skills training module and outlines a systematic iterative user and interface program development and testing process, which can serve as a prototype for others considering such an approach. PMID:22770812

  5. Latin American Cancer Research Coalition. Community primary care/academic partnership model for cancer control.

    PubMed

    Kreling, Barbara A; Cañar, Janet; Catipon, Ericson; Goodman, Michelle; Pallesen, Nancy; Pomeroy, Jyl; Rodriguez, Yosselyn; Romagoza, Juan; Sheppard, Vanessa B; Mandelblatt, Jeanne; Huerta, Elmer E

    2006-10-15

    The Latin American Cancer Research Coalition (LACRC) was funded by NCI as a Special Populations Network to 1) provide training to clinic staff in cancer control and foster development of Latino faculty training, 2) conduct a needs assessment with the community clinics, 3) enhance the ability of the clinics to promote healthy lifestyles, 4) collaborate on research projects to improve use of early detection, and 5) explore partnerships to increase access to culturally competent cancer care. The LACRC developed a model for cancer control focused on community-based clinics as the focal point for in-reach and community outreach targeted to Latinos to reduce cancer disparities. This framework was designed to link the community to local hospitals and academic centers, build capacity, and promote diffusion of innovations directly into delivery systems. Eight research projects submitted by junior investigator/clinic teams have been funded by NCI. These research projects range from recruiting for clinical trials to prevention to survivorship. The LACRC has trained 6 cancer control coordinators from partner sites and educated 59 undergraduate minority student interns in aspects of cancer control research. Central to LACRC's success to date has been the creation and maintenance of an infrastructure of trusting relationships, especially those developed between clinician/investigators and individuals within the greater Latino community. Community clinics can be effective agents for cancer control among Latinos. Latinos are likely to participate in research conducted by culturally representative teams of researchers using culturally appropriate recruiting strategies. Cancer 2006. (c) 2006 American Cancer Society.

  6. Mapping unmet supportive care needs, quality-of-life perceptions and current symptoms in cancer survivors across the Asia-Pacific region: results from the International STEP Study.

    PubMed

    Molassiotis, A; Yates, P; Li, Q; So, W K W; Pongthavornkamol, K; Pittayapan, P; Komatsu, H; Thandar, M; Li, M-S; Titus Chacko, S; Lopez, V; Butcon, J; Wyld, D; Chan, R J

    2017-10-01

    To assess the supportive care needs, quality of life (QoL) and symptoms of patients with cancer after the end of first-line treatments and into survivorship in Asian countries using Australian data as benchmark. A cross-sectional survey was carried out in Australia and eight high-income (HICs) and low-/middle-income (LMICs) Asian countries (China, Japan, Hong Kong SAR, South Korea, Myanmar, Thailand, India, Philippines) using validated scales (Cancer Survivors Unmet Needs scale), physical-symptom concerns (Cancer Survivors Survey of Needs subscale) and a single-item measure of global QoL perception. Data were collected from 1748 patients from nine countries. QoL was highest in Australia and all other countries had significantly lower QoL than Australia (all P < 0.001). One-quarter of the patients reported low QoL (scores 1-3/10). The most frequently reported symptoms were fatigue (66.6%), loss of strength (61.8%), pain (61.6%), sleep disturbance (60.1%), and weight changes (57.7%), with no difference in symptom experience between Australian data and all other countries, or between HICs and LMICs. Unmet needs of moderate/strong level were particularly high in all aspects assessed, particularly in the area of existential survivorship (psychosocial care) and receiving comprehensive cancer care. Australia and HICs were similar in terms of unmet needs (all low), but LMICs had a significantly higher number of needs both compared with Australia and HICs (all P < 0.001). Health care systems in Asian countries need to re-think and prioritize survivorship cancer care and put action plans in place to overcome some of the challenges surrounding the delivery of optimal supportive cancer care, use available resource-stratified guidelines for supportive care and test efficient and cost-effective models of survivorship care.

  7. Tobacco-Related Health Disparities Across the Cancer Care Continuum.

    PubMed

    Simmons, Vani Nath; Pineiro, Barbara; Hooper, Monica Webb; Gray, Jhanelle E; Brandon, Thomas H

    2016-10-01

    Use of tobacco is the leading preventable cause of death in the United States. Racial/ethnic minorities and individuals of low socioeconomic status disproportionately experience tobacco-related disease and illness. Unique challenges and circumstances exist at each point in the cancer care continuum that may contribute to the greater cancer burden experienced by these groups. We reviewed tobacco-related disparities from cancer prevention to cancer survivorship. We also describe research that seeks to reduce tobacco-related disparities. Racial/ethnic minorities and low-income individuals experience unique social and environmental contextual challenges such as greater environmental cues to smoke and greater levels of perceived stress and social discrimination. Clinical practice guidelines support the effectiveness of pharmacotherapy and behavioral counseling for racial and ethnic minorities, yet smoking cessation rates are lower in this group when compared with non-Hispanic whites. Superior efficacy for culturally adapted interventions has not yet been established. To reduce health disparities in this population, a comprehensive strategy is needed with efforts directed at each point along the cancer care continuum. Strategies are needed to reduce the impact of contextual factors such as targeted tobacco marketing and social discrimination on smoking initiation and maintenance. Future efforts should focus on increasing the use of evidence-based cessation treatment methods and studying its effectiveness in these populations. Attention must also be focused on improving treatment outcomes by reducing smoking in diverse racial and ethnic patient populations.

  8. Transition of Care for Young Adult Survivors of Childhood and Adolescent Cancer: Rationale and Approaches

    PubMed Central

    Freyer, David R.

    2010-01-01

    Purpose Young adult survivors of childhood and adolescent cancer are an ever-growing population of patients, many of whom remain at lifelong risk for potentially serious complications of their cancer therapy. Yet research shows that many of these older survivors have deficient health-related knowledge and are not engaging in recommended health promotion and screening practices that could improve their long-term outcomes. The purpose of this review is to address these disparities by discussing how formal transition of care from pediatric to adult-focused survivorship services may help meet the unique medical, developmental, and psychosocial challenges of these young adults. Design Literature review and discussion. Results This article summarizes current research documenting the medical needs of young adult survivors, their suboptimal compliance with recommended follow-up, and the rationale, essential functions, current models, and innovative approaches for transition of follow-up care. Conclusion Systematic health care transition constitutes the standard of care for young adult survivors of childhood cancer. In developing a transitional care program, it is necessary to consider the scope of services to be provided, available resources, and other local exigencies that help determine the optimal model for use. Additional research is needed to improve health services delivery to this population. Effective advocacy is needed, particularly in the United States, to ensure the availability of uninterrupted health insurance coverage for survivorship services in young adulthood. PMID:20351333

  9. A prospective study of mastectomy patients with and without delayed breast reconstruction: long-term psychosocial functioning in the breast cancer survivorship period.

    PubMed

    Metcalfe, Kelly A; Zhong, Toni; Narod, Steven A; Quan, May-Lynn; Holloway, Claire; Hofer, Stefan; Bagher, Shaghayegh; Semple, John

    2015-03-01

    For women who have mastectomy, breast reconstruction is an option which may improve psychosocial functioning. The purpose of this study was to evaluate changes in psychosocial functioning over a long follow-up period after mastectomy, specifically examining the differences between those with mastectomy alone and those who underwent postmastectomy delayed breast reconstruction (DBR). This was a prospective longitudinal survey study of women with mastectomy in which a repeated measures design was used to compare psychosocial function scores over 3 timepoints: 1) pre-mastectomy; 2) one year post-mastectomy; and 3) long-term post-mastectomy (mean 6.3 years). In addition, psychosocial functioning was compared between the mastectomy alone group and the group who elected for DBR. 67 women who completed questionnaires at all three time points were included. The long-term follow-up time post-mastectomy was 75.2 months (6.3 years). Twenty-eight women (41.8%) underwent DBR in the study period. For the entire cohort, between one-year and long-term post-mastectomy, there were significant improvements in scores for body concerns (P = 0.03), cancer-related distress (P = 0.01), and total distress (P = 0.04). At long-term follow-up, women with DBR had significantly higher levels of total distress (P = 0.01), obsessiveness (P = 0.03), and cancer-related distress (P = 0.02) compared to those with mastectomy alone. There were no differences in quality of life between the two groups at any time point. Psychosocial functioning improves over time in patients treated with mastectomy in the long-term breast cancer survivorship period, which may be related to the effect of time post-treatment, rather than an effect of choice for or against DBR. © 2014 Wiley Periodicals, Inc.

  10. Distress and unmet needs during treatment and quality of life in early cancer survivorship: a longitudinal study of haematological cancer patients.

    PubMed

    Oberoi, Devesh; White, Victoria M; Seymour, John F; Miles Prince, H; Harrison, Simon; Jefford, Michael; Winship, Ingrid; Hill, David J; Bolton, Damien; Millar, Jeremy; Wong Doo, Nicole; Kay, Anne; Giles, Graham

    2017-08-21

    To examine the influence of anxiety, depression and unmet supportive care needs on future quality of life (QoL) in multiple myeloma (MM) and diffuse large B cell lymphoma (DLBCL) patients. MM and DLBCL patients recruited through the population-based Victorian Cancer Registry. Data was collected through two telephone interviews: T1) on average 7 months post diagnosis, T2) average 8 months later. QoL was examined at T2 using the Functional Assessment of Cancer Therapy (FACT-G) scale. The Hospital Anxiety and Depression Scale measured anxiety and depression and the Supportive Care Needs Survey measured unmet needs at T1. Multivariate linear regression examined associations between QoL subscales (physical, emotional, social, and functional wellbeing and overall QoL) and T1 anxiety, depression and unmet needs. Except physical wellbeing, all other QoL subscales and overall QoL were significantly associated with T1 anxiety. All QoL subscales and overall QoL were significantly associated with T1 depression. Only patient-care needs were associated with physical and social wellbeing and overall QoL. Anxiety, depression and patient-care unmet needs during treatment are associated with diminished physical and emotional well-being in the following months. Psychological distress and unmet supportive care needs experienced during treatment should be addressed to maximise future QoL. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

  11. Maintaining Bone Health in Patients With Multiple Myeloma: Survivorship Care Plan of the International Myeloma Foundation Nurse Leadership Board

    PubMed Central

    Miceli, Teresa S.; Colson, Kathleen; Faiman, Beth M.; Miller, Kena; Tariman, Joseph D.

    2014-01-01

    About 90% of individuals with multiple myeloma will develop osteolytic bone lesions from increased osteoclastic and decreased osteoblastic activity. Severe morbidities from pathologic fractures and other skeletal events can lead to poor circulation, blood clots, muscle wasting, compromised performance status, and overall poor survival. Supportive care targeting bone disease is an essential adjunct to antimyeloma therapy. In addition, the maintenance of bone health in patients with multiple myeloma can significantly improve quality of life. Oncology nurses and other healthcare providers play a central role in the management of bone disease and maintenance throughout the course of treatment. Safe administration of bisphosphonates, promotion of exercise, maintenance of adequate nutrition, vitamin and mineral supplementation, scheduled radiographic examinations, and monitoring of bone complications are among the important functions that oncology nurses and healthcare providers perform in clinical practice. PMID:21816707

  12. Maintaining bone health in patients with multiple myeloma: survivorship care plan of the International Myeloma Foundation Nurse Leadership Board.

    PubMed

    Miceli, Teresa S; Colson, Kathleen; Faiman, Beth M; Miller, Kena; Tariman, Joseph D

    2011-08-01

    About 90% of individuals with multiple myeloma will develop osteolytic bone lesions from increased osteoclastic and decreased osteoblastic activity. Severe morbidities from pathologic fractures and other skeletal events can lead to poor circulation, blood clots, muscle wasting, compromised performance status, and overall poor survival. Supportive care targeting bone disease is an essential adjunct to antimyeloma therapy. In addition, the maintenance of bone health in patients with multiple myeloma can significantly improve quality of life. Oncology nurses and other healthcare providers play a central role in the management of bone disease and maintenance throughout the course of treatment. Safe administration of bisphosphonates, promotion of exercise, maintenance of adequate nutrition, vitamin and mineral supplementation, scheduled radiographic examinations, and monitoring of bone complications are among the important functions that oncology nurses and healthcare providers perform in clinical practice.

  13. Survivorship: Sleep Disorders, Version 1.2014

    PubMed Central

    Denlinger, Crystal S.; Ligibel, Jennifer A.; Are, Madhuri; Baker, K. Scott; Demark-Wahnefried, Wendy; Friedman, Debra L.; Goldman, Mindy; Jones, Lee; King, Allison; Ku, Grace H.; Kvale, Elizabeth; Langbaum, Terry S.; Leonardi-Warren, Kristin; McCabe, Mary S.; Melisko, Michelle; Montoya, Jose G.; Mooney, Kathi; Morgan, Mary Ann; Moslehi, Javid J.; O’Connor, Tracey; Overholser, Linda; Paskett, Electra D.; Raza, Muhammad; Syrjala, Karen L.; Urba, Susan G; Wakabayashi, Mark T.; Zee, Phyllis; McMillian, Nicole; Freedman-Cass, Deborah

    2015-01-01

    Sleep disorders, including insomnia and excessive sleepiness, affect a significant proportion of patients with cancer and survivors, often in combination with fatigue, anxiety, and depression. Improvements in sleep lead to improvements in fatigue, mood, and quality of life. This section of the NCCN Guidelines for Survivorship provides screening, diagnosis, and management recommendations for sleep disorders in survivors. Management includes combinations of sleep hygiene education, physical activity, psychosocial interventions, and pharmacologic treatments. PMID:24812132

  14. Supporting models to transition breast cancer survivors to primary care: formative evaluation of a cancer care Ontario initiative.

    PubMed

    Grant, Maria; De Rossi, Stefanie; Sussman, Jonathan

    2015-05-01

    Many breast cancer (BC) survivors continue to be seen by specialists for routine follow-up care despite growing evidence that transitioning appropriate BC survivors to primary care is safe and effective. We describe the formative evaluation of an initiative involving the development and implementation of sustainable models of follow-up care for BC survivors across 14 Regional Cancer Centers (RCC) in Ontario, Canada. After extensive consultation, each RCC received catalyst funding for the initiative. Detailed work plans were developed locally and submitted to Cancer Care Ontario. Each region had a designated lead and support from primary care. Funding could be used to develop any aspect of the model. Formative evaluation of each model was conducted with descriptive analysis of the model created, including summative description of how resources were used, the number of survivors transitioned, and preliminary results from patient surveys of experience at transition. Each region developed a unique model that included clearly identified structures and processes of care. All regions used survivorship care plans and patient education materials. Three main models of follow-up care were developed: (1) direct to primary care, (2) transition clinic, and (3) shared care. A total of 3,418 BC survivors transitioned between March 2012 and September 2013. Patient experience surveys were distributed by 12 regions, gathering responses from 752 BC survivors, with 85% reporting that they felt adequately prepared for the transition. Using the approach described, wide-scale transition of appropriate BC survivors from oncology-led practice is feasible over a fairly short timeframe. Copyright © 2015 by American Society of Clinical Oncology.

  15. Institute of medicine recommendations for improving the quality of cancer care: what do they mean for the general internist?

    PubMed

    Nekhlyudov, Larissa; Wenger, Neil

    2014-10-01

    In order to evaluate and address the deficiencies in the U.S. cancer care system, particularly affecting the growing elderly population, the Institute of Medicine (IOM) convened a panel representing oncology providers, surgeons, primary care providers, researchers, policy makers and patients. The Committee concluded that cancer care is on the brink of crisis and issued recommendations targeting all stakeholders involved in cancer care. General internists play a critical role in the care of cancer patients, from the time of diagnosis, through treatment, survivorship and end of life care. We review the IOM recommendations, highlight those that are particularly relevant to the general internist, and outline clinical, research and educational opportunities where general internists should take an expanded role.

  16. Renal complications in multiple myeloma and related disorders: survivorship care plan of the International Myeloma Foundation Nurse Leadership Board.

    PubMed

    Faiman, Beth M; Mangan, Patricia; Spong, Jacy; Tariman, Joseph D

    2011-08-01

    Kidney dysfunction is a common clinical feature of symptomatic multiple myeloma. Some degree of renal insufficiency or renal failure is present at diagnosis or will occur during the course of the disease and, if not reversed, will adversely affect overall survival and quality of life. Chronic insults to the kidneys from other illnesses, treatment, or multiple myeloma itself can further damage renal function and increase the risk for additional complications, such as anemia. Patients with multiple myeloma who have light chain (Bence Jones protein) proteinuria may experience renal failure or progress to end-stage renal disease (ESRD) and require dialysis because of light chain cast nephropathy. Kidney failure in patients with presumed multiple myeloma also may result from amyloidosis, light chain deposition disease, or acute tubular necrosis caused by nephrotoxic agents; therefore, identification of patients at risk for kidney damage is essential. The International Myeloma Foundation's Nurse Leadership Board has developed practice recommendations for screening renal function, identifying positive and negative contributing risk and environmental factors, selecting appropriate therapies and supportive care measures to decrease progression to ESRD, and enacting dialysis to reduce and manage renal complications in patients with multiple myeloma.

  17. Renal complications in multiple myeloma and related disorders: Survivorship care plan of the IMF Nurse Leadership Board

    PubMed Central

    Faiman, Beth; Tariman, Joseph D.; Mangan, Patricia A.; Spong, Jacy

    2012-01-01

    Kidney dysfunction is a common clinical feature of symptomatic multiple myeloma. Some degree of renal insufficiency or renal failure is present at diagnosis or will occur during the course of the disease, and which, if not reversed, will adversely effect overall survival and quality of life. Chronic insults to the kidneys from other illnesses, treatment, or multiple myeloma itself can further damage renal function and increase the risk for additional complications, such as anemia. Patients with multiple myeloma who have light chain (Bence Jones protein) proteinuria may experience renal failure or progress to end-stage renal disease (ESRD) and require dialysis due to light chain cast nephropathy. Kidney failure in patients with presumed multiple myeloma may also result from amyloidosis, light chain deposition disease, or acute tubular necrosis caused by nephrotoxic agents; therefore identification of patients at risk for kidney damage is essential. The International Myeloma Foundation’s Nurse Leadership Board have developed these practice recommendations for screening for renal function, identifying positive and negative contributing risk and environmental factors, selecting appropriate therapies and supportive care measures to decrease progression to ESRD and dialysis, and reducing and managing renal complications in patients with multiple myeloma. PMID:21816711

  18. Fostering Growth in the Survivorship Experience: Investigating Breast Cancer Survivors' Lived Experiences Scaling Mt. Kilimanjaro from a Posttraumatic Growth Perspective

    ERIC Educational Resources Information Center

    Burke, Shaunna M.; Sabiston, Catherine M.

    2012-01-01

    The aim of this study was to use an ethnographic case study approach to explore breast cancer survivors' experiences scaling Mt. Kilimanjaro from a posttraumatic growth perspective. Three breast cancer survivors who participated in interviews and observations during a nine-day climb on the mountain were included in this study. Findings are…

  19. Moving guidelines into action: a report from Cancer Care Ontario’s event Let’s Get Moving: Exercise and Rehabilitation for Cancer Patients

    PubMed Central

    Tomasone, J.R.; Zwaal, C.; Kim, G.; Yuen, D.; Sussman, J.; Segal, R.

    2017-01-01

    The need for an improved understanding of the rehabilitation services landscape in Ontario and for promotion of Cancer Care Ontario’s newly developed Exercise for People with Cancer guideline brought Cancer Care Ontario’s Psychosocial Oncology and Survivorship Programs together to host a knowledge translation and exchange event. The primary objectives of the event were to understand recommendations from Cancer Care Ontario’s new exercise guideline, to discuss key considerations and determine strategies for the implementation of the guideline recommendations, and to explore the current state and future directions of cancer rehabilitation in Ontario. The event was attended by 124 stakeholders, including clinicians, allied health care professionals, administrators, patients, community partners, and academics representing each of the 13 regional cancer programs in Ontario. Attendees participated in two small-group activities that focused on determining the best approach for implementing the guideline recommendations into practice and discussing current barriers and the future state of cancer rehabilitation in Ontario. The activities allowed for networking and collaboration between attendees. The event provided an opportunity for the Psychosocial Oncology and Survivorship Programs to learn about the types of goals and plans that could be feasible in implementing the guideline in each region, and about ways to prioritize gaps in access to rehabilitation services and the types of implementation strategies that might be used to address the gaps. Overall, attendees were highly satisfied with the event, and the findings are being used to help inform research and practice activities with respect to guideline implementation and rehabilitation practice.

  20. Survivorship: Fatigue, Version 1.2014

    PubMed Central

    Denlinger, Crystal S.; Ligibel, Jennifer A.; Are, Madhuri; Baker, K. Scott; Demark-Wahnefried, Wendy; Friedman, Debra L.; Goldman, Mindy; Jones, Lee; King, Allison; Ku, Grace H.; Kvale, Elizabeth; Langbaum, Terry S.; Leonardi-Warren, Kristin; McCabe, Mary S.; Melisko, Michelle; Montoya, Jose G.; Mooney, Kathi; Morgan, Mary Ann; Moslehi, Javid J.; O’Connor, Tracey; Overholser, Linda; Paskett, Electra D.; Raza, Muhammad; Syrjala, Karen L.; Urba, Susan G.; Wakabayashi, Mark T.; Zee, Phyllis; McMillian, Nicole; Freedman-Cass, Deborah

    2015-01-01

    Many cancer survivors report that fatigue is a disruptive symptom even after treatment ends. Persistent cancer-related fatigue affects quality of life, because individuals become too tired to fully participate in the roles and activities that make life meaningful. Identification and management of fatigue remains an unmet need for many cancer survivors. This section of the NCCN Guidelines for Survivorship provides screening, evaluation, and management recommendations for fatigue in survivors. Management includes education and counseling, physical activity, psychosocial interventions, and pharmacologic treatments. PMID:24925198

  1. 2014 President's plenary international psycho-oncology society: moving toward cancer care for the whole patient.

    PubMed

    Bultz, Barry D; Travado, Luzia; Jacobsen, Paul B; Turner, Jane; Borras, Josep M; Ullrich, Andreas W H

    2015-12-01

    The International Psycho-oncology Society (IPOS) has just celebrated its 30th anniversary. The growth of psychosocial oncology has been exponential, and this relatively new field is becoming a core service that focuses on prevention, reducing the burden of cancer, and enhancing the quality of life from time of diagnosis, through treatment, survivorship, and palliative care. Looking back over the past 30 years, we see that cancer care globally has evolved to a new and higher standard. Today, 'cancer care for the whole patient' is being accomplished with an evidence-based model that addresses psychosocial needs and integrates psycho-oncology into the treatment and care of patients. The President's Plenary Session in Lisbon, Portugal, highlighted the IPOS Mission of promoting global excellence in psychosocial care of people affected by cancer through our research, public policy, advocacy, and education. The internationally endorsed IPOS Standard of Quality Cancer Care, for example, clearly states the necessity of integrating the psychosocial domain into routine care, and that distress should be measured as the sixth vital sign after temperature, blood pressure, pulse, respiratory rate, and pain. The plenary paper also discussed the global progress being made in Europe, North America, and Australia in providing quality cancer care for the whole patient. Collaborative partnerships between IPOS and organizations such as the European Partnership Action Against Cancer and the World Health Organization are essential in building capacity for the delivery of high-quality psycho-oncology services in the future.

  2. Study protocol for a randomised controlled trial of brief, habit-based, lifestyle advice for cancer survivors: exploring behavioural outcomes for the Advancing Survivorship Cancer Outcomes Trial (ASCOT)

    PubMed Central

    Beeken, Rebecca J; Croker, Helen; Heinrich, Maggie; Smith, Lee; Williams, Kate; Hackshaw, Allan; Hines, John; Machesney, Michael; Krishnaswamy, Madhavan; Cavanagh, Sharon; Roylance, Rebecca; Hill, Alison; Pritchard-Jones, Kathy; Wardle, Jane; Fisher, Abigail

    2016-01-01

    Introduction Positive health behaviours such as regular physical activity and a healthy diet have significant effects on cancer outcomes. There is a need for simple but effective behaviour change interventions with the potential to be implemented within the cancer care pathway. Habit-based advice encourages repetition of a behaviour in a consistent context so that the behaviour becomes increasingly automatic in response to a specific contextual cue. This approach therefore encourages long-term behaviour change and can be delivered through printed materials. ‘Healthy Habits for Life’ is a brief intervention based on habit theory, and incorporating printed materials plus a personally tailored discussion, that has been designed specifically for patients with a diagnosis of cancer. The aim of this trial was to test the effect of ‘Healthy Habits for Life’ on a composite health behaviour risk index (CHBRI) over 3 months in patients with a diagnosis of breast, colorectal or prostate cancer. Method and analysis A 2-arm, individually randomised controlled trial in patients with breast, colorectal and prostate cancer. Patients will be recruited over 18 months from 7 National Health Service Trusts in London and Essex. Following baseline assessments and allocation to intervention or usual care, patients are followed up at 3 and 6 months. The primary outcome will be change in CHBRI at 3 months. Maintenance of any changes over 6 months, and changes in individual health behaviours (including dietary intake, physical activity, alcohol consumption and smoking status) will also be explored. Ethics and dissemination Ethical approval was obtained through the National Research Ethics Service Committee South Central—Oxford B via the Integrated Research Application System (reference number 14/SC/1369). Results of this study will be disseminated through peer-reviewed publications and scientific presentations. Trial registration number 17421871. PMID:27881518

  3. Sexual rehabilitation and cancer survivorship: a state of art review of current literature and management strategies in male sexual dysfunction among prostate cancer survivors.

    PubMed

    Chung, Eric; Brock, Gerald

    2013-02-01

    The challenges for prostate cancer survivors include the surveillance of prostate cancer recurrence and management of physical, cognitive, sexual, and socioeconomic quality of life issues. Sexual function remains an important issue in men, who often continue to be interested in sex after prostate cancer treatment. The various post-prostate cancer treatment-related sexual dysfunctions are penile deformities and erectile dysfunction (ED); sexual desire and mental health; ejaculatory and orgasmic dysfunctions; and changes in partner relationship and dynamics. The aim of this study is to provide state of art review of the various male sexual dysfunctions in prostate cancer survivors and the management strategies in sexual rehabilitation. A literature search for English language original and review articles either published or e-published was performed using PubMed database. Keywords included prostate cancer, prostate cancer treatment, prostate prostatectomy (RP), sexual dysfunction, erectile dysfunction (ED), sexual desire, mental health, ejaculation, orgasmic, climacturia, and relationship. There has been considerable volume of publication in recent years on prostate cancer-related male sexual dysfunction. Penile deformities and ED shared similar pathophysiology and that penile smooth muscle fibrosis ultimately results in structural alterations and end-organ failure. Penile rehabilitation using oral phosphodiesterase type 5 (PDE5) inhibitors is considered the standard of care especially in patients who received nerve-sparing RP and should be instituted as soon as possible to protect and prevent corporal endothelial and smooth muscle damage. However, there is no consensus on the exact timing, dose, and duration of PDE5 inhibitors and its impact in non-nerve-sparing RP and other forms of prostate cancer treatment modalities. Current literature on hypoactive sexual desire, ejaculatory, and orgasmic dysfunctions in patients who received prostate cancer treatment is

  4. Cancer patient satisfaction with care.

    PubMed

    Wiggers, J H; Donovan, K O; Redman, S; Sanson-Fisher, R W

    1990-08-01

    A diagnosis of cancer places considerable stress on patients and requires them to make major adjustments in many areas of their lives. As a consequence, considerable demands are placed on health care providers to satisfy the complex care needs of cancer patients. Currently, there is little available information to indicate the extent to which cancer patients are satisfied with the quality of care they receive. The present study assessed the perceptions of 232 ambulatory cancer patients about the importance of and satisfaction with the following aspects of care: doctors technical competence and interpersonal and communication skills, accessibility and continuity of care, hospital and clinic care, nonmedical care, family care, and finances. The results indicate that all 60 questionnaire items used were considered to reflect important aspects of care, but that greater importance was given to the technical quality of medical care, the interpersonal and communication skills of doctors, and the accessibility of care. Most patients were satisfied with the opportunities provided to discuss their needs with doctors, the interpersonal support of doctors, and the technical competence of doctors. However, few patients were satisfied with the provision of information concerning their disease, treatment, and symptom control and the provision of care in the home and to family and friends.

  5. Your cancer care team

    MedlinePlus

    Academy of Nutrition and Dietetics. Nutrition during and after cancer treatment. Updated June 2016. www.eatright.org/resource/health/diseases-and-conditions/cancer/nutrition-during-and-after-cancer-treatment . Accessed July 15, ...

  6. Promoting the Shared-Care Model for Adolescent and Young Adults With Cancer: Optimizing Referrals and Care Coordination With Primary Care Providers.

    PubMed

    Kinahan, Karen E; Kircher, Sheetal; Altman, Jessica; Rademaker, Alfred; Salsman, John M; Didwania, Aarati; O'Brien, Bridget; Patel, Alpa C; Sanford, Stacy D

    2017-01-01

    The "shared-care model" for patients with cancer involves care coordination between primary care providers (PCPs) and oncologists, with the goal of optimizing survivorship care. However, a high proportion of adolescent and young adult (AYA) cancer survivors do not have a PCP. Study objectives were to increase the percentage of AYAs with a PCP documented in the electronic medical record (EMR) via the use of a best practice advisory (BPA) or "stopgap" intervention; to increase communication between providers by the number of routed clinic notes; and to assess oncology providers' attitudes/beliefs about the model and intervention. Data were collected for the 6 months before implementation of the BPA to determine the percentage of AYAs with a PCP and the number of notes routed to providers (time point 1 [T1]). The same data were collected at time point 2 (T2) after the BPA had been implemented for 6 months. Oncology providers participated in an education video module and an online survey at T1 and a survey at T2. At T1, 47.1% of 756 AYAs had a documented PCP in the EMR. At T2, the percentage increased to 55.1% (P<.002). The number of routed notes did not change significantly from T1 to T2. Providers that completed the intervention survey agreed/strongly agreed that the shared-care model is a desirable model of care (T1 = 86%; T2 = 93%) and that a BPA is useful for facilitating PCP referrals (T1 = 76%; T2 = 39%). This BPA is feasible for increasing the percentage of AYAs with a PCP documented in the EMR and could potentially lead to increased PCP referral and communication among providers for the benefit of long-term survivorship care. Providers generally agree with the shared-care model; however, the BPA implementation requires modification. Copyright © 2017 by the National Comprehensive Cancer Network.

  7. Palliative care in cervical cancer.

    PubMed

    Suhatno

    2000-05-01

    1. Cervical cancer is the most frequent cancer in females and also the most frequent among female genital cancers. 2. Ever though the modality of diagnostic procedures for early detection has improved, in fact most of the patients present in the late stages, so the disease is already incurable, and palliative care is really needed. 3. Palliative care is needed not only for the terminally ill patients, but can be started at the time the cancer is diagnosed. 4. Palliative care is a multidisciplinary approach requiring teamwork. 5. Palliative care in Indonesia, especially in Dr. Soetomo Hospital, is a new modality in the fight against cancer, so we suffer many disadvantages, e.g., disability, limitation, lack of experience. However, such problems will stimulate the team to learn more.

  8. Psychological Factors Associated with Head and Neck Cancer Treatment and Survivorship : Evidence and Opportunities for Behavioral Medicine

    ERIC Educational Resources Information Center

    Howren, M. Bryant; Christensen, Alan J.; Karnell, Lucy Hynds; Funk, Gerry F.

    2013-01-01

    Individuals diagnosed with head and neck cancer (HNC) not only face a potentially life-threatening diagnosis but must endure treatment that often results in significant, highly visible disfigurement and disruptions of essential functioning, such as deficits or complications in eating, swallowing, breathing, and speech. Each year, approximately…

  9. Psychological Factors Associated with Head and Neck Cancer Treatment and Survivorship : Evidence and Opportunities for Behavioral Medicine

    ERIC Educational Resources Information Center

    Howren, M. Bryant; Christensen, Alan J.; Karnell, Lucy Hynds; Funk, Gerry F.

    2013-01-01

    Individuals diagnosed with head and neck cancer (HNC) not only face a potentially life-threatening diagnosis but must endure treatment that often results in significant, highly visible disfigurement and disruptions of essential functioning, such as deficits or complications in eating, swallowing, breathing, and speech. Each year, approximately…

  10. Follow-up after treatment for breast cancer

    PubMed Central

    Sisler, Jeffrey; Chaput, Genevieve; Sussman, Jonathan; Ozokwelu, Emmanuel

    2016-01-01

    Objective To offer FPs a summary of evidence-based recommendations to guide their follow-up survivorship care of women treated for breast cancer. Quality of evidence A literature search was conducted in MEDLINE from 2000 to 2016 using the search words breast cancer, survivorship, follow-up care, aftercare, guidelines, and survivorship care plans, with a focus on review of recent guidelines published by national cancer organizations. Evidence ranges from level I to level III. Main message Survivorship care involves 4 main tasks: surveillance and screening, management of long-term effects, health promotion, and care coordination. Surveillance for recurrence involves only annual mammography, and screening for other cancers should be done according to population guidelines. Management of the long-term effects of cancer and its treatment addresses common issues of pain, fatigue, lymphedema, distress, and medication side effects, as well as longer-term concerns for cardiac and bone health. Health promotion emphasizes the benefits of active lifestyle change in cancer survivors, with an emphasis on physical activity. Survivorship care is enhanced by the involvement of various health professionals and services, and FPs play an important role in care coordination. Conclusion Family physicians are increasingly the main providers of follow-up care after breast cancer treatment. Breast cancer should be viewed as a chronic medical condition even in women who remain disease free, and patients benefit from the approach afforded other chronic conditions in primary care. PMID:27737976

  11. Postacute Care in Cancer Rehabilitation.

    PubMed

    Guo, Ying; Fu, Jack B; Guo, Hong; Camp, Jennifer; Shin, Ki Y; Tu, Shi-Ming; Palmer, Lynn J; Yadav, Rajesh

    2017-02-01

    Acute care is usually associated with disease progression, treatments for cancer, and medical comorbidities. Patients with cancer may develop sudden functional deficits that require rehabilitation. Some of these patients benefit from acute rehabilitation, others benefit from subacute rehabilitation. After acute rehabilitation, continuous care for these patients has not been well described. Three studies are presented to demonstrate that cancer rehabilitation is a continuous process. Rehabilitation professionals should know how to detect fall risk, monitor symptoms, and render symptom management. Patients with cancer often require rehabilitation services during their entire disease trajectory.

  12. Psychological Factors Associated with Head and Neck Cancer Treatment and Survivorship: Evidence and Opportunities for Behavioral Medicine

    PubMed Central

    Howren, M. Bryant; Christensen, Alan J.; Karnell, Lucy Hynds; Funk, Gerry F.

    2012-01-01

    Individuals diagnosed with head and neck cancer (HNC) face not only a potentially life-threatening diagnosis, but must endure treatment that often results in significant, highly visible disfigurement and disruptions of essential functioning, such as deficits or complications in eating, swallowing, breathing, and speech. Each year, approximately 650,000 new cases are diagnosed, making HNC the sixth most common type of cancer in the world. Despite this, however, HNC remains understudied in behavioral medicine. In this article, the authors review available evidence regarding several important psychosocial and behavioral factors associated with HNC diagnosis, treatment, and recovery, as well as various psychosocial interventions conducted in this patient population, before concluding with opportunities for behavioral medicine research and practice. PMID:22963591

  13. The Integration of Emotional, Physiologic, and Communication Responses to Medical Oncology Surveillance Appointments During Breast Cancer Survivorship.

    PubMed

    Clayton, Margaret F; Dingley, Catherine; Donaldson, Gary

    Breast cancer survivors regularly interact with providers during routine surveillance medical oncology visits, discussing uncertainty and anxiety about potential cancer recurrence for many years after treatment. Physiologic alteration can also occur as a stress response, triggered by an upcoming surveillance visit. Survivor-provider communication can theoretically allay emotional distress. The aim of this study was to evaluate associations between emotional (uncertainty, anxiety, concerns about recurrence) and physiologic responses (cytokine levels, lymphocyte counts), and survivor-provider communication (women's plans for their visit, negotiation of decision-making roles). Twenty-seven community-dwelling breast cancer survivors participated. Blood specimens, and self-reported data focusing on the previous month, were collected immediately before and the morning after a regularly scheduled medical oncology visit. Global concerns about cancer recurrence and acute anxiety and uncertainty were associated with changes in immune status before and after the visit. Postvisit natural killer cells increased in 70% of women, and uncertainty/anxiety decreased. Thirty-three percent of women reported a previous minor illness. Most women had a visit plan; 66% successfully negotiated decision-making roles with providers. Triggered by an upcoming medical oncology visit, women experience uncertainty, anxiety, and altered immunity, potentially placing them at risk of disease exacerbations. Not all women respond similarly to a routine surveillance visit; thus, providers must determine who may be at increased risk of emotional distress and physiologic alteration. Survivor-provider communication facilitates immediate resolution of concerns. Explanations of symptom meaning reduce anxiety and uncertainty and by extension may help resolve immune alteration. Between visits, this could be done by nurse-operated telephone-based "help lines."

  14. Survivorship: Healthy Lifestyles, Version 2.2014

    PubMed Central

    Denlinger, Crystal S.; Ligibel, Jennifer A.; Are, Madhuri; Baker, K. Scott; Demark-Wahnefried, Wendy; Dizon, Don; Friedman, Debra L.; Goldman, Mindy; Jones, Lee; King, Allison; Ku, Grace H.; Kvale, Elizabeth; Langbaum, Terry S.; Leonardi-Warren, Kristin; McCabe, Mary S.; Melisko, Michelle; Montoya, Jose G.; Mooney, Kathi; Morgan, Mary Ann; Moslehi, Javid J.; O’Connor, Tracey; Overholser, Linda; Paskett, Electra D.; Peppercorn, Jeffrey; Raza, Muhammad; Rodriguez, M. Alma; Syrjala, Karen L.; Urba, Susan G.; Wakabayashi, Mark T.; Zee, Phyllis; McMillian, Nicole R.; Freedman-Cass, Deborah A.

    2015-01-01

    Healthy lifestyle habits have been associated with improved health outcomes and quality of life and, for some cancers, a reduced risk of recurrence and death. The NCCN Guidelines for Survivorship therefore recommend that cancer survivors be encouraged to achieve and maintain a healthy lifestyle, with attention to weight management, physical activity, and dietary habits. This section of the NCCN Guidelines focuses on recommendations regarding physical activity in survivors, including assessment for the risk of exercise-induced adverse events, exercise prescriptions, guidance for resistance training, and considerations for specific populations (eg, survivors with lymphedema, ostomies, peripheral neuropathy). In addition, strategies to encourage health behavioral change in survivors are discussed. PMID:25190692

  15. Survivorship: Cognitive Function, Version 1.2014

    PubMed Central

    Denlinger, Crystal S.; Ligibel, Jennifer A.; Are, Madhuri; Baker, K. Scott; Demark-Wahnefried, Wendy; Friedman, Debra L.; Goldman, Mindy; Jones, Lee; King, Allison; Ku, Grace H.; Kvale, Elizabeth; Langbaum, Terry S.; Leonardi-Warren, Kristin; McCabe, Mary S.; Melisko, Michelle; Montoya, Jose G.; Mooney, Kathi; Morgan, Mary Ann; Moslehi, Javid J.; O’Connor, Tracey; Overholser, Linda; Paskett, Electra D.; Raza, Muhammad; Syrjala, Karen L.; Urba, Susan G.; Wakabayashi, Mark T.; Zee, Phyllis; McMillian, Nicole R.; Freedman-Cass, Deborah A.

    2015-01-01

    Cognitive impairment is a common complaint among cancer survivors and may be a consequence of the tumors themselves or direct effects of cancer-related treatment (eg, chemotherapy, endocrine therapy, radiation). For some survivors, symptoms persist over the long term and, when more severe, can impact quality of life and function. This section of the NCCN Guidelines for Survivorship provides assessment, evaluation, and management recommendations for cognitive dysfunction in survivors. Nonpharmacologic interventions (eg, instruction in coping strategies; management of distress, pain, sleep disturbances, and fatigue; occupational therapy) are recommended, with pharmacologic interventions as a last line of therapy in survivors for whom other interventions have been insufficient. PMID:24994918

  16. Caring for the breast cancer survivor’s health and well-being

    PubMed Central

    Casey, Petra M; Faubion, Stephanie S; MacLaughlin, Kathy L; Long, Margaret E; Pruthi, Sandhya

    2014-01-01

    The breast cancer care continuum entails detection, diagnosis, treatment, and survivorship. During this time, focus on the whole woman and medical concerns beyond the breast cancer diagnosis itself is essential. In this comprehensive review, we critically review and evaluate recent evidence regarding several topics pertinent to and specific for the woman living with a prior history of breast cancer. More specifically, we discuss the most recent recommendations for contraceptive options including long-acting reversible contraception and emergency contraception, fertility and pregnancy considerations during and after breast cancer treatment, management of menopausal vasomotors symptoms and vulvovaginal atrophy which often occurs even in young women during treatment for breast cancer. The need to directly query the patient about these concerns is emphasized. Our focus is on non-systemic hormones and non-hormonal options. Our holistic approach to the care of the breast cancer survivor includes such preventive health issues as sexual and bone health,which are important in optimizing quality of life. We also discuss strategies for breast cancer recurrence surveillance in the setting of a prior breast cancer diagnosis. This review is intended for primary care practitioners as well as specialists caring for female breast cancer survivors and includes key points for evidence-based best practice recommendations. PMID:25302171

  17. Perceptions of Cancer Care and Clinical Trials in the Black Community: Implications for Care Coordination Between Oncology and Primary Care Teams.

    PubMed

    Sprague Martinez, Linda; Freeman, Elmer R; Winkfield, Karen M

    2017-09-01

    communities and increasing awareness of clinical trials. However, PCPs and CHCs are often stretched to capacity with caring for their communities. This leaves the oncology community well positioned to create programs to bridge the communication gaps and provide resources necessary to support oncologic care along the cancer continuum, from prevention through survivorship. © AlphaMed Press 2017.

  18. Cancer Care in East and Central Harlem: Community Partnership Needs Assessment

    PubMed Central

    Jandorf, Lina; Freemantle, Hurdley; Sly, Jamilia; Ellison, Jennie; Wong, Carrie R.; Villagra, Cristina; Hong, Joseph; Kaleya, Sara; Poultney, Madrid; Villegas, Carmen; Brenner, Barbara; Bickell, Nina

    2015-01-01

    In the largely African American and Hispanic communities of East and Central Harlem in New York City (NYC), health inequities are glaring. Mortality from cancer is 20–30 % higher than in Manhattan and 30–40 % higher than rates in the general population in NYC. Despite advances in risk assessment, early detection, treatment, and survivorship, individuals in Harlem and similar urban communities are not benefiting equally. Guided by community-based participatory research, this study serves as an important step in understanding cancer care needs and the range of factors that impact the disparate rates of cancer in East and Central Harlem. Forty individual interviews were conducted with community leaders and residents. Major themes included: need for appropriate supportive services; health care access and financial challenges; beliefs related to stigma, trust, and accountability; and the impact of the physical environment on health. Education was seen as a critical area of need and intervention. PMID:23108854

  19. Cervical Cancer Screening

    MedlinePlus

    ... Feelings and Cancer Adjusting to Cancer Self-Image & Sexuality Day-to-Day Life Support for Caregivers Survivorship ... Coping Feelings & Cancer Adjusting to Cancer Self Image & Sexuality Day to Day Life Survivorship Support for Caregivers ...

  20. Palliative care content on cancer center websites.

    PubMed

    Vater, Laura B; Rebesco, Gina; Schenker, Yael; Torke, Alexia M; Gramelspacher, Gregory

    2017-10-09

    Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites. We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1. NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.

  1. Palliative Care in Cancer

    MedlinePlus

    ... Approvals Annual Reporting & Auditing Grant Transfer Grant Closeout Contracts & Small Business Training Cancer Training at NCI (Intramural) ... History Committees of Interest Legislative Resources Recent Public Laws Contact Overview & Mission History of NCI Contributing to ...

  2. Spirituality in childhood cancer care

    PubMed Central

    Lima, Nádia Nara Rolim; do Nascimento, Vânia Barbosa; de Carvalho, Sionara Melo Figueiredo; Neto, Modesto Leite Rolim; Moreira, Marcial Moreno; Brasil, Aline Quental; Junior, Francisco Telésforo Celestino; de Oliveira, Gislene Farias; Reis, Alberto Olavo Advíncula

    2013-01-01

    To deal with the suffering caused by childhood cancer, patients and their families use different coping strategies, among which, spirituality appears a way of minimizing possible damage. In this context, the purpose of the present study was to analyze the influence of spirituality in childhood cancer care, involving biopsychosocial aspects of the child, the family, and the health care team facing the disease. To accomplish this purpose, a nonsystematic review of literature of articles on national and international electronic databases (Scientific Electronic Library Online [SciELO], PubMed, and Latin American and Caribbean Health Sciences Literature [LILACS]) was conducted using the search terms “spirituality,” “child psychology,” “child,” and “cancer,” as well as on other available resources. After the search, 20 articles met the eligibility criteria and were included in the final sample. Our review showed that the relation between spirituality and health has lately become a subject of growing interest among researchers, as a positive influence of spirituality in the people’s welfare was noted. Studies that were retrieved using the mentioned search strategy in electronic databases, independently assessed by the authors according to the systematic review, showed that spirituality emerges as a driving force that helps pediatric patients and their families in coping with cancer. Health care workers have been increasingly attentive to this dimension of care. However, it is necessary to improve their knowledge regarding the subject. The search highlighted that spirituality is considered a source of comfort and hope, contributing to a better acceptance of his/her chronic condition by the child with cancer, as well as by the family. Further up-to-date studies facing the subject are, thus, needed. It is also necessary to better train health care practitioners, so as to provide humanized care to the child with cancer. PMID:24133371

  3. Matching the unmet needs of cancer survivors to resources using a shared care model.

    PubMed

    Bazzell, Judy L; Spurlock, Amy; McBride, Marilyn

    2015-06-01

    A substantial number of cancer survivors have unmet needs affecting quality of life. The purpose of this project was to match the unmet needs of cancer survivors in three rural counties to available evidence-based interventions and resources that improve survivor quality of life using a shared care model. The modified Survivors Unmet Needs Survey (SUNS) was used to explore the unmet needs of 52 survivors in three domains: emotional health, access and continuity of care, and information. A comprehensive search for evidence-based interventions or other services available to these survivors was conducted. Finally, efforts were made to determine whether the use of a shared care delivery model of survivorship care might improve opportunities for survivors to connect with resources. Twenty-five percent of the rural survivors reported high or very high emotional health or access and continuity of care unmet needs. ANOVA results provide evidence that there is a difference between survivor years since diagnosis and access and continuity of care unmet needs. ANOVA results also found that there is a difference between survivor age and emotional unmet needs. Access to interventions and survivorship resources were found to be limited in these rural areas. Interventions or resources found to exist require technology access or substantial travel. In many cases, they were found to be simply out of reach for most rural survivors without assistance from care providers. The unmet needs of survivors can be determined and matched with resources that improve quality of life if providers collaborate through use of a shared care model.

  4. Treatment summaries, follow-up care instructions, and patient navigation: could they be combined to improve cancer survivor's receipt of follow-up care?

    PubMed

    Jabson, Jennifer M

    2015-12-01

    Cancer survivors require follow-up care to ensure early detection of recurrence, management of late/long term effects, preventive screening for early detection of second primary malignancies, as well as other forms of preventive care. But not all survivors receive necessary follow-up care. Combining survivorship care plans and patient navigation may be a successful strategy to improve survivor's receipt of necessary follow-up care. Using data from the 2010 LIVESTRONG online survey of cancer survivors (N = 3854), this study tested associations between receipt of follow-up care instructions (FCI) and treatment summaries (TS) paired with patient navigation (PN), and survivor's receipt of cancer surveillance, preventive cancer screening, and attendance at regular medical appointments. Survivors who received FCI, TS, and patient navigation were the most likely to report attendance at all medical appointments (aOR 4.17, 95% CI 2.30, 7.57, p ≤ .001) and receipt of preventive cancer screening (aOR 3.56, 95% CI 2.28, 5.55, p ≤ .001). Likelihood of receiving follow-up care was greatest when survivors received FCI, TS, and PN. This pairing appeared to be most beneficial for survivor's attendance at medical appointments and receipt of preventive cancer screening. By improving attendance at medical appointments and prevention cancer screening, pairing SCP and PN could benefit survivors through reduced recurrence, earlier recurrence detection, and prevention of second primaries.

  5. Prediction models in cancer care.

    PubMed

    Vickers, Andrew J

    2011-01-01

    Prediction is ubiquitous across the spectrum of cancer care from screening to hospice. Indeed, oncology is often primarily a prediction problem; many of the early stage cancers cause no symptoms, and treatment is recommended because of a prediction that tumor progression would ultimately threaten a patient's quality of life or survival. Recent years have seen attempts to formalize risk prediction in cancer care. In place of qualitative and implicit prediction algorithms, such as cancer stage, researchers have developed statistical prediction tools that provide a quantitative estimate of the probability of a specific event for an individual patient. Prediction models generally have greater accuracy than reliance on stage or risk groupings, can incorporate novel predictors such as genomic data, and can be used more rationally to make treatment decisions. Several prediction models are now widely used in clinical practice, including the Gail model for breast cancer incidence or the Adjuvant! Online prediction model for breast cancer recurrence. Given the burgeoning complexity of diagnostic and prognostic information, there is simply no realistic alternative to incorporating multiple variables into a single prediction model. As such, the question should not be whether but how prediction models should be used to aid decision-making. Key issues will be integration of models into the electronic health record and more careful evaluation of models, particularly with respect to their effects on clinical outcomes.

  6. Integrated care pathways for cancer survivors - a role for patient-reported outcome measures and health informatics.

    PubMed

    Warrington, Lorraine; Absolom, Kate; Velikova, Galina

    2015-05-01

    Modern cancer treatments have improved survival rates and changed the nature of cancer care. The acute and long-term physical and psychosocial comorbidities associated with treatment place increasing demands on healthcare services to provide suitable models of follow-up care for the survivor population. We discuss the value and challenges of incorporating patient-reported outcome measures (PROMs) and eHealth interventions into routine follow-up care. We draw on our 15 years' experience of developing electronic systems for capturing patient-reported data in oncology settings, with particular reference to eRAPID a new online symptom reporting system for cancer patients. THE REDESIGN OF HEALTHCARE PATHWAYS: New stratified care pathways have been proposed for cancer survivors with an emphasis on supported self-management and shared care. THE POTENTIAL ROLE OF PROMS IN SURVIVORSHIP CARE PATHWAYS: PROMs can be used to evaluate rehabilitation services, provide epidemiological 'Big Data' and screen patients for physical and psychological morbidities to determine the need for further support. In addition, electronic PROMs systems linked to electronic patient records (EPRs) have the capability to provide tailored self-management advice to individual patients. INTEGRATION OF PROMS INTO CLINICAL PRACTICE: The successful clinical utilisation of PROMs is dependent on a number of components including; choosing appropriate questionnaires, developing evidence-based scoring algorithms, the creation of robust electronic platforms for recording and transferring data into EPRs, and training staff and patients to engage effectively with PROMs. There is increasingly positive evidence for using PROMs and eHealth approaches to support cancer patients' care during treatment. Much of what has been learnt can be applied to cancer survivorship. PROMs integrated into eHealth platforms and with EPR have the potential to play a valuable role in the development of appropriate and sustainable long

  7. Reviewing Cancer Care Team Effectiveness

    PubMed Central

    Taplin, Stephen H.; Weaver, Sallie; Salas, Eduardo; Chollette, Veronica; Edwards, Heather M.; Bruinooge, Suanna S.; Kosty, Michael P.

    2015-01-01

    Purpose: The management of cancer varies across its type, stage, and natural history. This necessitates involvement of a variety of individuals and groups across a number of provider types. Evidence from other fields suggests that a team-based approach helps organize and optimize tasks that involve individuals and groups, but team effectiveness has not been fully evaluated in oncology-related care. Methods: We undertook a systematic review of literature published between 2009 and 2014 to identify studies of all teams with clear membership, a comparator group, and patient-level metrics of cancer care. When those teams included two or more people with specialty training relevant to the care of patients with cancer, we called them multidisciplinary care teams (MDTs). After reviews and exclusions, 16 studies were thoroughly evaluated: two addressing screening and diagnosis, 11 addressing treatment, two addressing palliative care, and one addressing end-of-life care. The studies included a variety of end points (eg, adherence to quality indicators, patient satisfaction with care, mortality). Results: Teams for screening and its follow-up improved screening use and reduced time to follow-up colonoscopy after an abnormal screen. Discussion of cases within MDTs improved the planning of therapy, adherence to recommended preoperative assessment, pain control, and adherence to medications. We did not see convincing evidence that MDTs affect patient survival or cost of care, or studies of how or which MDT processes and structures were associated with success. Conclusion: Further research should focus on the association between team processes and structures, efficiency in delivery of care, and mortality. PMID:25873056

  8. Cognitive Effects of Cancer Systemic Therapy: Implications for the Care of Older Patients and Survivors

    PubMed Central

    Mandelblatt, Jeanne S.; Jacobsen, Paul B.; Ahles, Tim

    2014-01-01

    The number of patients with cancer who are age 65 years or older (hereinafter “older”) is increasing dramatically. One obvious aspect of cancer care for this group is that they are experiencing age-related changes in multiple organ systems, including the brain, which complicates decisions about systemic therapy and assessments of survivorship outcomes. There is a consistent body of evidence from studies that use neuropsychological testing and neuroimaging that supports the existence of impairment following systemic therapy in selected cognitive domains among some older patients with cancer. Impairment in one or more cognitive domains could have important effects in the daily lives of older patients. However, an imperfect understanding of the precise biologic mechanisms underlying cognitive impairment after systemic treatment precludes development of validated methods for predicting which older patients are at risk. From what is known, risks may include lifestyle factors such as smoking, genetic predisposition, and specific comorbidities such as diabetes and cardiovascular disease. Risk also interacts with physiologic and cognitive reserve, because even at the same chronological age and with the same number of illnesses, older patients vary from having high reserve (ie, biologically younger than their age) to being frail (biologically older than their age). Surveillance for the presence of cognitive impairment is also an important component of long-term survivorship care with older patients. Increasing the workforce of cancer care providers who have geriatrics training or who are working within multidisciplinary teams that have this type of expertise would be one avenue toward integrating assessment of the cognitive effects of cancer systemic therapy into routine clinical practice. PMID:25071135

  9. Cancer survivors' receipt of treatment summaries and implications for patient-centered communication and quality of care.

    PubMed

    Blanch-Hartigan, Danielle; Chawla, Neetu; Beckjord, Ellen I; Forsythe, Laura P; de Moor, Janet S; Hesse, Bradford W; Arora, Neeraj K

    2015-10-01

    The Institute of Medicine recommends cancer survivors completing treatment be provided with a treatment summary to facilitate delivery of patient-centered survivorship care. However, the relationship between treatment summary receipt and patient-centered communication (PCC) and overall quality of care (QOC) are not well understood. Cancer survivors responding to the Health Information National Trends Survey reported treatment summary receipt, QOC, and experiences of six core functions of PCC. Multivariable logistic regression assessed the relationship between treatment summary receipt and PCC. The prevalence of survivors' treatment summary receipt and demographic/clinical characteristics predictive of treatment summary receipt were also assessed. Of 359 respondents with a cancer history, 34.5% reported receiving a treatment summary. Greater treatment burden was associated with increased treatment summary receipt. Treatment summary receipt was associated with higher QOC and more PCC, both overall and for five of the six PCC functions. The receipt of cancer treatment summaries may improve PCC and QOC for survivors. The positive relationship between treatment summary receipt and survivors' PCC experience substantiates continued efforts to provide treatment summaries to survivors transitioning from active treatment to survivorship care. Future research should characterize mechanisms by which treatment summary provision may enhance PCC. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

  10. [Bereavement Care in Cancer].

    PubMed

    Onishi, Hideki; Ishida, Mayumi; Tanahashi, Iori

    2015-01-01

    Bereavement may become the most severe stressor in the lives of bereaved families, and it has a variety of influences on their psychological and physical aspects. Physical effects include worsening of physical conditions and an increase in the mortality, and psychological ones include increases in the suicide rate and morbidity of depression. Bereavement also has a social influence, such as causing changes in relationships. Therefore, it is necessary to provide bereaved families requiring support with appropriate intervention. Since bereaved families experience various types of distress, assessment of grief-related problems alone is inadequate. It is essential to assess the psychological, physical, social, and other aspects of bereaved families. Intervention can be expressed using the concept of postvention. There are various types of intervention : from care provided by non-specialists to psychiatric treatment provided by mental care specialists. Although bereavement is the strongest risk factor for depression, depressive symptoms following bereavement are often overlooked. Therefore, it is necessary to pay attention to such depression. Support is provided by not only health care professionals but also the general public in society, and it is essential to obtain knowledge of bereavement care in society. It should be noted that support not based on established knowledge may have an adverse effect on bereaved families (unhelpful support).

  11. Self-efficacy for Coping Moderates the Effects of Distress on Quality of Life in Palliative Cancer Care.

    PubMed

    Chirico, Andrea; Serpentini, Samantha; Merluzzi, Thomas; Mallia, Luca; Del Bianco, Paola; Martino, Rosalba; Trentin, Leonardo; Bucci, Enrico; DE Laurentiis, Michelino; Capovilla, Eleonora; Lucidi, Fabio; Botti, Gerardo; Giordano, Antonio

    2017-04-01

    Recent aggressive chemotherapeutic and combined treatments have resulted in increased survivorship for advanced stage breast cancer. In some patients, treatment produces an actual abatement of their cancer, while in others treatment mitigates the progression of cancer bringing those patients into palliative care where their chronic disease requires continuous management. There is also evidence that the majority of palliative-care cancer patients have a deteriorating quality of life that only precipitously declines in the final few weeks of life. The new paradigm of patient-centered care for palliative patients is resulting in a new model of treatment in which the self-efficacy seems to play an important role. The present study represents an extension of the role of self-efficacy for coping to palliative care. Using a stress-coping model, the primary aim of this study was to evaluate a process model, in which self-efficacy for coping with cancer is a moderator between stress and the quality of life in a sample of breast cancer patients in palliative care. The secondary aim was to validate a specific domain coping self-efficacy scale, the Cancer Behavior Inventory. The current study confirmed the role of self-efficacy for coping with cancer as moderator of the relationship between stress and quality of life of a sample of breast cancer patients in palliative care. In addition, this study confirmed the structure, reliability and validity of the scale.

  12. Utilizing NCCN Practice Guidelines to Measure the Quality of Colorectal Cancer Care in the Veterans Health Administration

    PubMed Central

    Jackson, George L.; Zullig, Leah L.; Zafar, S. Yousuf; Powell, Adam A.; Ordin, Diana L.; Gellad, Ziad. F.; Abbott, David; Schlosser, James M.; Hersh, Janis; Provenzale, Dawn

    2013-01-01

    Introduction Clinical practice guidelines can be used to help develop measures of quality of cancer care. This paper describes the use of a Cancer Care Quality Measurement System (CCQMS) for monitoring these measures for colorectal cancer in the Veterans Health Administration. Methods The CCQMS assessed practice guideline concordance primarily based on colon (14 indicators) and rectal (11 indicators) cancer care guidelines of the National Comprehensive Cancer Network (NCCN). Indicators were developed with input from VHA stakeholders with the goal of examining the continuum of diagnosis, neoadjuvant therapy, surgery, adjuvant therapy, and survivorship surveillance and/or end-of-life care. In addition, 9 measures of timeliness of cancer care were developed. The measures/indicators formed the basis of a computerized data abstraction tool that produced reports on quality of care in real-time as data were entered. Results The tool was developed for a 28-facility learning collaborative, the Colorectal Cancer Care Collaborative (C4), aimed at improving CRC care quality. Data on 1,373 incident stage I-IV CRC cases were entered over approximately 18 months. Data were used to target and monitor quality improvement activities. The primary opportunity for improvement involved surveillance colonoscopy and services in patients after curative intent treatment. Conclusions NCCN guidelines were successfully used to develop a measurement system for VHA research-operations quality improvement partnership. PMID:23584346

  13. A profile of cancer patient outcomes from a tertiary care teaching hospital in Malaysia.

    PubMed

    Suthahar, A; Gurpreet, K; Ambigga, D; Maniam, T; Dhachayani, S; Fuad, I; Adlina, S

    2009-07-01

    The aim of this paper was to determine the sociodemographic and cancer characteristics of patients with cancer at a tertiary care centre. For the study, 80 newly-diagnosed cancer patients were selected and interviewed using structured questionnaires that included sociodemographic and cancer characteristic profiles. At the end of the study period of two years, the survivorship status of the patients was determined. Gender, occupational status, type of cancer and stage of cancer were found to be significantly associated with the survival status among the study group of cancer patients. Results of logistic regression analysis showed that deceased patients were significantly more likely to be pensioners rather than employed, aged 60-69 years rather than 40-49 years, to have all other types of cancer rather than breast cancer, and to be in Stage 3 or 4 of the disease rather than in Stage 1 of the disease. There is a greater necessity for psychosocial research in order to achieve optimal health for patients with cancer, and in turn, to improve the survival of cancer patients.

  14. Reimagining care for adolescent and young adult cancer programs: Moving with the times.

    PubMed

    Gupta, Abha A; Papadakos, Janet K; Jones, Jennifer M; Amin, Leila; Chang, Eugene K; Korenblum, Chana; Santa Mina, Daniel; McCabe, Lianne; Mitchell, Laura; Giuliani, Meredith E

    2016-04-01

    Literature regarding the development of adolescent and young adult (AYA) cancer programs has been dominantly informed by pediatric centers and practitioners. However, the majority of young adults are seen and treated at adult cancer centers, in which cancer volumes afford the development of innovative supportive care services. Although the supportive care services in adult cancer centers are helpful to AYAs, some of the most prominent and distinct issues faced by AYAs are not adequately addressed through these services alone. This article describes how the AYA Program at Princess Margaret Cancer Centre has collaborated with existing supportive care services in addition to supplying its own unique services to meet the comprehensive needs of AYAs in the domains of: symptom management (sexuality and fatigue), behavior modification (return to work and exercise), and health services (advanced cancer and survivorship). These collaborations are augmented by patient education interventions and timely referrals. The objective of this article was to assist other centers in expanding existing services to address the needs of AYA patients with cancer.

  15. Risks of Cervical Cancer Screening

    MedlinePlus

    ... Feelings and Cancer Adjusting to Cancer Self-Image & Sexuality Day-to-Day Life Support for Caregivers Survivorship ... Coping Feelings & Cancer Adjusting to Cancer Self Image & Sexuality Day to Day Life Survivorship Support for Caregivers ...

  16. Continuing care after cancer treatment.

    PubMed

    Pateman, Brian; Wilson, Kate; McHugh, Gretl; Luker, Karen A

    2003-10-01

    Despite nearly three decades of debate and policy guidance there is evidence that, in the United Kingdom, patient hospital discharge remains problematic. District nurses, who deliver skilled home nursing care, receive referrals from hospitals for continuing nursing care needs. However, district nurses' expectations of appropriate patient referral from hospitals are not always achieved. In an attempt to improve services after hospital discharge, government policy has emphasized partnership between care providers, highlighting the need for smooth transition between care settings. To explore hospital discharge and referral procedures for patients with cancer, with particular emphasis on referrals made by hospital nurses to district nurses. In-depth interviews were carried out with nurses actively involved in the discharge process as both referrers and recipients of referrals. Twenty nurses from a regional cancer centre and 20 district nurses from three adjacent primary care trusts were interviewed. Interviews were transcribed and analysed thematically, and themes compared between the two care settings. We conclude that competing sets of expectations, not only between hospital and community nursing settings, but amongst district nurses themselves, are a major factor impeding agreement on referral criteria and satisfaction with the referral process.

  17. Cannabis in cancer care.

    PubMed

    Abrams, D I; Guzman, M

    2015-06-01

    Cannabis has been used in medicine for thousands of years prior to achieving its current illicit substance status. Cannabinoids, the active components of Cannabis sativa, mimic the effects of the endogenous cannabinoids (endocannabinoids), activating specific cannabinoid receptors, particularly CB1 found predominantly in the central nervous system and CB2 found predominantly in cells involved with immune function. Delta-9-tetrahydrocannabinol, the main bioactive cannabinoid in the plant, has been available as a prescription medication approved for treatment of cancer chemotherapy-induced nausea and vomiting and anorexia associated with the AIDS wasting syndrome. Cannabinoids may be of benefit in the treatment of cancer-related pain, possibly synergistic with opioid analgesics. Cannabinoids have been shown to be of benefit in the treatment of HIV-related peripheral neuropathy, suggesting that they may be worthy of study in patients with other neuropathic symptoms. Cannabinoids have a favorable drug safety profile, but their medical use is predominantly limited by their psychoactive effects and their limited bioavailability. © 2015 American Society for Clinical Pharmacology and Therapeutics.

  18. Hypnosis for cancer care: over 200 years young.

    PubMed

    Montgomery, Guy H; Schnur, Julie B; Kravits, Kate

    2013-01-01

    Answer questions and earn CME/CNE Hypnosis has been used to provide psychological and physical comfort to individuals diagnosed with cancer for nearly 200 years. The goals of this review are: 1) to describe hypnosis and its components and to dispel misconceptions; 2) to provide an overview of hypnosis as a cancer prevention and control technique (covering its use in weight management, smoking cessation, as an adjunct to diagnostic and treatment procedures, survivorship, and metastatic disease); and 3) to discuss future research directions. Overall, the literature supports the benefits of hypnosis for improving quality of life during the course of cancer and its treatment. However, a great deal more work needs to be done to explore the use of hypnosis in survivorship, to understand the mediators and moderators of hypnosis interventions, and to develop effective dissemination strategies.

  19. Cycles of silence: First Nations women overcoming social and historical barriers in supportive cancer care.

    PubMed

    Hammond, Chad; Thomas, Roanne; Gifford, Wendy; Poudrier, Jennifer; Hamilton, Ryan; Brooks, Carolyn; Morrison, Tricia; Scott, Tracy; Warner, Doris

    2017-02-01

    First Nations people with cancer in Canada confront several critical inequities in physical and psychosocial domains. First Nations women are at a particular disadvantage as they are disproportionately affected by social determinants of health, but how they navigate these challenges within their communities is poorly understood. Our study explores survivorship experiences of First Nations women with cancer and their caregivers. Drawing from a larger data set on survivorship, we identify several major barriers to cancer communication and support in First Nations communities. Our team conducted a participatory, arts-based study using several data collection methods (interviews, sharing sessions, photovoice, and other creative activities) with 43 participants (24 cancer survivors and 19 caregivers) from four First Nations communities in Canada. Two major themes have emerged out of our data analyses: (1) suffering without support leads to cycles of silence and (2) community-based supports can disrupt these cycles. We identified several social, historical, and institutional barriers to speaking about cancer and finding/providing support; however, communities met the challenge of silence through voluntary and unsolicited provision of support. Widespread silence around cancer reflects both the limited access First Nations people have to formal, supportive programs and services, as well as the creative ways they provide emotional, social, and financial support within their informal networks. Beyond the support of their communities, they also required institutional provision of care that is culturally safe, addressing the colonial impacts on cancer communication and the disproportionate burdens of disease in First Nations communities. Copyright © 2016 John Wiley & Sons, Ltd.

  20. Controversies in terminal cancer care.

    PubMed

    Diehl, V

    1994-03-01

    In the long term, about 75% of all cancer patients will need palliative care, but the curricula in courses of study leading to qualifications in the caring professions take no account of this, being concerned exclusively with curative strategies. Precise definition of palliative care as a medical discipline is needed, followed by an insistence on proper funding and instruction. In addition, palliation should be integrated into the early stages of patient contact, e.g., prevention, diagnosis, treatment planning, and not only implemented when attempts at curative therapy have failed. Public and political awareness must be promoted; in particular it should be recognized that the care givers themselves need support. There is a growing need for well-run hospices with purpose-trained staff. While "mercy killing" might be considered out of charity and humanity, the death of a terminally ill patient should be neither hastened nor postponed.

  1. Exploring the role of occupational therapy in caring for cancer survivors in Australia: A cross sectional study.

    PubMed

    Buckland, Nicole; Mackenzie, Lynette

    2017-05-16

    With increasing rates of cancer survival in Australia, more people are living with long-term side effects of cancer and its treatment, and cancer survivorship is now considered a distinct phase of cancer care. While occupational therapists play an integral role in multidisciplinary care for people with chronic conditions, there is little evidence documenting the occupational therapy role for people living with chronic cancer-related conditions. This study aimed to explore the views of Australian occupational therapists about current practice and what constitutes best practice for cancer survivors. A cross-sectional online survey was developed and distributed via emailed invitations to the Occupational Therapy Australia membership to collect responses from occupational therapists in a range of locations and practice settings around Australia. A total of 204 completed surveys were returned (response rate of 4%). More than 70% (n = 143) of respondents worked with people with cancer at least sometimes and most worked in acute (13.8%, n = 28) or community (11.2%, n = 23) settings. Participants rated equipment provision as the most common intervention (94%, n = 192), followed by energy conservation (91%, n = 185) and pressure care (78%, n = 160). Lack of funding for occupational therapy positions and a lack of recognition of the role of occupational therapy by health professionals and consumers were identified as key barriers to survivorship care. Research is needed to provide evidence supporting the role and practice of occupational therapy with cancer survivors. Collaborative work with multidisciplinary teams is needed to develop long-term routine treatment pathways that include occupational therapy interventions. © 2017 Occupational Therapy Australia.

  2. Outside the box: will information technology be a viable intervention to improve the quality of cancer care?

    PubMed

    Hesse, Bradford W; Hanna, Christopher; Massett, Holly A; Hesse, Nicola K

    2010-01-01

    The use of health information technology (IT) to resolve the crisis in communication inherent within the fragmented service environment of medical care in the United States is a strategic priority for the Department of Health and Human Services. Yet the deployment of health IT alone is not sufficient to improve quality in health service delivery; what is needed is a human factors approach designed to optimize the balance between health-care users, health-care providers, policies, procedures, and technologies. An evaluation of interface issues between primary and specialist care related to cancer reveals opportunities for human factors improvement along the cancer care continuum. Applications that emphasize cognitive support for prevention recommendations and that encourage patient engagement can help create a coordinated health-care environment conducive to cancer prevention and early detection. An emphasis on reliability, transparency, and accountability can help improve the coordination of activities among multiple service providers during diagnosis and treatment. A switch in emphasis from a transaction-based approach to one emphasizing long-term support for healing relationships should help improve patient outcomes during cancer survivorship and end-of-life care. Across the entire continuum of care, an emphasis on "meaningful use" of health IT-rather than on IT as an endpoint-should help put cancer on a path toward substantive continuous quality improvement. The accompanying research questions will focus on reducing the variance between the social and technical subsystems as IT is used to improve patient outcomes across the interfaces of care.

  3. Follow-up care instructions, treatment summaries, and cancer survivors' receipt of follow-up health care and late/long term effects.

    PubMed

    Jabson, Jennifer M

    2015-07-01

    Cancer survivors need follow-up care. Survivorship care plans (SCP), including follow-up care instructions (FCI) and treatment summaries (TS), were designed to improve cancer survivors' receipt of follow-up care after cancer treatment. However, there is a paucity of evidence regarding the relationship between survivors' receipt of FCI and TS and their receipt of follow-up care and late/long term effects. This study used data from the 2010 LIVESTRONG online survey of people affected by cancer, including 3541 cancer survivors who had completed treatment. Receipt of FCI was associated with greater likelihood of attendance at all regular medical appointments (aOR 2.28, 95% CI 1.60-3.23), receipt of cancer surveillance (aOR 1.64, 95% CI 1.28-2.09), being up to date on preventive cancer screening (aOR 2.63, 95% CI 2.00-3.47), and with fewer late/long term effects (IRR 0.77, 95% CI 0.69-0.85). Receipt of TS was associated with greater likelihood of attendance at all regular medical appointments (aOR 1.79, 95% CI 1.31-2.44) and being up to date on preventive cancer screening (aOR 1.43, 95% CI 1.14-1.78), but not cancer surveillance or late/long term effects. This study is among the first to document the associations between SCP and survivors' attendance at regular medical appointments, cancer surveillance, preventive cancer screenings, and late/long term effects. The findings suggest that SCP may facilitate follow-up care needed by cancer survivors after cancer treatment is completed.

  4. Treatment Summaries and Follow-Up Care Instructions for Cancer Survivors: Improving Survivor Self-Efficacy and Health Care Utilization

    PubMed Central

    Kvale, Elizabeth A.; Rocque, Gabrielle B.; Demark-Wahnefried, Wendy; Martin, Michelle Y.; Jackson, Bradford E.; Meneses, Karen; Partridge, Edward E.; Pisu, Maria

    2016-01-01

    cancer survivors (>65 years) are especially vulnerable to poor outcomes in survivorship because of the complexity of follow-up care and other chronic conditions. Delivering written treatment summaries, written follow-up care plans, and verbal explanations of follow-up care plans all independently increased the self-efficacy for chronic illness management among older survivors. In particular, delivering this information in the verbal format was significantly associated with higher self-efficacy and, subsequently, a lower likelihood of emergency room visits. Understanding the mechanism through which summaries and follow-up care plans may positively influence survivor health is critical to increasing the delivery of the information. PMID:27245567

  5. Translating genomics in cancer care.

    PubMed

    Bombard, Yvonne; Bach, Peter B; Offit, Kenneth

    2013-11-01

    There is increasing enthusiasm for genomics and its promise in advancing personalized medicine. Genomic information has been used to personalize health care for decades, spanning the fields of cardiovascular disease, infectious disease, endocrinology, metabolic medicine, and hematology. However, oncology has often been the first test bed for the clinical translation of genomics for diagnostic, prognostic, and therapeutic applications. Notable hereditary cancer examples include testing for mutations in BRCA1 or BRCA2 in unaffected women to identify those at significantly elevated risk for developing breast and ovarian cancers, and screening patients with newly diagnosed colorectal cancer for mutations in 4 mismatch repair genes to reduce morbidity and mortality in their relatives. Somatic genomic testing is also increasingly used in oncology, with gene expression profiling of breast tumors and EGFR testing to predict treatment response representing commonly used examples. Health technology assessment provides a rigorous means to inform clinical and policy decision-making through systematic assessment of the evidentiary base, along with precepts of clinical effectiveness, cost-effectiveness, and consideration of risks and benefits for health care delivery and society. Although this evaluation is a fundamental step in the translation of any new therapeutic, procedure, or diagnostic test into clinical care, emerging developments may threaten this standard. These include "direct to consumer" genomic risk assessment services and the challenges posed by incidental results generated from next-generation sequencing (NGS) technologies. This article presents a review of the evidentiary standards and knowledge base supporting the translation of key cancer genomic technologies along the continuum of validity, utility, cost-effectiveness, health service impacts, and ethical and societal issues, and offers future research considerations to guide the responsible introduction of

  6. Geriatric assessment with management in cancer care: Current evidence and potential mechanisms for future research

    PubMed Central

    Magnuson, Allison; Allore, Heather; Cohen, Harvey Jay; Mohile, Supriya G.; Williams, Grant R.; Chapman, Andrew; Extermann, Martine; Olin, Rebecca L.; Targia, Valerie; Mackenzie, Amy; Holmes, Holly M.; Hurria, Arti

    2016-01-01

    Older adults with cancer represent a complex patient population. Geriatric assessment (GA) is recommended to evaluate the medical and supportive care needs of this group. “GA with management” is a term encompassing the resultant medical decisions and interventions implemented in response to vulnerabilities identified on GA. In older, non-cancer patients, GA with management has been shown to improve a variety of outcomes, such as reducing functional decline and health care utilization. However, the role of GA with management in the older adult with cancer is less well established. Rigorous clinical trials of GA with management are necessary to develop an evidence base and support its use in the routine oncology care of older adults. At the recent U-13 conference, “Design and Implementation of Intervention Studies to Improve or Maintain Quality of Survivorship in Older and/or Frail Adults with Cancer,” a session was dedicated to developing research priorities in GA with management. Here we summarize identified knowledge gaps in GA with management studies for older patients with cancer and propose areas for future research. PMID:27197915

  7. Regional Multiteam Systems in Cancer Care Delivery

    PubMed Central

    Monson, John R.T.; Rizvi, Irfan; Savastano, Ann; Green, James S.A.; Sevdalis, Nick

    2016-01-01

    Teamwork is essential for addressing many of the challenges that arise in the coordination and delivery of cancer care, especially for the problems that are presented by patients who cross geographic boundaries and enter and exit multiple health care systems at various times during their cancer care journeys. The problem of coordinating the care of patients with cancer is further complicated by the growing number of treatment options and modalities, incompatibilities among the vast variety of technology platforms that have recently been adopted by the health care industry, and competing and misaligned incentives for providers and systems. Here we examine the issue of regional care coordination in cancer through the prism of a real patient journey. This article will synthesize and elaborate on existing knowledge about coordination approaches for complex systems, in particular, in general and cancer care multidisciplinary teams; define elements of coordination derived from organizational psychology and human factors research that are applicable to team-based cancer care delivery; and suggest approaches for improving multidisciplinary team coordination in regional cancer care delivery and avenues for future research. The phenomenon of the mobile, multisystem patient represents a growing challenge in cancer care. Paradoxically, development of high-quality, high-volume centers of excellence and the ease of virtual communication and data sharing by using electronic medical records have introduced significant barriers to effective team-based cancer care. These challenges urgently require solutions. PMID:27650833

  8. Regional Multiteam Systems in Cancer Care Delivery.

    PubMed

    Noyes, Katia; Monson, John R T; Rizvi, Irfan; Savastano, Ann; Green, James S A; Sevdalis, Nick

    2016-11-01

    Teamwork is essential for addressing many of the challenges that arise in the coordination and delivery of cancer care, especially for the problems that are presented by patients who cross geographic boundaries and enter and exit multiple health care systems at various times during their cancer care journeys. The problem of coordinating the care of patients with cancer is further complicated by the growing number of treatment options and modalities, incompatibilities among the vast variety of technology platforms that have recently been adopted by the health care industry, and competing and misaligned incentives for providers and systems. Here we examine the issue of regional care coordination in cancer through the prism of a real patient journey. This article will synthesize and elaborate on existing knowledge about coordination approaches for complex systems, in particular, in general and cancer care multidisciplinary teams; define elements of coordination derived from organizational psychology and human factors research that are applicable to team-based cancer care delivery; and suggest approaches for improving multidisciplinary team coordination in regional cancer care delivery and avenues for future research. The phenomenon of the mobile, multisystem patient represents a growing challenge in cancer care. Paradoxically, development of high-quality, high-volume centers of excellence and the ease of virtual communication and data sharing by using electronic medical records have introduced significant barriers to effective team-based cancer care. These challenges urgently require solutions.

  9. Web-Based Tailored Psychoeducation for Breast Cancer Patients at the Onset of the Survivorship Phase: A Multicenter Randomized Controlled Trial.

    PubMed

    Admiraal, Jolien M; van der Velden, Annette W G; Geerling, Jenske I; Burgerhof, Johannes G M; Bouma, Grietje; Walenkamp, Annemiek M E; de Vries, Elisabeth G E; Schröder, Carolien P; Reyners, Anna K L

    2017-10-01

    Many breast cancer patients have unmet informational and psychosocial needs after treatment completion. A psychoeducational intervention may be well suited to support these patients. The purpose of this multicenter randomized controlled trial was to examine the effectiveness of a web-based tailored psychoeducational program (ENCOURAGE) for breast cancer patients, which aims to empower patients to take control over prevailing problems. Female breast cancer patients from two hospitals in The Netherlands who recently completed (neo-)adjuvant chemotherapy were randomly assigned to standard care or 12-week access to the ENCOURAGE program providing fully automated information problem-solving strategies, resources, and services for reported problems. At six and 12 weeks, patients completed self-report questions on optimism and control over the future (primary outcome), feelings of being informed, and acceptance of the illness. At baseline and 12 weeks, distress and quality of life questionnaires were completed. About 138 patients were included. Almost all patients (67 of 69) visited ENCOURAGE as requested. No differences between the control and intervention group were observed for primary and secondary outcomes. An unplanned subgroup analysis showed that in clinically distressed patients (N = 57 at baseline; 41%), use of the ENCOURAGE program increased optimism and control over the future at 12 weeks more than in patients in the control group (Cohen's d = 0.65). Although the effectiveness was not demonstrated, a subgroup of women treated for breast cancer can probably be supported by the program. The results of the present study are a starting point for further development and use of the program. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  10. Menopause and Cancers.

    PubMed

    Einstein, Mark H; Levine, Nanci F; Nevadunsky, Nicole S

    2015-09-01

    Cancer is a disease of aging, and therefore is more prevalent after menopause. Menopausal symptoms resulting from cancer treatments are an important survivorship issue in cancer care. This article reviews the preventive strategies, utilization of health resources, and management of menopausal symptoms after cancer treatment. Preventive screening as informed by genetic and lifestyle risk, and lifestyle modification, may mitigate the risk of cancer and cancer mortality. Despite potential benefits to quality of life, hormone replacement is rarely prescribed to survivors of gynecologic malignancies. Special considerations are needed for the treatment and supportive care of menopausal symptoms in cancer survivors. Copyright © 2015 Elsevier Inc. All rights reserved.

  11. Integrating yoga into cancer care.

    PubMed

    DiStasio, Susan A

    2008-02-01

    Although yoga has been practiced in Eastern culture for thousands of years as part of life philosophy, classes in the United States only recently have been offered to people with cancer. The word yoga is derived from the Sanskrit root yuj, meaning to bind, join, and yoke. This reflection of the union of the body, mind, and spirit is what differentiates yoga from general exercise programs. Yoga classes in the United States generally consist of asanas (postures), which are designed to exercise every muscle, nerve, and gland in the body. The postures are combined with pranayama, or rhythmic control of the breath. As a complementary therapy, yoga integrates awareness of breath, relaxation, exercise, and social support--elements that are key to enhancing quality of life in patients with cancer. Yoga practice may assist cancer survivors in managing symptoms such as depression, anxiety, insomnia, pain, and fatigue. As with all exercise programs, participants need to be aware of potential risks and their own limitations. The purpose of this article is to familiarize nurses with yoga as a complementary therapy, including current research findings, types of yoga, potential benefits, safety concerns, teacher training, and ways to integrate yoga into cancer care.

  12. Severe Obesity in Cancer Care.

    PubMed

    Streu, Erin

    2016-05-01

    Increasing weight and body fat composition has an impact on cancer detection and staging. Obese women are less likely to engage in breast and cervical screening practices. Excessive adipose tissue makes physical assessment more difficult, and patients with a BMI greater than 35 kg/m2 may have deeper and wider pelvic structures, which make internal examinations problematic. A retrospective review of 324 primary surgical patients found that patients with a BMI greater than 40 kg/m2 are seven times less likely to undergo complete surgical staging for endometrial cancer compared with individuals with a BMI less than 40 kg/m2. In addition, healthcare provider bias against the need for screening, feelings of discomfort and embarrassment, as well as patient's fears of guilt, humiliation, and shame pose significant barriers to addressing the issue of obesity in clinical care with patients and family members. 
.

  13. Validation of self-reported comorbidity status of breast cancer patients with medical records: the California Breast Cancer Survivorship Consortium (CBCSC).

    PubMed

    Vigen, Cheryl; Kwan, Marilyn L; John, Esther M; Gomez, Scarlett Lin; Keegan, Theresa H M; Lu, Yani; Shariff-Marco, Salma; Monroe, Kristine R; Kurian, Allison W; Cheng, Iona; Caan, Bette J; Lee, Valerie S; Roh, Janise M; Bernstein, Leslie; Sposto, Richard; Wu, Anna H

    2016-03-01

    To compare information from self-report and electronic medical records for four common comorbidities (diabetes, hypertension, myocardial infarction, and other heart diseases). We pooled data from two multiethnic studies (one case-control and one survivor cohort) enrolling 1,936 women diagnosed with breast cancer, who were members of Kaiser Permanente Northern California. Concordance varied by comorbidity; kappa values ranged from 0.50 for other heart diseases to 0.87 for diabetes. Sensitivities for comorbidities from self-report versus medical record were similar for racial/ethnic minorities and non-Hispanic Whites, and did not vary by age, neighborhood socioeconomic status, or education. Women with a longer history of comorbidity or who took medications for the comorbidity were more likely to report the condition. Hazard ratios for all-cause mortality were not consistently affected by source of comorbidity information; the hazard ratio was lower for diabetes, but higher for the other comorbidities when medical record versus self-report was used. Model fit was better when the medical record versus self-reported data were used. Comorbidities are increasingly recognized to influence the survival of patients with breast or other cancers. Potential effects of misclassification of comorbidity status should be considered in the interpretation of research results.

  14. Physical and Mental Health Among Cancer Survivors

    PubMed Central

    Naughton, Michelle J.; Weaver, Kathryn E.

    2015-01-01

    The physical and mental health of cancer patients needs to be addressed not only during active treatment but also throughout the continuum of survivorship care. This commentary provides an overview of issues pertinent to cancer survivors, with an emphasis on mental health issues and recommendations for annual clinical screening and monitoring using recently published guidelines from the American Society of Clinical Oncology. PMID:25046097

  15. Achieving optimal delivery of follow-up care for prostate cancer survivors: improving patient outcomes

    PubMed Central

    Hudson, Shawna V; O’Malley, Denalee M; Miller, Suzanne M

    2015-01-01

    Background Prostate cancer is the most commonly diagnosed cancer in men in the US, and the second most prevalent cancer in men worldwide. High incidence and survival rates for prostate cancer have resulted in a large and growing population of long-term prostate cancer survivors. Long-term follow-up guidelines have only recently been developed to inform approaches to this phase of care for the prostate cancer population. Methods A PubMed search of English literature through August 2014 was performed. Articles were retrieved and reviewed to confirm their relevance. Patient-reported measures that were used in studies of long-term prostate cancer survivors (ie, at least 2 years posttreatment) were reviewed and included in the review. Results A total of 343 abstracts were initially identified from the database search. After abstract review, 105 full-text articles were reviewed of which seven met inclusion criteria. An additional 22 articles were identified from the references of the included articles, and 29 were retained. From the 29 articles, 68 patient-reported outcome measures were identified. The majority (75%) were multi-item scales that had been previously validated in existing literature. We identified four main areas of assessment: 1) physical health; 2) quality of life – general, physical, and psychosocial; 3) health promotion – physical activity, diet, and tobacco cessation; and 4) care quality outcomes. Conclusion There are a number of well-validated measures that assess patient-reported outcomes that document key aspects of long-term follow-up with respect to patient symptoms and quality of life. However, there are fewer patient-reported outcomes related to health promotion and care quality within the prevention, surveillance, and care coordination components of cancer survivorship. Future research should focus on development of additional patient-centered and patient-related outcomes that enlarge the assessment portfolio. PMID:25834471

  16. Achieving optimal delivery of follow-up care for prostate cancer survivors: improving patient outcomes.

    PubMed

    Hudson, Shawna V; O'Malley, Denalee M; Miller, Suzanne M

    2015-01-01

    Prostate cancer is the most commonly diagnosed cancer in men in the US, and the second most prevalent cancer in men worldwide. High incidence and survival rates for prostate cancer have resulted in a large and growing population of long-term prostate cancer survivors. Long-term follow-up guidelines have only recently been developed to inform approaches to this phase of care for the prostate cancer population. A PubMed search of English literature through August 2014 was performed. Articles were retrieved and reviewed to confirm their relevance. Patient-reported measures that were used in studies of long-term prostate cancer survivors (ie, at least 2 years posttreatment) were reviewed and included in the review. A total of 343 abstracts were initially identified from the database search. After abstract review, 105 full-text articles were reviewed of which seven met inclusion criteria. An additional 22 articles were identified from the references of the included articles, and 29 were retained. From the 29 articles, 68 patient-reported outcome measures were identified. The majority (75%) were multi-item scales that had been previously validated in existing literature. We identified four main areas of assessment: 1) physical health; 2) quality of life - general, physical, and psychosocial; 3) health promotion - physical activity, diet, and tobacco cessation; and 4) care quality outcomes. There are a number of well-validated measures that assess patient-reported outcomes that document key aspects of long-term follow-up with respect to patient symptoms and quality of life. However, there are fewer patient-reported outcomes related to health promotion and care quality within the prevention, surveillance, and care coordination components of cancer survivorship. Future research should focus on development of additional patient-centered and patient-related outcomes that enlarge the assessment portfolio.

  17. Integrating oral health throughout cancer care.

    PubMed

    Hartnett, Erin

    2015-10-01

    Oral health is often not a priority during cancer treatment; however, patients with cancer are at increased risk for oral complications during and after treatment. This article focuses on the importance of oral health care before, during, and after cancer treatment using the head, eyes, ears, nose, oral cavity, and throat, or HEENOT, approach. AT A GLANCE: Oral health is linked to overall health, and healthcare providers must be cognizant of the oral-systemic connection with patients undergoing cancer treatment, which may cause acute and chronic oral health problems. 
Oral assessment, prevention, early recognition, and treatment of oral problems must be incorporated into cancer care, particularly with the aid of an interprofessional team to meet patients' oral care needs. 
The head, eyes, ears, nose, oral cavity, and throat, or HEENOT, approach integrates oral care into patients' history taking, physical examination, and plan of cancer care.
.

  18. Effectiveness of guideline dissemination and implementation strategies on health care professionals' behaviour and patient outcomes in the cancer care context: a systematic review protocol.

    PubMed

    Tomasone, Jennifer R; Chaudhary, Rushil; Brouwers, Melissa C

    2015-08-25

    Health care professionals (HCPs) are able to make effective decisions regarding patient care through the use of systematically developed clinical practice guidelines (CPGs). These recommendations are especially important in a cancer health care context as patients are exposed to a multitude of interdisciplinary HCPs offering high-quality care throughout diagnosis, treatment, survivorship and palliative care. Although a large number of CPGs targeted towards cancer are widely disseminated, it is unknown whether implementation strategies targeting the use of these guidelines are effective in effecting HCP behaviour and patient outcomes in the cancer care context. The purpose of this systematic review will be to determine the effectiveness of different CPG dissemination and implementation interventions on HCPs' behaviour and patient outcomes in the cancer health care context. Five electronic databases (CINAHL, the Cochrane Controlled Trials Register, MEDLINE via Ovid, EMBASE via Ovid and PsycINFO via Ovid) will be searched to include all studies examining the dissemination and/or implementation of CPGs in a cancer care setting targeting all HCPs. CPG implementation strategies will be included if the CPGs were systematically developed (e.g. literature review/evidence-informed, expert panel, evidence appraisal). The studies will be limited to randomized controlled trials, controlled clinical trials and quasi-experimental (interrupted time series, controlled before-and-after designs) studies. Two independent reviewers will assess articles for eligibility, data extraction and quality appraisal. The aim of this review is to inform cancer care health care professionals and policymakers about evidence-based implementation strategies that will allow for effective use of CPGs. PROSPERO CRD42015019331.

  19. Problems in transition and quality of care: perspectives of breast cancer survivors

    PubMed Central

    Roundtree, Aimee Kendall; Giordano, Sharon H.; Price, Andrea; Suarez-Almazor, Maria E.

    2011-01-01

    Purpose We conducted a qualitative study to explore breast cancer survivors’ perceptions and attitudes about their current healthcare utilization, screening, and information needs. Methods We completed eight focus groups of breast cancer survivors. We included women, adult survivors, with an initial diagnosis of breast cancer in the year 2000, treated, and without a recurrence as per medical record. To analyze transcripts, we used grounded theory methods, wherein unexpected themes and direct answers emerged from consensus between co-coders. Results Focus groups included 33 participants, the majority of whom were white (84.8%), college-educated (66.7%), and covered by private medical insurance (75.7%) or Medicare (27.3%). Participants’ perceptions and attitudes about care were framed in terms of personal experiences (including facing barriers to screening, feeling in limbo in the healthcare system, having problems with communication with and between physicians, confusion about symptoms, and using self-prescribe remedies), personal attitudes (including strong opinions about what survivorship means, concerns about recurrence, and changes in self-perception and agency), and social influences (including modeling others’ behaviors, changes in social life, and listening to family). Conclusion Survivorship attitudes, recurrence fears, memories, and self-perceptions were influential personal factors in addition to self-efficacy. Solutions such as providing a cancer treatment summary might resolve many of the problems by consolidating and making readily available the numerous medical history and recommendations that survivors accrue over time, switching from provider to provider. Clinicians must also implement communication changes in their interactions with patients to enhance positive attitudes and behaviors, and leverage social influences. PMID:21140173

  20. Breast cancer risk assessment in primary care.

    PubMed

    Brown, Shannon Lynn; Kartoz, Connie

    2014-01-01

    Breast cancer is the most common cancer (when excluding skin cancers) in women and the second most common cause of cancer death in women, with a lifetime prevalence of 12.5% (, ; ). Breast cancer screening reduces risk of cancer death, thereby increasing rate of survival to up to 89% for women with stage 1 and 2 breast cancer (; ). Despite these data, undue harm may occur with unnecessary screening because overidentification of risk, and excessive, costly biopsies may result. Costs and benefits of screening must be weighed. Nurses at all levels can play a pivotal role in promotion of appropriate breast cancer screening and subsequently breast cancer prevention by using accurate screening tools, such as the Tyrer-Cuzick model. Although there are some limitations with this tool, screening at the primary care level has demonstrated improved clinical outcomes (). Its use can help nurses accurately assess a woman's breast cancer risk, by promoting appropriate screening at the primary care level ().

  1. Optimisation of the continuum of supportive and palliative care for patients with breast cancer in low-income and middle-income countries: executive summary of the Breast Health Global Initiative, 2014.

    PubMed

    Distelhorst, Sandra R; Cleary, James F; Ganz, Patricia A; Bese, Nuran; Camacho-Rodriguez, Rolando; Cardoso, Fatima; Ddungu, Henry; Gralow, Julie R; Yip, Cheng-Har; Anderson, Benjamin O

    2015-03-01

    Supportive care and palliative care are now recognised as critical components of global cancer control programmes. Many aspects of supportive and palliative care services are already available in some low-income and middle-income countries. Full integration of supportive and palliative care into breast cancer programmes requires a systematic, resource-stratified approach. The Breast Health Global Initiative convened three expert panels to develop resource allocation recommendations for supportive and palliative care programmes in low-income and middle-income countries. Each panel focused on a specific phase of breast cancer care: during treatment, after treatment with curative intent (survivorship), and after diagnosis with metastatic disease. The panel consensus statements were published in October, 2013. This Executive Summary combines the three panels' recommendations into a single comprehensive document covering breast cancer care from diagnosis through curative treatment into survivorship, and metastatic disease and end-of-life care. The recommendations cover physical symptom management, pain management, monitoring and documentation, psychosocial and spiritual aspects of care, health professional education, and patient, family, and caregiver education.

  2. Improving Modern Cancer Care Through Information Technology

    PubMed Central

    Clauser, Steven B.; Wagner, Edward H.; Bowles, Erin J. Aiello; Tuzzio, Leah; Greene, Sarah M.

    2011-01-01

    The cancer care system is increasingly complex, marked by multiple hand-offs between primary care and specialty providers, inadequate communication among providers, and lack of clarity about a “medical home” (the ideal accountable care provider) for cancer patients. Patients and families often cite such difficulties as information deficits, uncoordinated care, and insufficient psychosocial support. This article presents a review of the challenges of delivering well coordinated, patient-centered cancer care in a complex modern healthcare system. An examination is made of the potential role of information technology (IT) advances to help both providers and patients. Using the published literature as background, a review is provided of selected work that is underway to improve communication, coordination, and quality of care. Also discussed are additional challenges and opportunities to advancing understanding of how patient data, provider and patient involvement, and informatics innovations can support high-quality cancer care. PMID:21521595

  3. Best practice in colorectal cancer care.

    PubMed

    Taylor, Claire

    Nurses need up-to-date knowledge of colorectal cancer. This article provides an overview of the aetiology and risk factors for this disease, diagnostic and staging investigations, treatment options and future care. Managing colorectal cancer is complex. Patients can have a range of healthcare needs. Nurses play an increasingly important role in informing, supporting and coordinating care to improve patients' quality of life.

  4. Advancing a comprehensive cancer care agenda for children and their families: Institute of Medicine Workshop highlights and next steps.

    PubMed

    Kirch, Rebecca; Reaman, Gregory; Feudtner, Chris; Wiener, Lori; Schwartz, Lisa A; Sung, Lillian; Wolfe, Joanne

    2016-09-01

    This article highlights key findings from the "Comprehensive Cancer Care for Children and Their Families" March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family members, clinician investigators, advocates, and members of the public to discuss emerging evidence and care models and to determine the next steps for optimizing quality-of-life outcomes and well-being for children and families during pediatric cancer treatment, after treatment completion, and across the life spectrum. Participants affirmed the triple aim of pediatric oncology that strives for every child with cancer to be cured; provides high-quality palliative and psychosocial supportive, restorative, and rehabilitative care to children and families throughout the illness course and survivorship; and assures receipt of high-quality end-of-life care for patients with advancing disease. Workshop outcomes emphasized the need for new pediatric cancer drug development and identified critical opportunities to prioritize palliative care and psychosocial support as an integral part of pediatric cancer research and treatment, including the necessity for adequately resourcing these supportive services to minimize suffering and distress, effectively address quality-of-life needs for children and families at all stages of illness, and mitigate the long-term health risks associated with childhood cancer and its treatment. Next steps include dismantling existing silos and enhancing collaboration between clinical investigators, disease-directed specialists, and supportive care services; expanding the use of patient-reported and parent-reported outcomes; effectively integrating palliative and psychosocial care; and clinical communication skills development. CA Cancer J Clin 2016;66:398-407. © 2016 American Cancer Society. © 2016 American Cancer Society.

  5. Optimizing Cancer Care Delivery through Implementation Science

    PubMed Central

    Adesoye, Taiwo; Greenberg, Caprice C.; Neuman, Heather B.

    2016-01-01

    The 2013 Institute of Medicine report investigating cancer care concluded that the cancer care delivery system is in crisis due to an increased demand for care, increasing complexity of treatment, decreasing work force, and rising costs. Engaging patients and incorporating evidence-based care into routine clinical practice are essential components of a high-quality cancer delivery system. However, a gap currently exists between the identification of beneficial research findings and the application in clinical practice. Implementation research strives to address this gap. In this review, we discuss key components of high-quality implementation research. We then apply these concepts to a current cancer care delivery challenge in women’s health, specifically the implementation of a surgery decision aid for women newly diagnosed with breast cancer. PMID:26858933

  6. The future of cancer rehabilitation: emerging subspecialty.

    PubMed

    Gamble, Gail L; Gerber, Lynn H; Spill, Gayle R; Paul, Kelly L

    2011-05-01

    In this article, the subject of the future for the field of cancer rehabilitation is embarked upon. Future practice innovation models must involve the appropriate and comprehensive evaluation of cancer patients' rehabilitation needs using better functional measurement tools, as well as the forging of new partnerships through the presence and initiation of physiatric coordinated rehabilitation teams, particularly during the acute phases of treatment. Partnering rehabilitation teams closely with oncology colleagues during surveillance years, through the development of outpatient survivorship clinics for diagnosis and treatment of many of cancer patients' ongoing symptoms and functional limitations, will allow for more comprehensive and coordinated follow-up cancer care. Integration of rehabilitation into palliative care and continued efforts to increase oncology's awareness and acceptance of rehabilitation benefits and expertise are needed. Future education models for medical school, residency, and postresidency training are discussed, as are future research goals to help in placing cancer rehabilitation at the forefront of acute cancer care and survivorship care.

  7. Contribution of imaging to cancer care costs.

    PubMed

    Yang, Yang; Czernin, Johannes

    2011-12-01

    Health care costs in the United States are increasing faster than the gross domestic product (GDP), and the growth rate of costs related to diagnostic imaging exceeds those of overall health care expenditures. Here we show that the contribution of imaging to cancer care costs pales in comparison to those of other key cost components, such as cancer drugs. Specifically, we estimate that (18)F-FDG PET or PET/CT accounted for approximately 1.5% of overall Medicare cancer care costs in 2009. Moreover, we propose that the appropriate use of (18)F-FDG PET or PET/CT could reduce the costs of cancer care. Because the U.S. health care system is complex and because it is difficult to find accurate data elsewhere, most cost and use assessments are based on published data from the U.S. Centers for Medicare & Medicaid Services.

  8. [Spiritual care model for terminal cancer patients].

    PubMed

    Cheng, Ju-Fen; Lin, Ya-Ching; Huang, Pai-Ho; Wei, Chih-Hsin; Sun, Jia-Ling

    2014-12-01

    Providing spiritual care to patients with advanced cancer may improve the quality of life of these patients and help them experience a good death. Cancer patients are eager for additional spiritual care and for a sense of peace at the end of their life. However, spirituality is an abstract concept. The literature on spiritual care focuses primarily on elaborations of spirituality theory. Thus, first-line medical care professionals lack clear guidelines for managing the spiritual needs of terminal cancer patients. The purposes of this article were to: 1) introduce a spiritual care model based on the concept of repair and recovery of relationships that addresses the relationship between the self and God, others, id, and objects and 2) set out a four-step strategy for this model that consists of understanding, empathizing, gu