Usability and acceptance evaluation of ACESO: a Web-based breast cancer survivorship tool.

PubMed

Kapoor, Akshat; Nambisan, Priya

2018-06-01

The specific objective of this research is to design and develop a personalized Web application to support breast cancer survivors after treatment, as they deal with post-treatment challenges, such as comorbidities and side effects of treatment. A mixed-methods approach, utilizing a combination of think-aloud analysis, personal interviews, and surveys, was adopted for user acceptance and usability testing among a group of breast cancer survivors. User feedback was gathered on their perceived value of the application, and any user-interface issues that may hinder the overall usability were identified. The application's portability and capability of organizing their entire breast cancer-related medical history as well as tracking various quality of life indicators were perceived to be valuable features. The application had an overall high usability; however, certain sections of the application were not as intuitive to locate. Visual elements of the website were appreciated; however, overall experience would benefit from incorporating more sociable elements that exhibit positive re-enforcement within the end user and provide a friendlier experience. The results of the study showcase the need for more personalized tools and resources to support survivors in self-management. It also demonstrates the ability to integrate breast cancer survivorship care plans from diverse providers and paves the way to add further value-added features in consumer health applications, such as personal decision support. Using a personal decision support-based tool can serve as a training tool and resource, providing these patients with pertinent information about the various aspects of their long-term health, while educating them about any related side effects and symptoms. It is hoped that making such tools more accessible could help in engaging survivors to play an active role in managing their health and encourage shared decision-making with their providers.

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.

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.

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.

Creation and evaluation of a cancer survivorship curriculum for pediatric resident physicians.

PubMed

Schwartz, Lindsay F; Braddock, Clarence H; Kao, Roy L; Sim, Myung-Shin; Casillas, Jacqueline N

2018-06-25

There is a paucity of formal clinician education concerning cancer survivorship care, which produces care barriers and poorer outcomes for survivors of childhood cancer. To address this, we implemented a curriculum in childhood cancer survivorship care for pediatric residents at the University of California, Los Angeles (UCLA). We examined the efficacy of this curriculum following program completion. A case-based curriculum was created and integrated within existing educational structures using Kern's model. We utilized the retrospective pre-posttest method to evaluate participating residents' knowledge, clinical skills, and attitudes towards cancer survivorship topics before and after receiving the curriculum. Pre-posttest items were compared using paired t tests and one-sided binomial tests. We analyzed free-response question items for major themes using constant comparative methods. Thirty-four residents completed the curriculum and its evaluation. Each assessment item significantly increased from pre- to post-curriculum; p < 0.05. Greater than 40% of residents improved in all but one assessment item post-curriculum; p < 0.05. Residents reported the curriculum enhanced their pediatric knowledge base (M = 3.24; SD = 0.65) and would recommend it to other residency programs; M = 3.24; SD = 0.69. Major themes included residents' request for additional oncofertility information, training in counseling survivors, and cancer survivorship training opportunities. A cancer survivorship curriculum can successfully increase trainees' knowledge, clinical skills, and comfort in discussing topics relevant to survivorship care. With increasing numbers of childhood cancer survivors living into adulthood, residents will likely treat this population regardless of intended career path. This curriculum represents one method to deliver formal cancer survivorship training.

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

[Cancer Survivorship: the patient and medical care staff - how will society deal with cancer ?].

PubMed

Honda, Mayumi

2011-07-01

Instead of being preoccupied with treatment effectiveness, rates of survival, and asking how much longer will I live?, let us think in terms of how will I live my life the way I want to live it? In recent years, a new way of thinking called Cancer Survivorship has emerged in the United States, and has been drawing attention in Japan. Cancer Survivorship is a concept developed by a cancer patient support group in the United States in 1986, focusing on the experience of living with, through, and beyond cancer. Opposing society's narrow view of cancer patients as victims handed out a death sentence, Cancer Survivorship focuses on living life to the fullest from the time of cancer diagnosis until the moment of death,and works as a movement appealing to society to allow cancer survivors the right to live as they wish. This way of thinking has spread globally, and in Italy, a movement aimed at protecting cancer survivors' freedom to do paid work has unfolded. Even in Japan, with an increase in the number of cancer patients and an improved five-year survival rate, patient support groups have been emerging with the Cancer Survivorship mentality. However, Japanese society still has not given the movement sufficient recognition, and the question now is if cancer patients, even those in the terminal stage, can seize their lives and be someone who lives in the present.

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

Pediatric Cancer Survivorship Research: Experience of the Childhood Cancer Survivor Study

PubMed Central

Leisenring, Wendy M.; Mertens, Ann C.; Armstrong, Gregory T.; Stovall, Marilyn A.; Neglia, Joseph P.; Lanctot, Jennifer Q.; Boice, John D.; Whitton, John A.; Yasui, Yutaka

2009-01-01

The Childhood Cancer Survivor Study (CCSS) is a comprehensive multicenter study designed to quantify and better understand the effects of pediatric cancer and its treatment on later health, including behavioral and sociodemographic outcomes. The CCSS investigators have published more than 100 articles in the scientific literature related to the study. As with any large cohort study, high standards for methodologic approaches are imperative for valid and generalizable results. In this article we describe methodological issues of study design, exposure assessment, outcome validation, and statistical analysis. Methods for handling missing data, intrafamily correlation, and competing risks analysis are addressed; each with particular relevance to pediatric cancer survivorship research. Our goal in this article is to provide a resource and reference for other researchers working in the area of long-term cancer survivorship. PMID:19364957

Women with breast cancer: self-reported distress in early survivorship.

PubMed

Lester, Joanne; Crosthwaite, Kara; Stout, Robin; Jones, Rachel N; Holloman, Christopher; Shapiro, Charles; Andersen, Barbara L

2015-01-01

To identify and compare levels of distress and sources of problems among patients with breast cancer in early survivorship. Descriptive, cross-sectional. A National Cancer Institute-designated comprehensive cancer center. 100 breast cancer survivors were selected to represent four time points in the cancer trajectory. Distress was self-reported using the Distress Thermometer and its 38-item problem list. Analysis of variance and chi-square analyses were performed as appropriate. Distress scores, problem reports, and time groups. Participants scored in range of the cutoff of more than 4 (range = 4.1-5.1) from treatment through three months post-treatment. At six months post-treatment, distress levels were significantly lower. Significant differences were found between groups on the total problem list score (p = 0.007) and emotional (p = 0.01) and physical subscale scores (p = 0.003). Comparison of groups at different points in the cancer trajectory found similar elevated levels from diagnosis through three months. Distress remained elevated in early survivorship but significantly decreased at six months post-treatment. Interventions to reduce or prevent distress may improve outcomes in early survivorship.

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.

Assessment of the status of A National Action Plan for Cancer Survivorship in the USA

PubMed Central

Pollack, Lori A.; Rodriguez, Juan L.; Hawkins, Nikki A.; Smith, Tenbroeck; Rechis, Ruth; Miller, Andy; Willis, Anne; Miller, Helen; Hall, Ingrid J.; Fairley, Temeika L.; Stone-Wiggins, Brenda

2015-01-01

Purpose There are currently more than 12 million cancer survivors in the USA. Survivors face many issues related to cancer and treatment that are outside the purview of the clinical care system. Therefore, understanding and providing for the evolving needs of cancer survivors offers challenges and opportunities for the public health system. In 2004, the Centers for Disease Control and Prevention and the Lance Armstrong Foundation, now the Livestrong Foundation, partnered with national cancer survivorship organizations to develop the National Action Plan for Cancer Survivorship (NAPCS). This plan outlines public health strategies to address the needs of cancer survivors. To date, no assessment of NAPCS strategies and their alignment with domestic cancer survivorship activities has been conducted. Methods The activities of five national organizations with organized public health agendas about cancer survivorship were assessed qualitatively during 2003–2007. Using the NAPCS as an organizing framework, interviews were conducted with key informants from all participating organizations. Interview responses were supplemented with relevant materials from informants and reviews of the organizations’ websites. Results Strategies associated with surveillance and applied research; communication, education, and training; and programs, policy, and infrastructure represent a large amount of the organizational efforts. However, there are gaps in research on preventive interventions, evaluation of implemented activities, and translation. Conclusions Numerous NAPCS strategies have been implemented. Future efforts of national cancer survivorship organizations should include rigorous evaluation of implemented activities, increased translation of research to practice, and assessment of dissemination efforts. Implications for Cancer Survivors The results of this descriptive assessment provide cancer survivors, cancer survivorship organizations, researchers, providers, and policy

Practitioners' perspectives on community-based breast cancer survivorship care in Singapore: A focus group study.

PubMed

Chan, Alexandre; Ngai, Guo Hui; Chung, Wing Lam; Yeo, Angie; Ng, Terence; Loh, Kiley Wei-Jen; Farid, Mohamad; Soong, Yoke Lim; Fok, Rose

2018-05-01

With the long-term goal of optimising the delivery of breast cancer survivorship care in Singapore, we conducted a qualitative study to gather in-depth descriptions from community practitioners (general practitioners and community pharmacists) about their perceptions of community-based cancer survivorship care in Singapore. Sixteen participants (11 general practitioners and five community pharmacists) participated in four structured focus group discussions between August and November 2016. The focus group discussions were analysed using deductive content analysis. The majority of community practitioners do not encounter breast cancer survivors in their clinical practices. Perceived barriers to community-based survivorship care include patients' lack of confidence in primary care, financial constraints and lack of empanelment. Most community practitioners concur that the success of community-based survivorship care largely depends on the co-operation and participation of survivors. Survivorship management via standardised care pathways is not fully advocated by practitioners. Survivorship care plans are identified as useful, but they should also incorporate a non-cancer-related medical history and medication list. Community practitioners in Singapore are eager to participate in the delivery of cancer survivorship care. Future studies should develop a community-based care model that involves community practitioners and evaluate the cost-effectiveness of such a care model. The current model of cancer survivorship in Singapore is not sustainable. Differences in healthcare ecosystems, cultures and resources available in an Asian context should be taken into consideration before designing a community-based cancer survivorship program in Singapore. © 2017 John Wiley & Sons Ltd.

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

2017-12-01

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.

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.

Urological Survivorship Issues Among Adolescent Boys and Young Men Who Are Cancer Survivors.

PubMed

Sukhu, Troy; Ross, Sherry; Coward, R Matthew

2018-01-27

Urological survivorship issues encompass an area that may potentially be overlooked after treatment of childhood cancer in adolescent boys and young men. Side effects of cancer therapy may include subsequent development of erectile dysfunction (ED), hypogonadism, and infertility in adulthood. The purpose of this review is to focus on the etiology and prevalence of the range of sexual and gonadal dysfunction in adolescent boys and young men who are cancer survivors, while discussing current recommendations for evaluation and treatment. We performed a literature review of articles evaluating hypogonadism, sexual dysfunction, ED, and infertility in young men cancer survivors. There is compelling evidence that significant survivorship issues are faced by boys entering adulthood after completing cancer therapy. Overall, young men cancer survivors are much more likely to report symptoms of sexual dysfunction than the general population of men. These patients can develop ED due to physiologic and psychological changes that take place with diagnosis of a malignancy and subsequent treatment. Primary hypogonadism can arise due to pelvic radiation or chemotherapy, and central hypogonadism may arise from pituitary insufficiency after brain radiation or surgery. Infertility develops from direct damage to the Sertoli cells and germinal epithelium from radiotherapy or chemotherapy. Cancer survivors who are men should therefore be screened for these important urological survivorship issues, although exact surveillance strategies remain unclear. Urological survivorship issues including ED, hypogonadism, and infertility are common among cancer survivors and result in significant morbidity. Due to the medical complexity of cancer survivorship, the population of adolescent and young adult survivors would benefit from a network of multidisciplinary survivorship experts to aid the transition into adulthood. Improved research efforts may help to clarify risk factors and to develop

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.

Women With Breast Cancer: Self-Reported Distress in Early Survivorship

PubMed Central

Lester, Joanne; Crosthwaite, Kara; Stout, Robin; Jones, Rachel N.; Holloman, Christopher; Shapiro, Charles; Andersen, Barbara L.

2015-01-01

Purpose/Objectives To identify and compare levels of distress and sources of problems among patients with breast cancer in early survivorship. Design Descriptive, cross-sectional. Setting A National Cancer Institute–designated comprehensive cancer center. Sample 100 breast cancer survivors were selected to represent four time points in the cancer trajectory. Methods Distress was self-reported using the Distress Thermometer and its 38-item problem list. Analysis of variance and chi-square analyses were performed as appropriate. Main Research Variables Distress scores, problem reports, and time groups. Findings Participants scored in range of the cutoff of more than 4 (range = 4.1–5.1) from treatment through three months post-treatment. At six months post-treatment, distress levels were significantly lower. Significant differences were found between groups on the total problem list score (p = 0.007) and emotional (p = 0.01) and physical subscale scores (p = 0.003). Conclusions Comparison of groups at different points in the cancer trajectory found similar elevated levels from diagnosis through three months. Distress remained elevated in early survivorship but significantly decreased at six months post-treatment. Implications for Nursing Interventions to reduce or prevent distress may improve outcomes in early survivorship. PMID:25542330

The state of cancer survivorship programming in Commission on Cancer-accredited hospitals in Georgia.

PubMed

Kirsch, Logan J; Patterson, Angela; Lipscomb, Joseph

2015-03-01

In Georgia, there are more than 356,000 cancer survivors. Although many encounter challenges as a result of treatment, there is limited data on the availability of survivorship programming. This paper highlights findings from two surveys assessing survivorship care in Commission on Cancer (CoC)-accredited hospitals in Georgia. In 2010, 38 CoC-accredited hospitals were approached to complete a 36-item survey exploring knowledge of national standards and use of survivorship care plans (SCPs), treatment summaries (TSs), and psychosocial assessment tools. In 2012, 37 CoC-accredited hospitals were asked to complete a similar 21-item survey. Seventy-nine percent (n = 30) of cancer centers completed the 2010 survey. Sixty percent (n = 18) reported having a cancer survivorship program in place or in development. Forty-three percent (n = 13) provided survivors with a SCP and 40% (n = 12) a TS. Sixty percent (n = 18) reported either never or rarely using a psychosocial assessment tool. Sixty-two percent (n = 23) completed the 2012 survey. Ninety-six percent (n = 22) were aware of the new CoC guideline 3.3. Thirty-nine percent (n = 9) provided a SCP and/or TS. Eighty-seven percent (n = 20) stated they were very confident or somewhat confident their organization could implement a SCP and/or TS by 2015. The data indicated the importance of collaboration and shared responsibility for survivorship care. Broad implementation of SCPs and TSs can help address the late and long-term effects of treatment. Increasing knowledge on survivorship care is imperative as the Georgia oncology community engages oncologists and primary care providers to achieve higher quality of life for all survivors.

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.

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.

Cancer Survivorship Care: Person Centered Care in a Multidisciplinary Shared Care Model.

PubMed

Loonen, Jacqueline J; Blijlevens, Nicole Ma; Prins, Judith; Dona, Desiree Js; Den Hartogh, Jaap; Senden, Theo; van Dulmen-Den Broeder, Eline; van der Velden, Koos; Hermens, Rosella Pmg

2018-01-16

Survivors of childhood and adult-onset cancer are at lifelong risk for the development of late effects of treatment that can lead to serious morbidity and premature mortality. Regular long-term follow-up aiming for prevention, early detection and intervention of late effects can preserve or improve health. The heterogeneous and often serious character of late effects emphasizes the need for specialized cancer survivorship care clinics. Multidisciplinary cancer survivorship care requires a coordinated and well integrated health care environment for risk based screening and intervention. In addition survivors engagement and adherence to the recommendations are also important elements. We developed an innovative model for integrated care for cancer survivors, the "Personalized Cancer Survivorship Care Model", that is being used in our clinic. This model comprises 1. Personalized follow-up care according to the principles of Person Centered Care, aiming to empower survivors and to support self management, and 2. Organization according to a multidisciplinary and risk based approach. The concept of person centered care is based on three components: initiating, integrating and safeguarding the partnership with the patient. This model has been developed as a universal model of care that will work for all cancer survivors in different health care systems. It could be used for studies to improve self efficacy and the cost-effectiveness of cancer survivorship care.

Learning the Landscape: Implementation Challenges of Primary Care Innovators around Cancer Survivorship Care

PubMed Central

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.

2016-01-01

PURPOSE This study describes the experiences of early implementers of primary care-focused cancer survivorship delivery models. METHODS 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 multi-step immersion/crystallization analytic approach, guided by a primary care organizational change model. RESULTS 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 sub-specialty 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. CONCLUSIONS 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. PMID:27277895

Unequal cancer survivorship care: addressing cultural and sociodemographic disparities in the clinic.

PubMed

Surbone, Antonella; Halpern, Michael T

2016-12-01

The number of individuals diagnosed with cancer is growing worldwide. Cancer patients from underserved populations have widely documented disparities through the continuum of cancer care. As the number of cancer survivors (i.e., individuals who have completed cancer treatment) from underserved populations also continue to grow, these individuals may continue to experience barriers to survivorship care, resulting in persistent long-term negative impacts on health and quality of life. In addition, there is limited participation of survivors from underserved populations in clinical trials and other research studies. To address disparities and change practices in survivorship care, a better understanding of the roles of both socioeconomic status (SES) and of culture in cancer care disparities and the relevance of these to providing high-quality care is needed. SES and culture often overlap but are not identical; understanding the impact of each is especially relevant to survivorship care. To enhance health equity among cancer survivors, clinicians need to practice culturally competent care, address cultural beliefs and practices that may influence survivors' beliefs and activities, gain awareness of historical patterns of medical care in the survivor's community, and consider how barriers to cross-cultural communications may hinder communication in clinical settings. While the design and implementation of survivorship care programs emphasizing effectiveness and equity is complex and potentially time consuming, it is critical for providing optimal care for all survivors, including those from the most vulnerable populations.

Survivorship

MedlinePlus

... in your life following cancer treatment and find information about the Institute of Medicine report on survivorship. Español Follow-up Care After Cancer Treatment This section outlines the importance of follow-up care after cancer treatment along ...

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

PubMed

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

2016-01-01

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. 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. 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. 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. "Clear and effective" communication of survivorship care for safety-net patients requires dedicated staff trained to address wide-ranging information needs and uncertainties.

About Survivorship

MedlinePlus

... that the cancer will come back after treatment Guilt about surviving, having lost friends and loved ones ... Cancer Recurrence Healthy Living Living With Chronic Cancer Making a Difference Survivor Artwork Survivorship Resources Trusted, compassionate ...

Nurses attitudes and practices towards provision of survivorship care for people with a haematological cancer on completion of treatment.

PubMed

Chan, Raymond Javan; Button, Elise; Thomas, Alison; Gates, Priscilla; Yates, Patsy

2018-05-01

The purpose of this study is to assess cancer nurses' perceptions of responsibility, confidence levels and practice in relation to survivorship care for people with a haematological malignancy on completion of treatment. A prospective cross-sectional survey was conducted. An online survey was distributed to members of two Australian professional bodies. A total of 310 cancer nurses participated in the study, representing a response rate of 28%. The participants generally agreed that all survivorship care items were part of their role. Of the 17 survivorship care items, the three items receiving the lowest confidence scores were discussing fertility issues, discussing employment and financial issues and discussing how to identify signs of cancer recurrence. The least performed survivorship care items were discussing fertility issues, communicating survivorship care with primary healthcare team (i.e. general practitioners) and discussing sexuality issues. Older age, more years of experience, having a post-graduate qualification and working in non-metropolitan area were associated with higher levels of perception of responsibilities and confidence (p < 0.05). The top ranked barriers to survivorship care were reported to be lack of end-of-treatment consultation dedicated to survivorship care, time and an appropriate physical space for delivering care. Cancer nurses perceive key aspects of survivorship care to be part of their role, however there remains variations in practice and confidence with respect to implementation of survivorship care practices. Interventions that focus on enhancing the capability of cancer nurses and eliminating barriers identified in this study have the potential to improve quality survivorship care provision.

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.

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

Passing through: meanings of survivorship and support among Filipinas with breast cancer.

PubMed

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

2012-02-01

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.

Size-dependent survivorship in the web-building spiderAgelena limbata.

PubMed

Tanaka, Koichi

1992-07-01

Stage-specific mortality rates and mortality factors for the web-building spiderAgelena limbata, which is suggested to be food-limited, were studied, and the relationship between body size of spiders and survivorship for instar 3 to adults was examined. The mortality rate of the egg sac stage including eggs, deutova (prenymphal stage), and overwintering instar 1 nymphs was low. The low mortality of this stage was partly due to maternal care that reduced the mortality caused by predation and/or abiotic factors. From emergence of instar 1 nymphs from egg sacs to reproduction, the stagespecific mortality rates were almost constant, 32-47%, and the time-specific mortality rates were also constant. These results suggest a Deevey (1947) type II survivorship curve inA. limbata, in contrast to other reports on the wandering or burrowing spiders which suggested type III curves. Important mortality factors for nymphs and adults were parasitism by an ichneumonid wasp and predation by spiders. There were great variations in body size (carapace width) ofA. limbata in the field. Smaller individuals survived at a lower rate to the next stage than larger individuals. This tendency was clearer for the population living under poorer prey availability.A. limbata was unlikely to starve to death in the field because every stage ofA. limbata could survive starvation for a long time in the laboratory, 22-65 days on average. I suggest that the size-dependent survivorship of this spider is associated with vulnerability of smaller individuals to parasitism and predation.

Work Disability Associated with Cancer Survivorship and Other Chronic Conditions

PubMed Central

Short, Pamela Farley; Vasey, Joseph J.; BeLue, Rhonda

2014-01-01

Summary The long-term effects of cancer and its treatment on employment and productivity are a major concern for the 40% of cancer survivors in the U.S. who are working age. This study’s objectives were (1) to quantify the increase in work disability attributable to cancer in a cohort of adult survivors who were an average of 46 months post-diagnosis and (2) to compare disability rates in cancer survivors to individuals with other chronic conditions. Data from the Penn State Cancer Survivor Study (PSCSS) and the Health and Retirement Study (HRS) were compared. The PSCSS sample included 647 survivors age 55–65, diagnosed at four medical centers in Pennsylvania and Maryland. There were 5988 similarly aged subjects without cancer in the HRS. Adjusted odds ratios for work disability were estimated for cancer survivorship, heart disease, stroke, diabetes, lung disease, and arthritis/rheumatism with multivariate logistic regression. Even for cancer-free survivors, the disability rate was significantly higher in comparison to adults with no chronic conditions (female OR=1.94; male OR=1.89). There were few significant differences between disability rates for cancer and other conditions. The elevated disability rate is another argument for viewing cancer survivorship as a chronic condition potentially requiring a broad range of psychosocial services. PMID:17429835

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

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

DTIC Science & Technology

2014-09-23

edema, cognitive dysfunction, pain , fatigue, sleep disturbance, and vocal difficulties (72). Cancer survivorship Cancer survivorship became a...involves physical symptoms such as: fatigue, insomnia, pain , cognitive impairments, and edema, as well as emotional symptoms such as depression and...conditions such as high blood pressure, back pain , diabetes, and obesity (65). Cancer survivors often report living with increased health concerns and the

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.

Improving the Quality of Survivorship for Older Adults with Cancer

PubMed Central

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

2016-01-01

In May 2015, the Cancer and Aging Research Group (CARG), 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 decline or improve health status, especially interventions focused on optimizing physical performance, nutritional status, and cognition while undergoing cancer treatment; 2) utilize 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 prior two U13 meetings, this conference provides the framework for future research to improve the evidence base for the clinical care of older adults with cancer. PMID:27172129

A Tough Transition: Cancer Survivorship Plans Slow to Take Hold

Cancer.gov

The Institute of Medicine recommends that all patients completing cancer treatment receive a survivorship care plan to help navigate post-treatment life. But the progress in refining and implementing these plans has been mixed.

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

2017-11-01

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;123:4268-4276. © 2017 American Cancer Society. © 2017 American Cancer Society.

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

Developing a post-treatment survivorship care plan to help breast cancer survivors understand their fertility.

PubMed

Gorman, Jessica R; Julian, Anne K; Roberts, Samantha A; Romero, Sally A D; Ehren, Jennifer L; Krychman, Michael L; Boles, Sarah G; Mao, Jun; Irene Su, H

2018-02-01

Reproductive-aged breast cancer survivors (BCS) who have completed initial cancer treatment frequently want to know about their future fertility potential. The purpose of this qualitative study was to assess if the fertility-related content presented in the survivorship care plan prototype met the informational needs of post-treatment BCS and to provide an opportunity for the target audience to review and react to the proposed content and design. We conducted and analyzed transcripts from seven focus groups with BCS to evaluate their reactions to the survivorship care plan prototype. We independently coded transcripts for consistent themes and sub-themes and used a consensus-building approach to agree on interpretation of results. We identified five themes that describe the post-treatment BCS' responses to the prototype survivorship care plan in the context of their informational needs and experiences: (1) the prototype's fertility-related information is relevant; (2) desire for clinical parameters to help survivors understand their infertility risk; (3) fertility-related information is important throughout survivorship; (4) evidence-based content from a neutral source is trustworthy; and (5) the recommendation to see a fertility specialist is helpful, but cost is a barrier. BCS have concerns and needs related to their fertility potential after initial breast cancer treatment. The evidence-based information offered in our prototype survivorship care plan was acceptable to BCS and has significant potential to address these needs. Additional primary data that identify post-cancer treatment indicators of fertility would advance this effort.

Moving survivorship care plans forward: focus on care coordination.

PubMed

Salz, Talya; Baxi, Shrujal

2016-07-01

After completing treatment for cancer, the coordination of oncology and primary care presents a challenge for cancer survivors. Many survivors need continued oncology follow-up, and all survivors require primary care. Coordinating the shared care of a cancer survivor, or facilitating an informed handoff from oncology to primary care, is essential for cancer survivors. Survivorship care plans are personalized documents that summarize cancer treatment and outline a plan of recommended ongoing care, with the goal of facilitating the coordination of post-treatment care. Despite their face validity, five trials have failed to demonstrate the effectiveness of survivorship care plans. We posit that these existing trials have critical shortcomings and do not adequately address whether survivorship care plans improve care coordination. Moving forward, we propose four criteria for future trials of survivorship care plans: focusing on high-needs survivor populations, tailoring the survivorship care plan to the care setting, facilitating implementation of the survivorship care plan in clinical practice, and selecting appropriate trial outcomes to assess care coordination. When trials meet these criteria, we can finally assess whether survivorship care plans help cancer survivors receive optimal oncology and primary care. © 2016 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.

Lesbian, Gay, Bisexual, and Transgender (LGBT) Survivorship.

PubMed

Kamen, Charles

2018-02-01

To discuss lesbian, gay, bisexual, and transgender (LGBT)-specific survivorship issues including: integrating sexual and gender minority identities with cancer survivor identities; coordinating medical care and disclosing identities to health care providers; dealing with late effects of treatment; and addressing LGBT family and relationship issues. Published articles, quotes from an online survey of 311 LGBT survivors. The transition from active cancer treatment to survivorship presents challenges, and LGBT cancer survivors may face additional challenges as they enter the survivorship phase. Oncology nurses can improve the quality of survivorship care delivered to LGBT survivors and their caregivers by addressing the disparities and gaps in health care. Copyright © 2017 Elsevier Inc. All rights reserved.

Development of community plans to enhance survivorship from colorectal cancer: community-based participatory research in rural communities.

PubMed

Lengerich, Eugene J; Kluhsman, Brenda C; Bencivenga, Marcyann; Allen, Regina; Miele, Mary Beth; Farace, Elana

2007-09-01

In 2002, 10.4% of the 10 million persons alive who have ever been diagnosed with cancer had colorectal cancer (CRC). Barriers, such as distance, terrain, access to care and cultural differences, to CRC survivorship may be especially relevant in rural communities. We tested the hypothesis that teams from rural cancer coalitions and hospitals would develop a Community Plan (CP) to enhance CRC survivorship. We used community-based participatory research and the PRECEDE-PROCEED model to train teams from rural cancer coalitions and hospitals in Pennsylvania and New York. We measured knowledge at three points in time and tested the change with McNemar's test, corrected for multiple comparisons (p < 0.0167). We also conducted a qualitative review of the CP contents. Fourteen (93.3%) of the 15 coalitions or hospitals initially recruited to the study completed a CP. Knowledge in public health, sponsorship of A National Action Plan for Cancer Survivorship, and CRC survivorship and treatment increased. Teams identified perceived barriers and community assets. All teams planned to increase awareness of community assets and almost all planned to enhance treatment-related care and psychosocial care for the CRC survivor; 50% planned to enhance primary care and CRC screening. The study demonstrated the interest and ability of rural organizations to plan to enhance CRC survivorship, including linkage of CRC survivorship to primary care. Rural cancer coalitions and hospitals may be a vehicle to develop local action for A National Action Plan. Access to more comprehensive care for CRC cancer survivors in rural communities appears to be facilitated by the community-based initiative described and investigated in this study. Efforts such as these could be replicated in other rural communities and may impact the care and quality of life of survivors with many types of cancers. While access to health services may be increased through community-based initiatives, we still need to measure

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,…

A review of breast cancer survivorship issues from survivors' perspectives.

PubMed

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; Lee, Min Hyuk

2014-09-01

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.

Epidemiology and survivorship of soft tissue sarcomas in adults: a national cancer database reporta

PubMed Central

Corey, Robert M; Swett, Katrina; Ward, William G

2014-01-01

The National Cancer Data Base (NCDB) of the American College of Surgeons gather demographic and survival data on ∼70% of cancers in the USA. We wanted to investigate the demographic and survivorship data on this potentially more representative cohort of patients with soft tissue sarcomas. We selected 34 of the most commonly encountered soft tissue sarcomas reported to the NCDB, provided that each entity contained a minimum of 50 cases. This report summarizes the demographic and survivorship data on 63,714 patients with these 34 histologically distinct soft tissue sarcomas reported to the NCDB from 1998 to 2010. The overall survivorships of these sarcomas were near the lower limits of many prior reports due to the all-inclusive, minimally biased inclusion criteria. The overall best prognosis was Dermatofibrosarcoma NOS (not otherwise specified). (5-year survivorship 92%). The worst prognosis was Dedifferentiated Chondrosarcoma (5-year survivorship 19%). New observations included Biphasic Synovial Sarcoma demonstrating a better 5-year survivorship (65%) compared to spindle-cell synovial sarcoma (56%, P < 0.031) and Synovial Sarcoma, NOS (52%, P < 0.001). The demographic and 2- and 5-year survivorship data for all 34 soft tissue sarcomas are presented herein. This extent of demographic and survival data in soft tissue sarcomas is unprecedented. Because of the large number of cases and the inclusive nature of the NCDB, without restriction to certain stages, categories, or treatments, it is less subject to selection bias. Therefore, these data are thought to be more reflective of the true overall prognosis given the current management of sarcoma across the NCDB contributing sites. PMID:25044961

A dyadic approach to understanding the impact of breast cancer on relationships between partners during early survivorship.

PubMed

Keesing, Sharon; Rosenwax, Lorna; McNamara, Beverley

2016-08-25

The shared impact of breast cancer for women and their male partners is emerging as an important consideration during the experience of a breast cancer diagnosis, particularly during survivorship. This study aimed to explore the experiences of women and their partners during early survivorship and contributes a range of insights into the lives of those intimately affected by breast cancer. In-depth interviews were completed with Australian women survivors of breast cancer (n = 8) and their partners (n = 8), between six months and five years following cessation of treatment. Questions included a focus on the women and their partners' daily experiences during early survivorship, including the management of ongoing symptoms, engagement in leisure and social interests, returning to work, communicating with each other, maintenance of the current relationship and other important roles and responsibilities. Thematic analysis was employed to determine key themes arising from the dyadic accounts of women and their partners' experiences during early breast cancer survivorship. Women and their partners experienced many changes to their previous roles, responsibilities and relationships during early breast cancer survivorship. Couples also reported a range of communication, intimacy and sexuality concerns which greatly impacted their interactions with each other, adding further demands on the relationship. Three significant themes were determined: (1) a disconnection within the relationship - this was expressed as the woman survivor of breast cancer needing to prioritise her own needs, sometimes at the expense of her partner and the relationship; (2) reformulating the relationship - this reflects the strategies used by couples to negotiate changes within the relationship; and (3) support is needed to negotiate the future of the relationship - couples emphasised the need for additional support and resources to assist them in maintaining their relationship during early

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

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. © 2015 American Cancer Society.

Patient-Reported Outcomes and Survivorship in Radiation Oncology: Overcoming the Cons

PubMed Central

Siddiqui, Farzan; Liu, Arthur K.; Watkins-Bruner, Deborah; Movsas, Benjamin

2014-01-01

Purpose Although patient-reported outcomes (PROs) have become a key component of clinical oncology trials, many challenges exist regarding their optimal application. The goal of this article is to methodically review these barriers and suggest strategies to overcome them. This review will primarily focus on radiation oncology examples, will address issues regarding the “why, how, and what” of PROs, and will provide strategies for difficult problems such as methods for reducing missing data. This review will also address cancer survivorship because it closely relates to PROs. Methods Key articles focusing on PROs, quality of life, and survivorship issues in oncology trials are highlighted, with an emphasis on radiation oncology clinical trials. Publications and Web sites of various governmental and regulatory agencies are also reviewed. Results The study of PROs in clinical oncology trials has become well established. There are guidelines provided by organizations such as the US Food and Drug Administration that clearly indicate the importance of and methodology for studying PROs. Clinical trials in oncology have repeatedly demonstrated the value of studying PROs and suggested ways to overcome some of the key challenges. The Radiation Therapy Oncology Group (RTOG) has led some of these efforts, and their contributions are highlighted. The current state of cancer survivorship guidelines is also discussed. Conclusion The study of PROs presents significant benefits in understanding and treating toxicities and enhancing quality of life; however, challenges remain. Strategies are presented to overcome these hurdles, which will ultimately improve cancer survivorship. PMID:25113760

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

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

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. © 2016 American Cancer Society, Inc.

Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire.

PubMed

van Leeuwen, Marieke; Husson, Olga; Alberti, Paola; Arraras, Juan Ignacio; Chinot, Olivier L; Costantini, Anna; Darlington, Anne-Sophie; Dirven, Linda; Eichler, Martin; Hammerlid, Eva B; Holzner, Bernhard; Johnson, Colin D; Kontogianni, Meropi; Kjær, Trille Kristina; Morag, Ofir; Nolte, Sandra; Nordin, Andrew; Pace, Andrea; Pinto, Monica; Polz, Katja; Ramage, John; Reijneveld, Jaap C; Serpentini, Samantha; Tomaszewski, Krzysztof A; Vassiliou, Vassilios; Verdonck-de Leeuw, Irma M; Vistad, Ingvild; Young, Teresa E; Aaronson, Neil K; van de Poll-Franse, Lonneke V

2018-06-04

The number of cancer survivors is growing steadily and increasingly, clinical trials are being designed to include long-term follow-up to assess not only survival, but also late effects and health-related quality of life (HRQOL). Therefore it is is essential to develop patient-reported outcome measures (PROMs) that capture the full range of issues relevant to disease-free cancer survivors. The objectives of this project are: 1) to develop a European Organisation for Research and Treatment of Cancer (EORTC) questionnaire that captures the full range of physical, mental and social HRQOL issues relevant to disease-free cancer survivors; and 2) to determine at which minimal time since completion of treatment the questionnaire should be used. We reviewed 134 publications on cancer survivorship and interviewed 117 disease-free cancer survivors with 11 different types of cancer across 14 countries in Europe to generate an exhaustive, provisional list of HRQOL issues relevant to cancer survivors. The resulting issue list, the EORTC core questionnaire (QLQ-C30), and site-specific questionnaire modules were completed by a second group of 458 survivors. We identified 116 generic survivorship issues. These issues covered body image, cognitive functioning, health behaviors, negative and positive outlook, health distress, mental health, fatigue, sleep problems, physical functioning, pain, several physical symptoms, social functioning, and sexual problems. Patients rated most of the acute symptoms of cancer and its treatment (e.g. nausea) as no longer relevant approximately one year after completion of treatment. Compared to existing cancer survivorship questionnaires, our findings underscore the relevance of assessing issues related to chronic physical side effects of treatment such as neuropathy and joint pain. We will further develop a core survivorship questionnaire and three site-specific modules for disease-free adult cancer survivors who are at least one year post-treatment.

Cancer survivorship services for indigenous peoples: where we stand, where to improve? A systematic review.

PubMed

Cavanagh, Bridget M; Wakefield, Claire E; McLoone, Jordana K; Garvey, Gail; Cohn, Richard J

2016-04-01

There are few support programs with evidence-based practices which address the needs of cancer survivors from indigenous populations. This systematic review analysed the experiences and current support services for cancer survivors from indigenous populations following the cessation of cancer treatment. The data sourced for this article was identified from a systematic search of five databases (MEDLINE, MEDLINE In-Process, PyscINFO, CINAHL, and EMBASE). Studies were selected if they described the experiences of indigenous cancer survivors, their families, and/or clinicians primarily responsible for their care. In total 208 unique abstracts were screened, from which 17 studies were identified as having fulfilled all selection criteria. Of the 17 articles reviewed, 12 described qualitative data and 5 provided quantitative data. Common themes identified included the importance of family support throughout the survivorship period, the negative effect of community stigmatization, fatalistic attitudes towards cancer, and the importance of spirituality in coping with, and understanding, the cancer experience. Potential barriers to accessing care included distance and difficulties revisiting the survivor's cancer experience due to an associated fear of cancer recurrence. Indigenous cancer survivors would benefit from survivorship programs more specifically tailored to their individual circumstances, such as personalized spiritual care, facilitation of increased involvement of family members, and connection to other indigenous cancer survivors. The results from this review indicate that there is a need for survivorship care to be shaped specifically for the needs of indigenous cancer survivors.

Follow-up care practices and barriers to breast cancer survivorship: perspectives from Asian oncology practitioners.

PubMed

Ng, Terence; Toh, Ming Ren; Cheung, Yin Ting; Chan, Alexandre

2015-11-01

The aim of this study is to evaluate the perspectives of Asian oncology practitioners on the physical and psychosocial issues experienced by breast cancer survivors (BCS), current survivorship care practices, and the barriers to follow-up care. This was a cross-sectional survey study. Oncology practitioners were recruited from a major cancer center in Singapore and through two regional cancer meetings that took place in Singapore and Malaysia in 2013. A total of 126 oncology practitioners from various Southeast Asian countries, mostly nurses (58.7 %) and physicians (37.3 %), were recruited. The majority of the respondents agreed that fatigue (78.4 %) and anxiety (69.1 %) were the most common physical and psychosocial problems experienced by BCS. Monitoring for physical and treatment-related adverse effects (80.7 %) and reviewing patients' noncancer medical history (65.3 %) were the most practiced aspects of follow-up care. Compared with the other practitioners, the physicians were more likely to communicate with other healthcare professionals (adjusted OR = 4.24, 95 % CI 1.54 to 11.72; p = 0.005). Most of the respondents also agreed that patient-specific barriers were the main impediments to follow-up care. This study provides insights into the various aspects of breast cancer survivorship care from the perspectives of oncology practitioners and shows that survivorship care is relatively inadequate in Asia. There is a need for new survivorship care models to meet the needs of Asian BCS and to complement the unique healthcare systems of Asia.

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

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.

When a policy decision meets practice realities: The case of cancer survivorship care and rehabilitation needs assessment.

PubMed

Handberg, Charlotte; Thorne, Sally; Maribo, Thomas

2018-04-01

To analyze and describe health professionals' attitudes and perspectives on the complexities of cancer survivorship and rehabilitation needs assessment in a shared cancer care context. The design and methodology for this study was Interpretive Description and the analysis was informed by Symbolic Interactionism as the theoretical framework. Between April and December 2015 an ethnographic fieldwork was carried out by the first author in haematological wards at two Danish hospitals and in two primary care settings conducting cancer survivorship care programs. Participants were 41 health professionals working with needs assessment. The findings revealed an understanding of the health professionals' attitudes and perspectives and were distinguishable in relation to three structural conditions associated with the dimensions of survivorship care: Patient Context, Workplace Priorities and Practice Culture. Despite shared beliefs that needs assessment was essential to ensure survivorship care, the differential conditions surrounding the hospital and the primary care settting impeded the wider idea of formalized needs assessment, creating barriers to a seamless link between the sectors. Meaningful resolution of these disjunctures will require broad solutions, recognizing that the organization of healthcare into disconnected systems, with their different conditions, history, habits and traditions, will certainly plague the "transition" problems in healthcare unless a wider perspective is taken. Thoughtful and informed clinicians working with decision makers and those who know the evidence and can interpret systems in context can certainly bring better options to light in order to develop high quality survivorship care that will support patients throughout their cancer trajectory. Copyright © 2018 Elsevier Ltd. All rights reserved.

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

Comprehensive Survivorship Care With Cost and Revenue Analysis

PubMed Central

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

2014-01-01

Purpose: 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. Patients and Methods: 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. Results: 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. Conclusion: Survivorship care at MSTI meets new standards, allows for patient engagement and satisfaction, and improves care coordination. Costs are covered by reimbursement. PMID:24065401

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.

Colorectal cancer patients' preferences for type of caregiver during survivorship care.

PubMed

Wieldraaijer, T; Duineveld, L A M; Donkervoort, S C; Busschers, W B; van Weert, H C P M; Wind, J

2018-03-01

Colorectal cancer (CRC) survivors are currently included in a secondary care-led survivorship care programme. Efforts are underway to transfer this survivorship care to primary care, but met with some reluctance by patients and caregivers. This study assesses (1) what caregiver patients prefer to contact for symptoms during survivorship care, (2) what patient factors are associated with a preferred caregiver, and (3) whether the type of symptom is associated with a preferred caregiver. A cross-sectional study of CRC survivors at different time points. For 14 different symptoms, patients reported if they would consult a caregiver, and who they would contact if so. Patient and disease characteristics were retrieved from hospital and general practice records. Two hundred and sixty patients participated (response rate 54%) of whom the average age was 67, 54% were male. The median time after surgery was seven months (range 0-60 months). Patients were divided fairly evenly between tumour stages 1-3, 33% had received chemotherapy. Men, patients older than 65 years, and patients with chronic comorbid conditions preferred to consult their general practitioner (GP). Women, patients with stage 3 disease, and patients that had received chemotherapy preferred to consult their secondary care provider. For all symptoms, patients were more likely to consult their GP, except for (1) rectal blood loss, (2) weight loss, and (3) fear that cancer had recurred, in which case they would consult both their primary and secondary care providers. Patients appreciated all caregivers involved in survivorship care highly; with 8 out of 10 points. CRC survivors frequently consult their GP in the current situation, and for symptoms that could alarm them to a possible recurrent disease consult both their GP and secondary care provider. Patient and tumour characteristics influence patients' preferred caregiver.

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.

Social factors matter in cancer risk and survivorship.

PubMed

Dean, Lorraine T; Gehlert, Sarah; Neuhouser, Marian L; Oh, April; Zanetti, Krista; Goodman, Melody; Thompson, Beti; Visvanathan, Kala; Schmitz, Kathryn H

2018-07-01

Greater attention to social factors, such as race/ethnicity, socioeconomic position, and others, are needed across the cancer continuum, including breast cancer, given differences in tumor biology and genetic variants have not completely explained the persistent Black/White breast cancer mortality disparity. In this commentary, we use examples in breast cancer risk assessment and survivorship to demonstrate how the failure to appropriately incorporate social factors into the design, recruitment, and analysis of research studies has resulted in missed opportunities to reduce persistent cancer disparities. The conclusion offers recommendations for how to better document and use information on social factors in cancer research and care by (1) increasing education and awareness about the importance of inclusion of social factors in clinical research; (2) improving testing and documentation of social factors by incorporating them into journal guidelines and reporting stratified results; and (3) including social factors to refine extant tools that assess cancer risk and assign cancer care. Implementing the recommended changes would enable more effective design and implementation of interventions and work toward eliminating cancer disparities by accounting for the social and environmental contexts in which cancer patients live and are treated.

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

Exercise and the rehabilitation of the cancer patient: celebrating survivorship through "extreme exercise".

PubMed

Ulman, Douglas

2008-01-01

Doug Ulman is the President of the Lance Armstrong Foundation and founder of the Ulman Cancer Fund for Young Adults. He is a three-time cancer survivor, diagnosed with chondrosarcoma in 1996 and subsequently diagnosed twice with melanoma. I was diagnosed with cancer in the "athletic prime" of my life. The summer I learned I had this terrible disease, I was 19 and my greatest concern was getting into shape for the fall soccer season. Cancer almost robbed me of my ability to run and compete, and for a short time, stole the trust in my own body I had always taken for granted. Ten years out from my diagnosis I am cancer free and am able to push my body in ways I never thought possible. My love of exercise first provided me with a context in which to understand the gravity of my diagnosis. Early in my survivorship, exercise served as a guide down a gradual, and sometimes very painful, path to physical recovery. Now, exercise in some of its most extreme forms-marathons and endurance mountain runs-is the vehicle through which I choose to celebrate my survivorship.

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. © 2016 American Cancer Society.

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. Copyright © 2013 American Cancer Society.

Occupational Therapy's Role in Cancer Survivorship as a Chronic Condition.

PubMed

Baxter, Mary Frances; Newman, Robin; Longpré, Sheila M; Polo, Katie M

Improved medical care has resulted in a documented increase in cancer survivors in the United States. Cancer survivors face challenges in participation across all facets of life as a result of the cancer and subsequent cancer treatments. Long-term and late-term sequelae can result in impairments in neurological systems, decreased stamina, loss of range of motion, and changes in sensation and cognition. These impairments are often long lasting, which categorizes cancer survivorship as a chronic condition. This categorization presents treatment challenges, especially in creating rehabilitation and habilitation service options that support cancer survivors. Occupational therapy provides a unique focus that can benefit cancer survivors as they face limitations in participation in all aspects of daily living. Research, advocacy, and education efforts are needed to focus on the specific rehabilitation and habilitation needs of cancer survivors to increase access to occupational therapy's distinct value. Copyright © 2017 by the American Occupational Therapy Association, Inc.

Post-Treatment Survivorship Care Needs of Spanish-speaking Latinas with Breast Cancer

PubMed Central

Nápoles, Anna María; Ortiz, Carmen; Santoyo-Olsson, Jasmine; Stewart, Anita L.; Lee, Howard E.; Duron, Ysabel; Dixit, Niharika; Luce, Judith; Flores, Diana J.

2017-01-01

Background A comprehensive assessment of Spanish-speaking breast cancer survivors’ (SSBCS) survivorship needs is lacking. Objective Assess SSBCS’ post-treatment symptom management, psychosocial, and informational needs. Methods 118 telephone surveys and 25 in-person semi-structured interviews with SSBCS, and semi-structured interviews with 5 support providers and 4 physicians who serve SSBCS from 5 Northern California counties. Results Surveys identified the most bothersome (bothered by it in the past month “somewhat/quite a bit/a lot”) physical symptoms as: joint pain, fatigue, hot flashes, numbness in hands/feet, and vaginal dryness. The most bothersome emotional symptoms were thoughts of recurrence/new cancers, depression/sadness, anxieties, and stress. Seven themes emerged from interviews: 1) unmet physical symptom management needs; 2) social support from family/friends often ends when treatment is completed; 3) challenges resuming roles; 5) sense of abandonment by health care system when treatment ends; 6) need for formal transition from active treatment to follow-up care; 6) fear of recurrence especially when obtaining follow-up care; and 7) desire for information on late effects of initial treatments and side effects of hormonal treatments. Based on survey and interview results, we present a conceptual framework for survivorship care interventions for SSBCS. Limitations Sample may not represent SSBCS’ concerns seen outside of Northern California hospitals. Conclusions Physical and psychosocial symptoms were common. SSBCS need culturally appropriate survivorship care programs that address symptom management, psychosocial concerns, follow-up care, and healthy lifestyles. PMID:28944260

Advance care planning within survivorship care plans for older cancer survivors: A systematic review.

PubMed

O'Caoimh, Rónán; Cornally, Nicola; O'Sullivan, Ronan; Hally, Ruth; Weathers, Elizabeth; Lavan, Amanda H; Kearns, Tara; Coffey, Alice; McGlade, Ciara; Molloy, D William

2017-11-01

Advances in the medical treatment of cancer have increased the number of survivors, particularly among older adults, who now represent the majority of these. Survivorship care plans (SCPs) are documents that cancer patients receive summarising their care, usually at the end of treatment but preferably from initial diagnosis. These may increase patient satisfaction and represent an opportunity to initiate preventative strategies and address future care needs. Advance care planning (ACP), incorporating advance healthcare decision-making, including formal written directives, increases satisfaction and end-of-life care. This paper systematically reviews evaluations of ACP within SCPs among older (≥65 years) cancer survivors. No studies meeting the inclusion criteria were identified by search strategies conducted in PubMed/MEDLINE and the Cochrane databases. One paper examined cancer survivors' mainly positive views of ACP. Another discussed the use of a SCP supported by a 'distress inventory' that included an advance care directive (living will) as an issue, though no formal evaluation was reported. Although ACP is important for older adults, no study was found that evaluated its role within survivorship care planning. Despite the risk of recurrence and the potential for morbidity and mortality, especially among older cancer survivors, ACP is not yet a feature of SCPs. Copyright © 2017 Elsevier B.V. All rights reserved.

Primary care and cancer: Facing the challenge of early diagnosis and survivorship.

PubMed

Round, Thomas

2017-05-01

With ageing populations and an increasing lifetime risk of cancer, primary care will continue to play an increasingly important role in early diagnosis and cancer survivorship, especially with the lowering of risk thresholds for referral and diagnostic investigations. However, primary care in many countries is in crisis with increasing workloads for primary care physicians. Potential solutions to these challenges will be outlined including development of multidisciplinary teams, diagnostic decision support, increasing access to diagnostics and cost-effective referral pathways. © 2017 John Wiley & Sons Ltd.

Impact of internet-based cancer survivorship care plans on health care and lifestyle behaviors.

PubMed

Hill-Kayser, Christine E; Vachani, Carolyn C; Hampshire, Margaret K; Di Lullo, Gloria; Jacobs, Linda A; Metz, James M

2013-11-01

Survivorship care plans (SCP) are currently recommended by the Institute of Medicine, and will soon be required for accreditation by the American College of Surgeons Commission on Cancer. To the best of the authors' knowledge, the impact of SCPs on cancer survivors has not been previously reported. In 2007, the authors created an Internet tool for the creation of SCPs that provides customized guidelines for survivorship care. Users are sent a voluntary follow-up survey 1 month after initial use. From May 2010 through January 2013, 8690 cancer survivors used the SCP tool. The most common diagnoses were breast (45%), hematologic (12%), and gastrointestinal (11%) cancers; the median age of the survivors was 51 years. Of these, 875 (10%) respondents provided information for future electronic contact and 298 responded to a 1-month follow-up survey. They reported that the information provided was "good" to "excellent" in 93% of cases, and new in 65% of cases. With regard to the emotional impact of the SCP, 62% of responding survivors believed that it provided "just enough" information, 72% felt "more informed," and 94% believed they would recommend it to others. The majority of respondents (63%) thought that the SCP changed their health care participation, and 80% shared/planned to share it with their health care team. Of those survivors who had done so, 80% reported that it improved communication with their health care providers. Greater than one-half of survey users (54%) reported that they had made or planned to make a lifestyle change in response to the SCP, most commonly dietary modification and increased exercise. Survivorship care plans are useful vehicles with which to promote lifestyle and behavioral changes, and to assist survivors with communication with health care providers. These findings support recommendations from the Institute of Medicine and the American College of Surgeons Commission on Cancer. © 2013 American Cancer Society.

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

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.

Following through: The consistency of survivorship care plan use in United States cancer programs

PubMed Central

Deal, Allison M.; Mayer, Deborah K.; Weiner, Bryan J.

2014-01-01

Background The Institute of Medicine suggests that consistent survivorship care plan (SCP) use involves developing and delivering SCPs to all cancer survivors and their primary care providers (PCPs). We describe the consistency of SCP use in US cancer programs and assess its relationship with cancer program-level determinants. Methods We surveyed employees knowledgeable about survivorship practices in cancer programs reporting current SCP use (n=36; 81% response rate). We operationalized consistent SCP use as whether SCPs were (1) developed for ≥75% survivors; (2) delivered to ≥75% survivors; (3) delivered to ≥75% PCPs; and (4) all of the above. We use descriptive statistics to report SCP use consistency and evaluate associations using Fisher’s Exact and Wilcoxon Rank Sum tests. Results SCPs were developed for ≥75% survivors in five programs (15%); eight (25%) delivered ≥75% SCPs to survivors; seven (23%) delivered ≥75% SCPs to PCPs; only one program (4%) met all three criteria. We found relationships between SCP use consistency and geographic region (p = .05); initiating SCP use in response to survivors’ requests (p = .03); and membership in the National Cancer Institute’s National Community Cancer Centers Program (p = .01). Conclusion SCP use is highly inconsistent. Survivors and cancer care quality improvement organizations may play a key role in improving the consistency of SCP use in US cancer programs. Survivors can initiate SCP use. Cancer care quality improvement organizations can specify how cancer programs’ compliance with SCP guidelines will be assessed. Future research should identify mechanisms underlying the relationships that we found. PMID:24577781

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.

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.

The state of survivorship care in radiation oncology: Results from a nationally distributed survey.

PubMed

Frick, Melissa A; Rosenthal, Seth A; Vapiwala, Neha; Monzon, Brian T; Berman, Abigail T

2018-04-18

Survivorship care has become an increasingly critical component of oncologic care as well as a quality practice and reimbursement metric. To the authors' knowledge, the current climate of survivorship medicine in radiation oncology has not been investigated fully. An institutional review board-approved, Internet-based survey examining practices and preparedness in survivorship care was distributed to radiation oncology practices participating in the American College of Radiology Radiation Oncology Practice Accreditation program between November 2016 and January 2017. A total of 78 surveys were completed. Among these, 2 were nonphysicians, resulting in 76 evaluable responses. Radiation oncologists (ROs) frequently reported that they are the primary provider in the evaluation of late toxicities and the recurrence of primary cancer. Although approximately 68% of ROs frequently discuss plans for future care with survivors, few provide a written survivorship care plan to their patients (18%) or the patients' primary care providers (24%). Patient prognosis, disease site, and reimbursement factors often influence the provision of survivorship care. Although ROs report that several platforms offer training in survivorship medicine, the quality of these resources is variable and extensive instruction is rare. Fewer than one-half of ROs believe they are expertly trained in survivorship care. ROs play an active role within the multidisciplinary team in the cancer-related follow-up care of survivors. Investigation of barriers to the provision of survivorship care and optimization of service delivery should be pursued further. The development of high-quality, easily accessible educational programming is needed so that ROs can participate more effectively in the care of cancer survivors. Cancer 2018. © 2018 American Cancer Society. © 2018 American Cancer Society.

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

A mixed method exploration of survivorship among Chinese American and non-Hispanic White breast cancer survivors: the role of socioeconomic well-being.

PubMed

Wang, Judy Huei-yu; Adams, Inez F; Tucker-Seeley, Reginald; Gomez, Scarlett Lin; Allen, Laura; Huang, Ellen; Wang, Yiru; Pasick, Rena J

2013-12-01

Cancer-related stress is heavily influenced by culture. This study explored similarities and differences in survivorship care concerns among Chinese American and non-Hispanic White (NHW) breast cancer survivors. A sequential, mixed-method design (inductive/qualitative research-phase I and deductive/quantitative research-phase II) was employed. Eligible women identified from the Greater Bay Area Cancer Registry were age ≥21, diagnosed with stage 0-IIa breast cancer between 2006 and 2011, and had no recurrence or other cancers. In phase I, we conducted 4 Chinese (n = 19) and 4 NHW (n = 22) focus groups, and 31 individual telephone interviews (18 Chinese immigrants, 7 Chinese US-born, and 6 NHW). Content analysis was conducted to examine qualitative data. In phase II, another 296 survivors (148 NHW age-matched to 148 Chinese cases) completed a cross-sectional survey. Descriptive statistics and linear regression analysis were conducted to examine quantitative data. Qualitative data revealed "socioeconomic well-being" (SWB) as a dominant survivorship concern, which was operationalized as a cancer survivor's perceived economic and social resources available to access care. Quantitative data showed that low-acculturated Chinese immigrants reported the poorest SWB, controlling for covariates. Highly acculturated Chinese immigrants and the US-born Chinese/NHW group reported similar SWB. Women who had low-income levels or chemotherapy had poorer SWB. SWB emerged as an important aspect of breast cancer survivorship. Immigration stress, cancer care costs, and cultural values all contributed to immigrants' socioeconomic distress. Immigrant and US-born breast cancer survivors experienced different socioeconomic circumstances and well-being following treatment. Our findings warrant further investigation of socioeconomic distress and survivorship outcomes.

A Mixed Method Exploration of Survivorship among Chinese American and Non-Hispanic White Breast Cancer Survivors: The Role of Socioeconomic Well-Being

PubMed Central

Wang, Judy Huei-yu; Adams, Inez F.; Tucker-Seeley, Reginald; Gomez, Scarlett Lin; Allen, Laura; Huang, Ellen; Wang, Yiru; Pasick, Rena J.

2013-01-01

Purpose Cancer-related stress is heavily influenced by culture. This study explored similarities and differences in survivorship care concerns among Chinese American and Non-Hispanic White (NHW) breast cancer survivors. Methods A sequential, mixed-method design (inductive/qualitative research-phase I and deductive/quantitative research-phase II) was employed. Eligible women identified from the Greater Bay Area Cancer Registry were age ≥21, diagnosed with stage 0-IIa breast cancer between 2006–2011, and had no recurrence or other cancers. In phase I, we conducted 4 Chinese (n=19) and 4 NHW (n=22) focus groups, and 31 individual telephone interviews (18 Chinese immigrants, 7 Chinese US-born, and 6 NHW). Content analysis was conducted to examine qualitative data. In phase II, another 296 survivors (148 NHW age-matched to 148 Chinese cases) completed a cross-sectional survey. Descriptive statistics and linear regression analysis were conducted to examine quantitative data. Results Qualitative data revealed “socioeconomic wellbeing” (SWB) as a dominant survivorship concern, which was operationalized as a cancer survivor’s perceived economic and social resources available to access care. Quantitative data showed that low-acculturated Chinese immigrants reported the poorest SWB, controlling for covariates. Highly-acculturated Chinese immigrants and the US-born Chinese/NHW group reported similar SWB. Women who had low income levels or chemotherapy had poorer SWB. Conclusions SWB emerged as an important aspect of breast cancer survivorship. Immigration stress, cancer care costs, and cultural values all contributed to immigrants’ socioeconomic distress. Immigrant and US-born breast cancer survivors experienced different socioeconomic circumstances and well-being following treatment. Our findings warrant further investigation of socioeconomic distress and survivorship outcomes. PMID:23591710

Assessing quality of life in young adult cancer survivors: development of the Survivorship-Related Quality of Life scale.

PubMed

Park, Crystal L; Wortmann, Jennifer H; Hale, Amy E; Cho, Dalnim; Blank, Thomas O

2014-10-01

Scientific advances in treatments and outcomes for those diagnosed with cancer in late adolescence and early adulthood depend, in part, on the availability of adequate assessment tools to measure health-related quality of life (HRQOL) for survivors in this age group. Domains especially relevant to late adolescence and young adulthood (LAYA; e.g., education and career, committed romantic relationships, worldview formation) are typically overlooked in studies assessing the impact of cancer, usually more appropriate for middle-aged or older survivors. Current HRQOL measures also tend to assess issues that are salient during or shortly after treatment rather than reflecting life years after treatment. To develop a new measure to better capture the experience of LAYA cancer survivors in longer-term survivorship (the LAYA Survivorship-Related Quality of Life measure, LAYA-SRQL), we completed an extensive measure development process. After a literature review and focus groups with LAYA cancer survivors, we generated items and ran confirmatory factor and reliability analyses using a sample of 292 LAYA cancer survivors. We then examined validity using existing measures of physical and mental health, quality of life, and impact of cancer. The final model consisted of two domains (satisfaction and impact), each consisting of ten factors: existential/spirituality, coping, relationship, dependence, vitality, health care, education/career, fertility, intimacy/sexuality, and cognition/memory. Confirmatory factor analysis and validity analyses indicated that the LAYA-SRQL is a psychometrically sound instrument with good validity. The LAYA-SRQL fills an important need in survivorship research, providing a way to assess HRQOL in LAYAs in a developmentally informed way.

Do Perceived Needs Affect Willingness to Use Traditional Chinese Medicine for Survivorship Care Among Chinese Cancer Survivors? A Cross-Sectional Survey

PubMed Central

Sun, Lingyun; Yang, Yufei; Vertosick, Emily; Jo, SungHwa; Sun, Guilan

2017-01-01

Purpose We aimed to quantify Chinese cancer survivors’ perceived needs for survivorship care and to evaluate whether these needs could impact their willingness to use traditional Chinese medicine (TCM). Methods We conducted a cross-sectional survey with members of the Beijing Anti-Cancer Association in China. We measured perceived needs with the seven-item Brief Chinese Cancer Survivorship Needs Scale that assesses psychological, functional, nutritional, social, body image, pain, and symptom needs. The outcome variable was willingness to use TCM for survivorship care. We performed multivariable logistic regression analyses to evaluate whether perceived needs are associated with willingness. Results A total of 600 patients were invited, with a response rate of 81%. The mean (standard deviation) score of the perceived needs scale (0 to 10) was 4.4 (2.2), with the majority of participants endorsing nutritional (72%), symptom (65%), and psychological (54%) needs. Among survivors, 387 (80%; 95% CI, 76% to 83%) were willing to use TCM for survivorship care. In multivariable analysis, a higher perceived needs score (adjusted odds ratio [OR], 1.33; 95% CI, 1.14 to 1.56; P < .001) was associated with greater willingness to use TCM. Specifically, nutritional (OR, 3.17; 95% CI, 1.79 to 5.62; P < .001) and symptom needs (OR, 3.15; 95% CI, 1.79 to 5.55; P < .001) had the strongest relationship. Conclusion A higher level of perceived needs, especially in the areas of nutrition and symptoms, was associated with greater willingness to use TCM for survivorship care. PMID:29244994

Adoption, Acceptability, and Effectiveness of a Mobile Health App for Personalized Prostate Cancer Survivorship Care: Protocol for a Realist Case Study of the Ned App

PubMed Central

Cafazzo, Joseph A; Feifer, Andrew

2017-01-01

Background By 2030, prostate cancer will be the most commonly diagnosed cancer in North America. To mitigate this impending challenge, comprehensive support mechanisms for disease- and treatment-specific changes in health and well-being must be proactively designed and thoughtfully implemented for streamlined survivorship care. mHealth apps have been lauded as a promising complement to current outpatient treatment and monitoring strategies, but have not yet been widely used to support prostate cancer survivorship needs. A realist evaluation is needed to examine the impact of such apps on the prostate cancer survivorship experience. Objective We seek to gain an understanding of how an mHealth app for prostate cancer survivorship care called Ned (No Evident Disease) is adopted and accepted by patients, caregivers, and clinicians. We also aim to determine the effect of Ned on health-related quality of life, satisfaction with cancer care, unmet needs, self-efficacy, and prostate cancer-related levels of anxiety. Methods The Ned case study is a 12-month mixed-methods embedded single-case study with a nested within-group pre-post comparison of health outcomes. We will give 400 patients, 200 caregivers, and 10 clinicians access to Ned. Participants will be asked to complete study assessments at baseline, 2 months, 6 months, and 12 months. We will conduct 30 semistructured qualitative interviews with patients (n=20) and their caregivers (n=10) poststudy to gain insight into their experience with the app. Results We recruited our first survivor in October 2017 and anticipate completing this study by May 2019. Conclusions This will, to our knowledge, be the first realist case study to evaluate an app for prostate cancer survivorship care. Prostate cancer survivors are set to increase in number and longevity, heightening the need for integrated survivorship solutions to provide them with optimal and durable outcomes. The knowledge gained from this study will comprehensively

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.

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

Patterns and predictors of survivorship clinic attendance in a population-based sample of pediatric and young adult childhood cancer survivors.

PubMed

Zheng, Daniel J; Sint, Kyaw; Mitchell, Hannah-Rose; Kadan-Lottick, Nina S

2016-06-01

Because many survivors do not receive recommended follow-up, we sought to characterize patterns and predictors of survivorship clinic attendance in a population-based sample of childhood cancer survivors. Using the Connecticut Tumor Registry, we identified all patients diagnosed with cancer at age ≤ 18 years from March 1, 1998 to March 1, 2008, still in follow-up 5 years post-diagnosis, and living <100 miles from Yale. Survivorship clinic attendance, demographics, disease characteristics, and treatment exposures were ascertained. Vital status was confirmed with the National Death Index. The Kaplan-Meier curves and hazard ratios were calculated for survivorship clinic attendance. Four hundred eighty-nine eligible survivors currently 19.1 ± 6.2 years old were diagnosed at a mean age of 9.1 ± 5.8 years with leukemias/lymphomas (47.2 %), central nervous system tumors (16.4 %), sarcomas (11.2 %), thyroid cancers or melanomas (7.8 %), and other solid tumors (17.4 %). The 10-year post-diagnosis clinic attendance probability was 27.8 % (SE = 2.3) overall, and 36.9 % (SE = 4.4) and 40.8 % (SE = 3.8), in patients with radiation and anthracycline exposure, respectively. In adjusted analysis, patients with insurance (HR = 2.90; p < 0.01 for private and HR = 2.05; p = 0.02 for public assistance), treated with anthracyclines (HR = 3.05; p < 0.01), and treated with radiation (HR = 1.90; p < 0.01) were significantly more likely to attend clinic. The majority of childhood cancer survivors in our population-based sample had not attended survivorship clinic, even among those with high-risk exposures. Health care access, as measured by insurance status, was an important predictor of clinic attendance. More research is needed to clarify the link between insurance status and survivorship care to increase appropriate late effects surveillance in this population.

Treatment-related Cardiovascular Late-effects and Exercise Training Countermeasures in Testicular Germ Cell Cancer Survivorship

PubMed Central

Christensen, Jesper F; Bandak, Mikkel; Campbell, Anna; Jones, Lee W.; Højman, Pernille

2016-01-01

Background Treatment of testicular germ cell cancer constitutes a major success story in modern oncology. Today, the vast majority of patients are cured by a therapeutic strategy using one or more highly effective components including surgery (orchiectomy), radiotherapy and/or chemotherapy. However, the excellent cancer specific survival comes at considerable costs, as individuals with a history of germ cell cancer experience serious long-term complications, including markedly increased risk of cardiovascular morbidities and premature cardiovascular death. The factors responsible, as well as their mode of action, are not fully understood and there is a lack of knowledge concerning optimal evidence-based long-term follow-up strategies. Results Here, we present the growing body of evidence suggesting that germ cell cancer patients as a consequence of the different treatment components, are subjected to toxicities, which individually, and synergistically, can cause physiological impairments leading to sub-clinical or clinical cardiovascular disorders the ‘multiple-hit hypothesis’). Furthermore, we discuss the efficacy and utility of structured exercise training to ameliorate treatment-induced cardiovascular dysfunction to prevent premature onset of clinical cardiovascular disease in germ cell cancer survivors, with a view towards highlighting future directions of exercise-based survivorship research in the germ cell cancer setting. Conclusion Since exercise training may have the potential to ameliorate and/or reverse long-term cardiovascular disease sequelae in germ cell cancer survivors, a strong rationale exists for the promotion of exercise-oncology research in this setting, in order to provide exercise-recommendations for optimal germ cell cancer survivorship. PMID:25751759

Treatment-related cardiovascular late effects and exercise training countermeasures in testicular germ cell cancer survivorship.

PubMed

Christensen, Jesper F; Bandak, Mikkel; Campbell, Anna; Jones, Lee W; Højman, Pernille

2015-05-01

Treatment of testicular germ cell cancer constitutes a major success story in modern oncology. Today, the vast majority of patients are cured by a therapeutic strategy using one or more highly effective components including surgery (orchiectomy), radiotherapy and/or chemotherapy. However, the excellent cancer-specific survival comes at considerable costs, as individuals with a history of germ cell cancer experience serious long-term complications, including markedly increased risk of cardiovascular morbidities and premature cardiovascular death. The factors responsible, as well as their mode of action, are not fully understood and there is a lack of knowledge concerning optimal evidence-based long-term follow-up strategies. Here, we present the growing body of evidence suggesting that germ cell cancer patients as a consequence of the different treatment components, are subjected to toxicities, which individually, and synergistically, can cause physiological impairments leading to sub-clinical or clinical cardiovascular disorders (i.e. the 'multiple-hit hypothesis'). Furthermore, we discuss the efficacy and utility of structured exercise training to ameliorate treatment-induced cardiovascular dysfunction to prevent premature onset of clinical cardiovascular disease in germ cell cancer survivors, with a view towards highlighting future directions of exercise-based survivorship research in the germ cell cancer setting. As exercise training may have the potential to ameliorate and/or reverse long-term cardiovascular disease sequelae in germ cell cancer survivors, a strong rationale exists for the promotion of exercise oncology research in this setting, in order to provide exercise recommendations for optimal germ cell cancer survivorship.

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

Understanding acceptability of and engagement with Web-based interventions aiming to improve quality of life in cancer survivors: A synthesis of current research.

PubMed

Corbett, Teresa; Singh, Karmpaul; Payne, Liz; Bradbury, Katherine; Foster, Claire; Watson, Eila; Richardson, Alison; Little, Paul; Yardley, Lucy

2018-01-01

This review sought to summarize existing knowledge to inform the development of an online intervention that aims to improve quality of life after cancer treatment. To inform our intervention, we searched for studies relating to Web-based interventions designed to improve quality of life in adults who have completed primary treatment for breast, prostate, and colorectal cancer (as these are 3 of the most common cancers and impact a large number of cancer survivors). We included a variety of study designs (qualitative research, feasibility/pilot trials, randomized trials, and process evaluations) and extracted all available information regarding intervention characteristics, experiences, and outcomes. Data were synthesized as textual (qualitative) data and analyzed by using thematic analysis. Fifty-seven full text articles were assessed for eligibility, and 16 papers describing 9 interventions were analyzed. Our findings suggest that cancer survivors value interventions that offer content specific to their changing needs and are delivered at the right stage of the cancer trajectory. Social networking features do not always provide added benefit, and behavior change techniques need to be implemented carefully to avoid potential negative consequences for some users. Future work should aim to identify appropriate strategies for promoting health behavior change, as well as the optimal stage of cancer survivorship to facilitate intervention delivery. The development of Web-based interventions for cancer survivors requires further exploration to better understand how interventions can be carefully designed to match this group's unique needs and capabilities. User involvement during development may help to ensure that interventions are accessible, perceived as useful, and appropriate for challenges faced at different stages of the cancer survivorship trajectory. Copyright © 2017 John Wiley & Sons, Ltd.

From diagnosis through survivorship: health-care experiences of colorectal cancer survivors with ostomies.

PubMed

Sun, Virginia; Grant, Marcia; McMullen, Carmit K; Altschuler, Andrea; Mohler, M Jane; Hornbrook, Mark C; Herrinton, Lisa J; Krouse, Robert S

2014-06-01

The journey from diagnosis through treatment to survivorship can be challenging for colorectal cancer (CRC) survivors with permanent ostomies. Memories of both the positive and negative health-care interactions can persist years after the initial diagnosis and treatment. The purpose of this paper is to describe the health-care experiences of long-term (>5 years) CRC survivors with ostomies. Thirty-three CRC survivors with ostomies who were members of Kaiser Permanente, an integrated care organization, in Oregon, southwestern Washington and northern California participated in eight focus groups. Discussions from the focus groups were recorded, transcribed, and analyzed for potential categories and themes. Health-care-related themes described CRC survivors' experiences with diagnosis, treatment decision-making, initial experiences with ostomy, and survivorship. Participants discussed both positive and negative health-care-related experiences, including the need for continued access to trained nurses for ostomy self-care, access to peer support, and resources related to managing persistent, debilitating symptoms. Long-term CRC survivors with ostomies have both positive and negative health-care experiences, regardless of health-related quality of life (HRQOL) and gender. Long-term support mechanisms and quality survivorship care that CRC survivors with ostomies can access are needed to promote positive adjustments and improved HRQOL. The current literature in CRC survivorship suggests that HRQOL concerns can persist years after treatment completion. The coordination of care to manage persistent late- and long-term effects are still lacking for CRC survivors living with an ostomy. Findings from this qualitative analysis will aid in the development of support strategies that foster more positive adjustments for CRC survivors living with an ostomy and support their ongoing ostomy-related needs.

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

Cancer survivorship and opioid prescribing rates: A population-based matched cohort study among individuals with and without a history of cancer.

PubMed

Sutradhar, Rinku; Lokku, Armend; Barbera, Lisa

2017-11-01

Little is known about opioid prescribing among individuals who have survived cancer. Our aim is to examine a predominantly socio-economically disadvantaged population for differences in opioid prescribing rates among cancer survivors compared with matched controls without a prior diagnosis of cancer. This was a retrospective population-wide matched cohort study. Starting in 2010, individuals residing in Ontario, Canada, who were 18 to 64 years of age and at least 5 years past their cancer diagnosis were matched to controls without a prior cancer diagnosis based on sex and calendar year of birth. Follow-up was terminated at any indication of cancer recurrence, second malignancy, or new cancer diagnosis. To examine the association between survivorship and the rate of opioid prescriptions, an Andersen-Gill recurrent event regression model was implemented, adjusting for numerous individual-level characteristics and also accounting for the matched design. The rate of opioid prescribing was 1.22 times higher among survivors than among their corresponding matched controls (adjusted relative rate, 1.22; 95% CI, 1.11-1.34). Individuals from lower income quintiles who were younger, were from rural neighborhoods, and had more comorbidities had significantly higher prescribing rates. Sex was not associated with prescribing rates. This increased rate of opioid prescribing was also seen among survivors who were 10 or more years past their cancer diagnosis (compared with their controls). This study demonstrates substantially higher opioid prescribing rates among cancer survivors, even long after attaining survivorship. This raises concerns about the diagnosis and management of chronic pain problems among survivors stemming from their cancer diagnosis or treatment. Cancer 2017;123:4286-4293. © 2017 American Cancer Society. © 2017 American Cancer Society.

Cancer survivorship and return to work: UK occupational physician experience.

PubMed

Amir, Ziv; Wynn, Philip; Whitaker, Stuart; Luker, Karen

2009-09-01

Survivorship following diagnosis of cancer is increasing in prevalence. However, cancer survivors continue to report difficulty re-entering the workplace after diagnosis and treatment. To survey UK occupational health physicians (OHPs) regarding their role in rehabilitation of employed survivors of cancer. Following a pilot study, a questionnaire exploring opinions of OHPs regarding supporting cancer survivors' return to work was posted to all members of the UK Society of Occupational Medicine, with a repeat posting 2 months later. Responses were analyzed for significant correlations with OHP age, sex, qualification level, size of businesses advised and years of experience. There were 797 respondents (response rate 51%). Responses suggested opportunities for developing the knowledge base in relation to prognosis and functional outcomes in patients with a cancer diagnosis; instituting information resources on cancer and work for OHPs and developing communications skills training. Most respondents felt managers treated referral to occupational health (OH) differently for employees with cancer compared with management referral for employees with other diagnoses, with 45% of respondents indicating referral may take place too late to be effective in securing a return to work. A significant lack of understanding of the information requirements of employers and the role of OH by treating doctors was identified. This survey raises several possible significant barriers to return to work by cancer survivors. Recommendations to ameliorate these are made.

Impact of Survivorship-Based Research on Defining Clinical Care Guidelines

PubMed Central

Hudson, Melissa M.; Landier, Wendy; Ganz, Patricia A.

2011-01-01

The growing number of individuals living 5 or more years from cancer diagnosis underscores the importance of providing guidance about potential late treatment effects to clinicians caring for long-term cancer survivors. Late treatment effects are commonly experienced by cancer survivors, increase in prevalence with aging, produce substantial morbidity, and predispose to early mortality. Findings from survivorship research permit providers to anticipate health risks among predisposed survivors and facilitate their access to interventions to prevent, detect, or rehabilitate cancer-related morbidity. This manuscript reviews the impact that survivorship research has made in defining clinical care guidelines and the challenges that remain in developing and translating research findings into health screening recommendations that can optimize the quality and duration of survival after cancer. PMID:21980016

A step forward in addressing cancer survivorship in the Asia-Pacific region.

PubMed

Chan, Raymond Javan; Chan, Alexandre; Yates, Patsy; Molassiotis, Alex

2017-01-26

Cancer survivorship is being increasingly recognized as an important component of cancer care. This commentary reviews the key findings reported in the recent BMC Medicine publication of the ACTION study, which focuses on the health-related quality of life and psychological distress in 5249 cancer survivors in eight low- and middle-income countries in Southeast Asia. The study identified that more than one-third of survivors experience at least mild levels of anxiety and depressive symptoms and that poorer outcomes in quality of life, anxiety, and depressive symptoms are linked to a number of clinical and demographic factors. Such data provides an important foundation to inform cancer policy and service planning in Asia. Future research efforts are required to further understand the needs of cancer survivors in this region and determine interventions to improve outcomes for this population.Please see related article: http://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0768-2 .

Survivorship, Version 2.2017

PubMed Central

Denlinger, Crystal S.; Sanft, Tara; Baker, K. Scott; Baxi, Shrujal; Broderick, Gregory; Demark-Wahnefried, Wendy; Friedman, Debra L.; Goldman, Mindy; Hudson, Melissa; Khakpour, Nazanin; King, Allison; Koura, Divya; Kvale, Elizabeth; Lally, Robin M.; Langbaum, Terry S.; Melisko, Michelle; Montoya, Jose G.; Mooney, Kathi; Moslehi, Javid J.; O’Connor, Tracey; Overholser, Linda; Paskett, Electra D.; Peppercorn, Jeffrey; Rodriguez, M. Alma; Ruddy, Kathryn J.; Silverman, Paula; Smith, Sophia; Syrjala, Karen L.; Tevaarwerk, Amye; Urba, Susan G.; Wakabayashi, Mark T.; Zee, Phyllis; Freedman-Cass, Deborah A.; McMillian, Nicole R.

2018-01-01

Many cancer survivors experience menopausal symptoms, including female survivors taking aromatase inhibitors or with a history of oophorectomy or chemotherapy, and male survivors who received or are receiving androgen-ablative therapies. Sexual dysfunction is also common in cancer survivors. Sexual dysfunction and menopause-related symptoms can increase distress and have a significant negative impact on quality of life. This portion of the NCCN Guidelines for Survivorship provide recommendations for screening, evaluation, and treatment of sexual dysfunction and menopausal symptoms to help healthcare professionals who work with survivors of adult-onset cancer in the posttreatment period. PMID:28874599

Lessons Learned from the Young Breast Cancer Survivorship Network.

PubMed

Gisiger-Camata, Silvia; Nolan, Timiya S; Vo, Jacqueline B; Bail, Jennifer R; Lewis, Kayla A; Meneses, Karen

2017-11-30

The Young Breast Cancer Survivors Network (Network) is an academic and community-based partnership dedicated to education, support, and networking. The Network used a multi-pronged approach via monthly support and networking, annual education seminars, website networking, and individual survivor consultation. Formative and summative evaluations were conducted using group survey and individual survivor interviews for monthly gatherings, annual education meetings, and individual consultation. Google Analytics was applied to evaluate website use. The Network began with 4 initial partnerships and grew to 38 in the period from 2011 to 2017. During this 5-year period, 5 annual meetings (598 attendees), 23 support and networking meetings (373), and 115 individual survivor consultations were conducted. The Network website had nearly 12,000 individual users and more than 25,000 page views. Lessons learned include active community engagement, survivor empowerment, capacity building, social media outreach, and network sustainability. The 5-year experiences with the Network demonstrated that a regional program dedicated to the education, support, networking, and needs of young breast cancer survivors and their families can become a vital part of cancer survivorship services in a community. Strong community support, engagement, and encouragement were vital components to sustain the program.

From diagnosis through survivorship: health-care experiences of colorectal cancer survivors with ostomies

PubMed Central

Grant, Marcia; McMullen, Carmit K.; Altschuler, Andrea; Mohler, M. Jane; Hornbrook, Mark C.; Herrinton, Lisa J.; Krouse, Robert S.

2014-01-01

Purpose The journey from diagnosis through treatment to survivorship can be challenging for colorectal cancer (CRC) survivors with permanent ostomies. Memories of both the positive and negative health-care interactions can persist years after the initial diagnosis and treatment. The purpose of this paper is to describe the health-care experiences of long-term (>5 years) CRC survivors with ostomies. Methods Thirty-three CRC survivors with ostomies who were members of Kaiser Permanente, an integrated care organization, in Oregon, southwestern Washington and northern California participated in eight focus groups. Discussions from the focus groups were recorded, transcribed, and analyzed for potential categories and themes. Results Health-care-related themes described CRC survivors’ experiences with diagnosis, treatment decision-making, initial experiences with ostomy, and survivorship. Participants discussed both positive and negative health-care-related experiences, including the need for continued access to trained nurses for ostomy self-care, access to peer support, and resources related to managing persistent, debilitating symptoms. Conclusions Long-term CRC survivors with ostomies have both positive and negative health-care experiences, regardless of health-related quality of life (HRQOL) and gender. Long-term support mechanisms and quality survivorship care that CRC survivors with ostomies can access are needed to promote positive adjustments and improved HRQOL. Structured abstract The current literature in CRC survivor-ship suggests that HRQOL concerns can persist years after treatment completion. The coordination of care to manage persistent late- and long-term effects are still lacking for CRC survivors living with an ostomy. Findings from this qualitative analysis will aid in the development of support strategies that foster more positive adjustments for CRC survivors living with an ostomy and support their ongoing ostomy-related needs. PMID:24442998

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.

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.

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.

Effects of physical activity on depressive symptoms during breast cancer survivorship: a meta-analysis of randomised control trials

PubMed Central

Patsou, Efrossini D; Alexias, Georgios D; Anagnostopoulos, Fotios G

2017-01-01

BackgroundBreast cancer is one of the most common cancers affecting women worldwide, and depressive symptoms are disturbing side effects of cancer diagnosis and treatment. Physical activity and exercise have emerged as an alternative treatment in handling psychological distress throughout breast cancer survivorship. AimThe aim of this review was to present the results of (1) physical activity and (2) exercise interventions in terms of type and duration regarding depressive symptoms among breast cancer survivors during and after treatment. The hypothesis was that cancer survivors who are engaged with physical activity will demonstrate statistically significant lower levels of depressive symptoms when compared with non-exercising control groups. MethodsWe searched PubMed, Elsevier and Google Scholar for recent articles published between January 2011 and November 2016. Fourteen randomised control trials with 1701 patients in total were assessed. ResultsSignificant differences in levels were found between exercise intervention groups and control groups, while moderate aerobic exercise interventions with an optimal duration of ≥135 min for up to 12 weeks are significantly more beneficial in depressive symptoms when it comes to patients under treatment than resistance, aerobicandresistance training and yoga interventions. ConclusionsIt is concluded that when progressive exercise programmes are prescribed according to the individual needs, capabilities and preferences of breast cancer survivors, they offer a valid alternative to depression mood management throughout the course of survivorship. PMID:29259819

Design of the North Carolina Prostate Cancer Comparative Effectiveness and Survivorship Study (NC ProCESS).

PubMed

Chen, Ronald C; Carpenter, William R; Kim, Mimi; Hendrix, Laura H; Agans, Robert P; Meyer, Anne-Marie; Hoffmeyer, Anna; Reeve, Bryce B; Nielsen, Matthew E; Usinger, Deborah S; Strigo, Tara S; Jackman, Anne M; Anderson, Mary; Godley, Paul A

2015-01-01

The North Carolina Prostate Cancer Comparative Effectiveness & Survivorship Study (NC ProCESS) was designed in collaboration with stakeholders to compare the effectiveness of different treatment options for localized prostate cancer. Using the Rapid Case Ascertainment system of the North Carolina Central Cancer Registry, 1,419 patients (57% of eligible) with newly-diagnosed localized prostate cancer were enrolled from January 2011 to June 2013, on average 5 weeks after diagnosis. All participants were enrolled prior to treatment and this population-based cohort is sociodemographically diverse. Prospective follow-up continues to collect data on treatments received, disease control, survival and patient-reported outcomes. This study highlights several important considerations regarding stakeholder involvement, study design and generalizability regarding comparative effectiveness research in prostate cancer.

Gender and Role Differences in Couples Communication during Cancer Survivorship

PubMed Central

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

2014-01-01

Background 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. Objective 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. Methods The dominant-less dominant methods of sequential mixed design was utilized. 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. Results Both male survivors and partners demonstrated better family communication scores compared to 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. Conclusions 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. Implications for Practice 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. PMID:25122132

The Role of Environmental Design in Cancer Prevention, Diagnosis, Treatment, and Survivorship: A Systematic Literature Review.

PubMed

Gharaveis, Arsalan; Kazem-Zadeh, Mahshad

2018-01-01

The purpose of this literature review is to provide a better understanding of the impact that environmental design can have on the process of cancer prevention, diagnosis, treatment, and survivorship. Cancer is considered a chronic disease in the United States, and more than 1.6 million new cases are diagnosed annually. New strategies of cancer care propose patient-centered services to achieve the best outcome, and researchers have found that environmental design can be an important part of improving this care. Searches were conducted in the PubMed and Google Scholar databases as well as in specific healthcare design journals such as Health Environments Research & Design, Environmental Psychology, and Environment and Behavior. The criteria for articles included in the review were (a) English-language articles related to facility design, which addressed (b) the topics of built environment in relation to cancer diagnosis, treatment, and survivorship, and were (c) published in peer-reviewed journals between 2000 and 2017. Finally, 10 articles were selected, and the contents were analyzed. The selected articles demonstrate that environmental design is one of the critical factors for success throughout the whole continuum of cancer care from diagnosis to end-of-treatment. Some of the specific conclusions from the review are that "neighborhood-oriented" design strategies can be beneficial (by providing accessibility to all facilities along the patient's path), that access to nature for patients, staff, and visitors alike is associated with better outcomes, and that provisions for natural lighting and noise reduction are associated with cancer patients' well-being.

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

Accessibility, Availability, and Potential Benefits of Psycho-Oncology Services: The Perspective of Community-Based Physicians Providing Cancer Survivorship Care.

PubMed

Zimmermann-Schlegel, Verena; Hartmann, Mechthild; Sklenarova, Halina; Herzog, Wolfgang; Haun, Markus W

2017-06-01

As persons of trust, community-based physicians providing survivorship care (e.g., general practitioners [GPs]) often serve as the primary contacts for cancer survivors disclosing distress. From the perspective of physicians providing survivorship care for cancer patients, this study explores (a) the accessibility, availability, and potential benefits of psycho-oncology services; (b) whether physicians themselves provide psychosocial support; and (c) predictors for impeded referrals of survivors to services. In a cross-sectional survey, all GPs and community-based specialists in a defined region were interviewed. In addition to descriptive analyses, categorical data were investigated by applying chi-square tests. Predictors for impeded referrals were explored through logistic regression. Of 683 responding physicians, the vast majority stated that survivors benefit from psycho-oncology services (96.8%), but the physicians also articulated that insufficient coverage of psycho-oncology services (90.9%) was often accompanied by impeded referrals (77.7%). A substantial proportion (14.9%) of physicians did not offer any psychosocial support. The odds of physicians in rural areas reporting impeded referrals were 1.91 times greater than the odds of physicians in large urban areas making a similar report (95% confidence interval [1.07, 3.40]). Most community-based physicians providing survivorship care regard psycho-oncology services as highly beneficial. However, a large number of physicians report tremendous difficulty referring patients. Focusing on those physicians not providing any psychosocial support, health policy approaches should specifically (a) raise awareness of the role of physicians as persons of trust for survivors, (b) highlight the effectiveness of psycho-oncology services, and (c) encourage a proactive attitude toward the assessment of unmet needs and the initiation of comprehensive care. Community-based physicians providing survivorship care for cancer

The evolution of breast cancer navigation and survivorship care.

PubMed

Shockney, Lillie D

2015-01-01

Over the last several decades, breast screening, diagnosis, and treatment have evolved. With that evolutionary process, so have the complexities of oncology care, especially from the perspective of more fragmented care occurring. The majority of breast care is outpatient based. The need for patient navigation has heightened as this fragmentation and financial issues set before the oncologist and the patient continue to occur and in many situations increase. Without effective navigation, breast patients can fall through the cracks and not get diagnosed as early as possible, or not receive all appropriate treatment they need. We are also seeing a steady increase in the actual number of breast cancer patients being diagnosed and surviving long term. Unfortunately simultaneous to this happen there is also a growing shortage of oncology specialists in the USA. This results in a need to transition survivors back to their community physicians after the completion of their acute treatment, and to do so in an organized, anticipated manner that prepares the survivor and her PCP and gynecologist, the tools they all need for effective cancer survivorship management. © 2014 Wiley Periodicals, Inc.

An investigation of survivorship clinic attendance among childhood cancer survivors living in a five-state rural region.

PubMed

Ou, Judy Y; Smits-Seemann, Rochelle R; Wu, Yelena P; Wright, Jennifer; Kirchhoff, Anne C

2018-04-01

Cancer survivorship clinics manage cancer-related health complications and are available primarily in urban areas. We examine how demographic, clinical, and geographic-based characteristics are associated with attendance at the only pediatric survivorship clinic in a largely rural, multistate region. One thousand eight hundred sixteen cancer survivors were diagnosed at age ≤ 25 from 1986 to 2005 while living in the region. Cox models incorporating death as a competing risk and generalized estimating equations calculated hazards ratios (HR) for characteristics measured at the clinic's opening. Subjects were followed from the clinic opening their first visit, death, emigration from the catchment area, or December 31, 2014. Five percent of survivors visited the clinic. Attendance is positively associated with a leukemia or lymphoma diagnosis (HR = 3.32, 95% confidence interval [CI] = 1.72-6.78 vs CNS tumors), previous relapse (HR = 1.78, 95% CI = 1.00-3.19), and residing >100 mi from the clinic (HR = 2.05, 95% CI 1.03-4.10). Survivors aged ≥ 31 years at clinic opening (HR = 0.19, 95% CI = 0.07-0.54) are less likely to attend than younger survivors. Residence between 16 and 100 mi had an inverse association with attendance, although not significant. Survivorship clinics are not widely attended by survivors in this catchment region. Efforts should be made to recruit survivors aged ≥ 31 and diagnosed with CNS tumors. Distance has a complex association with attendance, which could be attributed to the limited availability of preventative services in regions > 100 mi from the clinic. Survivors living in this catchment region may not be receiving care necessary to prevent severe late effects.

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

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

Thank you for your lovely card: ethical considerations in responding to bereaved parents invited in error to participate in childhood cancer survivorship research.

PubMed

Wakefield, Claire E; McLoone, Jordana K; Donovan, Leigh A; Cohn, Richard J

2015-02-01

Research exploring the needs of families of childhood cancer survivors is critical to improving the experiences of future families faced by this disease. However, there are numerous challenges in conducting research with this unique population, including a relatively high mortality rate. In recognition that research with cancer survivors is a relational activity, this article presents a series of cases of parents bereaved by childhood cancer who unintentionally received invitations to participate in survivorship research. We explore six ethical considerations, and compare our experiences with that described previously. Our considerations include the sharing of confidential information with external parties to confirm past patients' vital status and appropriate researcher responses to bereaved parents. The management of researchers' emotional safety when working with illness populations and the fact that study invitations can elicit grief responses in non-bereaved families are discussed. To conclude, we argue for the benefits of inviting bereaved parents whose children died after treatment completion in survivorship research. Such parents' early survivorship experiences will otherwise be systemically neglected. We argue that discussing complex cases can assist researchers to protect participants' and researchers' emotional well-being. We hope to contribute to the dearth of discussion about research operating procedures to address these issues.

Survivorship care and support following treatment for breast cancer: a multi-ethnic comparative qualitative study of women's experiences.

PubMed

Tompkins, Charlotte; Scanlon, Karen; Scott, Emma; Ream, Emma; Harding, Seeromanie; Armes, Jo

2016-08-18

As the number of breast cancer survivors continues to rise, Western populations become more ethnically and socially diverse and healthcare resources become ever-more stretched, follow-up that focuses on monitoring for recurrence is no longer viable. New models of survivorship care need to ensure they support self-management and are culturally appropriate across diverse populations. This study explored experiences and expectations of a multi-ethnic sample of women with breast cancer regarding post-treatment care, in order to understand potential barriers to receiving care and inform new models of survivorship care. A phenomenological qualitative research design was employed. In-depth interviews were conducted with women from diverse socio-demographic backgrounds in England, who completed treatment for breast cancer in the 12 months prior to the study. Data were analysed using Framework Analysis. Sixty-six women participated and reported expectations and needs were unmet at follow-up. Whilst there were more commonalities in experiences, discernible differences, particularly by ethnicity and age, were identified relating to three key themes: emotional responses on transition to follow-up; challenges communicating with healthcare professionals at follow-up; and challenges finding and accessing information and support services to address unmet needs. There are cultural differences in the way healthcare professionals and women communicate, not necessarily differences in their post-treatment needs. We do not know if new models of care meet survivors' needs, or if they are appropriate for everyone. Further testing and potential cultural and linguistic adaptation of models of care is necessary to ensure their appropriateness and acceptability to survivors from different backgrounds. New ways of providing survivorship care mean survivors will need to be better prepared for the post-treatment period and the role they will have to play in managing their symptoms and care.

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. Copyright © 2015 by the American Occupational Therapy Association, Inc.

Breast cancer survivorship program: testing for cross-cultural relevance.

PubMed

Chung, Lynna K; Cimprich, Bernadine; Janz, Nancy K; Mills-Wisneski, Sharon M

2009-01-01

Taking CHARGE, a theory-based self-management program, was developed to assist women with survivorship concerns that arise after breast cancer treatment. Few such programs have been evaluated for cultural relevance with diverse groups. This study determined the utility and cultural relevance of the program for African American (AA) breast cancer survivors. Two focus groups were held with AA women (n = 13), aged 41 to 72 years, who had completed primary treatment. Focus group participants assessed the program content, format, materials, and the self-regulation process. Content analysis of audiotapes was conducted using an open, focused coding process to identify emergent themes regarding program relevance and topics requiring enhancement and/or further emphasis. Although findings indicated that the program's content was relevant to participants' experiences, AA women identified need for cultural enhancements in spirituality, self-preservation, and positive valuations of body image. Content areas requiring more emphasis included persistent fatigue, competing demands, disclosure, anticipatory guidance, and age-specific concerns about body image/sexuality. Suggested improvements to program materials included portable observation logs, additional resources, more photographs of younger AA women, vivid colors, and images depicting strength. These findings provide the basis for program enhancements to increase the utility and cultural relevance of Taking CHARGE for AA survivors and underscore the importance of evaluating interventions for racially/ethnically diverse groups.

Enhancing Survivorship Care Planning for Patients With Localized Prostate Cancer Using a Couple-Focused mHealth Symptom Self-Management Program: Protocol for a Feasibility Study.

PubMed

Song, Lixin; Dunlap, Kaitlyn L; Tan, Xianming; Chen, Ronald C; Nielsen, Matthew E; Rabenberg, Rebecca L; Asafu-Adjei, Josephine K; Koontz, Bridget F; Birken, Sarah A; Northouse, Laurel L; Mayer, Deborah K

2018-02-26

This project explores a new model of care that enhances survivorship care planning and promotes health for men with localized prostate cancer transitioning to posttreatment self-management. Survivorship care planning is important for patients with prostate cancer because of its high incidence rate in the United States, the frequent occurrence of treatment-related side effects, and reduced quality of life (QOL) for both men and their partners. A key component of comprehensive survivorship care planning is survivorship care plans (SCPs), documents that summarize cancer diagnosis, treatment, and plans for follow-up care. However, research concerning the effectiveness of SCPs on patient outcomes or health service use has thus far been inconclusive. SCPs that are tailored to individual patients' needs for information and care may improve effectiveness. This study aims to examine the feasibility of an enhanced survivorship care plan (ESCP) that integrates a symptom self-management mHealth program called Prostate Cancer Education and Resources for Couples (PERC) into the existing standardized SCP. The specific aims are to (1) examine the feasibility of delivering ESCPs and (2) to estimate the magnitude of benefit of ESCPs. We will use a two-group randomized controlled pretest-posttest design and collect data at baseline (T1) and 4 months later (T2) among 50 patients completing initial treatment for localized prostate cancer and their partners. First, we will assess the feasibility of ESCP by recruitment, enrollment, and retention rates; program satisfaction with the ESCP; and perceived ease of use of the ESCP. To achieve the secondary aim, we will compare the ESCP users with the standardized SCP users and assess their primary outcomes of QOL (overall, physical, emotional, and social QOL); secondary outcomes (reduction in negative appraisals and improvement in self-efficacy, social support, and health behaviors to manage symptoms); and number of visits to posttreatment

Developing a healthy web-based cookbook for pediatric cancer patients and survivors: rationale and methods.

PubMed

Li, Rhea; Raber, Margaret; Chandra, Joya

2015-03-31

Obesity has been a growing problem among children and adolescents in the United States for a number of decades. Childhood cancer survivors (CCS) are more susceptible to the downstream health consequences of obesity such as cardiovascular disease, endocrine issues, and risk of cancer recurrence due to late effects of treatment and suboptimal dietary and physical activity habits. The objective of this study was to document the development of a Web-based cookbook of healthy recipes and nutrition resources to help enable pediatric cancer patients and survivors to lead healthier lifestyles. The Web-based cookbook, named "@TheTable", was created by a committee of researchers, a registered dietitian, patients and family members, a hospital chef, and community advisors and donors. Recipes were collected from several sources including recipe contests and social media. We incorporated advice from current patients, parents, and CCS. Over 400 recipes, searchable by several categories and with accompanying nutritional information, are currently available on the website. In addition to healthy recipes, social media functionality and cooking videos are integrated into the website. The website also features nutrition information resources including nutrition and cooking tip sheets available on several subjects. The "@TheTable" website is a unique resource for promoting healthy lifestyles spanning pediatric oncology prevention, treatment, and survivorship. Through evaluations of the website's current and future use, as well as incorporation into interventions designed to promote energy balance, we will continue to adapt and build this unique resource to serve cancer patients, survivors, and the general public.

Developing a Healthy Web-Based Cookbook for Pediatric Cancer Patients and Survivors: Rationale and Methods

PubMed Central

Raber, Margaret

2015-01-01

Background Obesity has been a growing problem among children and adolescents in the United States for a number of decades. Childhood cancer survivors (CCS) are more susceptible to the downstream health consequences of obesity such as cardiovascular disease, endocrine issues, and risk of cancer recurrence due to late effects of treatment and suboptimal dietary and physical activity habits. Objective The objective of this study was to document the development of a Web-based cookbook of healthy recipes and nutrition resources to help enable pediatric cancer patients and survivors to lead healthier lifestyles. Methods The Web-based cookbook, named “@TheTable”, was created by a committee of researchers, a registered dietitian, patients and family members, a hospital chef, and community advisors and donors. Recipes were collected from several sources including recipe contests and social media. We incorporated advice from current patients, parents, and CCS. Results Over 400 recipes, searchable by several categories and with accompanying nutritional information, are currently available on the website. In addition to healthy recipes, social media functionality and cooking videos are integrated into the website. The website also features nutrition information resources including nutrition and cooking tip sheets available on several subjects. Conclusions The “@TheTable” website is a unique resource for promoting healthy lifestyles spanning pediatric oncology prevention, treatment, and survivorship. Through evaluations of the website’s current and future use, as well as incorporation into interventions designed to promote energy balance, we will continue to adapt and build this unique resource to serve cancer patients, survivors, and the general public. PMID:25840596

Body composition of children with cancer during treatment and in survivorship.

PubMed

Murphy, Alexia J; White, Melinda; Elliott, Sarah A; Lockwood, Liane; Hallahan, Andrew; Davies, Peter Sw

2015-10-01

Malnutrition as assessed with the use of body-composition measurements is a poorly understood short- and long-term complication of childhood cancer. We aimed to evaluate the body composition of 2 childhood cancer cohorts as follows: 1) children currently undergoing cancer treatment and 2) childhood cancer survivors. We also aimed to compare the prevalence of obesity and undernutrition between the cancer groups and investigate the impact of cancer type on body composition. Eighty-two children during the treatment of cancer and 53 childhood cancer survivors were involved in the study. Height, weight, body cell mass, percentage of fat, fat mass index, and fat-free mass index were assessed. Subjects were compared with age- and sex-matched healthy controls. The on-treatment group had a higher percentage of fat (P = 0.0001) and fat mass index (P = 0.0001) and a significantly lower body cell mass index (P = 0.0001) and fat-free mass index (P = 0.003) than did matched controls. The survivor group had a significantly higher percentage of fat (P = 0.03) and fat mass index (P = 0.04) and significantly lower body cell mass index (P = 0.0001) than did matched controls. The prevalence of undernutrition was high in both groups with 48% (95% CI: 36%, 60%) of the on-treatment group and 53% (95% CI: 40%, 66%) of the survivors considered undernourished. According to the percentage of fat cutoffs, significantly more on-treatment patients were obese (55%; 95% CI: 40%, 60%) than were survivors (26%; 95% CI: 14%, 38%) (P = 0.005). There were no statistically significant differences in body composition between cancer types in either the on-treatment or the survivor group. Overnutrition and undernutrition are major concerns in the short and long term for children with cancer. Children treated for cancer have increased fat mass and decreased body cell mass, which are evident during treatment and in survivorship. This trial was registered at http://www.ANZCTR.org.au as ACTRN12614001279617

Barriers and facilitators to implementing cancer survivorship care plans.

PubMed

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

2013-11-01

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. Descriptive pilot study. Two facilities in Vermont, an urban academic medical center and a rural community academic cancer center. 17 oncology clinical staff created SCPs, 39 PCPs completed surveys, and 58 patients (breast or colorectal cancer) participated in a telephone survey. 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. SCP, healthcare provider perception of barriers to completion and implementation, and patient perception of SCP visit. 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. 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. Oncology nurse practitioners are well positioned to create and deliver SCPs, transitioning patients from oncology care to a PCP in a shared-care model of optimal wellness. Institution support for

Providing written information increases patient satisfaction: a web-based questionnaire survey of Japanese cancer survivors.

PubMed

Sakai, Hitomi; Katsumata, Noriyuki; Takahashi, Miyako

2017-07-01

The Institute of Medicine (IOM) of the United States recommends that all cancer survivors be provided with a survivorship care plan (SCP), which includes a patient treatment summary and a follow-up care plan. However, SCPs have not been widely adopted in Japan. To provide basic data necessary for implementing SCPs in Japan, we aimed to investigate the forms of clinical and survivorship-related information that Japanese cancer survivors receive from their healthcare providers, and to examine whether written information increases their satisfaction. We performed a cross-sectional online survey of cancer survivors who underwent acute cancer treatment and had at least one follow-up with a physician in the past year. Cancer survivors provided the elements and forms (verbally and/or written) of information they received, as well as the degree of satisfaction with the information provided. Responses were obtained from 545 cancer survivors. Information elements such as surgical procedure (98.3%), surgical outcome (98.1%), and names of administered chemotherapy agents (97.8%) were commonly provided, whereas mental care resources and providers (29.7%), effects on marital relationship and sexual health (35.7%), and effects on fertility (43.4%) were less common. A large proportion of cancer survivors received verbal information only. For 18 of 20 elements, except for effects on fertility and duration of hormonal therapy, satisfaction was significantly higher when both forms of information were provided (P < 0.05). Providing written and verbal explanations of clinical and survivorship-related information can better meet the needs of Japanese cancer survivors. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Impact of an Interprofessional Primary Care Training on Fear of Cancer Recurrence on Clinicians' Knowledge, Self-Efficacy, Anticipated Practice Behaviors, and Attitudes Toward Survivorship Care.

PubMed

Berrett-Abebe, Julie; Cadet, Tamara; Nekhlyudov, Larissa; Vitello, Joan; Maramaldi, Peter

2018-02-10

There are an estimated 15.5 million cancer survivors in the United States, with numbers projected to increase. Many cancer survivors are receiving survivorship care in primary care settings, yet primary care providers report a need for additional training on addressing medical and psychosocial concerns of cancer survivors. This paper presents findings from a pilot study on the effectiveness of a novel training for interprofessional primary care providers on the clinically significant issue of fear of cancer recurrence. The on-site training was provided to a total of 46 participants, including physicians (61%), physician assistants (11%), nurse practitioners (7%), nurses (17%), and social workers (4%) in six different primary care practices. The average number of years of professional experience was 18.8, with standard deviation of 10.9. Results of paired-sample t tests indicated that the training increased knowledge and self-efficacy of providers in identifying and addressing FCR. The training was well-received by participants, who had high confidence in implementing practice behavior changes, although they also identified barriers. Results suggest the feasibility of a brief training for continuing education and have implications for models of care delivery in cancer survivorship.

A New Method for Predicting Patient Survivorship Using Efficient Bayesian Network Learning

PubMed Central

Jiang, Xia; Xue, Diyang; Brufsky, Adam; Khan, Seema; Neapolitan, Richard

2014-01-01

The purpose of this investigation is to develop and evaluate a new Bayesian network (BN)-based patient survivorship prediction method. The central hypothesis is that the method predicts patient survivorship well, while having the capability to handle high-dimensional data and be incorporated into a clinical decision support system (CDSS). We have developed EBMC_Survivorship (EBMC_S), which predicts survivorship for each year individually. EBMC_S is based on the EBMC BN algorithm, which has been shown to handle high-dimensional data. BNs have excellent architecture for decision support systems. In this study, we evaluate EBMC_S using the Molecular Taxonomy of Breast Cancer International Consortium (METABRIC) dataset, which concerns breast tumors. A 5-fold cross-validation study indicates that EMBC_S performs better than the Cox proportional hazard model and is comparable to the random survival forest method. We show that EBMC_S provides additional information such as sensitivity analyses, which covariates predict each year, and yearly areas under the ROC curve (AUROCs). We conclude that our investigation supports the central hypothesis. PMID:24558297

A new method for predicting patient survivorship using efficient bayesian network learning.

PubMed

Jiang, Xia; Xue, Diyang; Brufsky, Adam; Khan, Seema; Neapolitan, Richard

2014-01-01

The purpose of this investigation is to develop and evaluate a new Bayesian network (BN)-based patient survivorship prediction method. The central hypothesis is that the method predicts patient survivorship well, while having the capability to handle high-dimensional data and be incorporated into a clinical decision support system (CDSS). We have developed EBMC_Survivorship (EBMC_S), which predicts survivorship for each year individually. EBMC_S is based on the EBMC BN algorithm, which has been shown to handle high-dimensional data. BNs have excellent architecture for decision support systems. In this study, we evaluate EBMC_S using the Molecular Taxonomy of Breast Cancer International Consortium (METABRIC) dataset, which concerns breast tumors. A 5-fold cross-validation study indicates that EMBC_S performs better than the Cox proportional hazard model and is comparable to the random survival forest method. We show that EBMC_S provides additional information such as sensitivity analyses, which covariates predict each year, and yearly areas under the ROC curve (AUROCs). We conclude that our investigation supports the central hypothesis.

C-C4-02: Improving Survivorship Care for Long-Term Colorectal Cancer Survivors: Key Findings of a 5-Year Study

PubMed Central

McMullen, Carmit K; Hornbrook, Mark C; Herrinton, Lisa J; Altschuler, Andrea; Grant, Marcia; Wendel, Christopher; Coons, Stephen Joel; Green, Sylvan B; Mohler, M Jane; Baldwin, Carol M; Ramirez, Michelle; Krouse, Robert S

2010-01-01

Aims: Understand the determinants of health related quality of life (HRQOL) and the lived experiences among colorectal cancer (CRC) survivors, and identify strategies to help maintain or enhance CRC survivors’ HRQOL. Methods: Mail survey and focus groups. Subjects were 283 ostomy and 392 anastomosis long-term CRC survivors within an HMO. Focus groups for subjects with ostomy were divided by gender and high and low HRQOL. Outcome measures were the modified City of Hope Quality of Life (mCOH-QOL)-Ostomy (abridged for anastomosis) and SF-36v2 questionnaires. The SF-6D scoring algorithm was used to calculate an overall HRQOL score from SF-36v2 data. Focus groups were conducted to explore ostomy-related barriers to effective self-care and adaptation strategies. Results: CRC survivors with an ostomy experienced multiple persistent HRQOL losses that differ between men and women. Women CRC survivors with ostomies, for example, reported more sleep disruption and fatigue than men. Living with an ostomy, co-morbidities, socioeconomic status, self-reported depression, and employment status were independent predictors of SF-6D scores. Among CRC survivors with ostomy, fistulas had important implications for HRQOL. Psychological wellbeing among CRC survivors was positively associated with income. Intestinal stomas significantly influenced spiritual HRQOL. Provision or withdrawal of a partners’ support affected both short- and long-term psychosocial adjustment of female CRC ostomy patients. Focus group participants identified dietary changes to control bowel output and odor, demands of coping and adjustment, and the time it took to accept the reality of daily living with an ostomy as significant challenges. Conclusions: The greatest challenges reported by CRC survivors confirmed the IOMs findings that survivorship is a distinct, chronic phase of cancer care, and that cancer effects are broad and pervasive. CRC survivors could benefit from dietary and behavioral interventions

A structural model for stress, coping, and psychosocial adjustment: A multi-group analysis by stages of survivorship in Korean women with breast cancer.

PubMed

Jang, Miyoung; Kim, Jiyoung

2018-04-01

Prospective studies have examined factors directly affecting psychosocial adjustment during breast cancer treatment. Survivorship stage may moderate a direct effect of stress on psychosocial adjustment. This study aimed to examine relationships between stress, social support, self-efficacy, coping, and psychosocial adjustment to construct a model of the effect pathways between those factors, and determine if survivorship stage moderates those effects. Six hundred people with breast cancer completed questionnaires. Examined stages of survivorship after treatment were as follows: acute (i.e., <2 years), extended (2-5 years), and lasting (>5 years). Stress (Perceived Stress Scale), social support (Multidimensional Scale of Perceived Social Support), self-efficacy (New General Self Efficacy Scale), coping (Ways of Coping Checklist), and psychosocial adjustment (Psychosocial Adjustment to Illness Scale-Self-Report-Korean Version) were measured. Self-efficacy significantly correlated with psychosocial adjustment in the acute survival stage (γ = -0.37, P < .001). Stress inversely correlated with coping only in the extended survival stage (γ = -0.56, P < .001). Social support's benefit to psychosocial adjustment was greater in the acute (γ = -0.42, P < .001) and extended survival stages (γ = -0.56, P < .001) than in the lasting survival stage. Stress's negative correlation with psychosocial adjustment was stronger in the lasting survival stage (β = 0.42, P < .001) than in the acute survival stage. Based on these results, it is necessary to improve self-efficacy, social support, and manage stress according to survival stage for psychosocial adjustment of female breast cancer patients. Copyright © 2018 Elsevier Ltd. All rights reserved.

Depression and Cancer Survivorship: Importance of Coping Self-Efficacy in Post-Treatment Survivors

PubMed Central

Philip, Errol J.; Merluzzi, Thomas V.; Zhang, Zhiyong; Heitzmann, Carolyn A.

2012-01-01

Purpose An estimated 30% of cancer patients are expected to experience clinically significant psychological distress during the treatment phase of their disease. Despite significant attention being directed to the mental health needs of individuals undergoing and completing treatment, there is less known about the mental health needs of survivors and the role of potential protective factors in survivorship, such as coping self-efficacy and social support. Method One hundred and twenty-four post-treatment cancer survivors (mean age = 62.23 years, female = 70%, average 9.3 years post-treatment) were asked to complete measures of physical symptoms, coping self-efficacy, social support, and depression as part of a national convenience sample of cancer patients and survivors. Results About 20% of participants possessed scores on the CES-D indicative of clinically-relevant depression. Coping self-efficacy was not only a significant predictor of depression (43% VAC); it also partially mediated the relationship between symptoms and depression. Social support accounted for limited variance and was not a significant predictor of depression in a model containing both social support and coping self-efficacy as predictors. Conclusion A substantial minority of post-treatment survivors reported depression symptomatology. Coping self-efficacy may be an important component of patients’ adjustment and possible target for intervention. These results highlight the ongoing mental health and support needs of cancer survivors. PMID:22573371

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

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

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.

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.

Interventions to improve the quality of life and survivorship of older adults with cancer: The funding landscape at NIH, ACS and PCORI.

PubMed

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

2016-07-01

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 scientifically strong research proposal are presented. Copyright © 2016 Elsevier Inc. All rights reserved.

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

Importance ratings on patient-reported outcome items for survivorship care: comparison between pediatric cancer survivors, parents, and clinicians.

PubMed

Jones, Conor M; Baker, Justin N; Keesey, Rachel M; Eliason, Ruth J; Lanctot, Jennifer Q; Clegg, Jennifer L; Mandrell, Belinda N; Ness, Kirsten K; Krull, Kevin R; Srivastava, Deokumar; Forrest, Christopher B; Hudson, Melissa M; Robison, Leslie L; Huang, I-Chan

2018-04-18

To compare importance ratings of patient-reported outcomes (PROs) items from the viewpoints of childhood cancer survivors, parents, and clinicians for further developing short-forms to use in survivorship care. 101 cancer survivors, 101 their parents, and 36 clinicians were recruited from St. Jude Children's Research Hospital. Participants were asked to select eight items that they deemed useful for clinical decision making from each of the four Patient-Reported Outcomes Measurement Information System Pediatric item banks. These item banks were pain interference (20 items), fatigue (23 items), psychological stress (19 items), and positive affect (37 items). Compared to survivors, clinicians rated more items across four domains that were statistically different than did parents (23 vs. 13 items). Clinicians rated five items in pain interference domain (ORs 2.33-6.01; p's < 0.05) and three items in fatigue domain (ORs 2.22-3.80; p's < .05) as more important but rated three items in psychological stress domain (ORs 0.14-0.42; p's < .05) and six items in positive affect domain (ORs 0.17-0.35; p's < .05) as less important than did survivors. In contrast, parents rated seven items in positive affect domain (ORs 0.25-0.47; p's < .05) as less important than did survivors. Survivors, parents, and clinicians viewed importance of PRO items for survivorship care differently. These perspectives should be used to assist the development of PROs tools.

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

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

"When I Needed It": Evaluation of the Use and Timing of Sharsheret's Thriving Again Program for Young Breast Cancer Survivors.

PubMed

Rohan, Elizabeth A; Townsend, Julie S; Fleischmann, Adina; Stahl, Sharon; Shoretz, Rochelle

2017-02-08

Approximately 11% of all new breast cancer cases in the USA occur in women aged 45 years or younger. In 2011, CDC funded seven organizations to develop or enhance programs for young breast cancer survivors (YBCS). This paper analyzed program evaluation data collected by one of these organizations to gain a more nuanced understanding of how recipients used the newly developed program and resources for YBCS. Sharsheret's Thriving Again program was evaluated through a web-based survey of survivorship program participants. The evaluation asked questions about participant demographics, use of the kit's survivorship care plan (SCP), satisfaction with the timing of survivorship kit receipt, and factors related to survivors' use of additional Sharsheret programs. We conducted bivariate analyses of survey responses and calculated chi-square statistics for significance testing. Of the 163 women who responded to the survey, 43% were diagnosed with breast cancer at or before age 45 and 69% were of Jewish descent. The majority of women who used the SCP found it helpful to facilitate cancer treatment (94%), follow-up (85%), or discussions with providers (91%). A total of 75% of women who received the SCP kit while either recently diagnosed or undergoing treatment were satisfied with the timing of receipt. Survey respondents found the Thriving Again program and survivorship kit beneficial and indicated timing preferences for when to receive resources and support. Supporting the self-efficacy of cancer survivors may improve survivors' quality of life and is an important aspect of survivorship programs.

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

After Childhood Cancer: a Qualitative Study of Family Physician, Parent/Guardian, and Survivor Information Needs and Perspectives on Long-Term Follow-up and Survivorship Care Plans.

PubMed

Keats, Melanie R; Shea, Kelsey; Parker, Louise; Stewart, Samuel A; Flanders, Annette; Bernstein, Mark

2018-03-19

Despite support for the provision of a survivorship care plan (SCP) to every cancer survivor, there is a lack of understanding of the needs and preferences of key stakeholders. We examined perspectives of a novel personalized SCP for childhood cancer survivors (CCS), their family, and family physicians (FP). We conducted semi-structured telephone interviews with a purposefully selected sample of CCS, parents/guardians, and FPs. Data included responses to stakeholder cancer care information needs, concerns with or gaps in communication, the perceived role of the FP in the long-term management of CCS care, utility of the SCP, preferred format, and suggestions for improvement. A deductive content analysis was conducted. Twenty-four participants including 8 CCS, 10 parents/guardians, and 6 FPs completed an interview. Four main and several sub-categories emerged. Core categories were coded as (1) informative reference, (2) coordination of follow-up, (3) barriers to follow-up care, and (4) suggestions for improvement and future implementation. The majority of participants preferred an electronic- or web-based format. Overall, the SCP was seen as an informative and concise resource. The SCP was thought to be a valuable tool to foster communication and empower CCSs to become more fully engaged in their own cancer-related health care. FPs viewed the SCP as a useful resource to facilitate and guide the long-term management of the CCS. In addition to the treatment summary, a comprehensive follow-up timeline, personalized lifestyle information, and details on how to access additional psychosocial support were highlighted as important components.

A systematic review of web-based interventions for patient empowerment and physical activity in chronic diseases: relevance for cancer survivors.

PubMed

Kuijpers, Wilma; Groen, Wim G; Aaronson, Neil K; van Harten, Wim H

2013-02-20

Patient empowerment reflects the ability of patients to positively influence their health and health behavior such as physical activity. While interactive Web-based interventions are increasingly used in various chronic disease settings to enhance empowerment and physical activity, such interventions are still uncommon for cancer survivors. The objective of this study was to systematically review the literature regarding interactive Web-based interventions. We focused on interventions aimed at increasing patient empowerment and physical activity for various chronic conditions, and explored their possible relevance for cancer survivors. Searches were performed in PubMed, Embase, and Scopus to identify peer-reviewed papers reporting on randomized controlled trials that studied the effects of Web-based interventions. These interventions were developed for adults with diabetes, cardiovascular disease, chronic obstructive pulmonary disease, heart failure, or cancer. Intervention characteristics, effects on patient empowerment and physical activity, information on barriers to and facilitators of intervention use, users' experiences, and methodological quality were assessed. Results were summarized in a qualitative way. We used the recommendations of the Institute of Medicine (IOM) regarding cancer survivorship care to explore the relevance of the interventions for cancer survivors. We included 19 papers reporting on trials with 18 unique studies. Significant, positive effects on patient empowerment were reported by 4 studies and 2 studies reported positive effects on physical activity. The remaining studies yielded mixed results or no significant group differences in these outcomes (ie, no change or improvement for all groups). Although the content, duration, and frequency of interventions varied considerably across studies, commonly used elements included education, self-monitoring, feedback/tailored information, self-management training, personal exercise program, and

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

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

2016-08-01

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. 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. 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). 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.

Psychological morbidities in adolescent and young adult blood cancer patients during curative-intent therapy and early survivorship.

PubMed

Muffly, Lori S; Hlubocky, Fay J; Khan, Niloufer; Wroblewski, Kristen; Breitenbach, Katherine; Gomez, Joseline; McNeer, Jennifer L; Stock, Wendy; Daugherty, Christopher K

2016-03-15

Adolescents and young adults (AYAs) with cancer face unique psychosocial challenges. This pilot study was aimed at describing the prevalence of psychological morbidities among AYAs with hematologic malignancies during curative-intent therapy and early survivorship and at examining provider perceptions of psychological morbidities in their AYA patients. Patients aged 15 to 39 years with acute leukemia, non-Hodgkin lymphoma, or Hodgkin lymphoma who were undergoing curative-intent therapy (on-treatment group) or were in remission within 2 years of therapy completion (early survivors) underwent a semistructured interview that incorporated measures of anxiety, depression, and posttraumatic stress (PTS). A subset of providers (n = 15) concomitantly completed a survey for each of the first 30 patients enrolled that evaluated their perception of each subject's anxiety, depression, and PTS. Sixty-one of 77 eligible AYAs participated. The median age at diagnosis was 26 years (range, 15-39 years), 64% were male, and 59% were non-Hispanic white. On-treatment demographics differed significantly from early-survivor demographics only in the median time from diagnosis to interview. Among the 61 evaluable AYAs, 23% met the criteria for anxiety, 28% met the criteria for depression, and 13% met the criteria for PTS; 46% demonstrated PTS symptomatology. Thirty-nine percent were impaired in 1 or more psychological domains. Psychological impairments were as frequent among early survivors as AYAs on treatment. Provider perceptions did not significantly correlate with patient survey results. AYAs with hematologic malignancies experience substantial psychological morbidities while they are undergoing therapy and during early survivorship, with more than one-third of the patients included in this study meeting the criteria for anxiety, depression, or traumatic stress. This psychological burden may not be accurately identified by their oncology providers. © 2016 American Cancer Society.

Systematic review of medial versus lateral survivorship in unicompartmental knee arthroplasty.

PubMed

van der List, J P; McDonald, L S; Pearle, A D

2015-12-01

Unicompartmental knee arthroplasty (UKA) has gained popularity in patients with isolated unicompartmental osteoarthritis. To our knowledge no systematic review has assessed and compared survivorship of medial and lateral UKA. We performed a systematic review assessing medial and lateral UKA survivorship and comparing survivorship in cohort studies and registry-based studies. A search was performed using PubMed, Embase and Cochrane systems. Ninety-six eligible studies reported survivorship, of which fifty-eight reported medial and sixteen reported lateral UKA survivorship. Nineteen cohort studies and seven registry-based studies reported combined medial and lateral survivorship. The five-year, ten-year and fifteen-year medial UKA survivorship was 93.9%, 91.7% and 88.9%, respectively. Lateral UKA survivorship was 93.2%, 91.4% and 89.4% at five-year, ten-year and fifteen-year, respectively. No statistical difference between both compartments was found. At twenty years and twenty-five years survivorship of medial UKA was 84.7% and 80%, respectively, but no studies reported lateral UKA survivorship at these follow-up intervals. Survivorship of cohort studies was not significantly higher compared to registry-based studies at five years (94.3 vs. 91.7, respectively, p=0.133) but was significantly higher at ten years (90.5 vs. 84.1, p=0.015). This is the first systematic review that shows no difference in the five-, ten- and fifteen-year survivorship of medial and lateral UKA. We found a lower survivorship in the registry-based studies compared to cohort studies. Copyright © 2015 Elsevier B.V. All rights reserved.

Multicenter breast cancer collaborative registry.

PubMed

Sherman, Simon; Shats, Oleg; Fleissner, Elizabeth; Bascom, George; Yiee, Kevin; Copur, Mehmet; Crow, Kate; Rooney, James; Mateen, Zubeena; Ketcham, Marsha A; Feng, Jianmin; Sherman, Alexander; Gleason, Michael; Kinarsky, Leo; Silva-Lopez, Edibaldo; Edney, James; Reed, Elizabeth; Berger, Ann; Cowan, Kenneth

2011-01-01

The Breast Cancer Collaborative Registry (BCCR) is a multicenter web-based system that efficiently collects and manages a variety of data on breast cancer (BC) patients and BC survivors. This registry is designed as a multi-tier web application that utilizes Java Servlet/JSP technology and has an Oracle 11g database as a back-end. The BCCR questionnaire has accommodated standards accepted in breast cancer research and healthcare. By harmonizing the controlled vocabulary with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT), the BCCR provides a standardized approach to data collection and reporting. The BCCR has been recently certified by the National Cancer Institute's Center for Biomedical Informatics and Information Technology (NCI CBIIT) as a cancer Biomedical Informatics Grid (caBIG(®)) Bronze Compatible product.The BCCR is aimed at facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention, treatment, and survivorship strategies against breast cancer. Currently, seven cancer institutions are participating in the BCCR that contains data on almost 900 subjects (BC patients and survivors, as well as individuals at high risk of getting BC).

Multicenter Breast Cancer Collaborative Registry

PubMed Central

Sherman, Simon; Shats, Oleg; Fleissner, Elizabeth; Bascom, George; Yiee, Kevin; Copur, Mehmet; Crow, Kate; Rooney, James; Mateen, Zubeena; Ketcham, Marsha A.; Feng, Jianmin; Sherman, Alexander; Gleason, Michael; Kinarsky, Leo; Silva-Lopez, Edibaldo; Edney, James; Reed, Elizabeth; Berger, Ann; Cowan, Kenneth

2011-01-01

The Breast Cancer Collaborative Registry (BCCR) is a multicenter web-based system that efficiently collects and manages a variety of data on breast cancer (BC) patients and BC survivors. This registry is designed as a multi-tier web application that utilizes Java Servlet/JSP technology and has an Oracle 11g database as a back-end. The BCCR questionnaire has accommodated standards accepted in breast cancer research and healthcare. By harmonizing the controlled vocabulary with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT), the BCCR provides a standardized approach to data collection and reporting. The BCCR has been recently certified by the National Cancer Institute’s Center for Biomedical Informatics and Information Technology (NCI CBIIT) as a cancer Biomedical Informatics Grid (caBIG®) Bronze Compatible product. The BCCR is aimed at facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention, treatment, and survivorship strategies against breast cancer. Currently, seven cancer institutions are participating in the BCCR that contains data on almost 900 subjects (BC patients and survivors, as well as individuals at high risk of getting BC). PMID:21918596

Nutritional Status of Breast Cancer Survivors 1 Year after Diagnosis: A Preliminary Analysis from the Malaysian Breast Cancer Survivorship Cohort Study.

PubMed

Majid, Hazreen Abd; Keow, Low Phei; Islam, Tania; Su, Tin Tin; Cantwell, Marie; Taib, Nur Aishah

2018-04-01

Lifestyle factors, such as diet, body weight, and physical activity, are linked to better survival after breast cancer (BC) diagnosis. A high percentage of the Malaysian population is overweight or obese. In addition, studies have shown a disparity in survival among Malaysian women compared with other higher-income countries. The Malaysian Breast Cancer Survivorship Cohort (MyBCC) study aims to study lifestyle factors that affect survival in BC survivors. These are the preliminary findings on the nutritional status of Malaysian BC survivors. Our aim was to evaluate the nutritional status of BC survivors at 1 year after diagnosis. This was a cross-sectional study of 194 participants from the MyBCC study, recruited within 1 year of their diagnosis. Participants completed a 3-day food diary. Malaysian women (aged 18 years and older) who were newly diagnosed with primary BC, managed at the University Malaya Medical Center, and able to converse either in Malay, English, or Mandarin were included. Dietary intake and prevalence of overweight or obesity among participants 1 year after diagnosis were measured. Student's t test and analysis of variance or its equivalent nonparametric test were used for association in continuous variables. About 66% (n=129) of participants were overweight or obese and >45% (n=86) had high body fat percentage 1 year after diagnosis. The participants' diets were low in fiber (median=8.7 g/day; interquartile range=7.2 g/day) and calcium (median=458 mg/day; interquartile range=252 mg/day). Ethnicity and educational attainment contributed to the differences in dietary intake among participants. Higher saturated fat and lower fiber intake were observed among Malay participants compared with other ethnic groups. Overweight and obesity were highly prevalent among BC survivors and suboptimal dietary intake was observed. Provision of an individualized medical nutrition therapy by a qualified dietitian is crucial as part of comprehensive BC survivorship

Calculating the costs of an 8-week, physiotherapy-led exercise intervention in deconditioned cancer survivors in the early survivorship period (the PEACH trial).

PubMed

Broderick, J M; Guinan, E; O' Donnell, D M; Hussey, J; Tyrrell, E; Normand, C

2014-06-01

Strong evidence exists for rehabilitation programmes following a cancer diagnosis, although little is known about their cost. The effects of an 8-week, physiotherapy-led, structured group intervention during the early survivorship phase were evaluated. Significant changes in quality of life and fatigue, and promising changes in fitness were found. The overall cost for this programme was €196 per participant, including the salaries of the clinicians, overheads and equipment costs. The modest costs associated with this programme may support more routine 'cancer rehabilitation', although more robust analyses are required. Copyright © 2014 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved.

Melanoma survivorship: research opportunities.

PubMed

Oliveria, Susan A; Hay, Jennifer L; Geller, Alan C; Heneghan, Maureen K; McCabe, Mary S; Halpern, Allan C

2007-03-01

The rising incidence and mortality rates of melanoma, the most fatal form of skin cancer, are among the greatest increases of all preventable cancers over the past decade. However, because of recent advances in early detection, secondary prevention efforts, and treatment, the number of melanoma survivors is increasing. Little research has been conducted on melanoma survivors and important opportunities exist for research in this understudied population. Here, we outline the important research opportunities related to the study of melanoma survivorship and summarize the paucity of literature currently available. A computerized literature search was performed of the MEDLINE database of the National Library of Medicine from 1966-2005. The scope of the search was limited to those studies published in English. The search was conducted using the following MeSH headings: melanoma, neoplasms, skin neoplasms, survival, and survival rate. The reference lists of relevant book chapters and review articles were further reviewed, and printed materials from recent scientific meetings addressing this topic were obtained. Several factors that affect melanoma survivors warrant further study, including: physiologic long-term effects; psychosocial, behavioral, and cognitive factors; demographic characteristics; surveillance practices; recurrences, secondary primaries, and other cancers; family members of survivors; and economic issues, access to health care/life insurance. Understanding recurrence and second primary cancer risk, psychosocial and cognitive characteristics, behaviors, surveillance patterns, economic sequelae, and family issues of melanoma survivors is important from a public health standpoint to promote the health and well-being of this cohort. Melanoma is an understudied cancer, and the incidence and mortality of this disease are increasing. Describing the long term burden of this cancer and identifying factors that contribute to them will facilitate efforts to develop

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.

Protocol for a cluster randomised trial of a communication skills intervention for physicians to facilitate survivorship transition in patients with lymphoma

PubMed Central

Parker, Patricia A; Banerjee, Smita C; Matasar, Matthew J; Bylund, Carma L; Franco, Kara; Li, Yuelin; Levin, Tomer T; Jacobsen, Paul B; Astrow, Alan B; Leventhal, Howard; Horwitz, Steven; Kissane, David W

2016-01-01

Introduction Survivors of cancer often describe a sense of abandonment post-treatment, with heightened worry, uncertainty, fear of recurrence and limited understanding of what lies ahead. This study examines the efficacy of a communication skills training (CST) intervention to help physicians address survivorship issues and introduce a new consultation focused on the use of a survivorship care plan for patients with Hodgkin's lymphoma and diffuse large B-cell lymphoma. Methods and analysis Specifically, this randomised, 4-site trial will test the efficacy of a survivorship planning consultation (physicians receive CST and apply these skills in a new survivorship-focused office visit using a survivorship plan) with patients who have achieved complete remission after completion of first-line therapy versus a control arm in which physicians are trained to subsequently provide a time-controlled, manualised wellness rehabilitation consultation focused only on discussion of healthy nutrition and exercise as rehabilitation postchemotherapy. The primary outcome for physicians will be uptake and usage of communication skills and maintenance of these skills over time. The primary outcome for patients is changes in knowledge about lymphoma and adherence to physicians’ recommendations (eg, pneumococcus and influenza vaccinations); secondary outcomes will include perceptions of the doctor–patient relationship, decreased levels of cancer worry and depression, quality of life changes, satisfaction with care and usage of healthcare. This study will also examine the moderators and mediators of change within our theoretical model derived from Leventhal's Common-Sense Model of health beliefs. Ethics and dissemination This study was approved by the Institutional Review Boards at Memorial Sloan Kettering Cancer Centers and all other participating sites. This work is funded by the National Cancer Institute (R01 CA 151899 awarded to DWK and SH as coprincipal investigators). The

Protocol for a cluster randomised trial of a communication skills intervention for physicians to facilitate survivorship transition in patients with lymphoma.

PubMed

Parker, Patricia A; Banerjee, Smita C; Matasar, Matthew J; Bylund, Carma L; Franco, Kara; Li, Yuelin; Levin, Tomer T; Jacobsen, Paul B; Astrow, Alan B; Leventhal, Howard; Horwitz, Steven; Kissane, David W

2016-06-28

Survivors of cancer often describe a sense of abandonment post-treatment, with heightened worry, uncertainty, fear of recurrence and limited understanding of what lies ahead. This study examines the efficacy of a communication skills training (CST) intervention to help physicians address survivorship issues and introduce a new consultation focused on the use of a survivorship care plan for patients with Hodgkin's lymphoma and diffuse large B-cell lymphoma. Specifically, this randomised, 4-site trial will test the efficacy of a survivorship planning consultation (physicians receive CST and apply these skills in a new survivorship-focused office visit using a survivorship plan) with patients who have achieved complete remission after completion of first-line therapy versus a control arm in which physicians are trained to subsequently provide a time-controlled, manualised wellness rehabilitation consultation focused only on discussion of healthy nutrition and exercise as rehabilitation postchemotherapy. The primary outcome for physicians will be uptake and usage of communication skills and maintenance of these skills over time. The primary outcome for patients is changes in knowledge about lymphoma and adherence to physicians' recommendations (eg, pneumococcus and influenza vaccinations); secondary outcomes will include perceptions of the doctor-patient relationship, decreased levels of cancer worry and depression, quality of life changes, satisfaction with care and usage of healthcare. This study will also examine the moderators and mediators of change within our theoretical model derived from Leventhal's Common-Sense Model of health beliefs. This study was approved by the Institutional Review Boards at Memorial Sloan Kettering Cancer Centers and all other participating sites. This work is funded by the National Cancer Institute (R01 CA 151899 awarded to DWK and SH as coprincipal investigators). The content is solely the responsibility of the authors and does not

GSCALite: A Web Server for Gene Set Cancer Analysis.

PubMed

Liu, Chun-Jie; Hu, Fei-Fei; Xia, Mengxuan; Han, Leng; Zhang, Qiong; Guo, An-Yuan

2018-05-22

The availability of cancer genomic data makes it possible to analyze genes related to cancer. Cancer is usually the result of a set of genes and the signal of a single gene could be covered by background noise. Here, we present a web server named Gene Set Cancer Analysis (GSCALite) to analyze a set of genes in cancers with the following functional modules. (i) Differential expression in tumor vs normal, and the survival analysis; (ii) Genomic variations and their survival analysis; (iii) Gene expression associated cancer pathway activity; (iv) miRNA regulatory network for genes; (v) Drug sensitivity for genes; (vi) Normal tissue expression and eQTL for genes. GSCALite is a user-friendly web server for dynamic analysis and visualization of gene set in cancer and drug sensitivity correlation, which will be of broad utilities to cancer researchers. GSCALite is available on http://bioinfo.life.hust.edu.cn/web/GSCALite/. guoay@hust.edu.cn or zhangqiong@hust.edu.cn. Supplementary data are available at Bioinformatics online.

Development and Preliminary Testing of PROGRESS: A Web-based Education Program for Prostate Cancer Survivors Transitioning from Active Treatment

PubMed Central

Miller, Suzanne M.; Hudson, Shawna V.; Hui, Siu-kuen Azor; Diefenbach, Michael A.; Fleisher, Linda; Raivitch, Stephanie; Belton, Tanisha; Roy, Gem; Njoku, Anuli; Scarpato, John; Viterbo, Rosalia; Buyyounouski, Mark; Denlinger, Crystal; Miyamoto, Curtis; Reese, Adam; Baman, Jayson

2015-01-01

Purpose This formative research study describes the development and preliminary evaluation of a theory-guided, on-line multimedia psycho-educational program (PROGRESS) designed to facilitate adaptive coping among prostate cancer patients transitioning from treatment into long-term survivorship. Methods Guided by the Cognitive-Social Health Information Processing Model (C-SHIP) and using health communications best practices, we conducted a two phase, qualitative formative research study with early stage prostate cancer patients (n=29) to inform the web program development. Phase 1 included individual (n=5) and group (n=12) interviews to help determine intervention content and interface. Phase 2 employed iterative user/usability testing (n=12) to finalize the intervention. Interview data were independently coded and collectively analyzed to achieve consensus. Results Survivors expressed interest in action-oriented content on: (1) managing treatment side effects; (2) handling body image and co-morbidities related to overweight/obesity; (3) coping with emotional and communication issues; (4) tips to reduce disruptions of daily living activities, and (5) health skills training tools. Patients also desired the use of realistic and diverse survivor images. Conclusions Incorporation of an established theoretical framework, application of multimedia intervention development best practices, and an evidence-based approach to content and format, resulted in a psycho-educational tool that comprehensively addresses survivors' needs in a tailored fashion. Implications for Cancer Survivors The results suggest that an interactive web-based multimedia program is useful for survivors if it covers the key topics of symptom control, emotional well-being, and coping skills training; this tool has the potential to be disseminated and implemented as an adjunct to routine clinical care. PMID:25697335

Early survivorship of juvenile coral reef fishes

NASA Astrophysics Data System (ADS)

Sale, Peter F.; Ferrell, Douglas J.

1988-12-01

Data on early survivorship of newly settled reef fish were collected by monitoring individuals which recruited to 30 small lagoonal patch reefs over three summers. Preliminary survivorship curves spanning the first 45 days after settlement were derived for 17 species. Most species showed greatest rates of mortality in the first 1 2 weeks in the reef environment however there were substantial differences among species in the extent and the temporal pattern of this. In six species, 75% of individuals survived the 45 days, while in 5 others, 20% or fewer survived that long. In eight species, mortality was negligible after the first 14 days. In the other 9, significant mortality occurred in subsequent weeks. Patterns of survivorship did not appear to differ substantially among years in five of the six species for which data were adequate. In particular, survivorship did not appear to be different among years even when levels of recruitment varied greatly.

Breast-cancer-isation explored: Social experiences of gynaecological cancer in a Norwegian context.

PubMed

Solbraekke, Kari Nyheim; Lorem, Geir

2016-11-01

This article's point of departure is recent claims that breast cancer survivorship displaying positivity and self-growth represents the gold standard for all forms of cancer survivorship in English-speaking Western cultures. An interview study of Norwegian women regarding gynaecological cancer followed by hysterectomy is used to explore whether this process is taking place beyond this setting. Results show that the women's experiences of having to display survivorship in this manner are not as notable as found in English-speaking Western countries, neither is their experience of social othering. Reasons for this may be strong norms of social egalitarianism marking Norwegian culture and breast cancer informational campaigns that have not yet totally defined Norwegian norms for how to survive cancer. At the clinic and in the public sphere, however, the women experience gynaecological cancer as clearly having lower status than breast cancer, leading to a strong sense that the bodily site of their disease is taboo. Hence, as found in English-speaking cultures, the complex embodied nature of having gynaecological cancer and life beyond treatment seems to be silenced by the media and medical institutions. Finally, implications for future research and health care related to cancer survivorship are also discussed. © 2016 Foundation for the Sociology of Health & Illness.

Accelerating Cancer Systems Biology Research through Semantic Web Technology

PubMed Central

Wang, Zhihui; Sagotsky, Jonathan; Taylor, Thomas; Shironoshita, Patrick; Deisboeck, Thomas S.

2012-01-01

Cancer systems biology is an interdisciplinary, rapidly expanding research field in which collaborations are a critical means to advance the field. Yet the prevalent database technologies often isolate data rather than making it easily accessible. The Semantic Web has the potential to help facilitate web-based collaborative cancer research by presenting data in a manner that is self-descriptive, human and machine readable, and easily sharable. We have created a semantically linked online Digital Model Repository (DMR) for storing, managing, executing, annotating, and sharing computational cancer models. Within the DMR, distributed, multidisciplinary, and inter-organizational teams can collaborate on projects, without forfeiting intellectual property. This is achieved by the introduction of a new stakeholder to the collaboration workflow, the institutional licensing officer, part of the Technology Transfer Office. Furthermore, the DMR has achieved silver level compatibility with the National Cancer Institute’s caBIG®, so users can not only interact with the DMR through a web browser but also through a semantically annotated and secure web service. We also discuss the technology behind the DMR leveraging the Semantic Web, ontologies, and grid computing to provide secure inter-institutional collaboration on cancer modeling projects, online grid-based execution of shared models, and the collaboration workflow protecting researchers’ intellectual property. PMID:23188758

Accelerating cancer systems biology research through Semantic Web technology.

PubMed

Wang, Zhihui; Sagotsky, Jonathan; Taylor, Thomas; Shironoshita, Patrick; Deisboeck, Thomas S

2013-01-01

Cancer systems biology is an interdisciplinary, rapidly expanding research field in which collaborations are a critical means to advance the field. Yet the prevalent database technologies often isolate data rather than making it easily accessible. The Semantic Web has the potential to help facilitate web-based collaborative cancer research by presenting data in a manner that is self-descriptive, human and machine readable, and easily sharable. We have created a semantically linked online Digital Model Repository (DMR) for storing, managing, executing, annotating, and sharing computational cancer models. Within the DMR, distributed, multidisciplinary, and inter-organizational teams can collaborate on projects, without forfeiting intellectual property. This is achieved by the introduction of a new stakeholder to the collaboration workflow, the institutional licensing officer, part of the Technology Transfer Office. Furthermore, the DMR has achieved silver level compatibility with the National Cancer Institute's caBIG, so users can interact with the DMR not only through a web browser but also through a semantically annotated and secure web service. We also discuss the technology behind the DMR leveraging the Semantic Web, ontologies, and grid computing to provide secure inter-institutional collaboration on cancer modeling projects, online grid-based execution of shared models, and the collaboration workflow protecting researchers' intellectual property. Copyright © 2012 Wiley Periodicals, Inc.

President Signs STAR Act for Kids' Cancers.

PubMed

2018-06-07

On June 5, President Donald Trump signed the Childhood Cancer Survivorship, Treatment, Access and Research Act, which aims to support pediatric cancer research by expanding the collection of patient biospecimens and records, improving surveillance, and investigating pediatric survivorship. ©2018 American Association for Cancer Research.

Cancer-Related Fatigue in Cancer Survivorship.

PubMed

Ebede, Chidinma C; Jang, Yongchang; Escalante, Carmen P

2017-11-01

Cancer-related fatigue (CRF) significantly interferes with usual functioning because of the distressing sense of physical, emotional, and cognitive exhaustion. Assessment of CRF is important and should be performed during the initial cancer diagnosis, throughout cancer treatment, and after treatment using a fatigue scoring scale (mild-severe). The general approach to CRF management applies to cancer survivors at all fatigue levels and includes education, counseling, and other strategies. Nonpharmacologic interventions include psychosocial interventions, exercise, yoga, physically based therapy, dietary management, and sleep therapy. Pharmacologic interventions include psychostimulants. Antidepressants may also benefit when CRF is accompanied by depression. Copyright © 2017 Elsevier Inc. All rights reserved.

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.

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

2018-01-01

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 2018;124:183-91. © 2017 American Cancer Society. © 2017 American Cancer Society.

Cardiotoxicity Following Cancer Treatment

PubMed Central

Lyon, AR; Harbinson, MT; Hanna, GG

2017-01-01

More than half of those born after 1960 will develop cancer during their lifetime. Fortunately, owing to improved diagnosis and treatment, cure rates have risen steadily over the last three decades. With an increased survivorship, more will experience adverse effects of cancer therapeutics on the heart. As the oncologist’s focus begins to encompass the issues of cancer survivorship, awareness of the management of cardiac toxicity would be prudent for all physicians looking after patients with cancer. PMID:28298705

Use of Survivorship Care Plans and Analysis of Patient-Reported Outcomes in Multinational Patients With Lung Cancer.

PubMed

Berman, Abigail T; DeCesaris, Cristina M; Simone, Charles B; Vachani, Carolyn; DiLullo, Gloria; Hampshire, Margaret K; Metz, James; Hill-Kayser, Christine

2016-05-01

Lung cancer is the leading cause of cancer death and is a significant source of morbidity. Patient-reported outcomes (PROs) have been shown to be prognostic for survival. We have analyzed emerging patterns of longitudinal PROs collected in the development of survivorship care plans (SCPs). OncoLife and the LIVESTRONG Care Plans are Internet-based programs designed to generate unique SCPs. We selected SCPs from patients identifying as survivors of primary lung cancer. Patient-reported demographics and treatment and toxicity data were examined. Effects were categorized by the physiologic system that they affected. Six hundred eighty-nine plans were created for users self-identifying as survivors of primary lung cancer. Average time from diagnosis to reporting was 1.68 years (range, 0 to 24 years). Most were white (85.9%), well educated (61.1% "some college" or higher), and lived in the United States (90.7%). Patients underwent chemotherapy (75.8%), radiotherapy (54.7%), and surgery (54.4%). Neurocognitive symptoms (eg, fatigue, cognitive changes) were the most common (48.8%), especially among those receiving chemotherapy, followed by musculoskeletal/dermatologic symptoms (14.1%) and thoracic symptoms (13.5%). Only 11.2% were initially offered an SCP. Of those offered SCPs, 54.5% were offered by their health care provider, and most often were at a non-university-based cancer center (66.2%). For patients with lung cancer worldwide, it is feasible to obtain PROs and to create SCPs through an Internet-based program. As patients with lung cancer achieve improved survival, further attention should be paid to PROs. Surprisingly, neurocognitive symptoms seem to be the most common issues and therefore the most important to address. Increased effort should be made to provide SCPs, particularly in urban and university cancer center settings. Copyright © 2016 by American Society of Clinical Oncology.

Designing a multifaceted survivorship care plan to meet the information and communication needs of breast cancer patients and their family physicians: results of a qualitative pilot study.

PubMed

Haq, Rashida; Heus, Lineke; Baker, Natalie A; Dastur, Daisy; Leung, Fok-Han; Leung, Eman; Li, Benjamin; Vu, Kathy; Parsons, Janet A

2013-07-25

Following the completion of treatment and as they enter the follow-up phase, breast cancer patients (BCPs) often recount feeling 'lost in transition', and are left with many questions concerning how their ongoing care and monitoring for recurrence will be managed. Family physicians (FPs) also frequently report feeling ill-equipped to provide follow-up care to BCPs. In this three-phase qualitative pilot study we designed, implemented and evaluated a multi-faceted survivorship care plan (SCP) to address the information needs of BCPs at our facility and of their FPs. In Phase 1 focus groups and individual interviews were conducted with 35 participants from three stakeholder groups (BCPs, FPs and oncology specialist health care providers (OHCPs)), to identify specific information needs. An SCP was then designed based on these findings, consisting of both web-based and paper-based tools (Phase 2). For Phase 3, both sets of tools were subsequently evaluated via focus groups and interviews with 26 participants. Interviews and focus groups were audio taped, transcribed and content analysed for emergent themes and patterns. In Phase 1 patients commented that web-based, paper-based and human resources components were desirable in any SCP. Patients did not focus exclusively on the post-treatment period, but instead spoke of evolving needs throughout their cancer journey. FPs indicated that any tools to support them must distill important information in a user-friendly format. In Phase 2, a pilot SCP was subsequently designed, consisting of both web-based and paper-based materials tailored specifically to the needs of BCPs as well as FPs. During Phase 3 (evaluation) BCPs indicated that the SCP was effective at addressing many of their needs, and offered suggestions for future improvements. Both patients and FPs found the pilot SCP to be an improvement from the previous standard of care. Patients perceived the quality of the BCP-FP relationship as integral to their comfort with

Brief review: pain management for cancer survivors: challenges and opportunities.

PubMed

Yazdani, Shiraz; Abdi, Salahadin

2014-08-01

As the number of cancer survivors continues to increase due to advances in medicine, many cancer survivors remain on their same pain management regimen long after their cancer treatment has been completed. Thus, the purpose of this review is to encourage awareness of the challenges and opportunities of pain management in cancer survivorship. It is our expectation that these patients will be referred to pain medicine specialists so their pain management can be optimized during the period of survivorship and ultimately improve their quality of life. Cancer and its treatment can cause significant pain which requires multidrug therapy, including strong analgesics such as opioids. Optimal pain management has been shown to improve the quality of life of cancer patients, and that is also true for cancer survivors. Nevertheless, the appropriate use of pain medications, especially opioids, must be re-evaluated and adjusted during treatment as the patient transitions into survivorship care and thereafter. This may otherwise result in unnecessary opioid use or may even lead to abuse. Fortunately, as cancer treatment is completed and the survivorship period begins, pain improves gradually and the need for pain medication should decrease. Unfortunately, some patients continue to take their potent analgesics during the period of survivorship although it may not be necessary. It is a challenge for pain practitioners who do not see these patients early in their disease or in the recovery period. Nevertheless, this challenge presents an opportunity for pain management providers to educate oncologists to refer cancer survivors to pain centres early during the period of their survivorship. Cancer survivors could then receive optimal care and maintain a better quality of life without having to take unnecessary pain medications. It is clear that there is a need to improve pain management in cancer patients, particularly in cancer survivors. Pain physicians should play a critical role

Cancer Survivorship Care Plan Utilization and Impact on Clinical Decision-Making at Point-of-Care Visits with Primary Care: Results from an Engineering, Primary Care, and Oncology Collaborative for Survivorship Health.

PubMed

Donohue, SarahMaria; Haine, James E; Li, Zhanhai; Feldstein, David A; Micek, Mark; Trowbridge, Elizabeth R; Kamnetz, Sandra A; Sosman, James M; Wilke, Lee G; Sesto, Mary E; Tevaarwerk, Amye J

2017-11-02

Every cancer survivor and his/her primary care provider should receive an individualized survivorship care plan (SCP) following curative treatment. Little is known regarding point-of-care utilization at primary care visits. We assessed SCP utilization in the clinical context of primary care visits. Primary care physicians and advanced practice providers (APPs) who had seen survivors following provision of an SCP were identified. Eligible primary care physicians and APPs were sent an online survey, evaluating SCP utilization and influence on decision-making at the point-of-care, accompanied by copies of the survivor's SCP and the clinic note. Eighty-eight primary care physicians and APPs were surveyed November 2016, with 40 (45%) responding. Most respondents (60%) reported discussing cancer or related issues during the visit. Information needed included treatment (66%) and follow-up visits, and the cancer team was responsible for (58%) vs primary care (58%). Respondents acquired this information by asking the patient (79%), checking oncology notes (75%), the SCP (17%), or online resources (8%). Barriers to SCP use included being unaware of the SCP (73%), difficulty locating it (30%), and finding needed information faster via another mechanism (15%). Despite largely not using the SCP for the visit (90%), most respondents (61%) believed one would be quite or very helpful for future visits. Most primary care visits included discussion of cancer or cancer-related issues. SCPs may provide the information necessary to deliver optimal survivor care but efforts are needed to reduce barriers and design SCPs for primary care use.

"I might not have cancer if you didn't mention it": a qualitative study on information needed by culturally diverse cancer survivors.

PubMed

O'Callaghan, Clare; Schofield, Penelope; Butow, Phyllis; Nolte, Linda; Price, Melanie; Tsintziras, Spiri; Sze, Ming; Thein, Thida; Yiu, Dorothy; Mireskandari, Shab; Goldstein, David; Jefford, Michael

2016-01-01

Immigrants from culturally and linguistically diverse (CALD) backgrounds diagnosed with cancer face multiple challenges with health systems foreign to them. There is scarce understanding about their needs following cancer treatment in the survivorship phase. Unmet needs were examined in immigrant Chinese and Greek cancer survivors in order to assist development of relevant and useful information resources for these CALD groups. Qualitative descriptive design was used. Adult cancer survivors, whose native language was Mandarin, Cantonese or Greek, were recruited through ethnic cancer support groups and cancer specialists in two Australian cities. Six focus groups were conducted, two in each native language group. Recorded responses were transcribed, translated into English, and thematically analysed. Thirty-nine CALD cancer survivors participated from Greek (11), Cantonese (14) and Mandarin (14) backgrounds. Thematic findings included as follows: ongoing cancer-related stressors, cancer misunderstandings, coping strategies, 'survivor' seldom reflects self-appraisal, and additional CALD survivorship information needed. Immigrant cancer survivors may prefer 'recovery' to 'survivorship' descriptors and need information similar to Caucasian cancer survivors alongside as follows: resources for navigating health care, financial and community entitlements; caregiver-directed information to enhance their support; explanations about differences in health care approaches between survivors' original and adopted countries; and acknowledgment of survivorship diversity within CALD groups. Immigrant cancer survivors' additional requirements to native survivors likely reflect challenges in dealing with foreign environments and varied levels of acculturation within group members. Identification of immigrant cancer survivorship issues may support development of targeted resources for promoting survivors' self-care and capacity for finding, choosing, and using existing support options.

Cancer cachexia: global awareness and guideline implementation on the web.

PubMed

Mauri, Davide; Tsiara, Anna; Valachis, Antonis; Kalopita, Konstantina; Tsali, Lampriani; Tolis, Panagiotis; Polyzos, Nikolaos P

2013-06-01

Cancer cachexia is a common associate of cancer and has a negative impact on patients' survival. Nonetheless, cancer cachexia assessment and management are frequently less than satisfactory in daily practice. To scrutinise global cancer cachexia awareness and relative web guideline implementation among oncology societies. Systematical identification of scientific and policymaker oncology societies and their guideline implementation on cancer cachexia. Assessment of the general level of awareness on cancer cachexia and evaluation of intercontinental and national variations on guideline implementation. 144,000 web pages were scrutinised, and 275 oncology societies identified covering a large array of oncology setting (educational/clinical/research/policymaker); 71 were international (African, American, Asian, European, Oceania and Intercontinental), 110 belonged to the top 10 countries with the highest development index and 94 pertained to 10 countries with a long lasting tradition in medical oncology (not included in the top 10 high developed countries). Overall, only 10/275 web sites provided guidelines; six of them (2.2%) provided guidelines for physicians and four (0.7%) for patients. Half of the guidelines (4/10) were outdated. All guidelines for physicians reported references, while only one of the recommendations for patients reported references to support its sentences. Cancer cachexia global awareness appears extremely low; guideline implementation on the web was inconsistent for any category analysed (nation vs continent vs international vs society type vs physician vs patient oriented) and for updating.

Who Is a Cancer Survivor? A Systematic Review of Published Definitions.

PubMed

Marzorati, Chiara; Riva, Silvia; Pravettoni, Gabriella

2017-06-01

The term "cancer survivor" is commonly used by different persons, clinical institutions, academic bodies, and political organizations although it lacks of a unanimous and detailed definition. The objective of the study is to make a systematic review of published and proposed definitions of "cancer survivor." Utilizing a systematic search strategy with different strings of "cancer survivor," we searched the following databases: Medline (June 1975-June 2015), Scopus (all the years), Web of Science (all the years), Google Scholar (all the years), ERIC (all the years). This review suggests that there is not a unique definition of who is a "cancer survivor" and what is "cancer survivorship." However, the most widely used definition sees cancer survivorship as a process that begins at the moment of diagnosis and continues through the balance of life. This definition highlights psychological and legal patient's needs-as well as medical ones-to receive care and assistance from the beginning and, at the same time, it establishes valid criteria for making scientific and statistical sampling research. The extensive use of the term "cancer survivor" indicates that it is a significant term. This review has been written to outline the state of the art and it invites to reflect on a shared definition that could satisfy both clinical and research aspects. Implication for cancer survivors: this compendium of proposed definitions may improve communication among the many patients and patient organizations that use and work with this term.

Breast cancer prevention across the cancer care continuum.

PubMed

Klemp, Jennifer R

2015-05-01

To review the current state of breast cancer prevention from primary prevention through survivorship, highlight cross-cutting issues, and discuss strategies for clinical integration and future research. Published articles between 1985 and 2015 and original research. Cancer risk persists across the lifespan. Interprofessional strategies to reduce morbidity and mortality from cancer include primary, secondary, and tertiary prevention (survivorship). Prevention strategies across the cancer care continuum are cross-cutting and focus on measures to: prevent the onset of disease, identify and treat asymptomatic persons who have already developed risk factors or preclinical disease, and restore function, minimize the negative effects of disease, and prevent disease-related complications. Oncology nurses and advanced practice nurses are vital in the delivery of breast cancer prevention strategies. Published by Elsevier Inc.

Latina breast cancer survivors' lived experiences: diagnosis, treatment, and beyond.

PubMed

Buki, Lydia P; Garcés, D Marcela; Hinestrosa, M Carolina; Kogan, Lori; Carrillo, Iris Y; French, Bryana

2008-04-01

Latina breast cancer survivors are not benefiting from advances in psychosocial interventions. Despite their greater breast cancer burden, there is a dearth of information about this population. This qualitative study examined the experiences of 18 immigrant Latina breast cancer survivors along the survivorship continuum, from diagnosis to long-term survivorship. The authors conducted separate focus groups with women in the acute, reentry, and long-term survivorship stages. Through grounded theory analysis, the authors uncovered 5 themes of experience: perceptions of psychological well-being, impact of diagnosis, impact of treatment, need for social support, and development of new attitudes. Some themes were applicable across all survivorship stages, whereas others were more salient at a particular stage. Within themes, the authors identified experiences reported in the general literature (i.e., the debilitating effect of chemotherapy) and distinct cultural experiences (i.e., fear that a cancer diagnosis leads to certain death). Results suggest that treatments tailored for each survivorship stage are more likely to be effective than generic interventions. These findings have the potential to lessen health disparities in utilization of psychosocial treatments by Latina breast cancer survivors.

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

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.

Breast cancer: patient information needs reflected in English and German web sites.

PubMed

Weissenberger, C; Jonassen, S; Beranek-Chiu, J; Neumann, M; Müller, D; Bartelt, S; Schulz, S; Mönting, J S; Henne, K; Gitsch, G; Witucki, G

2004-10-18

Individual belief and knowledge about cancer were shown to influence coping and compliance of patients. Supposing that the Internet information both has impact on patients and reflects patients' information needs, breast cancer web sites in English and German language were evaluated to assess the information quality and were compared with each other to identify intercultural differences. Search engines returned 10 616 hits related to breast cancer. Of these, 4590 relevant hits were analysed. In all, 1888 web pages belonged to 132 English-language web sites and 2702 to 65 German-language web sites. Results showed that palliative therapy (4.5 vs 16.7%; P=0.004), alternative medicine (18.2 vs 46.2%; P<0.001), and disease-related information (prognosis, cancer aftercare, self-help groups, and epidemiology) were significantly more often found on German-language web sites. Therapy-related information (including the side effects of therapy and new studies) was significantly more often given by English-language web sites: for example, details about surgery, chemotherapy, radiotherapy, hormone therapy, immune therapy, and stem cell transplantation. In conclusion, our results have implications for patient education by physicians and may help to improve patient support by tailoring information, considering the weak points in information provision by web sites and intercultural differences in patient needs.

A novel web informatics approach for automated surveillance of cancer mortality trends✩

PubMed Central

Tourassi, Georgia; Yoon, Hong-Jun; Xu, Songhua

2016-01-01

Cancer surveillance data are collected every year in the United States via the National Program of Cancer Registries (NPCR) and the Surveillance, Epidemiology and End Results (SEER) Program of the National Cancer Institute (NCI). General trends are closely monitored to measure the nation's progress against cancer. The objective of this study was to apply a novel web informatics approach for enabling fully automated monitoring of cancer mortality trends. The approach involves automated collection and text mining of online obituaries to derive the age distribution, geospatial, and temporal trends of cancer deaths in the US. Using breast and lung cancer as examples, we mined 23,850 cancer-related and 413,024 general online obituaries spanning the timeframe 2008–2012. There was high correlation between the web-derived mortality trends and the official surveillance statistics reported by NCI with respect to the age distribution (ρ = 0.981 for breast; ρ = 0.994 for lung), the geospatial distribution (ρ = 0.939 for breast; ρ = 0.881 for lung), and the annual rates of cancer deaths (ρ = 0.661 for breast; ρ = 0.839 for lung). Additional experiments investigated the effect of sample size on the consistency of the web-based findings. Overall, our study findings support web informatics as a promising, cost-effective way to dynamically monitor spatiotemporal cancer mortality trends. PMID:27044930

A novel web informatics approach for automated surveillance of cancer mortality trends

DOE Office of Scientific and Technical Information (OSTI.GOV)

Tourassi, Georgia; Yoon, Hong -Jun; Xu, Songhua

Cancer surveillance data are collected every year in the United States via the National Program of Cancer Registries (NPCR) and the Surveillance, Epidemiology and End Results (SEER) Program of the National Cancer Institute (NCI). General trends are closely monitored to measure the nation’s progress against cancer. The objective of this study was to apply a novel web informatics approach for enabling fully automated monitoring of cancer mortality trends. The approach involves automated collection and text mining of online obituaries to derive the age distribution, geospatial, and temporal trends of cancer deaths in the US. Using breast and lung cancer asmore » examples, we mined 23,850 cancer-related and 413,024 general online obituaries spanning the timeframe 2008–2012. There was high correlation between the web-derived mortality trends and the official surveillance statistics reported by NCI with respect to the age distribution (ρ = 0.981 for breast; ρ = 0.994 for lung), the geospatial distribution (ρ = 0.939 for breast; ρ = 0.881 for lung), and the annual rates of cancer deaths (ρ = 0.661 for breast; ρ = 0.839 for lung). Additional experiments investigated the effect of sample size on the consistency of the web-based findings. Altogether, our study findings support web informatics as a promising, cost-effective way to dynamically monitor spatiotemporal cancer mortality trends.« less

A novel web informatics approach for automated surveillance of cancer mortality trends

DOE PAGES

Tourassi, Georgia; Yoon, Hong -Jun; Xu, Songhua

2016-04-01

Cancer surveillance data are collected every year in the United States via the National Program of Cancer Registries (NPCR) and the Surveillance, Epidemiology and End Results (SEER) Program of the National Cancer Institute (NCI). General trends are closely monitored to measure the nation’s progress against cancer. The objective of this study was to apply a novel web informatics approach for enabling fully automated monitoring of cancer mortality trends. The approach involves automated collection and text mining of online obituaries to derive the age distribution, geospatial, and temporal trends of cancer deaths in the US. Using breast and lung cancer asmore » examples, we mined 23,850 cancer-related and 413,024 general online obituaries spanning the timeframe 2008–2012. There was high correlation between the web-derived mortality trends and the official surveillance statistics reported by NCI with respect to the age distribution (ρ = 0.981 for breast; ρ = 0.994 for lung), the geospatial distribution (ρ = 0.939 for breast; ρ = 0.881 for lung), and the annual rates of cancer deaths (ρ = 0.661 for breast; ρ = 0.839 for lung). Additional experiments investigated the effect of sample size on the consistency of the web-based findings. Altogether, our study findings support web informatics as a promising, cost-effective way to dynamically monitor spatiotemporal cancer mortality trends.« less

Linking Dispositional Mindfulness and Positive Psychological Processes in Cancer Survivorship: A Multivariate Path Analytic Test of the Mindfulness-to-Meaning Theory

PubMed Central

Garland, Eric L.; Thielking, Paul; Thomas, Elizabeth A.; Coombs, Mary; White, Shelley; Lombardi, Joy; Beck, Anna

2016-01-01

Background 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. Methods 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. Results 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). Conclusions 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. PMID:26799620

The validity of survivorship analysis in total joint arthroplasty.

PubMed

Dorey, F; Amstutz, H C

1989-04-01

The use of survivorship analysis requires an assumption that patients who are lost to follow-up are no more or less likely to be at risk of failure of an operation or a procedure than are patients who are still being followed. This is a major assumption in long-term orthopaedic studies, in which a high percentage of patients are usually lost to follow-up. We compared the survivorship curve for the first 100 Tharies replacements done at our institution (which were completed by September 1977), using data that were collected in the standard way up to 1985, through a letter requesting a follow-up visit, with the curve for the same patients that was based on almost complete follow-up data that were gathered by telephone from 1985 on. The similarity of the two curves suggested that the assumptions that are necessary for the validity of survivorship analysis are reasonable, even in the orthopaedic setting, in which many patients are lost to follow-up. The usefulness of the survivorship curve for prediction was also evaluated by comparing the curve based on the first forty-six of the 100 Tharies replacements (before 1977) with the curve based on the last fifty-four such operations (from January 1977 to September 1977). The results of these two comparisons suggest that survivorship analysis is a valid technique to use in the long-term evaluation of patients who have had a joint replacement.

Proximal tibial osteotomy. A survivorship analysis.

PubMed

Ritter, M A; Fechtman, R A

1988-01-01

Proximal tibial osteotomy is generally accepted as a treatment for the patient with unicompartmental arthritis. However, a few reports of the long-term results of this procedure are available in the literature, and none have used the technique known as survivorship analysis. This technique has an advantage over conventional analysis because it does not exclude patients for inadequate follow-up, loss to follow-up, or patient death. In this study, survivorship analysis was applied to 78 proximal tibial osteotomies, performed exclusively by the senior author for the correction of a preoperative varus deformity, and a survival curve was constructed. It was concluded that the reliable longevity of the proximal tibial osteotomy is approximately 6 years.

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.

The University of Michigan Sarcoma Survivorship Clinic: Preventing, Diagnosing, and Treating Chronic Illness for Improved Survival and Long-Term Health.

PubMed

Bobowski, Nina P; Baker, Laurence H

2016-09-01

The Children's Cancer Survivorship Study reports more chronic illnesses in sarcoma survivors than other pediatric cancers. Chemotherapy and radiation put survivors at risk for developing chronic illnesses, including heart disease, diabetes, hypertension, and kidney failure. Sarcoma survivors may have a reduced life expectancy and signs of heart disease in their 30s and 40s. Since these medical problems occur much later in the general population, they often go undetected or misdiagnosed in sarcoma survivors, creating delays in intervention and treatment. The good news is that these chronic illnesses can often be prevented or minimized. The most common adverse effect of chemotherapy and radiation is coronary artery disease (CAD). CAD has a number of risk factors, including hypertension, diabetes, obesity, and dyslipidemia. These risk factors are modifiable with lifestyle changes, including diet and exercise, and/or pharmacological intervention. By identifying and managing risk factors like hypertension early, we in turn reduce the risk for CAD and prolong survival. This is well established in the general population; there is no reason a priori not to apply it to sarcoma survivors. Sarcoma survivors should be followed by physicians who understand the late effects and outcomes of sarcoma treatment. The University of Michigan Sarcoma Survivorship Clinic provides long-term care for sarcoma survivors by preventing, diagnosing, and treating the adverse long-term physical and psychological effects associated with sarcoma survivorship.

[A systematic evaluation of application of the web-based cancer database].

PubMed

Huang, Tingting; Liu, Jialin; Li, Yong; Zhang, Rui

2013-10-01

In order to support the theory and practice of the web-based cancer database development in China, we applied a systematic evaluation to assess the development condition of the web-based cancer databases at home and abroad. We performed computer-based retrieval of the Ovid-MEDLINE, Springerlink, EBSCOhost, Wiley Online Library and CNKI databases, the papers of which were published between Jan. 1995 and Dec. 2011, and retrieved the references of these papers by hand. We selected qualified papers according to the pre-established inclusion and exclusion criteria, and carried out information extraction and analysis of the papers. Eventually, searching the online database, we obtained 1244 papers, and checking the reference lists, we found other 19 articles. Thirty-one articles met the inclusion and exclusion criteria and we extracted the proofs and assessed them. Analyzing these evidences showed that the U.S.A. counted for 26% in the first place. Thirty-nine percent of these web-based cancer databases are comprehensive cancer databases. As for single cancer databases, breast cancer and prostatic cancer are on the top, both counting for 10% respectively. Thirty-two percent of the cancer database are associated with cancer gene information. For the technical applications, MySQL and PHP applied most widely, nearly 23% each.

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

[A web-based integrated clinical database for laryngeal cancer].

PubMed

E, Qimin; Liu, Jialin; Li, Yong; Liang, Chuanyu

2014-08-01

To establish an integrated database for laryngeal cancer, and to provide an information platform for laryngeal cancer in clinical and fundamental researches. This database also meet the needs of clinical and scientific use. Under the guidance of clinical expert, we have constructed a web-based integrated clinical database for laryngeal carcinoma on the basis of clinical data standards, Apache+PHP+MySQL technology, laryngeal cancer specialist characteristics and tumor genetic information. A Web-based integrated clinical database for laryngeal carcinoma had been developed. This database had a user-friendly interface and the data could be entered and queried conveniently. In addition, this system utilized the clinical data standards and exchanged information with existing electronic medical records system to avoid the Information Silo. Furthermore, the forms of database was integrated with laryngeal cancer specialist characteristics and tumor genetic information. The Web-based integrated clinical database for laryngeal carcinoma has comprehensive specialist information, strong expandability, high feasibility of technique and conforms to the clinical characteristics of laryngeal cancer specialties. Using the clinical data standards and structured handling clinical data, the database can be able to meet the needs of scientific research better and facilitate information exchange, and the information collected and input about the tumor sufferers are very informative. In addition, the user can utilize the Internet to realize the convenient, swift visit and manipulation on the database.

Spiritually Based Resources in Adaptation to Long-Term Prostate Cancer Survival: Perspectives of Elderly Wives

ERIC Educational Resources Information Center

Ka'opua, Lana Sue I.; Gotay, Carolyn C.; Boehm, Patricia S.

2007-01-01

Spiritually based resources (SBR) generally have a salutary effect on coping with cancer diagnosis and treatment. Few studies address this relationship in long-term cancer survivorship, however. As part of a study on long-term prostate cancer survivorship, wives' ways of coping with cancer-related issues were explored through longitudinal…

Web-TCGA: an online platform for integrated analysis of molecular cancer data sets.

PubMed

Deng, Mario; Brägelmann, Johannes; Schultze, Joachim L; Perner, Sven

2016-02-06

The Cancer Genome Atlas (TCGA) is a pool of molecular data sets publicly accessible and freely available to cancer researchers anywhere around the world. However, wide spread use is limited since an advanced knowledge of statistics and statistical software is required. In order to improve accessibility we created Web-TCGA, a web based, freely accessible online tool, which can also be run in a private instance, for integrated analysis of molecular cancer data sets provided by TCGA. In contrast to already available tools, Web-TCGA utilizes different methods for analysis and visualization of TCGA data, allowing users to generate global molecular profiles across different cancer entities simultaneously. In addition to global molecular profiles, Web-TCGA offers highly detailed gene and tumor entity centric analysis by providing interactive tables and views. As a supplement to other already available tools, such as cBioPortal (Sci Signal 6:pl1, 2013, Cancer Discov 2:401-4, 2012), Web-TCGA is offering an analysis service, which does not require any installation or configuration, for molecular data sets available at the TCGA. Individual processing requests (queries) are generated by the user for mutation, methylation, expression and copy number variation (CNV) analyses. The user can focus analyses on results from single genes and cancer entities or perform a global analysis (multiple cancer entities and genes simultaneously).

The Impact of a Primary Care Education Program Regarding Cancer Survivorship Care Plans: Results from an Engineering, Primary Care, and Oncology Collaborative for Survivorship Health.

PubMed

Donohue, SarahMaria; Haine, James E; Li, Zhanhai; Trowbridge, Elizabeth R; Kamnetz, Sandra A; Feldstein, David A; Sosman, James M; Wilke, Lee G; Sesto, Mary E; Tevaarwerk, Amye J

2017-09-20

Survivorship care plans (SCPs) have been recommended as tools to improve care coordination and outcomes for cancer survivors. SCPs are increasingly being provided to survivors and their primary care providers. However, most primary care providers remain unaware of SCPs, limiting their potential benefit. Best practices for educating primary care providers regarding SCP existence and content are needed. We developed an education program to inform primary care providers of the existence, content, and potential uses for SCPs. The education program consisted of a 15-min presentation highlighting SCP basics presented at mandatory primary care faculty meetings. An anonymous survey was electronically administered via email (n = 287 addresses) to evaluate experience with and basic knowledge of SCPs pre- and post-education. A total of 101 primary care advanced practice providers (APPs) and physicians (35% response rate) completed the baseline survey with only 23% reporting prior receipt of a SCP. Only 9% could identify the SCP location within the electronic health record (EHR). Following the education program, primary care physicians and APPs demonstrated a significant improvement in SCP knowledge, including improvement in their ability to locate one within the EHR (9 vs 59%, p < 0.0001). A brief educational program containing information about SCP existence, content, and location in the EHR increased primary care physician and APP knowledge in these areas, which are prerequisites for using SCP in clinical practice.

76 FR 14034 - Proposed Collection; Comment Request; NCI Cancer Genetics Services Directory Web-Based...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-03-15

... Request; NCI Cancer Genetics Services Directory Web-Based Application Form and Update Mailer Summary: In... Cancer Genetics Services Directory Web-based Application Form and Update Mailer. [[Page 14035

Cancer Terms: After Treatment

MedlinePlus

... Considerations How Cancer is Treated Side Effects Dating, Sex, and Reproduction Advanced Cancer For Children For Teens For Young Adults For Older Adults Prevention and Healthy Living Cancer.Net Videos Coping With Cancer Research and Advocacy Survivorship Blog ...

Recovery issues of fertility-preserving surgery in patients with early-stage cervical cancer and a model for survivorship: the physician checklist.

PubMed

Carter, Jeanne; Raviv, Leigh; Sonoda, Yukio; Chi, Dennis S; Abu-Rustum, Nadeem R

2011-01-01

To present a qualitative data analysis of items exploring the treatment, adjustment, and recovery of 33 patients who underwent radical trachelectomy (RT), and to determine the feasibility of using a physician checklist (PCL) as a model for survivorship assessment. This prospective study was approved by the Memorial Sloan-Kettering Cancer Center's Institutional Review Board. Participants completed a survey including exploratory items focused on fertility issues and reproductive concerns, treatment, adjustment, and recovery over 2 years. All responses to the exploratory questions were transcribed verbatim; thematic analysis was used to identify, evaluate, and show patterns within the data set; and descriptive statistics were calculated for thematic categories. A limited waiver of authorization was obtained for medical chart review of these patients (who underwent RT) for 2 years before (January 2006 to December 2007) and 2 years after (January 2008 to December 2009) implementation of the checklist to evaluate its feasibility. In response to "how successful you feel you will be at conceiving in the future?" on a scale of 0% to 100%, scores ranged from 54% to 60%. Approximately 70% of the patients reported concerns about conceiving; however, these lessened with time-88% at 6 months to 73% at 24 months. Six percent of women were trying to conceive by 12 months; this increased to 21% by 24 months. Five primary themes emerged from the qualitative analysis that were found to be prevalent across all exploratory items inquiring about difficulties or the hardest adjustment to treatment, recovery, and problems associated with RT; these included menstrual/vaginal issues, emotional impact, life interruptions/return to normalcy, general pain, and recovery process. The PCL identified higher rates of neocervical stenosis (58%), encroachment (54%), vaginal scarring (50%), and dyspareunia (33%) than medical charts, and increased documentation of reproductive consults (54%) and

The genetic basis for survivorship in coronary artery disease

PubMed Central

Dungan, Jennifer R.; Hauser, Elizabeth R.; Qin, Xuejun; Kraus, William E.

2013-01-01

Survivorship is a trait characterized by endurance and virility in the face of hardship. It is largely considered a psychosocial attribute developed during fatal conditions, rather than a biological trait for robustness in the context of complex, age-dependent diseases like coronary artery disease (CAD). The purpose of this paper is to present the novel phenotype, survivorship in CAD as an observed survival advantage concurrent with clinically significant CAD. We present a model for characterizing survivorship in CAD and its relationships with overlapping time- and clinically-related phenotypes. We offer an optimal measurement interval for investigating survivorship in CAD. We hypothesize genetic contributions to this construct and review the literature for evidence of genetic contribution to overlapping phenotypes in support of our hypothesis. We also present preliminary evidence of genetic effects on survival in people with clinically significant CAD from a primary case-control study of symptomatic coronary disease. Identifying gene variants that confer improved survival in the context of clinically appreciable CAD may improve our understanding of cardioprotective mechanisms acting at the gene level and potentially impact patients clinically in the future. Further, characterizing other survival-variant genetic effects may improve signal-to-noise ratio in detecting gene associations for CAD. PMID:24143143

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

DOE Office of Scientific and Technical Information (OSTI.GOV)

Boer, Stephanie M. de, E-mail: s.m.de_boer.ONCO@lumc.nl; Nout, Remi A.; Jürgenliemk-Schulz, Ina M.

Purpose: 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. Patients and Methods: 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 modelsmore » for subscales and (ordinal) logistic regression with random effects for single items. A two-sided P value <.01 was considered statistically significant. Results: 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. Conclusions: 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.« less

Developing a WebGIS for Geo-Visualization of Cancer.

PubMed

Khoshabi, Mostafa; Taleai, Mohammad; Motlagh, Ali; Hosseini Kamal, Farnaz

2016-04-01

Considering the hygiene facilities and sharing the data of diseases, considerable attempts to promote the public awareness have been made by various media; however, most of the provided information is based on numerical and verbal statistics, and may not provide suitable understanding for people in regard with the situation of diseases. The main aim of this study is to design an interactive WebGIS system in which people could simply produce and observe their favorite maps of different cancers and environmental parameters. They can use this tools to produce their personalized maps and explore various aspects of the cancer. A system has been developed by using WebGIS for convenience of ordinary users without any knowledge about geospatial information system (GIS) to observe the situation of the diseases and environmental conditions in terms of static and user-produced interactive maps. It has also provided the possibility of spatial comparison of the arbitrary parameters in the framework of bar and pie diagrams. This system has been designed and launched on cancer database of Iran where information of meteorological stations has been embedded as environmental parameters. The innovative idea in this study has received less attention in previous works including possibility of producing web-based Choropleth map so that users could easily select the parameters and algorithms for classification and interactive coloring in the system to produce their personalized maps. Development of WebGIS tools and increased cooperation of people in terms of inserting the spatial labels on the map to report a disease or using their views about reasons of occurring a specific cancer in a specific region may cause turning the process of mono-direction flow of information to users to a bi-directional flow of information. As a result, cancer specialists could use the knowledge of local people and residents of different regions of the country to better analyze the situation of various kinds

Spatially dependent biotic and abiotic factors drive survivorship and physical structure of green roof vegetation.

PubMed

Aloisio, Jason M; Palmer, Matthew I; Giampieri, Mario A; Tuininga, Amy R; Lewis, James D

2017-01-01

Plant survivorship depends on biotic and abiotic factors that vary at local and regional scales. This survivorship, in turn, has cascading effects on community composition and the physical structure of vegetation. Survivorship of native plant species is variable among populations planted in environmentally stressful habitats like urban roofs, but the degree to which factors at different spatial scales affect survivorship in urban systems is not well understood. We evaluated the effects of biotic and abiotic factors on survivorship, composition, and physical structure of two native perennial species assemblages, one characterized by a mixture of C 4 grasses and forbs (Hempstead Plains, HP) and one characterized by a mixture of C 3 grasses and forbs (Rocky Summit, RS), that were initially sown at equal ratios of growth forms (5:1:4; grass, N-fixing forb and non-N-fixing forb) in replicate 2-m 2 plots planted on 10 roofs in New York City (New York, USA). Of 24 000 installed plants, 40% survived 23 months after planting. Within-roof factors explained 71% of variation in survivorship, with biotic (species identity and assemblage) factors accounting for 54% of the overall variation, and abiotic (growing medium depth and plot location) factors explaining 17% of the variation. Among-roof factors explained 29% of variation in survivorship and increased solar radiation correlated with decreased survivorship. While growing medium properties (pH, nutrients, metals) differed among roofs there was no correlation with survivorship. Percent cover and sward height increased with increasing survivorship. At low survivorship, cover of the HP assemblage was greater compared to the RS assemblage. Sward height of the HP assemblage was about two times greater compared to the RS assemblage. These results highlight the effects of local biotic and regional abiotic drivers on community composition and physical structure of green roof vegetation. As a result, initial green roof plant

Web-Delivered Cognitive Behavioral Therapy for Distressed Cancer Patients: Randomized Controlled Trial

PubMed Central

Ritterband, Lee M; Thorndike, Frances; Nielsen, Lisa; Aitken, Joanne F; Clutton, Samantha; Scuffham, Paul A; Youl, Philippa; Morris, Bronwyn; Baade, Peter D; Dunn, Jeff

2018-01-01

Background Web-based interventions present a potentially cost-effective approach to supporting self-management for cancer patients; however, further evidence for acceptability and effectiveness is needed. Objective The goal of our research was to assess the effectiveness of an individualized Web-based cognitive behavioral therapy (CBT) intervention on improving psychological and quality of life outcomes in cancer patients with elevated psychological distress. Methods A total of 163 distressed cancer patients (111 female, 68.1%) were recruited through the Queensland Cancer Registry and the Cancer Council Queensland Cancer Helpline and randomly assigned to either a Web-based tailored CBT intervention (CancerCope) (79/163) or a static patient education website (84/163). At baseline and 8-week follow-up we assessed primary outcomes of psychological and cancer-specific distress and unmet psychological supportive care needs and secondary outcomes of positive adjustment and quality of life. Results Intention-to-treat analyses showed no evidence of a statistically significant intervention effect on primary or secondary outcomes. However, per-protocol analyses found a greater decrease for the CancerCope group in psychological distress (P=.04), cancer-specific distress (P=.02), and unmet psychological care needs (P=.03) from baseline to 8 weeks compared with the patient education group. Younger patients were more likely to complete the CancerCope intervention. Conclusions This online CBT intervention was associated with greater decreases in distress for those patients who more closely adhered to the program. Given the low costs and high accessibility of this intervention approach, even if only effective for subgroups of patients, the potential impact may be substantial. Trial Registration Australian New Zealand Clinical Trials Registry ACTRN12613001026718; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=364768&isReview=true (Archived by WebCite at http

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

'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

Survivorship and functional outcomes of patellofemoral arthroplasty: a systematic review.

PubMed

van der List, J P; Chawla, H; Zuiderbaan, H A; Pearle, A D

2017-08-01

Historically poor results of survivorship and functional outcomes of patellofemoral arthroplasty (PFA) have been reported in the setting of isolated patellofemoral osteoarthritis. More recently, however, fairly good results of PFA were reported, but the current status of PFA outcomes is unknown. Therefore, a systematic review was performed to assess overall PFA survivorship and functional outcomes. A search was performed using PubMed, Embase and Cochrane systems, and the registries were searched. Twenty-three cohort studies and one registry reported survivorship using Kaplan-Meier curve, while 51 cohort studies reported functional outcomes of PFA. Twelve studies were level II studies, while 45 studies were level III or IV studies. Heterogeneity was mainly seen in type of prosthesis and year the cohort started. Nine hundred revisions in 9619 PFAs were reported yielding 5-, 10-, 15- and 20-year PFA survivorships of 91.7, 83.3, 74.9 and 66.6 %, respectively, and an annual revision rate of 2.18. Functional outcomes were reported in 2587 PFAs with an overall score of 82.2 % of the maximum score. KSS and Knee Function Score were 87.5 and 81.6 %, respectively. This systematic review showed that fairly good results of PFA survivorship and functional outcomes were reported at short- and midterm follow-up in the setting of isolated patellofemoral osteoarthritis. Heterogeneity existed mainly in prosthesis design and year the cohort started. These results provide a clear overview of the current status of PFA in the setting of isolated patellofemoral osteoarthritis. IV.

Effects of web-based interventions on cancer patients' symptoms: review of randomized trials.

PubMed

Fridriksdottir, N; Gunnarsdottir, S; Zoëga, S; Ingadottir, B; Hafsteinsdottir, E J G

2018-02-01

Symptom management is of high priority in cancer care. Information and communication technology allows interventions to be provided through the internet to enhance the delivery of care. This study aimed to review the effects of web-based interventions on cancer patients' symptoms. MEDLINE, PSychINFO, PubMed, CINAHL, and Cochrane databases were systematically searched. Included were randomized controlled trials (RCTs), pilot RCTs, or quasi-experimental (QE) studies focusing on web-based interventions in adult cancer patients with at least one outcome primary or secondary, in terms of symptoms, treatment side effects, or distress. Data were analyzed study by study. Twenty studies were identified. All web interventions included information, 16 included self-management support, 14 included self-monitoring, 13 included feedback/tailored information, 12 used communication with health-care professionals, and eight used communication with other patients. Overall, 13 studies reported positive symptom outcomes. Psychological distress was reported in eight studies with positive intervention effects in three. Symptoms of anxiety/depression were reported in ten studies with positive intervention effects in five. Somatic symptom severity was reported in ten studies with intervention effects found in six, and symptom distress was reported in six studies with intervention effects found in all. This review shows the promising potential of web-based interventions for cancer symptom management, although it was limited by considerable heterogeneity in the interventions tested and targeted outcomes. The multidimensional nature of symptoms was partly addressed; only one study was guided by a comprehensive theoretical model of cancer symptom management. It can only be speculated which web elements are important for effective symptom outcomes. Further testing is needed for web-based cancer symptom management.

Older Cancer Patients’ User Experiences With Web-Based Health Information Tools: A Think-Aloud Study

PubMed Central

Romijn, Geke; Smets, Ellen M A; Loos, Eugene F; Kunneman, Marleen; van Weert, Julia C M

2016-01-01

Background Health information is increasingly presented on the Internet. Several Web design guidelines for older Web users have been proposed; however, these guidelines are often not applied in website development. Furthermore, although we know that older individuals use the Internet to search for health information, we lack knowledge on how they use and evaluate Web-based health information. Objective This study evaluates user experiences with existing Web-based health information tools among older (≥ 65 years) cancer patients and survivors and their partners. The aim was to gain insight into usability issues and the perceived usefulness of cancer-related Web-based health information tools. Methods We conducted video-recorded think-aloud observations for 7 Web-based health information tools, specifically 3 websites providing cancer-related information, 3 Web-based question prompt lists (QPLs), and 1 values clarification tool, with colorectal cancer patients or survivors (n=15) and their partners (n=8) (median age: 73; interquartile range 70-79). Participants were asked to think aloud while performing search, evaluation, and application tasks using the Web-based health information tools. Results Overall, participants perceived Web-based health information tools as highly useful and indicated a willingness to use such tools. However, they experienced problems in terms of usability and perceived usefulness due to difficulties in using navigational elements, shortcomings in the layout, a lack of instructions on how to use the tools, difficulties with comprehensibility, and a large amount of variety in terms of the preferred amount of information. Although participants frequently commented that it was easy for them to find requested information, we observed that the large majority of the participants were not able to find it. Conclusions Overall, older cancer patients appreciate and are able to use cancer information websites. However, this study shows the importance

Vitality, mental health, and satisfaction with information after breast cancer.

PubMed

Griggs, Jennifer J; Sorbero, Melony E S; Mallinger, Julie B; Quinn, Megan; Waterman, Margaret; Brooks, Beverly; Yirinec, Brian; Shields, Cleveland G

2007-04-01

The purpose of this study was to investigate the relationship between satisfaction with information about treatment-related and survivorship issues and mental health outcomes, including vitality, in long-term breast cancer survivors. Participants who had finished treatment for breast cancer at least 3 months before enrollment completed a survey instrument designed to evaluate satisfaction with diagnostic and treatment information and satisfaction with survivorship information. Mental health and vitality were measured using the Medical Outcomes Study SF-36, and distress was measured using the impact of events scale. Bivariate analyses and linear regression analyses were performed to investigate the relationships between satisfaction with information, mental health, vitality, and distress controlling for clinical and treatment variables. The survey was completed by 231 participants (response rate 83%). More respondents were highly satisfied with treatment information (87%) than with survivorship information (30%, p=0.0001). There was a strong positive relationship between satisfaction with information (both treatment and survivorship issues) and vitality, mental health, and a strong negative relationship with distress. In multivariate analyses, satisfaction with treatment information was independently associated with mental health (p<0.01), and satisfaction with survivorship information was independently associated with vitality (p<0.05). Among patients who have completed treatment for breast cancer, satisfaction with diagnosis and treatment information is greater than satisfaction with survivorship issues and satisfaction with information may play an important role in mental health outcomes. Given the relationship between satisfaction with information and vitality, interventions to improve informational support regarding survivorship issues are warranted.

76 FR 28439 - Submission for OMB Review; Comment Request; NCI Cancer Genetics Services Directory Web-Based...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-05-17

...; Comment Request; NCI Cancer Genetics Services Directory Web-Based Application Form and Update Mailer... currently valid OMB control number. Proposed Collection: Title: NCI Cancer Genetics Services Directory Web... application form and the Web-based update mailer is to collect information about genetics professionals to be...

Defining Survivorship Trajectories Across Patients With Solid Tumors: An Evidence-Based Approach.

PubMed

Dood, Robert L; Zhao, Yang; Armbruster, Shannon D; Coleman, Robert L; Tworoger, Shelley; Sood, Anil K; Baggerly, Keith A

2018-06-02

Survivorship involves a multidisciplinary approach to surveillance and management of comorbidities and secondary cancers, overseen by oncologists, surgeons, and primary care physicians. Optimal timing and coordination of care, however, is unclear and often based on arbitrary 5-year cutoffs. To determine high- and low-risk periods for all tumor types that could define when survivorship care might best be overseen by oncologists and when to transition to primary care physicians. In this pan-cancer, longitudinal, observational study, excess mortality hazard, calculated as an annualized mortality risk above a baseline population, was plotted over time. The time this hazard took to stabilize defined a high-risk period. The percent morality elevation above age- and sex-matched controls in the latter low-risk period was reported as a mortality gap. The US population-based Surveillance, Epidemiology, and End Results database defined the cancer population, and the US Census life tables defined controls. Incident cases of patients with cancer were separated into tumor types based on International Classification of Diseases for Oncology definitions. Population-level data on incident cancer cases was compared with the general US population. Overall mortality and cause of death were reported on observed cancer cases. A total of 2 317 185 patients (median age, 63 years; 49.8% female) with 66 primary tumor types were evaluated. High-risk surveillance period durations ranged from less than 1 year (breast, prostate, lip, ocular, and parathyroid cancers) up to 19 years (unspecified gastrointestinal cancers). The annualized mortality gap, representing the excess mortality in the stable period, ranged from a median 0.26% to 9.33% excess annual mortality (thyroid and hypopharyngeal cancer populations, respectively). Cluster analysis produced 6 risk cluster groups: group 1, with median survival of 16.2 (5th to 95th percentile range [PR], 10.7-40.2) years and median high-risk period

Web-Delivered Cognitive Behavioral Therapy for Distressed Cancer Patients: Randomized Controlled Trial.

PubMed

Chambers, Suzanne K; Ritterband, Lee M; Thorndike, Frances; Nielsen, Lisa; Aitken, Joanne F; Clutton, Samantha; Scuffham, Paul A; Youl, Philippa; Morris, Bronwyn; Baade, Peter D; Dunn, Jeff

2018-01-31

Web-based interventions present a potentially cost-effective approach to supporting self-management for cancer patients; however, further evidence for acceptability and effectiveness is needed. The goal of our research was to assess the effectiveness of an individualized Web-based cognitive behavioral therapy (CBT) intervention on improving psychological and quality of life outcomes in cancer patients with elevated psychological distress. A total of 163 distressed cancer patients (111 female, 68.1%) were recruited through the Queensland Cancer Registry and the Cancer Council Queensland Cancer Helpline and randomly assigned to either a Web-based tailored CBT intervention (CancerCope) (79/163) or a static patient education website (84/163). At baseline and 8-week follow-up we assessed primary outcomes of psychological and cancer-specific distress and unmet psychological supportive care needs and secondary outcomes of positive adjustment and quality of life. Intention-to-treat analyses showed no evidence of a statistically significant intervention effect on primary or secondary outcomes. However, per-protocol analyses found a greater decrease for the CancerCope group in psychological distress (P=.04), cancer-specific distress (P=.02), and unmet psychological care needs (P=.03) from baseline to 8 weeks compared with the patient education group. Younger patients were more likely to complete the CancerCope intervention. This online CBT intervention was associated with greater decreases in distress for those patients who more closely adhered to the program. Given the low costs and high accessibility of this intervention approach, even if only effective for subgroups of patients, the potential impact may be substantial. Australian New Zealand Clinical Trials Registry ACTRN12613001026718; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=364768&isReview=true (Archived by WebCite at http://www.webcitation.org/6uPvpcovl). ©Suzanne K Chambers, Lee M Ritterband

An evaluation of the behaviour-change techniques used on Canadian cancer centre Web sites to support physical activity behaviour for breast cancer survivors

PubMed Central

Sylvester, B.D.; Zammit, K.; Fong, A.J.; Sabiston, C.M.

2017-01-01

Background Cancer centre Web sites can be a useful tool for distributing information about the benefits of physical activity for breast cancer (bca) survivors, and they hold potential for supporting health behaviour change. However, the extent to which cancer centre Web sites use evidence-based behaviour change techniques to foster physical activity behaviour among bca survivors is currently unknown. The aim of our study was to evaluate the presentation of behaviour-change techniques on Canadian cancer centre Web sites to promote physical activity behaviour for bca survivors. Methods All Canadian cancer centre Web sites (n = 39) were evaluated by two raters using the Coventry, Aberdeen, and London–Refined (calo-re) taxonomy of behaviour change techniques and the eEurope 2002 Quality Criteria for Health Related Websites. Descriptive statistics were calculated. Results The most common behaviour change techniques used on Web sites were providing information about consequences in general (80%), suggesting goal-setting behaviour (56%), and planning social support or social change (46%). Overall, Canadian cancer centre Web sites presented an average of M = 6.31 behaviour change techniques (of 40 that were coded) to help bca survivors increase their physical activity behaviour. Evidence of quality factors ranged from 90% (sites that provided evidence of readability) to 0% (sites that provided an editorial policy). Conclusions Our results provide preliminary evidence that, of 40 behaviour-change techniques that were coded, fewer than 20% were used to promote physical activity behaviour to bca survivors on cancer centre Web sites, and that the most effective techniques were inconsistently used. On cancer centre Web sites, health promotion specialists could focus on emphasizing knowledge mobilization efforts using available research into behaviour-change techniques to help bca survivors increase their physical activity. PMID:29270056

An evaluation of the behaviour-change techniques used on Canadian cancer centre Web sites to support physical activity behaviour for breast cancer survivors.

PubMed

Sylvester, B D; Zammit, K; Fong, A J; Sabiston, C M

2017-12-01

Cancer centre Web sites can be a useful tool for distributing information about the benefits of physical activity for breast cancer (bca) survivors, and they hold potential for supporting health behaviour change. However, the extent to which cancer centre Web sites use evidence-based behaviour change techniques to foster physical activity behaviour among bca survivors is currently unknown. The aim of our study was to evaluate the presentation of behaviour-change techniques on Canadian cancer centre Web sites to promote physical activity behaviour for bca survivors. All Canadian cancer centre Web sites ( n = 39) were evaluated by two raters using the Coventry, Aberdeen, and London-Refined (calo-re) taxonomy of behaviour change techniques and the eEurope 2002 Quality Criteria for Health Related Websites. Descriptive statistics were calculated. The most common behaviour change techniques used on Web sites were providing information about consequences in general (80%), suggesting goal-setting behaviour (56%), and planning social support or social change (46%). Overall, Canadian cancer centre Web sites presented an average of M = 6.31 behaviour change techniques (of 40 that were coded) to help bca survivors increase their physical activity behaviour. Evidence of quality factors ranged from 90% (sites that provided evidence of readability) to 0% (sites that provided an editorial policy). Our results provide preliminary evidence that, of 40 behaviour-change techniques that were coded, fewer than 20% were used to promote physical activity behaviour to bca survivors on cancer centre Web sites, and that the most effective techniques were inconsistently used. On cancer centre Web sites, health promotion specialists could focus on emphasizing knowledge mobilization efforts using available research into behaviour-change techniques to help bca survivors increase their physical activity.

Response Rates for Patient-Reported Outcomes Using Web-Based Versus Paper Questionnaires: Comparison of Two Invitational Methods in Older Colorectal Cancer Patients

PubMed Central

Vissers, Pauline AJ; Mols, Floortje; Thong, Melissa SY; van de Poll-Franse, Lonneke V

2015-01-01

Background Improving questionnaire response rates is an everlasting issue for research. Today, the Internet can easily be used to collect data quickly. However, collecting data on the Internet can lead to biased samples because not everyone is able to access or use the Internet. The older population, for example, is much less likely to use the Internet. The Patient-Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship (PROFILES) registry offers a platform to collect Web-based and paper questionnaires and to try different measures to improve response rates. Objective In this study, our aim was to study the influence of two methods of invitation on the response rate. Our second aim was to examine the preference of questionnaire mode of administration (paper or Web-based) for the older patient in particular. Methods To test these two invitational methods, 3406 colorectal cancer patients between ages 18 and 85 years received an invitation containing an access code for the Web-based questionnaire. They could also request a paper questionnaire with an included reply card (paper-optional group). In contrast, 179 randomly selected colorectal cancer patients received a paper questionnaire with the invitation (paper-included group). They could also choose to fill out the Web-based questionnaire with the included access code. Results Response rates did not differ between the paper-optional and the paper-included groups (73.14%, 2491/3406 and 74.9%, 134/179, P=.57). In the paper-optional group, online response was significantly higher when compared to the paper-included group (41.23%, 1027/2491 vs 12.7%, 17/134, P<.001). The majority of online respondents responded after the first invitation (95.33%, 979/1027), which was significantly higher than the paper respondents (52.19%, 764/1464, P<.001). Respondents aged 70 years and older chose to fill out a paper questionnaire more often (71.0%, 677/954). In the oldest age group (≥80 years), 18

Impact of an Automatically Generated Cancer Survivorship Care Plan on Patient-Reported Outcomes in Routine Clinical Practice: Longitudinal Outcomes of a Pragmatic, Cluster Randomized Trial.

PubMed

Nicolaije, Kim A H; Ezendam, Nicole P M; Vos, M Caroline; Pijnenborg, Johanna M A; Boll, Dorry; Boss, Erik A; Hermans, Ralph H M; Engelhart, Karin C M; Haartsen, Joke E; Pijlman, Brenda M; van Loon-Baelemans, Ingrid E A M; Mertens, Helena J M M; Nolting, Willem E; van Beek, Johannes J; Roukema, Jan A; Zijlstra, Wobbe P; Kruitwagen, Roy F P M; van de Poll-Franse, Lonneke V

2015-11-01

This study was conducted to longitudinally assess the impact of an automatically generated survivorship care plan (SCP) on patient-reported outcomes in routine clinical practice. Primary outcomes were patient satisfaction with information and care. Secondary outcomes included illness perceptions and health care use. Twelve hospitals were randomly assigned to SCP care or usual care in a pragmatic, cluster randomized trial. Newly diagnosed patients with endometrial cancer completed questionnaires after diagnosis (n = 221; 75% response), 6 months (n = 158), and 12 months (n = 147). An SCP application was built in the Web-based ROGY (Registration System Oncological Gynecology). By clicking the SCP button, a patient-tailored SCP was generated. In the SCP care arm, 74% of patients received an SCP. They reported receiving more information about their treatment (mean [M] = 57, standard deviation [SD] = 20 v M = 47, SD = 24; P = .03), other services (M = 35, SD = 22 v M = 25, SD = 22; P = .03), and different places of care (M = 27, SD = 25 v M = 23, SD = 26; P = .04) than the usual care arm (scales, 0 to 100). However, there were no differences regarding satisfaction with information or care. Patients in the SCP care arm experienced more symptoms (M = 3.3, SD = 2.0 v M = 2.6, SD = 1.6; P = .03), were more concerned about their illness (M = 4.4, SD = 2.3 v M = 3.9, SD = 2.1; P = .03), were more affected emotionally (M = 4.0, SD = 2.2 v M = 3.7, SD = 2.2; P = .046), and reported more cancer-related contact with their primary care physician (M = 1.8, SD = 2.0 v M = 1.1, SD = 0.9; P = .003) than those in the usual care arm (scale, 1 to 10). These effects did not differ over time. The present trial showed no evidence of a benefit of SCPs on satisfaction with information and care. Furthermore, SCPs increased patients' concerns, emotional impact, experienced symptoms, and the amount of cancer-related contact with the primary care physician. Whether this may ultimately lead to more

Systematic Review of the Impact of Cancer Survivorship Care Plans on Health Outcomes and Health Care Delivery.

PubMed

Jacobsen, Paul B; DeRosa, Antonio P; Henderson, Tara O; Mayer, Deborah K; Moskowitz, Chaya S; Paskett, Electra D; Rowland, Julia H

2018-05-18

Purpose Numerous organizations recommend that patients with cancer receive a survivorship care plan (SCP) comprising a treatment summary and follow-up care plans. Among current barriers to implementation are providers' concerns about the strength of evidence that SCPs improve outcomes. This systematic review evaluates whether delivery of SCPs has a positive impact on health outcomes and health care delivery for cancer survivors. Methods Randomized and nonrandomized studies evaluating patient-reported outcomes, health care use, and disease outcomes after delivery of SCPs were identified by searching MEDLINE, Embase, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, and Cochrane Library. Data extracted by independent raters were summarized on the basis of qualitative synthesis. Results Eleven nonrandomized and 13 randomized studies met inclusion criteria. Variability was evident across studies in cancer types, SCP delivery timing and method, SCP recipients and content, SCP-related counseling, and outcomes assessed. Nonrandomized study findings yielded descriptive information on satisfaction with care and reactions to SCPs. Randomized study findings were generally negative for the most commonly assessed outcomes (ie, physical, functional, and psychological well-being); findings were positive in single studies for other outcomes, including amount of information received, satisfaction with care, and physician implementation of recommended care. Conclusion Existing research provides little evidence that SCPs improve health outcomes and health care delivery. Possible explanations include heterogeneity in study designs and the low likelihood that SCP delivery alone would influence distal outcomes. Findings are limited but more positive for proximal outcomes (eg, information received) and for care delivery, particularly when SCPs are accompanied by counseling to prepare survivors for future clinical encounters. Recommendations for future research include

Cancer-Related Fatigue in Post-Treatment Cancer Survivors: Theory-Based Development of a Web-Based Intervention.

PubMed

Corbett, Teresa; Walsh, Jane C; Groarke, AnnMarie; Moss-Morris, Rona; Morrissey, Eimear; McGuire, Brian E

2017-07-04

Cancer-related fatigue (CrF) is the most common and disruptive symptom experienced by cancer survivors. We aimed to develop a theory-based, interactive Web-based intervention designed to facilitate self-management and enhance coping with CrF following cancer treatment. The aim of our study was to outline the rationale, decision-making processes, methods, and findings which led to the development of a Web-based intervention to be tested in a feasibility trial. This paper outlines the process and method of development of the intervention. An extensive review of the literature and qualitative research was conducted to establish a therapeutic approach for this intervention, based on theory. The psychological principles used in the development process are outlined, and we also clarify hypothesized causal mechanisms. We describe decision-making processes involved in the development of the content of the intervention, input from the target patient group and stakeholders, the design of the website features, and the initial user testing of the website. The cocreation of the intervention with the experts and service users allowed the design team to ensure that an acceptable intervention was developed. This evidence-based Web-based program is the first intervention of its kind based on self-regulation model theory, with the primary aim of targeting the representations of fatigue and enhancing self-management of CrF, specifically. This research sought to integrate psychological theory, existing evidence of effective interventions, empirically derived principles of Web design, and the views of potential users into the systematic planning and design of the intervention of an easy-to-use website for cancer survivors. ©Teresa Corbett, Jane C Walsh, AnnMarie Groarke, Rona Moss-Morris, Eimear Morrissey, Brian E McGuire. Originally published in JMIR Cancer (http://cancer.jmir.org), 04.07.2017.

Psychosocial outcomes and interventions among cancer survivors diagnosed during adolescence and young adulthood (AYA): a systematic review

PubMed Central

Barnett, Marie; McDonnell, Glynnis; DeRosa, Antonio; Schuler, Tammy; Philip, Errol; Peterson, Lisa; Touza, Kaitlin; Jhanwar, Sabrina; Atkinson, Thomas M.; Ford, Jennifer S.

2016-01-01

Purpose A cancer diagnosis during adolescence or young adulthood (AYA; defined as ages 15–39) generates unique medical and psychosocial needs as developmental milestones are simultaneously impacted. Past research highlights that AYAs’ experiences and psychosocial outcomes are different, and more research and attention is needed. We aimed to identify and synthesize literature regarding psychosocial outcomes, unique needs, and existing psychosocial interventions pertaining to individuals diagnosed with cancer exclusively during AYA, and to highlight areas for future research. Methods A systematic literature search was conducted using MEDLINE (via PubMed), EMBASE, Cochrane, Web of Science, and PsycINFO (via OVID). Grey literature was searched using key term variations and combinations. Overall, 15,301 records were assessed by two independent reviewers, with 38 studies meeting inclusion criteria. Results Data synthesis of the 38 articles was organized by four main themes based on quality of life and survivorship: physical well-being (7 studies), psychological well-being (8 studies), social well-being (9 studies), and survivorship care (14 studies). The paucity of studies for such broad inclusion criteria highlights that this population is often combined or subsumed under other age groups, missing needs unique to these AYAs. Conclusions AYA cancer survivors’ experiences are nuanced, with interacting variables contributing to post-treatment outcomes. AYAs require age-appropriate and flexible care, informational needs and treatment-related education that foster autonomy for long-term survivorship, as well as improved follow-up care and psychological outcomes. Implications for Cancer Survivors By incorporating these findings into practice, the informational and unmet needs of AYAs can be addressed effectively. Education and programming is lacking specific and general subject matter specific to AYAs, incorporating ranging needs at different treatment stages. PMID

GROWTH, SURVIVORSHIP, AND REPRODUCTION OF DAPHNIA MIDDENDORFFIANA IN SEVERAL ARCTIC LAKES AND PONDS

EPA Science Inventory

The growth, survivorship and reproduction of Arctic region Daphnia middendorffiana was investigated in several lakes and ponds on the tundra in northern Alaska and additionally in a laboratory study. Growth rate equations, reproduction rates and survivorship under natural conditi...

Evaluation of Norwegian cancer hospitals' Web sites and explorative survey among cancer patients on their use of the Internet

PubMed Central

2001-01-01

Background Hospital homepages should provide comprehensive information on the hospital's services, such as departments and treatments available, prices, waiting time, leisure facilities, and other information important for patients and their relatives. Norway, with its population of approximately 4.3 million, ranks among the top countries globally for its ability to absorb and use technology. It is unclear to what degree Norwegian hospitals and patients use the Internet for information about health services. Objectives This study was undertaken to evaluate the quality of the biggest Norwegian cancer hospitals' Web sites and to gather some preliminary data on patients' use of the Internet. Methods In January 2001, we analyzed Web sites of 5 of the 7 biggest Norwegian hospitals treating cancer patients using a scoring system. The scoring instrument was based on recommendations developed by the Norwegian Central Information Service for Web sites and reflects the scope and depth of service information offered on hospital Web pages. In addition, 31 cancer patients visiting one hospital-based medical oncologist were surveyed about their use of the Internet. Results Of the 7 hospitals, 5 had a Web site. The Web sites differed markedly in quality. Types of information included - and number of Web sites that included each type of information - were, for example: search option, 1; interpreter service, 2; date of last update, 2; postal address, phone number, and e-mail service, 3; information in English, 2. None of the Web sites included information on waiting time or prices. Of the 31 patients surveyed, 12 had personal experience using the Internet and 4 had searched for medical information. The Internet users were significantly younger (mean age 47.8 years, range 28.4-66.8 years) than the nonusers (mean age 61.8 years, range 33.1-90.0 years) ( P= 0.007). Conclusions The hospitals' Web sites offer cancer patients and relatives useful information, but the Web sites were not

Cancer prevention: take charge of your lifestyle

MedlinePlus

... cancer prevention, treatment, recovery, and survivorship. Oncology (Williston Park) . 2013;27(6):580-585. PMID: 23909073 www.ncbi.nlm.nih.gov/pubmed/23909073 . National Cancer Institute website. Alcohol and cancer risk. www. ...

National Coalition for Cancer Survivorship

MedlinePlus

Home About Our Mission Our History Our Leadership Policy Advisors About Ellen Stovall 30th Anniversary Press and Media Financial Info Policy What Is Public Policy? Cancer Policy Roundtable NCCS Policy Priorities ...

Databases and Web Tools for Cancer Genomics Study

PubMed Central

Yang, Yadong; Dong, Xunong; Xie, Bingbing; Ding, Nan; Chen, Juan; Li, Yongjun; Zhang, Qian; Qu, Hongzhu; Fang, Xiangdong

2015-01-01

Publicly-accessible resources have promoted the advance of scientific discovery. The era of genomics and big data has brought the need for collaboration and data sharing in order to make effective use of this new knowledge. Here, we describe the web resources for cancer genomics research and rate them on the basis of the diversity of cancer types, sample size, omics data comprehensiveness, and user experience. The resources reviewed include data repository and analysis tools; and we hope such introduction will promote the awareness and facilitate the usage of these resources in the cancer research community. PMID:25707591

Transitioning childhood cancer survivors to adult-centered healthcare: insights from parents, adolescent, and young adult survivors.

PubMed

Casillas, Jacqueline; Kahn, Katherine L; Doose, Michelle; Landier, Wendy; Bhatia, Smita; Hernandez, Joanna; Zeltzer, Lonnie K

2010-09-01

To determine Latino adolescent and young adults (AYA) cancer survivors' perceived barriers or facilitators to transition from pediatric to adult-centered survivorship care and to also assess the parents' perspective of care. Partnering with a community-based organization that serves Latino survivors, we conducted a qualitative, constant comparative analytic approach exploring in-depth themes that have salience for Latino pediatric cancer survivors seeking care in the adult healthcare setting. Twenty-seven Latino AYA survivors (>or=15 years of age) completed key informant interviews and 21 Latino parents participated in focus groups. Both AYA survivors and parents identified two major facilitative factors for survivorship care: Involvement of the nuclear family in the AYA's survivorship care in the adult healthcare setting and including symptom communication in late effects discussions. Barriers to care included: perceived stigma of a cancer history and continued emotional trauma related to discussions about the childhood cancer experience. Barriers to survivorship care include cancer stigma for both patient and nuclear family, which can impact on seeking survivorship care due to constraints placed on discussions because it remains difficult to discuss 'cancer' years later. Future research can evaluate if these findings are unique to Latino childhood cancer survivors or are found in other populations of AYA cancer survivors transitioning to adult-centered healthcare. This community-based participatory research collaboration also highlights the opportunity to learn about the needs of childhood cancer survivors from the lens of community leaders serving culturally diverse populations. (c) 2010 John Wiley & Sons, Ltd.

Survivors on Cancer: the portrayal of survivors in print news.

PubMed

Kromm, Elizabeth Edsall; Smith, Katherine Clegg; Singer, Rachel Friedman

2007-12-01

This study examines the types of news stories that include comments by everyday cancer survivors and the messages or information these individuals provide. Even though these non-celebrity survivors increasingly serve on the front lines of cancer prevention and advocacy efforts and often engage with media, the role they play in the media discourse on cancer has not been a focus of research. We conducted a thematic content analysis of print news articles of non-celebrity cancer survivors in 15 leading national daily newspapers for four consecutive months starting in June 2005 to identify the issues or events that included a survivor perspective and the messages or information conveyed by the everyday survivors. Journalists included survivor commentary primarily when covering cancer fundraising events and when focusing on individual survivorship stories. In overall news coverage involving survivors, breast and prostate cancers received the greatest attention, followed by blood and lung cancers. Survivors spoke mainly about the diagnosis experience and life post-cancer. Our analysis of survivors' comments revealed that discussions of the diagnosis experience often convey fear and a lack of confidence in cancer screening practices, while cancer is portrayed as a positive life event. While evidence of a positive and hopeful portrayal of survivorship is an encouraging finding for continued efforts to decrease stigma associated with a cancer diagnosis and for the public understanding of the disease, it is important to consider potential negative implications of an idealized and restricted media discourse on survivorship. The increasing size and capacity of the survivor community offers opportunities for the cancer advocacy community to consider how news media portrayal of cancer and survivorship may contribute in both positive and potentially detrimental ways to public understanding of this disease, its survivors and life after cancer.

Lymphedema as a Cancer Treatment Side Effect

MedlinePlus

... Considerations How Cancer is Treated Side Effects Dating, Sex, and Reproduction Advanced Cancer For Children For Teens For Young Adults For Older Adults Prevention and Healthy Living Cancer.Net Videos Coping With Cancer Research and Advocacy Survivorship Blog ...

Nausea and Vomiting Caused by Cancer Treatment

MedlinePlus

... Considerations How Cancer is Treated Side Effects Dating, Sex, and Reproduction Advanced Cancer For Children For Teens For Young Adults For Older Adults Prevention and Healthy Living Cancer.Net Videos Coping With Cancer Research and Advocacy Survivorship Blog ...

A web site on lung cancer: who are the users and what are they looking for?

PubMed

Linssen, Cilia; Schook, Romane M; The, Anne-Mei; Lammers, Ernst; Festen, Jan; Postmus, Pieter E

2007-09-01

The Dutch Lung Cancer Information Centre launched the Web site www.longkanker.info in November 2003. The purpose of this article is to describe the launching of the Web site, its development, the type of visitors to the Web site, what they were looking for, and whether they found what they requested. Supervised by a panel (pulmonologists, patients, communication specialists), a large amount of material about lung cancer has been collected and edited into accessible language by health care providers, and the Web site has been divided into special categories following the different stages that lung cancer patients, relatives, and health care providers go through during the illness. The Web site is updated regularly. Search engines have been used to check the position of the Web site as a "hit." Pulmonologists have been informed about the founding of the Web site, and all lung cancer outpatient clinics in The Netherlands have received posters, folders, and cards to inform their patients. Visitor numbers, page views, and visitor numbers per page view have been registered continuously. Visitor satisfaction polls were placed in the second half of 2004 and the second half of 2005. The Web site appeared as first hit when using search engines immediately after launching it. Half of the visitors came to the Web site via search engines or links found at other sites. The number of visitors started at 4600 in the first month, doubled in the next months, and reached 18,000 per month 2 years after its launch. The number of visited pages increased to 87,000 per month, with an average number of five pages per visitor. Thirty percent of the visitors return within the same month. The most popular pages are interactive pages with the overview of all questions to "ask the doctor" at the top with forum messages, survival figures of all form of lung cancer, and information about the disease. The first satisfaction poll obtained 650 respondents and the second 382. The visitors to the Web

Cancer and beyond: the question of survivorship.

PubMed

Breaden, K

1997-11-01

Today, more people are surviving cancer as a result of improved treatment and early diagnosis. In Australia, the 5-year survival rate for persons diagnosed with cancer is now approaching 50%. Although there is a growing population of cancer survivors, little is known about what surviving entails. Traditionally, a survivor has been defined as one who has been disease-free for more than 5 years. However, this definition does not take into account the experience nor the process of survival and the aim of this article is to document the process of surviving cancer as reflected in the experiences of cancer survivors. Using a method of hermeneutic phenomenology (as described by van Manen), the study draws on the stories of six women, who by their definition, are surviving cancer. A discussion of themes has been structured according to the everyday experiences of living in a body and living in time. The women describe a survival process that includes: 'feeling whole again'; 'the body as the house of suspicion'; 'the future in question'; 'changes in time'; 'lucky to be alive'; and 'sharing the journey'.

TrueNTH sexual recovery study protocol: a multi-institutional collaborative approach to developing and testing a web-based intervention for couples coping with the side-effects of prostate cancer treatment in a randomized controlled trial.

PubMed

Wittmann, D; Mehta, A; Northouse, L; Dunn, R; Braun, T; Duby, A; An, L; Arab, L; Bangs, R; Bober, S; Brandon, J; Coward, M; Dunn, M; Galbraith, M; Garcia, M; Giblin, J; Glode, M; Koontz, B; Lowe, A; Mitchell, S; Mulhall, J; Nelson, C; Paich, K; Saigal, C; Skolarus, T; Stanford, J; Walsh, T; Pollack, C E

2017-10-02

of patient characteristics with both outcomes. The web-based tool represents a novel approach to addressing the sexual health needs of prostate cancer survivors and their partners that-if found efficacious-will improve access to much needed specialty care in prostate cancer survivorship. Clinicaltrials.gov registration # NCT02702453 , registered on March 3, 2016.

Resource competition induces heterogeneity and can increase cohort survivorship: selection-event duration matters.

PubMed

Gosselin, Jennifer L; Anderson, James J

2013-12-01

Determining when resource competition increases survivorship can reveal processes underlying population dynamics and reinforce the importance of heterogeneity among individuals in conservation. We ran an experiment mimicking the effects of competition in a growing season on survivorship during a selection event (e.g., overwinter starvation, drought). Using a model fish species (Poecilia reticulata), we studied how food availability and competition affect mass in a treatment stage, and subsequently survivorship in a challenge stage of increased temperature and starvation. The post-treatment mean mass was strongly related to the mean time to mortality and mass at mortality at all levels of competition. However, competition increased variance in mass and extended the right tail of the survivorship curve, resulting in a greater number of individuals alive beyond a critical temporal threshold ([Formula: see text]) than without competition. To realize the benefits from previously experienced competition, the duration of the challenge ([Formula: see text]) following the competition must exceed the critical threshold [Formula: see text] (i.e., competition increases survivorship when [Formula: see text]). Furthermore, this benefit was equivalent to increasing food availability by 20 % in a group without competition in our experiment. The relationship of [Formula: see text] to treatment and challenge conditions was modeled by characterizing mortality through mass loss in terms of the stochastic rate of loss of vitality (individual's survival capacity). In essence, when the duration of a selection event exceeds [Formula: see text], competition-induced heterogeneity buffers against mortality through overcompensation processes among individuals of a cohort. Overall, our study demonstrates an approach to quantify how early life stage heterogeneity affects survivorship.

Nurse experiences as cancer survivors: part II--professional.

PubMed

Picard, Carol; Agretelis, Joan; DeMarco, Rosanna F

2004-05-01

To uncover dimensions of nurses' professional experiences of cancer survivorship. Interpretive, phenomenologic. Metropolitan area in the northeastern United States. 25 RNs diagnosed with cancer. Average age was 50 years, and 20 participants were less than five years from initial diagnosis. Interviews. Data were analyzed using the methodology of Newman (1994, 1999) and VanManen (1990). Nurses' professional experiences of cancer survivorship. Professional experiences of cancer survivorship fell into five themes: (a) role ambiguity, (b) a deepening level of compassion for patients and others, (c) self-disclosure as a therapeutic intervention, (d) becoming an advocate for change, and (e) volunteerism. Cancer survivorship was a factor in reshaping participants' clinical practice. Experiencing the role of the patient affirmed the necessity of compassionate care for these participants. Nurses experienced a deepening level of compassion for patients and used self-disclosure as a therapeutic intervention. During and shortly after treatment, role ambiguity (being both patient and nurse) could cause difficulties. Nurses took action to change their clinical environment through their influence on colleagues and the healthcare system and by working through other organizations to improve patient care. Nurse cancer survivors can benefit from the support of colleagues and healthcare providers and an appreciation of the challenge of being both a professional and a patient. The invitation for dialogue as they return to work may help with the challenges of role ambiguity as nurse cancer survivors. Based on this study, nurses value the opportunity to enhance care environments with their two-world knowledge through compassionate care, disclosure, advocacy, and volunteering, and coworkers need to appreciate each nurse's unique response to this potentially life-changing process. Nurses in all settings can learn from their cancer survivor colleagues who have been the recipients of care to

[Age index and an interpretation of survivorship curves (author's transl)].

PubMed

Lohmann, W

1977-01-01

Clinical investigations showed that the age dependences of physiological functions do not show -- as generally assumed -- a linear increase with age, but an exponential one. Considering this result one can easily interpret the survivorship curve of a population (Gompertz plot). The only thing that is required is that the probability of death (death rate) is proportional to a function of ageing given by mu(t) = mu0 exp (alpha t). Considering survivorship curves resulting from annual death statistics and fitting them by suitable parameters, then the resulting alpha-values are in agreement with clinical data.

Head and Neck Squamous Cell Carcinoma in Adolescents and Young Adults: Survivorship Patterns and Disparities.

PubMed

Challapalli, Sai D; Simpson, Matthew C; Adjei Boakye, Eric; Pannu, Jay S; Costa, Dary J; Osazuwa-Peters, Nosayaba

2018-05-10

Adolescent and young adult (AYA) head and neck cancer (HNC) patients require longer term follow-ups as they age; yet, little is known about factors associated with survivorship in this population. We aimed to describe nonclinical factors associated with HNC survivorship among AYAs. In this retrospective cohort study, the Surveillance, Epidemiology and End Results 18 database from 2007 to 2014 was queried. Eligible cases were 15-39-year-old primary HNC patients with known cause of death (n = 1777). Kaplan-Meier survival curves stratified by age group (15-29, 30-34, and 35-39) and by health insurance status tested differences in HNC survival among groups with a log-rank test. Variables, including age, sex, race/ethnicity, county-level poverty, anatomic site, stage, and treatment, were controlled for in a competing risk proportional hazards model. Patients were mostly male (64%), with mean age of 33.4 years. Survival rate was 73% after 8 years of follow-up. There were no significant survival differences based on age at diagnosis. However, AYAs who were on Medicaid (adjusted hazard ratio [aHR] = 1.61, 95% confidence interval [CI] 1.22-2.12) or uninsured (aHR = 1.51, 95% CI 1.03-2.21), had an increased hazard of death from HNC, compared with those with private insurance. Health insurance status is the main nonclinical factor associated with survival among AYAs with HNC, and individuals with Medicaid do not fare better than the uninsured. With a potential longer term follow-up in this AYA population, there is need to optimize survivorship irrespective of health insurance status.

Cancer-Related Fatigue in Post-Treatment Cancer Survivors: Theory-Based Development of a Web-Based Intervention

PubMed Central

Walsh, Jane C; Groarke, AnnMarie; Moss-Morris, Rona; Morrissey, Eimear; McGuire, Brian E

2017-01-01

Background Cancer-related fatigue (CrF) is the most common and disruptive symptom experienced by cancer survivors. We aimed to develop a theory-based, interactive Web-based intervention designed to facilitate self-management and enhance coping with CrF following cancer treatment. Objective The aim of our study was to outline the rationale, decision-making processes, methods, and findings which led to the development of a Web-based intervention to be tested in a feasibility trial. This paper outlines the process and method of development of the intervention. Methods An extensive review of the literature and qualitative research was conducted to establish a therapeutic approach for this intervention, based on theory. The psychological principles used in the development process are outlined, and we also clarify hypothesized causal mechanisms. We describe decision-making processes involved in the development of the content of the intervention, input from the target patient group and stakeholders, the design of the website features, and the initial user testing of the website. Results The cocreation of the intervention with the experts and service users allowed the design team to ensure that an acceptable intervention was developed. This evidence-based Web-based program is the first intervention of its kind based on self-regulation model theory, with the primary aim of targeting the representations of fatigue and enhancing self-management of CrF, specifically. Conclusions This research sought to integrate psychological theory, existing evidence of effective interventions, empirically derived principles of Web design, and the views of potential users into the systematic planning and design of the intervention of an easy-to-use website for cancer survivors. PMID:28676465

Life form influences survivorship patterns for 109 herbaceous perennials from six semi-arid ecosystems

USDA-ARS?s Scientific Manuscript database

We compiled six long-term datasets from western North America to test for ecosystem-dependent demographic responses for forbs and grasses. Based on these data, we characterized 123 survivorship curves for 109 species. Three demographic parameters were extracted from these survivorship curves: surviv...

A case-oriented web-based training system for breast cancer diagnosis.

PubMed

Huang, Qinghua; Huang, Xianhai; Liu, Longzhong; Lin, Yidi; Long, Xingzhang; Li, Xuelong

2018-03-01

Breast cancer is still considered as the most common form of cancer as well as the leading causes of cancer deaths among women all over the world. We aim to provide a web-based breast ultrasound database for online training inexperienced radiologists and giving computer-assisted diagnostic information for detection and classification of the breast tumor. We introduce a web database which stores breast ultrasound images from breast cancer patients as well as their diagnostic information. A web-based training system using a feature scoring scheme based on Breast Imaging Reporting and Data System (BI-RADS) US lexicon was designed. A computer-aided diagnosis (CAD) subsystem was developed to assist the radiologists to make scores on the BI-RADS features for an input case. The training system possesses 1669 scored cases, where 412 cases are benign and 1257 cases are malignant. It was tested by 31 users including 12 interns, 11 junior radiologists, and 8 experienced senior radiologists. This online training system automatically creates case-based exercises to train and guide the newly employed or resident radiologists for the diagnosis of breast cancer using breast ultrasound images based on the BI-RADS. After the trainings, the interns and junior radiologists show significant improvement in the diagnosis of the breast tumor with ultrasound imaging (p-value < .05); meanwhile the senior radiologists show little improvement (p-value > .05). The online training system can improve the capabilities of early-career radiologists in distinguishing between the benign and malignant lesions and reduce the misdiagnosis of breast cancer in a quick, convenient and effective manner. Copyright © 2017 Elsevier Ireland Ltd. All rights reserved.

Survivorship analysis when cure is a possibility: a Monte Carlo study.

PubMed

Goldman, A I

1984-01-01

Parametric survivorship analyses of clinical trials commonly involves the assumption of a hazard function constant with time. When the empirical curve obviously levels off, one can modify the hazard function model by use of a Gompertz or Weibull distribution with hazard decreasing over time. Some cancer treatments are thought to cure some patients within a short time of initiation. Then, instead of all patients having the same hazard, decreasing over time, a biologically more appropriate model assumes that an unknown proportion (1 - pi) have constant high risk whereas the remaining proportion (pi) have essentially no risk. This paper discusses the maximum likelihood estimation of pi and the power curves of the likelihood ratio test. Monte Carlo studies provide results for a variety of simulated trials; empirical data illustrate the methods.

Did You Know? Video Series - SEER Cancer Statistics

Cancer.gov

Videos that explain cancer statistics. Choose from topics including survival, statistics overview, survivorship, disparities, and specific cancer types including breast, lung, colorectal, prostate, melanoma of the skin, and others.

Surviving and thriving with cancer using a Web-based health behavior change intervention: randomized controlled trial.

PubMed

Bantum, Erin O'Carrol; Albright, Cheryl L; White, Kami K; Berenberg, Jeffrey L; Layi, Gabriela; Ritter, Phillip L; Laurent, Diana; Plant, Katy; Lorig, Kate

2014-02-24

Given the substantial improvements in cancer screening and cancer treatment in the United States, millions of adult cancer survivors live for years following their initial cancer diagnosis and treatment. However, latent side effects can occur and some symptoms can be alleviated or managed effectively via changes in lifestyle behaviors. The purpose of this study was to test the effectiveness of a six-week Web-based multiple health behavior change program for adult survivors. Participants (n=352) were recruited from oncology clinics, a tumor registry, as well as through online mechanisms, such as Facebook and the Association of Cancer Online Resources (ACOR). Cancer survivors were eligible if they had completed their primary cancer treatment from 4 weeks to 5 years before enrollment. Participants were randomly assigned to the Web-based program or a delayed-treatment control condition. In total, 303 survivors completed the follow-up survey (six months after completion of the baseline survey) and participants in the Web-based intervention condition had significantly greater reductions in insomnia and greater increases in minutes per week of vigorous exercise and stretching compared to controls. There were no significant changes in fruit and vegetable consumption or other outcomes. The Web-based intervention impacted insomnia and exercise; however, a majority of the sample met or exceeded national recommendations for health behaviors and were not suffering from depression or fatigue at baseline. Thus, the survivors were very healthy and well-adjusted upon entry and their ability to make substantial health behavior changes may have been limited. Future work is discussed, with emphasis placed on ways in which Web-based interventions can be more specifically analyzed for benefit, such as in regard to social networking. Clinicaltrials.gov NCT00962494; http://www.clinicaltrials.gov/ct2/show/NCT00962494 (Archived by WebCite at http://www.webcitation.org/6NIv8Dc6Q).

Survivorship of Total Hip Joint Replacements Following Isolated Liner Exchange for Wear.

PubMed

Vadei, Leone; Kieser, David C; Frampton, Chris; Hooper, Gary

2017-11-01

Liner exchange for articular component wear in total hip joint replacements (THJRs) is a common procedure, often thought to be benign with reliable outcomes. Recent studies, however, suggest high failure rates of liner exchange revisions with significant complications. The primary aim of this study was, therefore, to analyze the survivorship of isolated liner exchange for articular component wear, and secondarily to assess the influence of patient demographics (gender, age, and American Society of Anaesthesiologists [ASA] ratings) on rerevisions following isolated liner exchange for wear. A retrospective review of the 15-year New Zealand Joint Registry (1999-2014) was performed, analyzing the outcomes of isolated liner exchange for articular component wear. The survivorship as defined as rerevision with component exchange was determined and 10-year Kaplan-Meier survivorship curves were constructed. These revision rates were compared to age, gender, and ASA rating groups using a log-rank test. The 10-year survivorship of THJR following liner exchange revision for liner wear was 75.3%. If a rerevision was required, the median time to rerevision was 1.33 years with a rerevision rate of 3.33 per 100 component years (95% confidence interval 2.68-4.08/100 component years). The principle reasons for rerevision were dislocation (48.4%) and acetabular component loosening (20.9%). There was no statistically significant difference in rerevision rates based on gender, age categories, or ASA scores. THJR isolated liner exchange for liner wear is not a benign procedure with a survivorship of 75.3% at 10 years. Surgeons contemplating liner exchange revisions should be cognisant of this risk and should adequately assess component position and stability preoperatively. Copyright © 2017 Elsevier Inc. All rights reserved.

English and Spanish oral cancer information on the internet: a pilot surface quality and content evaluation of oral cancer web sites.

PubMed

Irwin, Jeannie Y; Thyvalikakath, Thankam; Spallek, Heiko; Wali, Teena; Kerr, Alexander Ross; Schleyer, Titus

2011-01-01

Oral and pharyngeal cancers are responsible for over 7600 deaths each year in the United States. Given the significance of the disease and the fact that many individuals increasingly rely on health information on the Internet, it is important that patients and others can access clear and accurate oral cancer information on the Web. The objective of this study was threefold: (a) develop an initial method to evaluate surface and content quality of selected English- and Spanish-language oral cancer Web sites; (b) conduct a pilot evaluation; and (c) discuss implications of our findings for dental public health. We developed a search strategy to find oral cancer sites frequented by the public using Medline Plus, Google, and Yahoo in English and Spanish. We adapted the Information Quality Tool (IQT) to perform a surface evaluation and developed a novel tool to evaluate site content for 24 sites each in English and Spanish. English-language sites had an average IQT score of 76.6 (out of 100) and an average content score of 52.1 (out of 100). Spanish-language sites had an average IQT score of 50.3 and an average content score of 25.6. The study produced a quality assessment of oral cancer Web sites useful for clinicians and patients. Sites provided more information on clinical presentation, and etiology, and risk factors, than other aspects of oral cancer. The surface and quality of Spanish-language sites was low, possibly putting Hispanic populations at a disadvantage regarding oral cancer information on the Web.

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

Facebook advertisements recruit parents of children with cancer for an online survey of web-based research preferences.

PubMed

Akard, Terrah Foster; Wray, Sarah; Gilmer, Mary Jo

2015-01-01

Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may help address such challenges yet have not been explored in pediatric cancer populations. This study examined the feasibility of using Facebook advertisements to recruit parent caregivers of children and teenagers with cancer. We also explored the feasibility of Web-based video recording in pediatric palliative care populations by surveying parents of children with cancer regarding (a) their preferences for research methods and (b) technological capabilities of their computers and phones. Facebook's paid advertising program was used to recruit parent caregivers of children currently living with cancer to complete an electronic survey about research preferences and technological capabilities. The advertising campaign generated 3 897 981 impressions, which resulted in 1050 clicks at a total cost of $1129.88. Of 284 screened individuals, 106 were eligible. Forty-five caregivers of children with cancer completed the entire electronic survey. Parents preferred and had technological capabilities for Web-based and electronic research methods. Participant survey responses are reported. Facebook was a useful, cost-effective method to recruit a diverse sample of parent caregivers of children with cancer. Web-based video recording and data collection may be feasible and desirable in samples of children with cancer and their families. Web-based methods (eg, Facebook, Skype) may enhance communication and access between nurses and pediatric oncology patients and their families.

Mesocyclops longisetus effects on survivorship of Aedes aegypti immature stages in car tyres.

PubMed

Manrique-Saide, P; Ibáñez-Bernal, S; Delfín-González, H; Parra Tabla, V

1998-10-01

The effect of the introduction of the entomophagous copepod Mesocyclops longisetus (Acuacultura F.C.B. strain) on the survival of Aedes aegypti immature stages in car tyres was evaluated under semi-natural conditions in the municipality of Merida, Yucatan, Mexico. Life tables were constructed for the immature stages of the mosquito in the presence and absence of M. longisetus, and the survival data were compared using log-linear models. The data set was adjusted using the GLIM statistical package and the quality of adjustment was evaluated with a chi-squared test. Survivorship curves were constructed for each treatment. In the absence of M. longisetus, the survivorship of Ae. aegypti immature stages averaged 9%. The highest mortality rate was observed during the fourth larval instar (54%) and the resulting survival pattern corresponded to a type II survivorship curve. The mortality rate of Ae. aegypti first-instar larvae (fifty per tyre) increased more than 200-fold in the presence of M. longisetus (twenty per tyre) and the highest mortality was during the first two larval instars, where it reached 98.9%, with a resulting survivorship of 0.2%. Overall mortality was sixfold greater in the presence of the copepod than in its absence. The survival pattern of immature stages of Ae. aegypti in the presence of the copepod corresponded to a type III survivorship curve. As M. longisetus was so effective against Ae. aegypti immature stages in tyres under seminatural conditions, its long-term effectiveness should be evaluated under socially and ecologically realistic field conditions in Mexico.

The experience of patients with early-stage testicular cancer during the transition from active treatment to follow-up surveillance.

PubMed

Shen, Abra H; Howell, Doris; Edwards, Elizabeth; Warde, Padraig; Matthew, Andrew; Jones, Jennifer M

2016-04-01

To gain a better understanding of the experiences of patients with early-stage testicular cancer during the transition from active cancer treatment to follow-up care. Cross-sectional multimethod study (questionnaires, focus groups, and telephone interviews) to describe experiences of patients with testicular cancer transitioning to survivorship. Questionnaire package included standardized measures of survivorship knowledge, feeling of preparedness, health-related distress, and perspectives on care coordination. Standard descriptive statistics and Mann-Whitney tests to examine associations between all outcomes based on demographic and clinical variables were performed. Qualitative results (focus groups and interviews) were analyzed with qualitative content analysis. Based on quantitative data (n = 90) and qualitative analyses (n = 13), participants had relatively high survivorship knowledge, most testicular cancer survivors were not provided with any formal transition planning or documentation, and a substantial minority felt unprepared to cope with the aftereffects of testicular cancer and the posttreatment survivorship phase. Younger men had lower survivorship knowledge, feelings of preparedness, and continuity of care scores and were less likely to report having received any self-management tools and education or information of patient resources. Participants reported that they did not know what to expect physically or emotionally after treatment ended and many continued to be frustrated and worried about their health problems. They expressed the need for reliable and personalized resources on what to expect after treatment and more formal transition care planning. Patients with testicular cancer continue to struggle in their transition to posttreatment survivorship. Quality of care must emphasize a shift from a purely disease-focused approach to a wellness-centered approach that provides coordinated, patient-centered, and comprehensive care to optimize quality

Tree survivorship in an oak-hickory forest in southeast Missouri, USA under a long-term regime of annual and periodic controlled burning

Treesearch

Julie A. Huddle; Stephen G. Pallardy

1995-01-01

Fire significantly altered survivorship in southeastern Missouri forests burned at annual and four-year (periodic) intervals since 1949 and 1951. In the ANOVA model tested, treatment, species, pretreatment diameter and the interaction between species and pretreatment diameter were highly significantly related to survivorship. Overall survivorship and survivorship of...

Adapting the content of cancer web sites to the information needs of patients: reliability and readability.

PubMed

Alba-Ruiz, Ruben; Bermúdez-Tamayo, Clara; Pernett, Jaime Jiménez; Garcia-Gutierrez, Jose Francisco; Cózar-Olmo, José Manuel; Valero-Aguilera, Beatriz

2013-12-01

People who use the Internet to research health topics do not usually find all the information they need and do not trust what they read. This study was designed to assess the reliability, accessibility, readability, and popularity of cancer Web sites in Spanish and to analyze the suitability of Web site content in accordance with the specific information needs of cancer patients. This was a two-phase, cross-sectional, descriptive study. The first phase involved data gathering through online searches and direct observation. The second phase involved individual structured interviews with 169 patients with breast, prostate, bladder, and kidney cancer. Spearman rank correlations were calculated between variables. Most sites belonged to nonprofit organizations, followed by universities or medical centers (14%). Thirty-one percent of the Web sites had quality seals, 59% provided details of authorship, 62% provided references to bibliographic sources, 38% identified their funding sources, and 54% showed the date of their last update. Twenty-one percent of the Web sites did not meet the minimum accessibility criteria. With regard to readability, 24% of the texts were considered to be "quite difficult." Patients' information needs vary depending on the type of cancer they have, although all patients want to know about the likelihood of a cure, survival rates, the side effects, and risks of treatment. The health information on cancer available on the Internet in Spanish is not very reliable, accessible, or readable and is not necessarily the information that breast, kidney, prostate, and bladder cancer patients require. The content of cancer Web sites needs to be assessed according to the information needs of patients.

Adapting the Content of Cancer Web Sites to the Information Needs of Patients: Reliability and Readability

PubMed Central

Bermúdez-Tamayo, Clara; Pernett, Jaime Jiménez; Garcia-Gutierrez, Jose Francisco; Cózar-Olmo, José Manuel; Valero-Aguilera, Beatriz

2013-01-01

Abstract Background: People who use the Internet to research health topics do not usually find all the information they need and do not trust what they read. This study was designed to assess the reliability, accessibility, readability, and popularity of cancer Web sites in Spanish and to analyze the suitability of Web site content in accordance with the specific information needs of cancer patients. Materials and Methods: This was a two-phase, cross-sectional, descriptive study. The first phase involved data gathering through online searches and direct observation. The second phase involved individual structured interviews with 169 patients with breast, prostate, bladder, and kidney cancer. Spearman rank correlations were calculated between variables. Results: Most sites belonged to nonprofit organizations, followed by universities or medical centers (14%). Thirty-one percent of the Web sites had quality seals, 59% provided details of authorship, 62% provided references to bibliographic sources, 38% identified their funding sources, and 54% showed the date of their last update. Twenty-one percent of the Web sites did not meet the minimum accessibility criteria. With regard to readability, 24% of the texts were considered to be “quite difficult.” Patients' information needs vary depending on the type of cancer they have, although all patients want to know about the likelihood of a cure, survival rates, the side effects, and risks of treatment. Conclusions: The health information on cancer available on the Internet in Spanish is not very reliable, accessible, or readable and is not necessarily the information that breast, kidney, prostate, and bladder cancer patients require. The content of cancer Web sites needs to be assessed according to the information needs of patients. PMID:24073899

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.

The utility of web mining for epidemiological research: studying the association between parity and cancer risk [Web Mining for Epidemiological Research. Assessing its Utility in Exploring the Association Between Parity and Cancer Risk

DOE PAGES

Tourassi, Georgia; Yoon, Hong-Jun; Xu, Songhua; ...

2015-11-27

Background: The World Wide Web has emerged as a powerful data source for epidemiological studies related to infectious disease surveillance. However, its potential for cancer-related epidemiological discoveries is largely unexplored. Methods: Using advanced web crawling and tailored information extraction procedures we automatically collected and analyzed the text content of 79,394 online obituary articles published between 1998 and 2014. The collected data included 51,911 cancer (27,330 breast; 9,470 lung; 6,496 pancreatic; 6,342 ovarian; 2,273 colon) and 27,483 non-cancer cases. With the derived information, we replicated a case-control study design to investigate the association between parity and cancer risk. Age-adjusted odds ratiosmore » (ORs) with 95% confidence intervals (CIs) were calculated for each cancer type and compared to those reported in large-scale epidemiological studies. Results: Parity was found to be associated with a significantly reduced risk of breast cancer (OR=0.78, 95% CI = 0.75 to 0.82), pancreatic cancer (OR=0.78, 95% CI = 0.72 to 0.83), colon cancer (OR=0.67, 95% CI = 0.60 to 0.74), and ovarian cancer (OR=0.58, 95% CI = 0.54 to 0.62). Marginal association was found for lung cancer prevalence (OR=0.87, 95% CI = 0.81 to 0.92). The linear trend between multi-parity and reduced cancer risk was dramatically more pronounced for breast and ovarian cancer than the other cancers included in the analysis. Conclusion: This large web-mining study on parity and cancer risk produced findings very similar to those reported with traditional observational studies. It may be used as a promising strategy to generate study hypotheses for guiding and prioritizing future epidemiological studies.« less

The utility of web mining for epidemiological research: studying the association between parity and cancer risk [Web Mining for Epidemiological Research. Assessing its Utility in Exploring the Association Between Parity and Cancer Risk

DOE Office of Scientific and Technical Information (OSTI.GOV)

Tourassi, Georgia; Yoon, Hong-Jun; Xu, Songhua

Background: The World Wide Web has emerged as a powerful data source for epidemiological studies related to infectious disease surveillance. However, its potential for cancer-related epidemiological discoveries is largely unexplored. Methods: Using advanced web crawling and tailored information extraction procedures we automatically collected and analyzed the text content of 79,394 online obituary articles published between 1998 and 2014. The collected data included 51,911 cancer (27,330 breast; 9,470 lung; 6,496 pancreatic; 6,342 ovarian; 2,273 colon) and 27,483 non-cancer cases. With the derived information, we replicated a case-control study design to investigate the association between parity and cancer risk. Age-adjusted odds ratiosmore » (ORs) with 95% confidence intervals (CIs) were calculated for each cancer type and compared to those reported in large-scale epidemiological studies. Results: Parity was found to be associated with a significantly reduced risk of breast cancer (OR=0.78, 95% CI = 0.75 to 0.82), pancreatic cancer (OR=0.78, 95% CI = 0.72 to 0.83), colon cancer (OR=0.67, 95% CI = 0.60 to 0.74), and ovarian cancer (OR=0.58, 95% CI = 0.54 to 0.62). Marginal association was found for lung cancer prevalence (OR=0.87, 95% CI = 0.81 to 0.92). The linear trend between multi-parity and reduced cancer risk was dramatically more pronounced for breast and ovarian cancer than the other cancers included in the analysis. Conclusion: This large web-mining study on parity and cancer risk produced findings very similar to those reported with traditional observational studies. It may be used as a promising strategy to generate study hypotheses for guiding and prioritizing future epidemiological studies.« less

The Internet as a source of health information: experiences of cancer survivors and caregivers with healthcare providers.

PubMed

Dolce, Maria C

2011-05-01

To describe the experiences of cancer survivors and caregivers with healthcare providers in the context of the Internet as a source of health information. Qualitative description. Online cancer communities hosted by the Association of Cancer Online Resources. Purposive sample of 488 cancer survivors, with varying cancer types and survivorship stages, and caregivers. Secondary data analysis using Krippendorff's thematic clustering technique of qualitative content analysis. Survivorship, healthcare relationships, and the Internet. Disenchantment with healthcare relationships was associated with failed expectations related to evidence-based practice, clinical expertise, informational support, and therapeutic interpersonal communication. Survivors and caregivers exercised power in healthcare relationships through collaboration, direct confrontation, becoming expert, and endorsement to influence and control care decisions. Disenchantment propelled cancer survivors and caregivers to search the Internet for health information and resources. Conversely, Internet information-seeking precipitated the experience of disenchantment. Through online health information and resources, concealed failures in healthcare relationships were revealed and cancer survivors and caregivers were empowered to influence and control care decisions. The findings highlight failures in cancer survivorship care and underscore the importance of novel interdisciplinary programs and models of care that support evidence-informed decision making, self-management, and improved quality of life. Healthcare professionals need to receive education on survivors' use of the Internet as a source of health information and its impact on healthcare relationships. Future research should include studies examining the relationship between disenchantment and survivorship outcomes.

CAS-viewer: web-based tool for splicing-guided integrative analysis of multi-omics cancer data.

PubMed

Han, Seonggyun; Kim, Dongwook; Kim, Youngjun; Choi, Kanghoon; Miller, Jason E; Kim, Dokyoon; Lee, Younghee

2018-04-20

The Cancer Genome Atlas (TCGA) project is a public resource that provides transcriptomic, DNA sequence, methylation, and clinical data for 33 cancer types. Transforming the large size and high complexity of TCGA cancer genome data into integrated knowledge can be useful to promote cancer research. Alternative splicing (AS) is a key regulatory mechanism of genes in human cancer development and in the interaction with epigenetic factors. Therefore, AS-guided integration of existing TCGA data sets will make it easier to gain insight into the genetic architecture of cancer risk and related outcomes. There are already existing tools analyzing and visualizing alternative mRNA splicing patterns for large-scale RNA-seq experiments. However, these existing web-based tools are limited to the analysis of individual TCGA data sets at a time, such as only transcriptomic information. We implemented CAS-viewer (integrative analysis of Cancer genome data based on Alternative Splicing), a web-based tool leveraging multi-cancer omics data from TCGA. It illustrates alternative mRNA splicing patterns along with methylation, miRNAs, and SNPs, and then provides an analysis tool to link differential transcript expression ratio to methylation, miRNA, and splicing regulatory elements for 33 cancer types. Moreover, one can analyze AS patterns with clinical data to identify potential transcripts associated with different survival outcome for each cancer. CAS-viewer is a web-based application for transcript isoform-driven integration of multi-omics data in multiple cancer types and will aid in the visualization and possible discovery of biomarkers for cancer by integrating multi-omics data from TCGA.

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

Long-term actuarial survivorship analysis of an interspinous stabilization system

PubMed Central

Sénégas, Jacques; Pointillart, Vincent; Mangione, Paolo

2007-01-01

In 1986, an interspinous dynamic stabilization system (the prototype of the current Wallis implant) was designed to stiffen unstable operated degenerate lumbar segments with a hard interspinous blocker to limit extension and a tension band around the spinous processes to secure the implant and limit flexion. Restoring physiological mechanical conditions to the treated level(s) while preserving some intervertebral mobility was intended to treat low-back pain related to degenerative instability without increasing stress forces in the adjacent segments. The procedure was easily reversible. If low back pain persisted or recurred, the device was removed and stability was achieved using fusion. The intermediate-term results were promising, but the long-term safety and efficacy of this dynamic interspinous stabilization device has not been previously documented. We retrospectively reviewed the hospital files of all the patients (n = 241) who had this dynamic stabilization system implanted between 1987 and 1995, contacting as many as possible to determine the actuarial survivorship of the system. In this manner, 142 of the 241 patients (58.9%) were contacted by telephone. The endpoints used for the survivorship analysis were ‘any subsequent lumbar operation’ and ‘implant removal’. At 14 years follow-up, values of actuarial survivorship with 95% confidence interval were 75.9 ± 8.3 and 81.3 ± 6.8% for the endpoints ‘any subsequent lumbar operation’ and ‘implant removal’, respectively. There was no difference in survivorship of multiple-level implants with respect to single-level devices. Although the conclusions of the present study must be tempered by the 41% attrition rate, these findings support the long-term safety of this system, and possibly long-term protective action against adjacent-level degeneration by motion preservation. Outcomes at least equivalent to those of fusion were observed without the primary drawbacks of fusion. PMID:17426988

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

Facebook Ads Recruit Parents of Children with Cancer for an Online Survey of Web-Based Research Preferences

PubMed Central

Akard, Terrah Foster; Wray, Sarah; Gilmer, Mary

2014-01-01

Background Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and web-based research methods may help address such challenges yet have not been explored in pediatric cancer populations. Objective This study examined the feasibility of using Facebook ads to recruit parent caregivers of children and teens with cancer. We also explored the feasibility of web-based video recording in pediatric palliative care populations by surveying parents of children with cancer regarding (a) their preferences for research methods and (b) technological capabilities of their computers and phones. Methods Facebook's paid advertising program was used to recruit parent caregivers of children currently living with cancer to complete an electronic survey about research preferences and technological capabilities. Results The advertising campaign generated 3,897,981 impressions which resulted in 1050 clicks at a total cost of $1129.88. Of 284 screened individuals, 106 were eligible. Forty-five caregivers of children with cancer completed the entire electronic survey. Parents preferred and had technological capabilities for web-based and electronic research methods. Participant survey responses are reported. Conclusion Facebook was a useful, cost-effective method to recruit a diverse sample of parent caregivers of children with cancer. Web-based video recording and data collection may be feasible and desirable in samples of children with cancer and their families. Implications for Practice Web-based methods (e.g., Facebook, Skype) may enhance communication and access between nurses and pediatric oncology patients and their families. PMID:24945264

Survivorship of Pileated Woodpeckers in northeastern Oregon.

Treesearch

Evelyn L. Bull

2001-01-01

Knowledge of the survival of the Pileated Woodpecker (Dryocopus pileatus) is essential in managing viable populations of the species. In eight study areas in northeastern Oregon, survivorship of adult Pileated Woodpeckers was 0.60 after 6 mo, 0.47 after 12 me, and 0.35 after 18 mo. Of three juveniles radio-tagged in late summer or fall, two...

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.

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

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.

Muscle Invasive Bladder Cancer: From Diagnosis to Survivorship

PubMed Central

Mohamed, N. E.; Diefenbach, M. A.; Goltz, H. H.; Lee, C. T.; Latini, D.; Kowalkowski, M.; Philips, C.; Hassan, W.; Hall, S. J.

2012-01-01

Bladder cancer is the fifth most commonly diagnosed cancer and the most expensive adult cancer in average healthcare costs incurred per patient in the USA. However, little is known about factors influencing patients' treatment decisions, quality of life, and responses to treatment impairments. The main focus of this paper is to better understand the impact of muscle invasive bladder cancer on patient quality of life and its added implications for primary caregivers and healthcare providers. In this paper, we discuss treatment options, side effects, and challenges that patients and family caregivers face in different phases along the disease trajectory and further identify crucial areas of needed research. PMID:22924038

BOADICEA breast cancer risk prediction model: updates to cancer incidences, tumour pathology and web interface

PubMed Central

Lee, A J; Cunningham, A P; Kuchenbaecker, K B; Mavaddat, N; Easton, D F; Antoniou, A C

2014-01-01

Background: The Breast and Ovarian Analysis of Disease Incidence and Carrier Estimation Algorithm (BOADICEA) is a risk prediction model that is used to compute probabilities of carrying mutations in the high-risk breast and ovarian cancer susceptibility genes BRCA1 and BRCA2, and to estimate the future risks of developing breast or ovarian cancer. In this paper, we describe updates to the BOADICEA model that extend its capabilities, make it easier to use in a clinical setting and yield more accurate predictions. Methods: We describe: (1) updates to the statistical model to include cancer incidences from multiple populations; (2) updates to the distributions of tumour pathology characteristics using new data on BRCA1 and BRCA2 mutation carriers and women with breast cancer from the general population; (3) improvements to the computational efficiency of the algorithm so that risk calculations now run substantially faster; and (4) updates to the model's web interface to accommodate these new features and to make it easier to use in a clinical setting. Results: We present results derived using the updated model, and demonstrate that the changes have a significant impact on risk predictions. Conclusion: All updates have been implemented in a new version of the BOADICEA web interface that is now available for general use: http://ccge.medschl.cam.ac.uk/boadicea/. PMID:24346285

Survivorship and longevity of adult Diamesa mendotae Muttkowski, 1915 (Diptera: Chironomidae) at controlled, sub-freezing temperatures

USGS Publications Warehouse

Mazack, Jane E.; Kranzfelder, Petra; Anderson, Alyssa M.; Bouchard, William; Perry, James; Vondracek, Bruce C.; Ferrington, Leonard C.

2014-01-01

Diamesa mendotae Muttkowski, 1915 is a winter-active species common in groundwater-buffered streams of Minnesota and Wisconsin. This species is capable of surviving under snow cover for at least 28 days. Field collections of adult D. mendotae were used to determine survivorship under long-term exposure to controlled sub-freezing conditions. Specimens were placed into a controlled temperature chamber at −5 °C, batches removed at weekly intervals, and subsequently held at 6 °C to determine survivorship and longevity. Our results indicate that overall survivorship is negatively related to treatment duration of sub-freezing treatment, individuals can survive sub-freezing temperatures for at least 70 days, with total longevity of 92 days. Additionally, males had a significantly higher rate of survivorship than females within treatments. Total longevity increased with treatment time, suggesting adult D. mendotae may survive long periods of below-freezing temperatures under natural conditions before mating, which may convey population-level advantages.

Knowledge and Preferences of Primary Care Providers in Delivering Head and Neck Cancer Survivorship Care.

PubMed

Berkowitz, Callie; Allen, Deborah H; Tenhover, Jennifer; Zullig, Leah L; Ragsdale, John; Fischer, Jonathan E; Pollak, Kathryn I; Koontz, Bridget F

2017-07-14

Long-term care for head and neck cancer (HNC) survivors is complex and requires coordination among multiple providers. Clinical practice guidelines highlight the role of primary care providers (PCPs) in screening for secondary cancer/recurrence, assessment of late/long-term side effects, and referrals for appropriate specialty management of toxicity. However, these responsibilities may be difficult to meet within the scope of primary care practice. We conducted this study to explore preferences, comfort, and knowledge of PCPs in the care of HNC survivors. We piloted a 40-item web-based survey developed with oncologist and PCP input targeted for family medicine and internal medicine providers. Responses were collected within a single university health system over 2 months. PCPs (n = 28; RR = 11.3%) were interested in learning about health promotion after cancer treatment (89%) and generally agree that their current practice patterns address healthy lifestyle behaviors (82%). However, only 32% of PCPs felt confident they could manage late/long-term side effects of chemotherapy, radiation, or surgery. Only 29% felt confident they could provide appropriate cancer screening. Looking at shared care responsibilities with oncology providers, PCPs perceived being responsible for 30% of care in the first year after treatment and 81% of care after 5 years. Seventy-one percent of PCPs agreed that oncologists provided them necessary information, yet 32% of PCPs found it difficult to coordinate with cancer providers. While these PCPs perceive increased care responsibility for long-term survivors, most are uncomfortable screening for recurrence and managing late/long-term side effects. Education and mutual coordination between PCPs and oncology providers may improve survivor care.

A systematic review of readability and comprehension instruments used for print and web-based cancer information.

PubMed

Friedman, Daniela B; Hoffman-Goetz, Laurie

2006-06-01

Adequate functional literacy skills positively influence individuals' ability to take control of their health. Print and Web-based cancer information is often written at difficult reading levels. This systematic review evaluates readability instruments (FRE, F-K, Fog, SMOG, Fry) used to assess print and Web-based cancer information and word recognition and comprehension tests (Cloze, REALM, TOFHLA, WRAT) that measure people's health literacy. Articles on readability and comprehension instruments explicitly used for cancer information were assembled by searching MEDLINE and Psyc INFO from 1993 to 2003. In all, 23 studies were included; 16 on readability, 6 on comprehension, and 1 on readability and comprehension. Of the readability investigations, 14 focused on print materials, and 2 assessed Internet information. Comprehension and word recognition measures were not applied to Web-based information. None of the formulas were designed to determine the effects of visuals or design factors that could influence readability and comprehension of cancer education information.

Uptake of a web-based oncology protocol system: how do cancer clinicians use eviQ cancer treatments online?

PubMed Central

2013-01-01

Background The use of computerized systems to support evidence-based practice is commonplace in contemporary medicine. Despite the prolific use of electronic support systems there has been relatively little research on the uptake of web-based systems in the oncology setting. Our objective was to examine the uptake of a web-based oncology protocol system (http://www.eviq.org.au) by Australian cancer clinicians. Methods We used web-logfiles and Google Analytics to examine the characteristics of eviQ registrants from October 2009-December 2011 and patterns of use by cancer clinicians during a typical month. Results As of December 2011, there were 16,037 registrants; 85% of whom were Australian health care professionals. During a typical month 87% of webhits occurred in standard clinical hours (08:00 to 18:00 weekdays). Raw webhits were proportional to the size of clinician groups: nurses (47% of Australian registrants), followed by doctors (20%), and pharmacists (14%). However, pharmacists had up to three times the webhit rate of other clinical groups. Clinicians spent five times longer viewing chemotherapy protocol pages than other content and the protocols viewed reflect the most common cancers: lung, breast and colorectal. Conclusions Our results demonstrate eviQ is used by a range of health professionals involved in cancer treatment at the point-of-care. Continued monitoring of electronic decision support systems is vital to understanding how they are used in clinical practice and their impact on processes of care and patient outcomes. PMID:23497080

A Semantic Web-based System for Mining Genetic Mutations in Cancer Clinical Trials.

PubMed

Priya, Sambhawa; Jiang, Guoqian; Dasari, Surendra; Zimmermann, Michael T; Wang, Chen; Heflin, Jeff; Chute, Christopher G

2015-01-01

Textual eligibility criteria in clinical trial protocols contain important information about potential clinically relevant pharmacogenomic events. Manual curation for harvesting this evidence is intractable as it is error prone and time consuming. In this paper, we develop and evaluate a Semantic Web-based system that captures and manages mutation evidences and related contextual information from cancer clinical trials. The system has 2 main components: an NLP-based annotator and a Semantic Web ontology-based annotation manager. We evaluated the performance of the annotator in terms of precision and recall. We demonstrated the usefulness of the system by conducting case studies in retrieving relevant clinical trials using a collection of mutations identified from TCGA Leukemia patients and Atlas of Genetics and Cytogenetics in Oncology and Haematology. In conclusion, our system using Semantic Web technologies provides an effective framework for extraction, annotation, standardization and management of genetic mutations in cancer clinical trials.

Returning to Work after Cancer: Quantitative Studies and Prototypical Narratives

PubMed Central

Steiner, John F.; Nowels, Carolyn T.; Main, Deborah S.

2009-01-01

Objective A combination of quantitative data and illustrative narratives may allow cancer survivorship researchers to disseminate their research findings more broadly. We identified recent, methodologically rigorous quantitative studies on return to work after cancer, summarized the themes from these studies, and illustrated those themes with narratives of individual cancer survivors. Methods We reviewed English-language studies of return to work for adult cancer survivors through June, 2008, and identified 13 general themes from papers that met methodological criteria (population-based sampling, prospective and longitudinal assessment, detailed assessment of work, evaluation of economic impact, assessment of moderators of work return, and large sample size). We drew survivorship narratives from a prior qualitative research study to illustrate these themes. Results Nine quantitative studies met 4 or more of our 6 methodological criteria. These studies suggested that most cancer survivors could return to work without residual disabilities. Cancer site, clinical prognosis, treatment modalities, socioeconomic status, and attributes of the job itself influenced the likelihood of work return. Three narratives - a typical survivor who returned to work after treatment, an individual unable to return to work, and an inspiring survivor who returned to work despite substantial barriers - illustrated many of the themes from the quantitative literature while providing additional contextual details. Conclusion Illustrative narratives can complement the findings of cancer survivorship research if researchers are rigorous and transparent in the selection, analysis, and retelling of those stories. PMID:19507264

A new way to experience the International Gastric Cancer Association Congress: the Web Round Tables.

PubMed

Morgagni, Paolo; Verlato, Giuseppe; Marrelli, Daniele; Roviello, Franco; de Manzoni, Giovanni

2014-10-01

In an attempt to attract a wider diversity of professionals to the 10th International Gastric Cancer Association Congress (IGCC) held in June 2013, the Scientific Committee of the conference organized a number of pre-congress Web Round Tables to discuss cutting-edge topics relating to gastric cancer treatment. Twenty Web Round Tables, each coordinated by a different chairman, were proposed on the IGCC Website 1 year before the congress. Each chairman identified a number of studies related to the theme of his/her Round Table and invited corresponding authors to send an update of their conclusions in light of their subsequent experience, which would then form the basis of discussion of the Web Round Tables. The chairmen posted several questions regarding these updates on the web and opened a forum for a period of 1-2 months. The forum was free and specifically intended for congress participants. Fifty-one (9.9 %) of the 516 authors contacted took part in the initiative. Two hundred fifty participants from 21 countries joined the forum discussion and posted 671 comments. The Web Round Tables were viewed 15,810 times while the forum was open. Overall, the Web Round Tables aroused considerable interest, especially among young professionals working in the area of gastric cancer who had the opportunity to contact and interact with experts in what often turned out to be an interesting and lively exchange of views. All the discussions are now freely available for consultation on the IGCC website. The Web Round Table experience was presented, with great success, during the conference at special afternoon sessions.

Wide-ranging impacts reported by NZ cancer survivors: is supporting cancer survivor resilience a health sector role?

PubMed

O'Brien, Inga; Signal, Louise; Sarfati, Diana

2018-04-01

Cancer survivor numbers are on the rise but little is known about New Zealand (NZ) survivors' experiences with management of cancer-related impacts and vulnerability. This study explored the experiences and resilience of NZ cancer survivors and the experiences of healthcare practitioners who work with cancer survivors. There is a focus on indigenous Māori survivors. This study used qualitative methods to explore survivors and healthcare practitioners' views on cancer-related impact and management strategies. Two focus groups were conducted with mainly colorectal cancer survivors residing in the central regions of NZ. There was one Māori-only group (n = 6 participants) and one multicultural group (n = 18 participants). The Māori-only focus group was purposefully organised to provide a culturally safe setting for the research. In addition, 12 in-depth interviews were conducted with healthcare practitioners between October 2011 and March 2012. Wide-ranging survivorship impacts were described by survivors across physical, emotional, spiritual and social domains. Shame resilience and relationships, particularly with healthcare practitioners, were indicated as useful supports. Healthcare practitioners' time constraints and role priorities were identified as barriers to their ability to provide survivorship support. This study generated qualitative data on survivorship impacts and components of survivor resilience in NZ. It also provided insights into the need for better strategies and pathways to help the NZ health system be more responsive to both Māori and non-Māori survivors. Survivor impacts create vulnerabilities that are experienced and described differently by individuals and groups in NZ. Tailored survivor support that can enhance resilience and support relationships is needed in NZ.

Lived experiences of breast cancer survivors after diagnosis, treatment and beyond: qualitative study.

PubMed

Williams, Faustine; Jeanetta, Stephen C

2016-06-01

The number of breast cancer survivors has increased since 1990 due to advances in biomedical technology that lead to an increase in early diagnosis and treatment. Research on survivorship has focused on the psychological and treatment aspects of the disease. The goal of this study was focused on exploring the lived experiences of breast cancer survivors from diagnosis, treatment and beyond. To understand the lived experiences of women who are breast cancer survivors. A purposive sampling strategy was used to recruit participants from two Missouri cancer centres. A total of 15 women breast cancer survivors were interviewed. Three major themes emerged that described the lived experiences of the women. These were factors from the diagnosis and treatment management impacting survivorship, relationship and support system and implication of survivorship. Participants noted that coping with the diagnosis and treatment was a stressful journey and required lots of adjustment and changes. Some developed various techniques such as journaling their activities which provided comfort. In addition, support from family was shared as the key which gave them strength and courage through the different stages of treatment. However, they found it difficult to articulate what survivorship meant. Using in-depth interview techniques, this study shed light on the experiences of women who were diagnosed with breast cancer and have completed treatment. They acknowledged frustration with their diagnosis and body changes. Support received from family and friends helped them cope through their treatment. However, they felt abandoned once the treatment phase was over and were uncertain what survivorhood meant to them. © 2015 The Authors Health Expectations Published by John Wiley & Sons Ltd.

Psychoneuroimmunology and cancer: A decade of discovery, paradigm shifts, and methodological innovations

PubMed Central

McDonald, Paige Green; O’Connell, Mary; Lutgendorf, Susan K.

2013-01-01

This article introduces the supplemental issue of “Cancer, Brain, Behavior, and Immunity” and outlines important discoveries, paradigm shifts, and methodological innovations that have emerged in the past decade to advance mechanistic and translational understanding of biobehavioral influences on tumor biology, cancer treatment-related sequelae, and cancer outcomes. We offer a heuristic framework for research on biobehavioral pathways in cancer. The shifting survivorship landscape is highlighted and we propose that the changing demographics suggest prudent adoption of a life course perspective of cancer and cancer survivorship. We note opportunities for psychoneuroimmunology (PNI) research to ameliorate the long-term, unintended consequences of aggressive curative intent and call attention to the critical role of reciprocal translational pathways between animal and human studies. Lastly, we briefly summarize the articles included in this compilation and offer our perspectives on future research directions. HighlightsThis article introduces the National Cancer Institute sponsored special issue Cancer, Brain, Behavior, and Immunity and highlights the last decade of PNI-cancer research. PMID:23333846

Inbreeding Depression and Male Survivorship in Drosophila: Implications for Senescence Theory

PubMed Central

Swindell, William R.; Bouzat, Juan L.

2006-01-01

The extent to which inbreeding depression affects longevity and patterns of survivorship is an important issue from several research perspectives, including evolutionary biology, conservation biology, and the genetic analysis of quantitative traits. However, few previous inbreeding depression studies have considered longevity as a focal life-history trait. We maintained laboratory populations of Drosophila melanogaster at census population sizes of 2 and 10 male-female pairs for up to 66 generations and performed repeated assays of male survivorship throughout this time period. On average, significant levels of inbreeding depression were observed for median life span and age-specific mortality. For age-specific mortality, the severity of inbreeding depression increased over the life span. We found that a baseline inbreeding load of 0.307 lethal equivalents per gamete affected age-specific mortality, and that this value increased at a rate of 0.046 per day of the life span. With respect to some survivorship parameters, the differentiation of lineages was nonlinear with respect to the inbreeding coefficient, which suggested that nonadditive genetic variation contributed to variation among lineages. These findings provide insights into the genetic basis of longevity as a quantitative trait and have implications regarding the mutation-accumulation evolutionary explanation of senescence. PMID:16204222

Managing fatigue after cancer treatment: development of RESTORE, a web-based resource to support self-management.

PubMed

Foster, C; Calman, L; Grimmett, C; Breckons, M; Cotterell, P; Yardley, L; Joseph, J; Hughes, S; Jones, R; Leonidou, C; Armes, J; Batehup, L; Corner, J; Fenlon, D; Lennan, E; Morris, C; Neylon, A; Ream, E; Turner, L; Richardson, A

2015-08-01

The aim of this study is to co-create an evidence-based and theoretically informed web-based intervention (RESTORE) designed to enhance self-efficacy to live with cancer-related fatigue (CRF) following primary cancer treatment. A nine-step process informed the development of the intervention: (1) review of empirical literature; (2) review of existing patient resources; (3) establish theoretical framework; (4) establish design team with expertise in web-based interventions, CRF and people affected by cancer; (5) develop prototype intervention; (6) user testing phase 1; (7) refinement of prototype; (8) user testing phase 2; and (9) develop final intervention. Key stakeholders made a critical contribution at every step of intervention development, and user testing, which involved an iterative process and resulted in the final intervention. The RESTORE intervention has five sessions; sessions 1 and 2 include an introduction to CRF and goal setting. Sessions 3-5 can be tailored to user preference and are designed to cover areas of life where CRF may have an impact: home and work life, personal relationships and emotional adjustment. It is feasible to systematically 'co-create' an evidence-based and theory-driven web-based self-management intervention to support cancer survivors living with the consequences of cancer and its treatment. This is the first account of the development of a web-based intervention to support self-efficacy to manage CRF. An exploratory trial to test the feasibility and acceptability of RESTORE is now warranted. Copyright © 2015 John Wiley & Sons, Ltd.

The Experiences of Young Adults With Hodgkin Lymphoma Transitioning to Survivorship: A Grounded Theory Study.

PubMed

Matheson, Lauren; Boulton, Mary; Lavender, Verna; Collins, Graham; Mitchell-Floyd, Tracy; Watson, Eila

2016-09-01

To explore the experiences of young adults with Hodgkin lymphoma during the first year following the end of initial treatment. 
. A qualitative grounded theory study.
. Interviews with patients recruited from three cancer centers in England.
. 10 Hodgkin lymphoma survivors (four men and six women aged 21-39 years) recruited as part of a larger study of 28 young adult cancer survivors.
. Semistructured interviews were conducted about two months after treatment completion, and follow-up interviews were conducted seven months later. The authors' grounded theory of positive psychosocial adjustment to cancer provided the conceptual framework.
. Positive reframing, informal peer support, acceptance, and normalization helped young adults dismantle the threats of Hodgkin lymphoma during the course of treatment. However, they described losing a sense of security following treatment completion. Greater age-specific information to enable better preparation for the future was desired regarding body image, fertility, sexual relationships, work, and socializing.
. Informal support mechanisms, like peer support and patient navigator interventions, may be useful ways to further support young adults after treatment completion.
. Positive psychosocial adjustment to cancer survivorship in young adults is facilitated by having informal peer support; being able to positively reframe, accept, and normalize their experience; and being prepared for the future.

The utility of web mining for epidemiological research: studying the association between parity and cancer risk

PubMed Central

Yoon, Hong-Jun; Xu, Songhua; Han, Xuesong

2016-01-01

Background The World Wide Web has emerged as a powerful data source for epidemiological studies related to infectious disease surveillance. However, its potential for cancer-related epidemiological discoveries is largely unexplored. Methods Using advanced web crawling and tailored information extraction procedures, the authors automatically collected and analyzed the text content of 79 394 online obituary articles published between 1998 and 2014. The collected data included 51 911 cancer (27 330 breast; 9470 lung; 6496 pancreatic; 6342 ovarian; 2273 colon) and 27 483 non-cancer cases. With the derived information, the authors replicated a case-control study design to investigate the association between parity (i.e., childbearing) and cancer risk. Age-adjusted odds ratios (ORs) with 95% confidence intervals (CIs) were calculated for each cancer type and compared to those reported in large-scale epidemiological studies. Results Parity was found to be associated with a significantly reduced risk of breast cancer (OR = 0.78, 95% CI, 0.75-0.82), pancreatic cancer (OR = 0.78, 95% CI, 0.72-0.83), colon cancer (OR = 0.67, 95% CI, 0.60-0.74), and ovarian cancer (OR = 0.58, 95% CI, 0.54-0.62). Marginal association was found for lung cancer risk (OR = 0.87, 95% CI, 0.81-0.92). The linear trend between increased parity and reduced cancer risk was dramatically more pronounced for breast and ovarian cancer than the other cancers included in the analysis. Conclusion This large web-mining study on parity and cancer risk produced findings very similar to those reported with traditional observational studies. It may be used as a promising strategy to generate study hypotheses for guiding and prioritizing future epidemiological studies. PMID:26615183

The utility of web mining for epidemiological research: studying the association between parity and cancer risk.

PubMed

Tourassi, Georgia; Yoon, Hong-Jun; Xu, Songhua; Han, Xuesong

2016-05-01

The World Wide Web has emerged as a powerful data source for epidemiological studies related to infectious disease surveillance. However, its potential for cancer-related epidemiological discoveries is largely unexplored. Using advanced web crawling and tailored information extraction procedures, the authors automatically collected and analyzed the text content of 79 394 online obituary articles published between 1998 and 2014. The collected data included 51 911 cancer (27 330 breast; 9470 lung; 6496 pancreatic; 6342 ovarian; 2273 colon) and 27 483 non-cancer cases. With the derived information, the authors replicated a case-control study design to investigate the association between parity (i.e., childbearing) and cancer risk. Age-adjusted odds ratios (ORs) with 95% confidence intervals (CIs) were calculated for each cancer type and compared to those reported in large-scale epidemiological studies. Parity was found to be associated with a significantly reduced risk of breast cancer (OR = 0.78, 95% CI, 0.75-0.82), pancreatic cancer (OR = 0.78, 95% CI, 0.72-0.83), colon cancer (OR = 0.67, 95% CI, 0.60-0.74), and ovarian cancer (OR = 0.58, 95% CI, 0.54-0.62). Marginal association was found for lung cancer risk (OR = 0.87, 95% CI, 0.81-0.92). The linear trend between increased parity and reduced cancer risk was dramatically more pronounced for breast and ovarian cancer than the other cancers included in the analysis. This large web-mining study on parity and cancer risk produced findings very similar to those reported with traditional observational studies. It may be used as a promising strategy to generate study hypotheses for guiding and prioritizing future epidemiological studies. © The Author 2015. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Genetic Counseling for Breast Cancer Susceptibility in African American Women

DTIC Science & Technology

2007-09-01

cancer survivorship begins at diagnosis (26, 27), women who were newly diagnosed with cancer were eligible for participation. To be included in the...total number of family members diagnosed with breast and/or ovarian cancer (29). We also evaluated age at diagnosis , time since diagnosis , and type

Mutational Signatures in Cancer (MuSiCa): a web application to implement mutational signatures analysis in cancer samples.

PubMed

Díaz-Gay, Marcos; Vila-Casadesús, Maria; Franch-Expósito, Sebastià; Hernández-Illán, Eva; Lozano, Juan José; Castellví-Bel, Sergi

2018-06-14

Mutational signatures have been proved as a valuable pattern in somatic genomics, mainly regarding cancer, with a potential application as a biomarker in clinical practice. Up to now, several bioinformatic packages to address this topic have been developed in different languages/platforms. MutationalPatterns has arisen as the most efficient tool for the comparison with the signatures currently reported in the Catalogue of Somatic Mutations in Cancer (COSMIC) database. However, the analysis of mutational signatures is nowadays restricted to a small community of bioinformatic experts. In this work we present Mutational Signatures in Cancer (MuSiCa), a new web tool based on MutationalPatterns and built using the Shiny framework in R language. By means of a simple interface suited to non-specialized researchers, it provides a comprehensive analysis of the somatic mutational status of the supplied cancer samples. It permits characterizing the profile and burden of mutations, as well as quantifying COSMIC-reported mutational signatures. It also allows classifying samples according to the above signature contributions. MuSiCa is a helpful web application to characterize mutational signatures in cancer samples. It is accessible online at http://bioinfo.ciberehd.org/GPtoCRC/en/tools.html and source code is freely available at https://github.com/marcos-diazg/musica .

Locating relationship and communication issues among stressors associated with breast cancer.

PubMed

Weber, Kirsten M; Solomon, Denise Haunani

2008-11-01

This article clarifies how the social contexts in which breast cancer survivors live can contribute to the stress they experience because of the disease. Guided by Solomon and Knobloch's (2004) relational turbulence model and Petronio's (2002) communication privacy management theory, this study explores personal relationship and communication boundary issues within stressors that are associated with the diagnosis, treatment, and early survivorship of breast cancer. A qualitative analysis of discourse posted on breast cancer discussion boards and weblogs using the constant comparative method and open-coding techniques revealed 12 sources of stress. Using axial coding methods and probing these topics for underlying relationship and communication issues yielded 5 themes. The discussion highlights the implications of the findings for the theories that guided this investigation and for breast cancer survivorship more generally.

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.

Exploring Positive Survivorship Experiences of Indigenous Australian Cancer Patients

PubMed Central

Tam, Laura; Garvey, Gail; Meiklejohn, Judith; Martin, Jennifer; Adams, Jon; Walpole, Euan; Fay, Michael; Valery, Patricia

2018-01-01

Amongst Indigenous Australians, “cancer” has negative connotations that detrimentally impact upon access to cancer care services. Barriers to accessing cancer services amongst Indigenous Australians are widely reported. In contrast, factors that facilitate this cohort to successfully navigate cancer care services (“enablers”) are scarcely reported in the literature. Through qualitative interviews, this article examines factors that assist Indigenous Australians to have positive cancer experiences. Semi-structured interviews were conducted with twelve adult Indigenous oncology patients recruited from a tertiary hospital in Queensland, Australia during 2012–2014. Data generated from the interviews were independently reviewed by two researchers via inductive thematic analytical processes. Discussions followed by consensus on the major categories allowed conclusions to be drawn on potential enablers. Two major categories of enablers were identified by the researchers: resilience and communication. Individual’s intrinsic strength, their coping strategies, and receipt of support improved participant’s resilience and consequently supported a positive experience. Communication methods and an effective patient-provider relationship facilitated positive experiences for participants. Despite potential barriers to access of care for Indigenous cancer patients, participants in the study demonstrated that it was still possible to focus on the positive aspects of their cancer experiences. Many participants explained how cancer changed their outlook on life, often for the better, with many feeling empowered as they progressed through their cancer diagnosis and treatment processes. PMID:29342934

A breast cancer clinical registry in an Italian comprehensive cancer center: an instrument for descriptive, clinical, and experimental research.

PubMed

Baili, Paolo; Torresani, Michele; Agresti, Roberto; Rosito, Giuseppe; Daidone, Maria Grazia; Veneroni, Silvia; Cavallo, Ilaria; Funaro, Francesco; Giunco, Marco; Turco, Alberto; Amash, Hade; Scavo, Antonio; Minicozzi, Pamela; Bella, Francesca; Meneghini, Elisabetta; Sant, Milena

2015-01-01

In clinical research, many potentially useful variables are available via the routine activity of cancer center-based clinical registries (CCCR). We present the experience of the breast cancer clinical registry at Fondazione IRCCS "Istituto Nazionale dei Tumori" to give an example of how a CCCR can be planned, implemented, and used. Five criteria were taken into consideration while planning our CCCR: (a) available clinical and administrative databases ought to be exploited to the maximum extent; (b) open source software should be used; (c) a Web-based interface must be designed; (d) CCCR data must be compatible with population-based cancer registry data; (e) CCCR must be an open system, able to be connected with other data repositories. The amount of work needed for the implementation of a CCCR is inversely linked with the amount of available coded data: the fewer data are available in the input databases as coded variables, the more work will be necessary, for information technology staff, text mining analysis, and registrars (for collecting data from clinical records). A cancer registry in a comprehensive cancer center can be used for several research aspects, such as estimate of the number of cases needed for clinical studies, assessment of biobank specimens with specific characteristics, evaluation of clinical practice and adhesion to clinical guidelines, comparative studies between clinical and population sets of patients, studies on cancer prognosis, and studies on cancer survivorship.

Growth rate and survivorship of drought: CO2 effects on the presumed tradeoff in seedlings of five woody legumes.

PubMed

Polley, H Wayne; Tischler, Charles R; Johnson, Hyrum B; Derner, Justin D

2002-04-01

Traits that promote rapid growth and seedling recruitment when water is plentiful may become a liability when seedlings encounter drought. We tested the hypothesis that CO2 enrichment reinforces any tradeoff between growth rate and drought tolerance by exaggerating interspecific differences in maximum relative growth rate (RGR) and survivorship of drought among seedlings of five woody legumes. We studied invasive species of grasslands that differ in distribution along a rainfall gradient. Survivorship of drought at ambient CO2 concentration ([CO2]) was negatively related to RGR in well-watered seedlings in one of two experiments, but the relationship was weak because interspecific differences in RGR were small. Contrary to our hypothesis, there was no significant relationship among well-watered seedlings between RGR at ambient [CO2] and either the relative or absolute increase in RGR at elevated [CO2]. As predicted, however, CO2 enrichment reinforced interspecific differences in survivorship of seedlings exposed to similar rates of soil water depletion. Doubling [CO2] improved seedling survivorship of the most drought-tolerant species throughout the period of soil water depletion, but did not consistently affect survivorship of more drought-sensitive species. Midday xylem pressure potentials of drought-treated seedlings were less negative at elevated [CO2] than at ambient [CO2], but no other measured trait was consistently correlated with improved survivorship at high [CO2]. Carbon dioxide enrichment may not reinforce species differences in RGR, but could exaggerate interspecific differences in drought tolerance. To the extent that seedling persistence in grasslands correlates with drought survivorship, our results indicate a positive effect of CO2 enrichment on recruitment of woody legumes that are currently tolerant of drought.

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.

From stage to age in variable environments: life expectancy and survivorship.

PubMed

Tuljapurkar, Shripad; Horvitz, Carol C

2006-06-01

Stage-based demographic data are now available on many species of plants and some animals, and they often display temporal and spatial variability. We provide exact formulas to compute age-specific life expectancy and survivorship from stage-based data for three models of temporal variability: cycles, serially independent random variation, and a Markov chain. These models provide a comprehensive description of patterns of temporal variation. Our formulas describe the effects of cohort (birth) environmental condition on mortality at all ages, and of the effects on survivorship of environmental variability experienced over the course of life. This paper complements existing methods for time-invariant stage-based data, and adds to the information on population growth and dynamics available from stochastic demography.

Development and evaluation of a web-based breast cancer cultural competency course for primary healthcare providers.

PubMed

Palmer, Richard C; Samson, Raquel; Triantis, Maria; Mullan, Irene D

2011-08-15

To develop and evaluate a continuing medical education (CME) course aimed at improving healthcare provider knowledge about breast cancer health disparities and the importance of cross-cultural communication in provider-patient interactions about breast cancer screening. An interactive web-based CME course was developed and contained information about breast cancer disparities, the role of culture in healthcare decision making, and demonstrated a model of cross-cultural communication. A single group pre-/post-test design was used to assess knowledge changes. Data on user satisfaction was also collected. In all, 132 participants registered for the CME with 103 completing both assessments. Differences between pre-/post-test show a significant increase in knowledge (70% vs. 94%; p < .001). Ninety-five percent of participants agreed that the web based training was an appropriate tool to train healthcare providers about cultural competency and health disparities. There was an overall high level of satisfaction among all users. Users felt that learning objectives were met and the web-based format was appropriate and easy to use and suggests that web-based CME formats are an appropriate tool to teach cultural competency skills. However, more information is needed to understand how the CME impacted practice behaviors.

The Women's Health Initiative (WHI) Life and Longevity After Cancer (LILAC) Study: Description and Baseline Characteristics of Participants.

PubMed

Paskett, Electra D; Caan, Bette J; Johnson, Lisa; Bernardo, Brittany M; Young, Gregory S; Pennell, Michael L; Ray, Roberta M; Kroenke, Candyce H; Porter, Peggy L; Anderson, Garnet L

2018-02-01

Background: The Women's Health Initiative (WHI) Life and Longevity After Cancer (LILAC) study offers an important opportunity to advance cancer research by extending the original WHI studies to examine survivorship in women diagnosed with cancer during their participation in WHI. Methods: The goals of LILAC are to (i) obtain cancer treatment information and long-term cancer outcomes for women diagnosed with one of eight selected cancers (breast, endometrial, ovarian, lung, and colorectal cancers, and melanoma, lymphoma, and leukemia); (ii) augment the existing WHI biorepository with fixed tumor tissue from the solid tumor sites for cancers diagnosed since 2002; and (iii) develop, refine, and validate methods to use administrative data to capture treatment and recurrence data. Methods for accomplishing these goals are described, as are results from the initial LILAC participant survey. Results: A total of 9,934 WHI participants living with cancer were eligible for LILAC participation, of which 78% ( N = 7,760) agreed to participate. Among the three most prevalent cancer types, 54% are breast cancer survivors, 11% are melanoma survivors, and 10% are survivors of colorectal cancer. Conclusions: In addition to describing this resource, we present pertinent lessons that may assist other investigators interested in embedding survivorship research into existing large epidemiologic cohorts. Impact: The LILAC resource offers a valuable opportunity for researchers to study cancer survivorship and issues pertinent to cancer survivors in future studies. Cancer Epidemiol Biomarkers Prev; 27(2); 125-37. ©2017 AACR . ©2017 American Association for Cancer Research.

Psychotropic and Opioid Medication Use in Older Patients With Breast Cancer Across the Care Trajectory: A Population-Based Cohort Study.

PubMed

Syrowatka, Ania; Chang, Sue-Ling; Tamblyn, Robyn; Mayo, Nancy E; Meguerditchian, Ari N

2016-11-01

Older patients with breast cancer represent a vulnerable population at higher risk of experiencing distress and pain, as well as medication-related adverse events from pharmacological treatment of these symptoms. The purpose of this study is to estimate the prevalence of psychotropic (anxiolytic, antidepressant, and antipsychotic) and opioid medication use by older women diagnosed with breast cancer. This population-based cohort study followed 19,353 women older than 65 years diagnosed with incident, nonmetastatic breast cancer in Quebec, Canada. Data were obtained from provincial, universal health and drug insurance plans covering all medical and pharmaceutical care. Descriptive statistics were calculated for demographic information, breast cancer characteristics, and treatments. Psychotropic and opioid medication use was assessed across the care trajectory: precancer baseline, active care, and first-year survivorship. There was a marked increase in the prevalence of medication use from precancer baseline to active care, followed by a decrease into first-year survivorship. Anxiolytics were used most often across the care trajectory (36.3%, 50.6%, and 44.4% at baseline, active care, and survivorship, respectively). In contrast, antipsychotic and opioid medications were sought primarily during active care (4.5- and 7-fold increases from baseline, respectively), with opioid use during active care increasing dramatically over the study period (9.0% to 40.9% from 1998 to 2010). Unlike other drugs, antidepressant use peaked in active care but persisted into survivorship (14.7%, 22.4%, and 22.3% at baseline, active care, and survivorship, respectively). A substantial proportion of older patients with breast cancer use psychotropic and opioid medications. The different patterns of medication use represent distress and pain experienced by patients across the care trajectory. Given that medication use in this vulnerable population is associated with an increased risk of

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

Skin Cancer Surveillance Behaviors Among Childhood Cancer Survivors.

PubMed

Stapleton, Jerod L; Tatum, Kristina L; Devine, Katie A; Stephens, Sue; Masterson, Margaret; Baig, Amna; Hudson, Shawna V; Coups, Elliot J

2016-03-01

The risk of developing skin cancer is elevated among childhood cancer survivors (CCS), particularly among those treated with radiation. This survey study examined the skin cancer surveillance behaviors of 94 CCS. Approximately 48% of CCS had ever conducted skin self-examination (SSE) and 31% had ever received a physician skin examination. Rates of physician skin examination were 2.5 times higher among CCS treated with radiation compared to those without radiation. However, rates of SSEs did not differ based on treatment history. These findings highlight the need to promote skin cancer surveillance as an important aspect of CCS survivorship care. © 2015 Wiley Periodicals, Inc.

Predictive 5-Year Survivorship Model of Cystic Fibrosis

PubMed Central

Liou, Theodore G.; Adler, Frederick R.; FitzSimmons, Stacey C.; Cahill, Barbara C.; Hibbs, Jonathan R.; Marshall, Bruce C.

2007-01-01

The objective of this study was to create a 5-year survivorship model to identify key clinical features of cystic fibrosis. Such a model could help researchers and clinicians to evaluate therapies, improve the design of prospective studies, monitor practice patterns, counsel individual patients, and determine the best candidates for lung transplantation. The authors used information from the Cystic Fibrosis Foundation Patient Registry (CFFPR), which has collected longitudinal data on approximately 90% of cystic fibrosis patients diagnosed in the United States since 1986. They developed multivariate logistic regression models by using data on 5,820 patients randomly selected from 11,630 in the CFFPR in 1993. Models were tested for goodness of fit and were validated for the remaining 5,810 patients for 1993. The validated 5-year survivorship model included age, forced expiratory volume in 1 second as a percentage of predicted normal, gender, weight-for-age z score, pancreatic sufficiency, diabetes mellitus, Staphylococcus aureus infection, Burkerholderia cepacia infection, and annual number of acute pulmonary exacerbations. The model provides insights into the complex nature of cystic fibrosis and supplies a rigorous tool for clinical practice and research. PMID:11207152

Validity of self-reported fertility-threatening cancer treatments in female young adult cancer survivors.

PubMed

Roberts, Samantha C; Knight, Amber; Whitcomb, Brian W; Gorman, Jessica R; Dietz, Andrew C; Irene Su, H

2017-08-01

Detailed cancer treatment information is important to fertility and pregnancy care of female young adult cancer survivors. Accuracy of self-report of treatments that impact fertility and pregnancy is unknown. This study assessed agreement between self-report and medical records on receipt of fertility-threatening treatments. A national cohort study of female young adult cancer survivors reported cancer treatments via Web-based questionnaires. Primary cancer treatment records were abstracted. Self-reported exposure to fertility-threatening therapies (alkylating chemotherapy, stem cell transplant, pelvic radiation, hysterectomy, and/or oophorectomy) was compared to medical records. Logistic regression models estimated odds ratios (OR) for characteristics associated with inaccurate self-report of fertility-threatening therapies. The study included 101 survivors (mean age 28.2, SD 6.3). Lymphoma (33%), breast cancer (26%), and gynecologic cancers (10%) were the most common cancers. Accuracy of self-report was 68% for alkylating chemotherapy and 92-97% for radiation, surgery, and transplant. Significant proportions of survivors who were treated with transplant (8/13, 62%), alkylating chemotherapy (18/43, 42%), pelvic radiation (4/13, 31%), or hysterectomy and/or oophorectomy (3/13, 23%) did not report undergoing these therapies. In adjusted analysis, age ≤ 25 at diagnosis (OR 3.4, 95% CI 1.3-8.7) and recurrence (OR 6.0, 95% CI 1.5-24.4) were related to inaccurate self-report. Female young adult cancer survivors have limited recall of fertility-threatening cancer treatment exposures. Reproductive health providers and researchers who need this information may require primary medical records or treatment summaries. Additional patient education regarding treatment-related reproductive risks is needed to facilitate patient engagement in survivorship. Obtaining a cancer treatment summary will help survivors communicate their prior treatment exposures to reproductive

Integrating cancer survivors' experiences into UK cancer registries: design and development of the ePOCS system (electronic Patient-reported Outcomes from Cancer Survivors)

PubMed Central

Ashley, L; Jones, H; Thomas, J; Forman, D; Newsham, A; Morris, E; Johnson, O; Velikova, G; Wright, P

2011-01-01

Background: Understanding the psychosocial challenges of cancer survivorship, and identifying which patients experience ongoing difficulties, is a key priority. The ePOCS (electronic patient-reported outcomes from cancer survivors) project aims to develop and evaluate a cost-efficient, UK-scalable electronic system for collecting patient-reported outcome measures (PROMs), at regular post-diagnostic timepoints, and linking these with clinical data in cancer registries. Methods: A multidisciplinary team developed the system using agile methods. Design entailed process mapping the system's constituent parts, data flows and involved human activities, and undertaking usability testing. Informatics specialists built new technical components, including a web-based questionnaire tool and tracking database, and established component-connecting data flows. Development challenges were overcome, including patient usability and data linkage and security. Results: We have developed a system in which PROMs are completed online, using a secure questionnaire administration tool, accessed via a public-facing website, and the responses are linked and stored with clinical registry data. Patient monitoring and communications are semiautomated via a tracker database, and patient correspondence is primarily Email-based. The system is currently honed for clinician-led hospital-based patient recruitment. Conclusions: A feasibility test study is underway. Although there are possible challenges to sustaining and scaling up ePOCS, the system has potential to support UK epidemiological PROMs collection and clinical data linkage. PMID:22048035

dbCPG: A web resource for cancer predisposition genes.

PubMed

Wei, Ran; Yao, Yao; Yang, Wu; Zheng, Chun-Hou; Zhao, Min; Xia, Junfeng

2016-06-21

Cancer predisposition genes (CPGs) are genes in which inherited mutations confer highly or moderately increased risks of developing cancer. Identification of these genes and understanding the biological mechanisms that underlie them is crucial for the prevention, early diagnosis, and optimized management of cancer. Over the past decades, great efforts have been made to identify CPGs through multiple strategies. However, information on these CPGs and their molecular functions is scattered. To address this issue and provide a comprehensive resource for researchers, we developed the Cancer Predisposition Gene Database (dbCPG, Database URL: http://bioinfo.ahu.edu.cn:8080/dbCPG/index.jsp), the first literature-based gene resource for exploring human CPGs. It contains 827 human (724 protein-coding, 23 non-coding, and 80 unknown type genes), 637 rats, and 658 mouse CPGs. Furthermore, data mining was performed to gain insights into the understanding of the CPGs data, including functional annotation, gene prioritization, network analysis of prioritized genes and overlap analysis across multiple cancer types. A user-friendly web interface with multiple browse, search, and upload functions was also developed to facilitate access to the latest information on CPGs. Taken together, the dbCPG database provides a comprehensive data resource for further studies of cancer predisposition genes.

dbCPG: A web resource for cancer predisposition genes

PubMed Central

Wei, Ran; Yao, Yao; Yang, Wu; Zheng, Chun-Hou; Zhao, Min; Xia, Junfeng

2016-01-01

Cancer predisposition genes (CPGs) are genes in which inherited mutations confer highly or moderately increased risks of developing cancer. Identification of these genes and understanding the biological mechanisms that underlie them is crucial for the prevention, early diagnosis, and optimized management of cancer. Over the past decades, great efforts have been made to identify CPGs through multiple strategies. However, information on these CPGs and their molecular functions is scattered. To address this issue and provide a comprehensive resource for researchers, we developed the Cancer Predisposition Gene Database (dbCPG, Database URL: http://bioinfo.ahu.edu.cn:8080/dbCPG/index.jsp), the first literature-based gene resource for exploring human CPGs. It contains 827 human (724 protein-coding, 23 non-coding, and 80 unknown type genes), 637 rats, and 658 mouse CPGs. Furthermore, data mining was performed to gain insights into the understanding of the CPGs data, including functional annotation, gene prioritization, network analysis of prioritized genes and overlap analysis across multiple cancer types. A user-friendly web interface with multiple browse, search, and upload functions was also developed to facilitate access to the latest information on CPGs. Taken together, the dbCPG database provides a comprehensive data resource for further studies of cancer predisposition genes. PMID:27192119

Web Conversations About Complementary and Alternative Medicines and Cancer: Content and Sentiment Analysis

PubMed Central

Truccolo, Ivana; Antonini, Marialuisa; Rinaldi, Fabio; Omero, Paolo; Ferrarin, Emanuela; De Paoli, Paolo; Tasso, Carlo

2016-01-01

Background The use of complementary and alternative medicine (CAM) among cancer patients is widespread and mostly self-administrated. Today, one of the most relevant topics is the nondisclosure of CAM use to doctors. This general lack of communication exposes patients to dangerous behaviors and to less reliable information channels, such as the Web. The Italian context scarcely differs from this trend. Today, we are able to mine and analyze systematically the unstructured information available in the Web, to get an insight of people’s opinions, beliefs, and rumors concerning health topics. Objective Our aim was to analyze Italian Web conversations about CAM, identifying the most relevant Web sources, therapies, and diseases and measure the related sentiment. Methods Data have been collected using the Web Intelligence tool ifMONITOR. The workflow consisted of 6 phases: (1) eligibility criteria definition for the ifMONITOR search profile; (2) creation of a CAM terminology database; (3) generic Web search and automatic filtering, the results have been manually revised to refine the search profile, and stored in the ifMONITOR database; (4) automatic classification using the CAM database terms; (5) selection of the final sample and manual sentiment analysis using a 1-5 score range; (6) manual indexing of the Web sources and CAM therapies type retrieved. Descriptive univariate statistics were computed for each item: absolute frequency, percentage, central tendency (mean sentiment score [MSS]), and variability (standard variation σ). Results Overall, 212 Web sources, 423 Web documents, and 868 opinions have been retrieved. The overall sentiment measured tends to a good score (3.6 of 5). Quite a high polarization in the opinions of the conversation partaking emerged from standard variation analysis (σ≥1). In total, 126 of 212 (59.4%) Web sources retrieved were nonhealth-related. Facebook (89; 21%) and Yahoo Answers (41; 9.7%) were the most relevant. In total, 94 CAM

Web Conversations About Complementary and Alternative Medicines and Cancer: Content and Sentiment Analysis.

PubMed

Mazzocut, Mauro; Truccolo, Ivana; Antonini, Marialuisa; Rinaldi, Fabio; Omero, Paolo; Ferrarin, Emanuela; De Paoli, Paolo; Tasso, Carlo

2016-06-16

The use of complementary and alternative medicine (CAM) among cancer patients is widespread and mostly self-administrated. Today, one of the most relevant topics is the nondisclosure of CAM use to doctors. This general lack of communication exposes patients to dangerous behaviors and to less reliable information channels, such as the Web. The Italian context scarcely differs from this trend. Today, we are able to mine and analyze systematically the unstructured information available in the Web, to get an insight of people's opinions, beliefs, and rumors concerning health topics. Our aim was to analyze Italian Web conversations about CAM, identifying the most relevant Web sources, therapies, and diseases and measure the related sentiment. Data have been collected using the Web Intelligence tool ifMONITOR. The workflow consisted of 6 phases: (1) eligibility criteria definition for the ifMONITOR search profile; (2) creation of a CAM terminology database; (3) generic Web search and automatic filtering, the results have been manually revised to refine the search profile, and stored in the ifMONITOR database; (4) automatic classification using the CAM database terms; (5) selection of the final sample and manual sentiment analysis using a 1-5 score range; (6) manual indexing of the Web sources and CAM therapies type retrieved. Descriptive univariate statistics were computed for each item: absolute frequency, percentage, central tendency (mean sentiment score [MSS]), and variability (standard variation σ). Overall, 212 Web sources, 423 Web documents, and 868 opinions have been retrieved. The overall sentiment measured tends to a good score (3.6 of 5). Quite a high polarization in the opinions of the conversation partaking emerged from standard variation analysis (σ≥1). In total, 126 of 212 (59.4%) Web sources retrieved were nonhealth-related. Facebook (89; 21%) and Yahoo Answers (41; 9.7%) were the most relevant. In total, 94 CAM therapies have been retrieved. Most

Metal-on-metal hip resurfacing in patients younger than 50 years: a retrospective analysis : 1285 cases, 12-year survivorship.

PubMed

Gaillard, Melissa D; Gross, Thomas P

2017-06-02

The Nordic registry reports patients under 50 years old with total hip replacements realize only 83% 10-year implant survivorship. These results do not meet the 95% 10-year survivorship guideline posed by the UK's National Institute for Health and Care Excellence (NICE) in 2014. The purpose of this study is threefold: First, we evaluate if metal-on-metal hip resurfacing arthroplasty meets these high standards in younger patients. Next, we compare outcomes between age groups to determine if younger patients are at higher risk for revision or complication. Lastly, we assess how outcomes between sexes changed over time. From January 2001 to August 2013, a single surgeon performed 1285 metal-on-metal hip resurfacings in patients younger than 50 years old. We compared these to an older cohort matched by sex and BMI. Kaplan-Meier implant survivorship was 96.5% at 10 years and 96.3% at 12 years; this did not differ from implant survivorship for older patients. Implant survivorship at 12 years was 98 and 93% for younger men and women, respectively; survivorship for women improved from 93 to 97% by using exclusively Biomet implants. There were four (0.3%) adverse wear-related failures, with no instances of wear or problematic ion levels since 2009. Activity scores improved from 5.4 ± 2.3 preoperatively to 7.6 ± 1.9 postoperatively (p < 0.0001), with 43% of patients reporting a UCLA activity score of 9 or 10. Hip resurfacing exceeds the stricter 2014 NICE survivorship criteria independently in men and women even when performed on patients under 50 years old.

Periacetabular Osteotomy Provides Higher Survivorship Than Rim Trimming for Acetabular Retroversion.

PubMed

Zurmühle, Corinne A; Anwander, Helen; Albers, Christoph E; Hanke, Markus S; Steppacher, Simon D; Siebenrock, Klaus A; Tannast, Moritz

2017-04-01

Acetabular retroversion can cause impaction-type femoroacetabular impingement leading to hip pain and osteoarthritis. It can be treated by anteverting periacetabular osteotomy (PAO) or acetabular rim trimming with refixation of the labrum. There is increasing evidence that acetabular retroversion is a rotational abnormality of the entire hemipelvis and not a focal overgrowth of the anterior acetabular wall, which favors an anteverting PAO. However, it is unknown if this larger procedure would be beneficial in terms of survivorship and Merle d'Aubigné scores in a midterm followup compared with rim trimming. We asked if anteverting PAO results in increased survivorship of the hip compared with rim trimming through a surgical hip dislocation in patients with symptomatic acetabular retroversion. We performed a retrospective, comparative study evaluating the midterm survivorship of two matched patient groups with symptomatic acetabular retroversion undergoing either anteverting PAO or acetabular rim trimming through a surgical hip dislocation. Acetabular retroversion was defined by a concomitantly present positive crossover, posterior wall, and ischial spine sign. A total of 279 hips underwent a surgical intervention for acetabular retroversion at our center between 1997 and 2012 (166 periacetabular osteotomies, 113 rim trimmings through surgical hip dislocation). A total of 99 patients (60%) were excluded from the PAO group and 56 patients (50%) from the rim trimming group because they had any of several prespecified conditions (eg, dysplasia or pediatric conditions 61 [37%] for the PAO group and two [2%] for the rim trimming group), matching (10 [6%]/10 [9%] hips), deficient records (10 [6%]/13 [12%] hips), or the patient declined or was lost to followup (18 [11%]/31 [27%] hips). This left 67 hips (57 patients) that underwent anteverting PAO and 57 hips (52 patients) that had acetabular rim trimming. The two groups did not differ in terms of age, sex, body mass

Sex-biased survivorship and differences in migration of wild steelhead (Oncorhynchus mykiss) smolts from two coastal Oregon rivers

USGS Publications Warehouse

Thompson, Neil F.; Leblanc, Camille A.; Romer, Jeremy D.; Schreck, Carl B.; Blouin, Michael S.; Noakes, David L. G.

2016-01-01

In salmonids with partial migration, females are more likely than males to undergo smoltification and migrate to the ocean (vs. maturing in freshwater). However, it is not known whether sex affects survivorship during smolt migration (from fresh water to entry into the ocean). We captured wild steelhead (Oncorhynchus mykiss) smolts in two coastal Oregon rivers (USA) and collected fin tissue samples for genetic sex determination (2009; N = 70 in the Alsea and N = 69 in the Nehalem, 2010; N = 25 in the Alsea). We implanted acoustic tags and monitored downstream migration and survival until entry in to the Pacific Ocean. Survival was defined as detection at an estuary/ocean transition array. We found no effect of sex on smolt survivorship in the Nehalem River in 2009, or in the Alsea River in 2010. However, males exhibited significantly lower survival than females in the Alsea River during 2009. Residency did not influence this result as an equal proportion of males and females did not reach the estuary entrance (11% of males, 9% of females). The sexes did not differ in timing or duration of migration, so those variables seem unlikely to explain sex-biased survivorship. Larger males had higher odds of survival than smaller males in 2009, but the body size of females did not affect survivorship. The difference in survivorship between years in the Alsea River could be due to flow conditions, which were higher in 2010 than in 2009. Our findings suggest that sex may affect steelhead smolt survival during migration, but that the difference in survivorship may be weak and not a strong factor influencing adult sex ratios.

Cancer experiences and health-related quality of life among racial and ethnic minority survivors of young adult cancer: a mixed methods study.

PubMed

Munoz, Alexis R; Kaiser, Karen; Yanez, Betina; Victorson, David; Garcia, Sofia F; Snyder, Mallory A; Salsman, John M

2016-12-01

Young adult (YA) racial and ethnic minority survivors of cancer (diagnosed ages 18-39) experience significant disparities in health outcomes and survivorship compared to non-minorities of the same age. However, little is known about the survivorship experiences of this population. The purpose of this study is to explore the cancer experiences and health-related quality of life (HRQOL) among YA racial/ethnic minorities in an urban US city. Racial and ethnic minority YA cancer survivors (0 to 5 years posttreatment) were recruited from a comprehensive cancer center using a purposive sampling approach. Participants (n = 31) completed semi-structured interviews, the FACT-G (physical, emotional, social well-being) and the FACIT-Sp (spiritual well-being). Mixed methods data were evaluated using thematic analysis and analysis of covariance (ANCOVA). The majority of survivors were women (65 %), single (52 %), and Hispanic (42 %). Across interviews, the most common themes were the following: "changes in perspective," "emotional impacts," "received support," and "no psychosocial changes." Other themes varied by racial/ethnic subgroups, including "treatment effects" (Hispanics), "behavior changes" (Blacks), and "appreciation for life" (Asians). ANCOVAs (controlling for gender and ECOG performance status scores) revealed that race/ethnicity had a significant main effect on emotional (P = 0.05), but not physical, social, or spiritual HRQOL (P > 0.05). Our findings suggest that minority YA cancer survivors report complex positive and negative experiences. In spite of poor health outcomes, survivors report experiencing growth and positive change due to cancer. Variations in experiences and HRQOL highlight the importance of assessing cultural background to tailor survivorship care among YA racial and ethnic minorities.

Assessment of family psychosocial functioning in survivors of pediatric cancer using the PAT2.0.

PubMed

Gilleland, Jordan; Reed-Knight, Bonney; Brand, Sarah; Griffin, Anya; Wasilewski-Masker, Karen; Meacham, Lillian; Mertens, Ann

2013-09-01

This study aimed to examine clinical validity and utility of a screening measure for familial psychosocial risk, the Psychosocial Assessment Tool 2.0 (PAT2.0), among pediatric cancer survivors participating in long-term survivorship care. Caregivers (N=79) completed the PAT2.0 during their child's survivorship appointment. Caregivers also reported on family engagement in outpatient mental health treatment. Medical records were reviewed for treatment history and oncology provider initiated psychology consults. The internal consistency of the PAT2.0 total score in this survivorship sample was strong. Psychology was consulted by the oncology provider to see 53% of participant families, and families seen by psychology had significantly higher PAT2.0 total scores than families without psychology consults. PAT2.0 total scores and corresponding subscales were higher for patients, parents, and siblings enrolled in outpatient mental health services since treatment completion. Results were consistent with psychosocial risk categories presented within the Pediatric Psychosocial Preventative Health Model. Fifty-one percent of families presenting for survivorship care scored in the "universal" category, 34% scored in the "targeted" category, and 15% scored in the "clinical" category. Data indicate that the overall proportions of families experiencing "universal", "targeted", and "clinical" levels of familial distress may be constant from the time of diagnosis into survivorship care. Overall, the PAT2.0 demonstrated strong psychometric properties among survivors of pediatric cancer and shows promise as a psychosocial screening measure to facilitate more effective family support in survivorship care. Copyright © 2013 John Wiley & Sons, Ltd.

Fear of Recurrence as a Predictor of Care Needs for Long-Term Breast Cancer Survivors.

PubMed

Fang, Su-Ying; Fetzer, Susan Jane; Lee, Kuo-Ting; Kuo, Yao-Lung

The improved survival rate for breast cancer has increased the number of women living with the diagnosis for more than 5 years. Limited studies have focused on the care needs for long-term healthy survivors of breast cancer. The aims of this study were to understand the care needs of long-term breast cancer survivors and identify related factors that influence these needs. A convenience sampling with a correlational study design was used. Women at least 20 years old, who were given a diagnosis of breast cancer at least 5 years, were recruited from 2 hospital clinics in southern Taiwan. A self-administered questionnaire measuring cancer survivors' unmet needs was administered after obtaining informed consent. Binary logistic regression was used to examine variables associated with unmet care needs. Of the 192 women participating, the highest unmet needs related to existential survivorship. The most frequently endorsed unmet need was for an ongoing case manager. Fear of recurrence was associated with 3 aspects including existential survivorship, comprehensive cancer, and quality-of-life unmet needs (odds ratio, 1.14-1.21). Even 5 years after the diagnosis and completion of therapy, women continue to report unmet needs. Evaluating women's fear of recurrence to identify high-risk women with unmet needs is critical to providing quality care. Developing appropriate survivorship care programs combined with managing concerns regarding recurrence by a nursing case manager is needed.

Provision of integrated psychosocial services for cancer survivors post-treatment

PubMed Central

Recklitis, Christopher J; Syrjala, Karen L

2018-01-01

Meeting the psychosocial needs of patients with cancer has been recognised as a priority within oncology care for several decades. Many approaches that address these needs have been developed and described; however, until recently much of this work had focused on patients during treatment and end-of-life care. With continued improvement in therapies, the population of cancer survivors who can expect to live for 5 or more years after cancer diagnosis has increased dramatically, as have associated concerns about how to meet their medical, psychosocial, and health behaviour needs after treatment. Guidelines and models for general survivorship care routinely address psychosocial needs, and similar guidelines for psychosocial care of patients with cancer are being extended to address the needs of survivors. In this Series paper, we summarise the existing recommendations for the provision of routine psychosocial care to survivors, as well as the challenges present in providing this care. We make specific recommendations for the integration of psychosocial services into survivorship care. PMID:28049576

Feasibility of Providing Web-Based Information to Breast Cancer Patients Prior to a Surgical Consult.

PubMed

Bruce, Jordan G; Tucholka, Jennifer L; Steffens, Nicole M; Mahoney, Jane E; Neuman, Heather B

2017-03-30

Patients facing decisions for breast cancer surgery commonly search the internet. Directing patients to high-quality websites prior to the surgeon consultation may be one way of supporting patients' informational needs. The objective was to test an approach for delivering web-based information to breast cancer patients. The implementation strategy was developed using the Replicating Effective Programs framework. Pilot testing measured the proportion that accepted the web-based information. A pre-consultation survey assessed whether the information was reviewed and the acceptability to stakeholders. Reasons for declining guided refinement to the implementation package. Eighty-two percent (309/377) accepted the web-based information. Of the 309 that accepted, 244 completed the pre-consultation survey. Participants were a median 59 years, white (98%), and highly educated (>50% with a college degree). Most patients who completed the questionnaire reported reviewing the website (85%), and nearly all found it helpful. Surgeons thought implementation increased visit efficiency (5/6) and would result in patients making more informed decisions (6/6). The most common reasons patients declined information were limited internet comfort or access (n = 36), emotional distress (n = 14), and preference to receive information directly from the surgeon (n = 7). Routine delivery of web-based information to breast cancer patients prior to the surgeon consultation is feasible. High stakeholder acceptability combined with the low implementation burden means that these findings have immediate relevance for improving care quality.

Improving couples' quality of life through a Web-based prostate cancer education intervention.

PubMed

Song, Lixin; Rini, Christine; Deal, Allison M; Nielsen, Matthew E; Chang, Hao; Kinneer, Patty; Teal, Randall; Johnson, David C; Dunn, Mary W; Mark, Barbara; Palmer, Mary H

2015-03-01

To evaluate the feasibility and acceptability of a newly developed web-based, couple-oriented intervention called Prostate Cancer Education and Resources for Couples (PERC). Quantitative, qualitative, mixed-methods approach. Oncology outpatient clinics at the University of North Carolina (UNC) Lineberger Comprehensive Cancer Center at UNC–Chapel Hill. 26 patients with localized prostate cancer (PCa) and their partners. Pre- and postpilot quantitative assessments and a postpilot qualitative interview were conducted. General and PCa-specific symptoms, quality of life, psychosocial factors, PERC’s ease of use, and web activities. Improvement was shown in some PCa-specific and general symptoms (small effect sizes for patients and small-to-medium effect sizes for partners), overall quality of life, and physical and social domains of quality of life for patients (small effect sizes). Web activity data indicated high PERC use. Qualitative and quantitative analyses indicated that participants found PERC easy to use and understand,as well as engaging, of high quality, and relevant. Overall, participants were satisfied with PERC and reported that PERC improved their knowledge about symptom management and communication as a couple. PERC was a feasible, acceptable method of reducing the side effects of PCa treatment–related symptoms and improving quality of life. PERC has the potential to reduce the negative impacts of symptoms and enhance quality of life for patients with localized PCa and their partners, particularly for those who live in rural areas and have limited access to post-treatment supportive care.

Bariatric surgery in cancer survivorship: does a history of cancer affect weight loss outcomes?

PubMed

Philip, Errol J; Torghabeh, Mehyar H; Strain, Gladys W

2015-01-01

Weight loss is recommended for obese cancer survivors who are at increased risk of recurrence and non-cancer-related mortality. It remains unknown if this vulnerable population benefits from bariatric surgery to the same extent as those without a history of cancer. A retrospective chart review of 1013 patients identified 29 bariatric surgery patients with a history of cancer who were then matched to patients without a history of cancer. At 1-year postsurgical follow-up, individuals with a history of cancer had lost less weight than those without a history of cancer (14.2 versus 14.8); however, this difference was not significant (P = .76). Cancer survivors appear to draw similar benefit from bariatric surgery as those without a history of cancer, although a larger study with greater statistical power to detect differences is needed to confirm these results. These preliminary results are encouraging in light of the increasing focus on weight loss among this population. Copyright © 2015 American Society for Bariatric Surgery. Published by Elsevier Inc. All rights reserved.

New Agents, Emerging Late Effects, and the Development of Precision Survivorship.

PubMed

Chow, Eric J; Antal, Zoltan; Constine, Louis S; Gardner, Rebecca; Wallace, W Hamish; Weil, Brent R; Yeh, Jennifer M; Fox, Elizabeth

2018-06-06

Incremental improvements in the treatment of children and adolescents with cancer have led to 5-year survival rates reaching nearly 85%. In the past decade, impressive progress has been made in understanding the biology of many pediatric cancers. With that understanding, multiple new agents have become available that offer the promise of more-effective and less-toxic treatment. These include agents that target various cell surface antigens and engage the adaptive immune system, as well as those that interfere with key signaling pathways involved in tumor development and growth. For local control, surgery and radiation techniques also have evolved, becoming less invasive or featuring new techniques and particles that more precisely target the tumor and limit the dose to normal tissue. Nevertheless, targeted agents, like conventional chemotherapy, radiotherapy, and surgery, may have off-target effects and deserve long-term follow-up of their safety and efficacy. These include injury to the endocrine, cardiovascular, and immunologic systems. New radiation and surgical techniques that theoretically reduce morbidity and improve long-term quality of life must also be validated with actual patient outcomes. Finally, with advances in genomics, information on host susceptibility to late effects is beginning to emerge. Such knowledge, coupled with improved metrics that better describe the spectrum of potential late effects across the entire lifespan, can lead to the development of decision models that project the potential long-term health outcomes associated with various treatment and follow-up strategies. These developments will help extend the current focus on precision medicine to precision survivorship, where clinicians, patients, and families will have a better grasp of the potential risks, benefits, and tradeoffs associated with the growing number of cancer treatment options.

Cancer in Europe: Death sentence or life sentence?

PubMed

Liu, Lifang; O'Donnell, Peter; Sullivan, Richard; Katalinic, Alexander; Moser, Lotte; de Boer, Angela; Meunier, Francoise

2016-09-01

With so many adults and children receiving successful treatment for their cancer, survivorship is now a 'new' and critical issue. It is increasingly recognised that the growing numbers of survivors face new challenges in their bid to return to 'normal' life. What is not yet so widely recognised is the need for a broad response to help them cope-with stigmatisation, misunderstanding, lifelong issues of confidence and social adaptation, and even access to employment and to financial services. As a further stage in its programme of attention to this aspect of cancer, the European Organisation for Research and Treatment of Cancer (EORTC) brought survivors, researchers, carers, authorities and policymakers together at a meeting in Brussels in March/April 2016, to learn at first hand about the posttreatment experience of cancer survivors. The meeting demonstrated that while research is well advanced in many of the medical consequences of survivorship, understanding is still lacking of many non-clinical, personal and administrative issues. The meeting raised the discussion of survivorship research beyond the individual to a population-based approach, exploring the related socioeconomic issues. Its exploration of initiatives across Europe countries provoked new thinking on the need for effective collaboration, with a new focus on non-clinical issues, including effective dialogue with financial service providers and employers, improvements in collecting, exchanging and accessing data, and above all, ways of translating research outcomes into action. This will require wider recognition that, as Françoise Meunier, Director Special Projects, EORTC, said, 'It is time for a new mind set'. Copyright © 2016 Elsevier Ltd. All rights reserved.

Experiences and Concerns of Lesbian, Gay, or Bisexual Survivors of Colorectal Cancer.

PubMed

Baughman, Allyson; Clark, Melissa A; Boehmer, Ulrike

2017-05-01

To identify the experiences and needs of lesbian, gay, or bisexual (LGB) survivors of colorectal cancer (CRC) and to expand the current understanding of LGB survivorship by obtaining in-depth knowledge of survivorship among individuals with a cancer other than breast or prostate. 
. Qualitative, semistructured individual interviews via telephone.
. Participants were recruited using social media, flyers, word of mouth, and contact with LGB and cancer organizations during a four-month period.
. Eight LGB individuals with a diagnosis of stage III CRC from 2009-2014. 
. All interviews were audio recorded and then transcribed verbatim. Thematic analysis performed by more than one analyst was used for the interview transcripts. 
. Participants described experiences with social support and isolation, cancer care from an LGB perspective, and substantial economic impacts of their cancer diagnosis. In addition, they reported struggles with health insurance coverage, employment, and housing during and after their treatment for CRC. 
. In addition to issues regarding sexual identity disclosure and social support, economic impacts of CRC exist; these are likely critical to healthy survivorship in LGB men and women. 
. Attention should be paid to the economic impact of CRC on LGB individuals, along with issues of social support and sexual identity disclosure. Oncology nurses could play an important role in determining the economic and social needs of patients with CRC, accepting the often nontraditional support networks of LGB individuals, and facilitating disclosure of an LGB identity.

Readability of Online Patient Educational Resources Found on NCI-Designated Cancer Center Web Sites.

PubMed

Rosenberg, Stephen A; Francis, David; Hullett, Craig R; Morris, Zachary S; Fisher, Michael M; Brower, Jeffrey V; Bradley, Kristin A; Anderson, Bethany M; Bassetti, Michael F; Kimple, Randall J

2016-06-01

The NIH and Department of Health & Human Services recommend online patient information (OPI) be written at a sixth grade level. We used a panel of readability analyses to assess OPI from NCI-Designated Cancer Center (NCIDCC) Web sites. Cancer.gov was used to identify 68 NCIDCC Web sites from which we collected both general OPI and OPI specific to breast, prostate, lung, and colon cancers. This text was analyzed by 10 commonly used readability tests: the New Dale-Chall Readability Formula, Flesch Reading Ease scale, Flesch-Kinaid Grade Level, FORCAST scale, Fry Readability Graph, Simple Measure of Gobbledygook test, Gunning Frequency of Gobbledygook index, New Fog Count, Raygor Readability Estimate Graph, and Coleman-Liau Index. We tested the hypothesis that the readability of NCIDCC OPI was written at the sixth grade level. Secondary analyses were performed to compare readability of OPI between comprehensive and noncomprehensive centers, by region, and to OPI produced by the American Cancer Society (ACS). A mean of 30,507 words from 40 comprehensive and 18 noncomprehensive NCIDCCs was analyzed (7 nonclinical and 3 without appropriate OPI were excluded). Using a composite grade level score, the mean readability score of 12.46 (ie, college level: 95% CI, 12.13-12.79) was significantly greater than the target grade level of 6 (middle-school: P<.001). No difference between comprehensive and noncomprehensive centers was identified. Regional differences were identified in 4 of the 10 readability metrics (P<.05). ACS OPI provides easier language, at the seventh to ninth grade level, across all tests (P<.01). OPI from NCIDCC Web sites is more complex than recommended for the average patient. Copyright © 2016 by the National Comprehensive Cancer Network.

A study protocol for a randomised controlled trial of an interactive web-based intervention: CancerCope.

PubMed

Chambers, Suzanne K; Ritterband, Lee; Thorndike, Frances; Nielsen, Lisa; Aitken, Joanne F; Clutton, Samantha; Scuffham, Paul; Youl, Philippa; Morris, Bronwyn; Baade, Peter; Dunn, Jeffrey

2017-06-23

Approximately 35% of patients with cancer experience clinically significant distress, and unmet psychological supportive care needs are prevalent. This study describes the protocol for a randomised controlled trial (RCT) to assess the efficacy and cost-effectiveness of an internet-based psychological intervention for distressed patients with cancer. In phase I, the intervention was developed on an interactive web platform and pilot tested for acceptability using a qualitative methodology with 21 patients with cancer. Phase II is an RCT underway with patients with or at risk of elevated psychological distress comparing: (1) static patient education website with (2) individualised web-delivered cognitive behavioural intervention (CancerCope). Participants were recruited through the Queensland Cancer Registry and Cancer Council Helpline and met the following inclusion criteria: (1) recently diagnosed with cancer; (2) able to read and speak English; (3) no previous history of head injury, dementia or psychiatric illness; (4) no other concurrent cancer; (5) phone and internet access; (5) scored ≥4 on the Distress Thermometer. Participants are assessed at four time points: baseline/recruitment and 2, 6 and 12 months after recruitment and intervention commencement. Of the 163 participants recruited, 50% met caseness for distress. The area of highest unmet supportive care needs were psychological followed by physical and daily living needs. Primary outcomes are psychological and cancer-specific distress and unmet psychological supportive care needs. Secondary outcomes are positive adjustment, quality of life and cost-effectiveness. Ethical approval was obtained from the Griffith University Human Research Ethics Committee (Approval: PSY/70/13/HREC) and the Metro South Human Research Ethics Committee (HREC/13/QPAH/601). All participants provide informed consent prior to taking part in the study. Once completed, this study will provide recommendations about the efficacy of

A study protocol for a randomised controlled trial of an interactive web-based intervention: CancerCope

PubMed Central

Chambers, Suzanne K; Ritterband, Lee; Thorndike, Frances; Nielsen, Lisa; Aitken, Joanne F; Clutton, Samantha; Scuffham, Paul; Youl, Philippa; Morris, Bronwyn; Baade, Peter; Dunn, Jeffrey

2017-01-01

Introduction Approximately 35% of patients with cancer experience clinically significant distress, and unmet psychological supportive care needs are prevalent. This study describes the protocol for a randomised controlled trial (RCT) to assess the efficacy and cost-effectiveness of an internet-based psychological intervention for distressed patients with cancer. Methods and analysis In phase I, the intervention was developed on an interactive web platform and pilot tested for acceptability using a qualitative methodology with 21 patients with cancer. Phase II is an RCT underway with patients with or at risk of elevated psychological distress comparing: (1) static patient education website with (2) individualised web-delivered cognitive behavioural intervention (CancerCope). Participants were recruited through the Queensland Cancer Registry and Cancer Council Helpline and met the following inclusion criteria: (1) recently diagnosed with cancer; (2) able to read and speak English; (3) no previous history of head injury, dementia or psychiatric illness; (4) no other concurrent cancer; (5) phone and internet access; (5) scored ≥4 on the Distress Thermometer. Participants are assessed at four time points: baseline/recruitment and 2, 6 and 12 months after recruitment and intervention commencement. Of the 163 participants recruited, 50% met caseness for distress. The area of highest unmet supportive care needs were psychological followed by physical and daily living needs. Primary outcomes are psychological and cancer-specific distress and unmet psychological supportive care needs. Secondary outcomes are positive adjustment, quality of life and cost-effectiveness. Ethics and dissemination Ethical approval was obtained from the Griffith University Human Research Ethics Committee (Approval: PSY/70/13/HREC) and the Metro South Human Research Ethics Committee (HREC/13/QPAH/601). All participants provide informed consent prior to taking part in the study. Once completed

A Tailored Web-Based Psycho-Educational Intervention for Cancer Patients and Their Family Caregivers

PubMed Central

Northouse, Laurel; Schafenacker, Ann; Barr, Kathryn L.C.; Katapodi, Maria; Yoon, Hyojin; Brittain, Kelly; Song, Lixin; Ronis, David L.; An, Larry

2014-01-01

Background Most programs addressing psychosocial concerns of cancer survivors are in-person programs that are expensive to deliver, have limited availability, and seldom deal with caregivers’ concerns. Objective This study examined the feasibility of translating an efficacious nurse-delivered program (FOCUS Program) for patients and their caregivers to a tailored, dyadic web-based format. Specific aims were to: (i) test the preliminary effects of the web-based intervention on patient and caregiver outcomes, (ii) examine participants’ program satisfaction, and (iii) determine the feasibility of using a web-based delivery format. Intervention/Methods A Phase II feasibility study was conducted with cancer patients (lung, breast, colorectal, prostate) and their family caregivers (N=38 dyads). The web-based intervention provided information and support tailored to the unique characteristics of each patient, caregiver, and their dyadic relationship. Primary outcomes were emotional distress and quality of life (QOL). Secondary outcomes were benefits of illness/caregiving, communication, support, and self-efficacy. Analyses included descriptive statistics and repeated measures ANOVA. Results Dyads had a significant decrease in emotional distress, increase in QOL, and perceived more benefits of illness/caregiving. Caregivers also had significant improvement in self-efficacy. There were no changes in communication. Participants were satisfied with program usability, but recommended additional content. Conclusions It was possible to translate a clinician-delivered program to a web-based format that was easy to use and had positive effects on dyadic outcomes. Implications for Practice The web-based program is a promising way to provide psychosocial care to more patients and caregivers using fewer personnel. It needs further testing in a larger RCT. PMID:24945270

NCCN Guidelines Insights: Colon Cancer, Version 2.2018.

PubMed

Benson, Al B; Venook, Alan P; Al-Hawary, Mahmoud M; Cederquist, Lynette; Chen, Yi-Jen; Ciombor, Kristen K; Cohen, Stacey; Cooper, Harry S; Deming, Dustin; Engstrom, Paul F; Garrido-Laguna, Ignacio; Grem, Jean L; Grothey, Axel; Hochster, Howard S; Hoffe, Sarah; Hunt, Steven; Kamel, Ahmed; Kirilcuk, Natalie; Krishnamurthi, Smitha; Messersmith, Wells A; Meyerhardt, Jeffrey; Miller, Eric D; Mulcahy, Mary F; Murphy, James D; Nurkin, Steven; Saltz, Leonard; Sharma, Sunil; Shibata, David; Skibber, John M; Sofocleous, Constantinos T; Stoffel, Elena M; Stotsky-Himelfarb, Eden; Willett, Christopher G; Wuthrick, Evan; Gregory, Kristina M; Freedman-Cass, Deborah A

2018-04-01

The NCCN Guidelines for Colon Cancer provide recommendations regarding diagnosis, pathologic staging, surgical management, perioperative treatment, surveillance, management of recurrent and metastatic disease, and survivorship. These NCCN Guidelines Insights summarize the NCCN Colon Cancer Panel discussions for the 2018 update of the guidelines regarding risk stratification and adjuvant treatment for patients with stage III colon cancer, and treatment of BRAF V600E mutation-positive metastatic colorectal cancer with regimens containing vemurafenib. Copyright © 2018 by the National Comprehensive Cancer Network.

Survivorship and complications of total hip arthroplasty in patients with dwarfism.

PubMed

Modi, Ronuk M; Kheir, Michael M; Tan, Timothy L; Penny, Gregory S; Chen, Chi-Lung; Shao, Hongyi; Chen, Antonia F

2017-09-19

Total hip arthroplasty (THA) is a common procedure used to treat bony hip deformities and skeletal dysplasia in dwarfism. These surgeries are often more difficult than conventional THA as they may involve malformed joints and poor bone quality, and may require smaller prostheses. This study aims to investigate whether implant survivorship and revision rates vary among patients with and without dwarfism undergoing THA. A retrospective case-control study was performed for 102 THAs completed between 1997 and 2014 in patients under the height threshold of 147.32 cm. This cohort was matched 1:1.5 with patients of normal height with respect to age, gender, year of surgery, and Charlson comorbidities. All cases had a minimum follow-up of 1 year. A chart review was performed to identify patient and surgical characteristics, including outcomes. Radiographs were assessed for deformity, loosening, and periprosthetic fractures among other factors. The 2-, 5-, and 10-year survivorship of THA in patients with dwarfism was 92.9%, 92.9%, and 80.7%, respectively; and 94.4%, 86.4%, and 86.4% for controls, respectively (p = 0.95). The dwarfism cohort demonstrated an OR of 3.81 and 3.02 for revision for periprosthetic fractures (p = 0.11) and mechanical wear (p = 0.21), respectively. THA in patients with dwarfism achieves comparable results to a non-dwarfism population with regards to implant survivorship; however, there is a trend toward increased periprosthetic fractures and wear-related failures. Surgeons should be aware of this potentially higher risk in this population and take morphological differences into account during surgical planning and technique.

Symptom Burden in Cancer Survivors One Year after Diagnosis: A Report from the American Cancer Society’s Studies of Cancer Survivors

PubMed Central

Shi, Qiuling; Smith, Tenbroeck G.; Michonski, Jared D.; Stein, Kevin D.; Kaw, Chiew Kwei; Cleeland, Charles S.

2011-01-01

Background Few studies have examined risk for severe symptoms during early cancer survivorship. Using baseline data from the American Cancer Society’s Study of Cancer Survivors-I, we examined cancer survivors with high symptom burden, identified risk factors associated with high symptom burden, and evaluated the impact of high symptom burden on health-related quality of life (HRQoL) 1 year post-diagnosis. Methods Participants were enrolled from 11 state cancer registries approximately 1 year after diagnosis and surveyed by telephone or mail. Outcomes measures were the Modified Rotterdam Symptom Checklist and Profile of Mood States-37 (to assess symptom burden) and the Satisfaction with Life Domains Scale-Cancer (to assess HRQoL). Results Of 4903 survivors, 4512 (92%) reported symptoms related to their cancer and/or its treatment. Two-step clustering yielded 2 sub-groups, one with low symptom burden (n=3113) and one with high symptom burden (n=1399). Variables associated with high symptom burden included metastatic cancer (odds ratio [OR], 2.05), number of comorbid conditions (OR, 1.76), remaining on active chemotherapy (OR, 1.93), younger age (OR, 2.31), lacking insurance/being underinsured (OR, 1.57), having lower income (OR, 1.61), being unemployed (OR, 1.27), or being less educated (OR, 1.29). Depression, fatigue, and pain had the greatest impact on HRQoL in survivors with high symptom burden, who also had lower HRQoL (P < .0001). Conclusions More than 1 in 4 cancer survivors had high symptom burden 1 year post-diagnosis, even after treatment termination. These results indicate a need for continued symptom monitoring and management in early posttreatment survivorship, especially for the underserved. PMID:21495026

Web-based cognitive rehabilitation for survivors of adult cancer: A randomised controlled trial.

PubMed

Mihuta, Mary E; Green, Heather J; Shum, David H K

2018-04-01

Cognitive dysfunction associated with cancer is frequently reported and can reduce quality of life. This study evaluated a Web-based cognitive rehabilitation therapy program (eReCog) in cancer survivors compared with a waitlist control group. Adult cancer survivors with self-reported cognitive symptoms who had completed primary treatment at least 6 months prior were recruited. Participants completed telephone screening and were randomly allocated to the 4-week online intervention or waitlist. Primary outcome was perceived cognitive impairment assessed with the Functional Assessment of Cancer Therapy-Cognitive Function version 3. Secondary outcomes were additional measures of subjective cognitive functioning, objective cognitive functioning, and psychosocial variables. Seventy-six women were allocated to the intervention (n = 40) or waitlist (n = 36). A significant interaction was found on the instrumental activities of daily living measure of self-reported prospective memory whereby the intervention group reported a greater reduction in prospective memory failures than the waitlist group. Interaction trends were noted on perceived cognitive impairments (P = .089) and executive functioning (P = .074). No significant interactions were observed on other measures of objective cognitive functioning or psychosocial variables. The Web-based intervention shows promise for improving self-reported cognitive functioning in adult cancer survivors. Further research is warranted to better understand the mechanisms by which the intervention might contribute to improved self-reported cognition. Copyright © 2017 John Wiley & Sons, Ltd.

Romantic and Sexual Relationships, Body Image, and Fertility in Adolescent and Young Adult Testicular Cancer Survivors: A Review of the Literature

PubMed Central

Carpentier, Melissa Y.; Fortenberry, J. Dennis

2010-01-01

This review presents a summary of existing knowledge regarding the impact of testicular cancer along four broad domains, including romantic and sexual relationships, body image, and fertility. A total of 37 studies were reviewed. Of note, most research consists of older adult testicular cancer survivors, with very little research attention afforded to adolescent and young adult (AYA) survivorship. Relationship status (i.e., partnered versus unpartnered) appears to play an important role as it relates to adjustment outcomes in testicular cancer survivors. In addition, sexual function (and thereby fertility) and body image are also frequently compromised. Implications regarding a lack of developmentally focused research on AYA testicular cancer survivorship are discussed, along with recommendations for new research. PMID:20638003

Pediatric oncology survivorship: conveying risks and communicating information at the right time for the individual.

PubMed

McCarthy, Maria C; Campo, Monica; Drew, Sarah E

2013-09-01

To summarize and discuss recent research (2011-2013) examining the communication needs of childhood cancer survivors with respect to long-term health risks and considering the developmental needs of children, adolescents and young adults. Survivors' levels of awareness of ongoing health risks are low, indicating that clinical strategies for communicating risks and empowering young people as active partners in their own healthcare are lacking. Research examining the information needs of very young survivors is sparse. Adolescent and young adults may be particularly vulnerable given their lack of health-risk knowledge combined with expected developmental risk-taking behaviors. Strategies to manage individual information preferences of survivors are required, along with strategies to manage the triadic (child, parent, health professional) nature of communications. Internet technologies offer an important mechanism for communication of health risks to survivors, families and primary healthcare providers. International efforts must continue to articulate systematic yet flexible approaches to communication with children, adolescents and young adults that can be applied across the cancer treatment continuum and into surveillance and long-term survivorship. Information and communication needs of this population are complex and reliance on age as a proxy for capacity to participate in healthcare communication is inadequate.

Bicruciate-retaining Total Knee Replacement Provides Satisfactory Function and Implant Survivorship at 23 Years.

PubMed

Pritchett, James W

2015-07-01

One of the goals of a TKA is to approximate the function of a normal knee. Preserving the natural ligaments might provide a method of restoring close to normal function. Sacrifice of the ACL is common and practical during a TKA. However, this ligament is functional in more than 60% of patients undergoing a TKA and kinematic studies support the concept of bicruciate-retaining (that is, ACL-preserving) TKA; however, relatively few studies have evaluated patients treated with bicruciate-retaining TKA implants. I asked: (1) what is the long-term (minimum 20-year) survivorship, (2) what are the functional results, and (3) what are the reasons for revision of bicruciate-retaining knee arthroplasty prostheses? From January 1989 to September 1992, I performed 639 total knee replacements in 537 patients. Of these, 489 were performed in 390 patients using a bicruciate-retaining, minimally constrained device. During the period in question, this knee prosthesis was used for all patients observed intraoperatively to have an intact, functional ACL with between 15° varus and 15° valgus joint deformity. There were 234 women and 156 men with a mean age at surgery of 65 years (range, 42-84 years) and a primary diagnosis of osteoarthritis in 89%. The patella was resurfaced in all knees. The mean followup was 23 years (range, 20-24 years). At the time of this review, 199 (51%) patients had died and 31 (8%) patients were lost to followup, leaving 160 (41%) patients (214 knees) available for review. Component survivorship was determined by competing-risks analysis and Kaplan Meier survivorship analysis with revision for any reason as the primary endpoint. Patients were evaluated every 2 years to assess ROM, joint laxity, knee stability, and to determine American Knee Society scores. The Kaplan-Meier survivorship was 89% (95% CI, 82%-93%) at 23 years with revision for any reason as the endpoint. Competing-risks survivorship was 94% (95% CI, 91%%-96 %) at 23 years. At followup, the mean

Connecting the Dots: Linking the National Program of Cancer Registries and the Needs of Survivors and Clinicians.

PubMed

Ryerson, A Blythe; Eheman, Christie; Styles, Timothy; Rycroft, Randi; Snyder, Claire

2015-12-01

Cancer survivors, the medical community, public health professionals, researchers, and policymakers all need information about newly diagnosed cancer cases and deaths to better understand and address the disease burden. CDC collects cancer data on 96% of the U.S. population through the National Program of Cancer Registries. The National Program of Cancer Registries routinely collects data on all cancer occurrences, deaths, and the types of initial treatment received by the patients, and recently CDC has made advances in its cancer surveillance activities that have direct applicability to cancer survivorship research and care. This article examines CDC's innovative uses of the National Program of Cancer Registries infrastructure and data as a recruitment source for survivorship research studies and behavioral interventions; comparative effectiveness and patient-centered outcomes research; and the collection, consolidation, and dissemination of treatment summaries for cancer survivors and their providers. This paper also discusses long-term, idealistic plans for additional data linkages and sharing among public health, providers, and the cancer survivor through innovative concepts such as patient portals and rapid-learning health care. Published by Elsevier Inc.

Health Literacy: Cancer Prevention Strategies for Early Adults.

PubMed

Simmons, Robert A; Cosgrove, Susan C; Romney, Martha C; Plumb, James D; Brawer, Rickie O; Gonzalez, Evelyn T; Fleisher, Linda G; Moore, Bradley S

2017-09-01

Health literacy, the degree to which individuals have the capacity to obtain, process, and understand health information and services needed to make health decisions, is an essential element for early adults (aged 18-44 years) to make informed decisions about cancer. Low health literacy is one of the social determinants of health associated with cancer-related disparities. Over the past several years, a nonprofit organization, a university, and a cancer center in a major urban environment have developed and implemented health literacy programs within healthcare systems and in the community. Health system personnel received extensive health literacy training to reduce medical jargon and improve their patient education using plain language easy-to-understand written materials and teach-back, and also designed plain language written materials including visuals to provide more culturally and linguistically appropriate health education and enhance web-based information. Several sustainable health system policy changes occurred over time. At the community level, organizational assessments and peer leader training on health literacy have occurred to reduce communication barriers between consumers and providers. Some of these programs have been cancer specific, including consumer education in such areas as cervical cancer, skin cancer, and breast cancer that are targeted to early adults across the cancer spectrum from prevention to treatment to survivorship. An example of consumer-driven health education that was tested for health literacy using a comic book-style photonovel on breast cancer with an intergenerational family approach for Chinese Americans is provided. Key lessons learned from the health literacy initiatives and overall conclusions of the health literacy initiatives are also summarized. Copyright © 2017 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.

Identifying unproven cancer treatments on the health web: addressing accuracy, generalizability and scalability.

PubMed

Aphinyanaphongs, Yin; Fu, Lawrence D; Aliferis, Constantin F

2013-01-01

Building machine learning models that identify unproven cancer treatments on the Health Web is a promising approach for dealing with the dissemination of false and dangerous information to vulnerable health consumers. Aside from the obvious requirement of accuracy, two issues are of practical importance in deploying these models in real world applications. (a) Generalizability: The models must generalize to all treatments (not just the ones used in the training of the models). (b) Scalability: The models can be applied efficiently to billions of documents on the Health Web. First, we provide methods and related empirical data demonstrating strong accuracy and generalizability. Second, by combining the MapReduce distributed architecture and high dimensionality compression via Markov Boundary feature selection, we show how to scale the application of the models to WWW-scale corpora. The present work provides evidence that (a) a very small subset of unproven cancer treatments is sufficient to build a model to identify unproven treatments on the web; (b) unproven treatments use distinct language to market their claims and this language is learnable; (c) through distributed parallelization and state of the art feature selection, it is possible to prepare the corpora and build and apply models with large scalability.

Establishing a general medical outpatient clinic for cancer survivors in a public city hospital setting.

PubMed

Goytia, Elliott J; Lounsbury, David W; McCabe, Mary S; Weiss, Elisa; Newcomer, Meghan; Nelson, Deena J; Brennessel, Debra; Rapkin, Bruce D; Kemeny, M Margaret

2009-11-01

Many cancer centers and community hospitals are developing novel models of survivorship care. However, few are specifically focused on services for socio-economically disadvantaged cancer survivors. To describe a new model of survivorship care serving culturally diverse, urban adult cancer patients and to present findings from a feasibility evaluation. Adult cancer patients treated at a public city hospital cancer center. The clinic provides comprehensive medical and psychosocial services for patients within a public hospital cancer center where they receive their oncology care. Longitudinal data collected over a 3-year period were used to describe patient demographics, patient needs, and services delivered. Since inception, 410 cancer patients have been served. Demand for services has grown steadily. Hypertension was the most frequent comorbid condition treated. Pain, depression, cardiovascular disease, hyperlipidemia, and bowel dysfunction were the most common post-treatment problems experienced by the patients. Financial counseling was an important patient resource. This new clinical service has been well-integrated into its public urban hospital setting and constitutes an innovative model of health-care delivery for socio-economically challenged, culturally diverse adult cancer survivors.

Social media for breast cancer survivors: a literature review.

PubMed

Falisi, Angela L; Wiseman, Kara P; Gaysynsky, Anna; Scheideler, Jennifer K; Ramin, Daniel A; Chou, Wen-Ying Sylvia

2017-12-01

Social media may offer support to individuals who are navigating the complex and challenging experience of cancer. A growing body of literature has been published over the last decade exploring the ways cancer survivors utilize social media. This study aims to provide a systematic synthesis of the current literature in order to inform cancer health communication practice and cancer survivorship research. Using PRISMA guidelines, four electronic databases were searched to retrieve publications on breast cancer and social media published between 2005 and 2015. The final sample included 98 publications (13 commentaries and reviews, 47 descriptive studies, and 38 intervention studies). Intervention studies were assessed for key features and outcome measures. Studies utilizing content analysis were further evaluated qualitatively. Online support groups were the most commonly studied platform, followed by interactive message boards and web forums. Limited research focuses on non-Caucasian populations. Psychosocial well-being was the most commonly measured outcome of interest. While social media engagement was assessed, few standardized measures were identified. Content analyses of social media interactions were prevalent, though few articles linked content to health outcomes. The current literature highlights the impact and potential utility of social media for breast cancer survivors. Future studies should consider connecting social media engagement and content to psychosocial, behavioral, and physical health outcomes. Online groups and communities may improve the well-being of breast cancer survivors by providing opportunities to engage with wider social networks, connect with others navigating similar cancer experiences, and obtain cancer-related information. Researchers should consider the potential role of social media in addressing the unmet needs of breast cancer survivors, and particularly the implications for clinical and public health practice.

The National LGBT Cancer Action Plan: A White Paper of the 2014 National Summit on Cancer in the LGBT Communities

PubMed Central

Margolies, Liz; Sigurdsson, Hrafn Oli; Walland, Jonathan; Radix, Asa; Rice, David; Buchting, Francisco O.; Sanchez, Nelson F.; Bare, Michael G.; Boehmer, Ulrike; Cahill, Sean; Griebling, Tomas L.; Bruessow, Diane; Maingi, Shail

2016-01-01

Abstract Despite growing social acceptance of lesbians, gay men, bisexuals, and transgender (LGBT) persons and the extension of marriage rights for same-sex couples, LGBT persons experience stigma and discrimination, including within the healthcare system. Each population within the LGBT umbrella term is likely at elevated risk for cancer due to prevalent, significant cancer risk factors, such as tobacco use and human immunodeficiency virus infection; however, cancer incidence and mortality data among LGBT persons are lacking. This absence of cancer incidence data impedes research and policy development, LGBT communities' awareness and activation, and interventions to address cancer disparities. In this context, in 2014, a 2-day National Summit on Cancer in the LGBT Communities was convened by a planning committee for the purpose of accelerating progress in identifying and addressing the LGBT communities' concerns and needs in the spheres of cancer research, clinical cancer care, healthcare policy, and advocacy for cancer survivorship and LGBT health equity. Summit participants were 56 invited persons from the United States, United Kingdom, and Canada, representatives of diverse identities, experiences, and knowledge about LGBT communities and cancer. Participants shared lessons learned and identified gaps and remedies regarding LGBT cancer concerns across the cancer care continuum from prevention to survivorship. This white paper presents background on each of the Summit themes and 16 recommendations covering the following: sexual orientation and gender identity data collection in national and state health surveys and research on LGBT communities and cancer, the clinical care of LGBT persons, and the education and training of healthcare providers.

An Integrative Review of Psychosocial Concerns Among Young African American Breast Cancer Survivors.

PubMed

Nolan, Timiya S; Frank, Jennifer; Gisiger-Camata, Silvia; Meneses, Karen

African American (AA) women are more likely to be given a diagnosis of breast cancer at an early age, experience morbidity after treatment, and exhibit disparities in survivorship. Although psychosocial well-being is largely studied among breast cancer survivors, data are sparse regarding young AA survivors. This integrative review examined psychosocial concerns in survivorship among young AA survivors using a quality-of-life framework. PubMed, CINHAL, EMBASE, PsychINFO, and Scopus were searched for articles exploring psychosocial well-being in young AA survivors. The search yielded 237 articles that were retrieved and reviewed for relevance. Of these, 16 articles were selected based on inclusion/exclusion criteria. Data were evaluated and synthesized based on the quality-of-life model. Selected articles omitted the study of several psychological subconstructs and identified existing psychosocial concerns that require mitigation. The review revealed key areas of psychosocial concerns among young AA survivors including ongoing anxiety/depression, cognitive changes, and relationships. Identified gaps include paucity of research with young AA survivors and their residual psychosocial concerns. Review findings indicate a need to increase survivorship research on young AA survivors. Researchers, clinicians, and young AA survivors must partner in efforts to understand psychosocial concerns and translate findings into clinical practice (ie, use of psychosocial distress tools, distress de-escalation protocols, and individualized survivorship care plans) toward reduction of quality-of-life health disparities among young AA survivors.

Survivorship and patient satisfaction of robotic-assisted medial unicompartmental knee arthroplasty at a minimum two-year follow-up.

PubMed

Pearle, Andrew D; van der List, Jelle P; Lee, Lily; Coon, Thomas M; Borus, Todd A; Roche, Martin W

2017-03-01

Successful clinical outcomes following unicompartmental knee arthroplasty (UKA) depend on lower limb alignment, soft tissue balance and component positioning, which can be difficult to control using manual instrumentation. Although robotic-assisted surgery more reliably controls these surgical factors, studies assessing outcomes of robotic-assisted UKA are lacking. Therefore, a prospective multicenter study was performed to assess outcomes of robotic-assisted UKA. A total of 1007 consecutive patients (1135 knees) underwent robotic-assisted medial UKA surgery from six surgeons at separate institutions between March 2009 and December 2011. All patients received a fixed-bearing metal-backed onlay implant as tibial component. Each patient was contacted at minimum two-year follow-up and asked a series of five questions to determine survivorship and patient satisfaction. Worst-case scenario analysis was performed whereby all patients were considered as revision when they declined participation in the study. Data was collected for 797 patients (909 knees) with average follow-up of 29.6months (range: 22-52months). At 2.5-years of follow-up, 11 knees were reported as revised, which resulted in a survivorship of 98.8%. Thirty-five patients declined participation in the study yielding a worst-case survivorship of 96.0%. Of all patients without revision, 92% was either very satisfied or satisfied with their knee function. In this multicenter study, robotic-assisted UKA was found to have high survivorship and satisfaction rate at short-term follow-up. Prospective comparison studies with longer follow-up are necessary in order to compare survivorship and satisfaction rates of robotic-assisted UKA to conventional UKA and total knee arthroplasty. Copyright © 2016 Elsevier B.V. All rights reserved.

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

2018-03-01

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. © 2017 The Authors. European Journal of Cancer Care Published by John Wiley & Sons Ltd.

The Monitoring Avian Productivity and Survivorship (MAPS) Program: overview and progress

Treesearch

David F. DeSante; Oriane E. Williams; Kenneth M. Burton

1993-01-01

It is generally agreed that populations of many North American landbird species, especially forest-inhabiting Neotropical migratory species in eastern North America, are declining. Existing population-trend data, however, provide no information on primary demographic parameters (productivity and survivorship) and thus provide no means for determining at what point in...

Individual Differences in Well-Being in Older Breast Cancer Survivors

PubMed Central

Perkins, Elizabeth A.; Small, Brent J.; Balducci, Lodovico; Extermann, Martine; Robb, Claire; Haley, William E.

2007-01-01

Older women who survive breast cancer may differ significantly in their long-term well-being. Using a risk and protective factors model, we studied predictors of well-being in 127 women age 70 and above with a history of at least one year's survival of breast cancer. Mean post-cancer survivorship was 5.1 years. Using life satisfaction, depression and general health perceptions as outcome variables, we assessed whether demographic variables, cancer-related variables, health status and psychosocial resources predicted variability in well-being using correlational and hierarchical regression analyses. Higher age predicted increased depression but was not associated with life satisfaction or general health perceptions. Cancer-related variables, including duration of survival, and type of cancer treatment, were not significantly associated with survivors' well-being. Poorer health status was associated with poorer well-being in all three dependent variables. After controlling for demographics, cancer-related variables, and health status, higher levels of psychosocial resources including optimism, mastery, spirituality and social support predicted better outcome in all three dependent variables. While many older women survive breast cancer without severe sequelae, there is considerable variability in their well-being after survivorship. Successful intervention with older breast cancer survivors might include greater attention not only to cancer-specific concerns, but also attention to geriatric syndromes and functional impairment, and enhancement of protective psychosocial resources. PMID:17240157

Exploring Coping Strategies Among Young Asian American Women Breast Cancer Survivors.

PubMed

Yoo, Grace J; Sudhakar, Anantha; Le, Mai Nhung; Levine, Ellen G

2017-03-01

In recent years, breast cancer rates among young Asian American women have been increasing. Despite increases in breast cancer among young Asian American women, little is known about how this population copes throughout diagnosis, treatment, and survivorship. This study was a qualitative exploration of how young Asian American women cope with breast cancer diagnosis, treatment, and survivorship. In-depth interviews with 22 young (under the age of 50) Asian American women diagnosed with early stage breast cancer were conducted. Through qualitative data analysis, three major themes emerged including moving from managing the emotions of others to expressing emotional vulnerability, moving from work and productivity to work-life balance, and moving beyond the family and reaching out to breast cancer survivors. At diagnosis, participants worked to maintain normalcy including caring for others and working during treatment. Once treatment was over, women worked to find ways to use their experience as a transformative one and also to develop more positive coping skills including expressing emotional vulnerability and reaching out to others. Further studies are needed to create and test culturally tailored supportive interventions that enhance positive coping tools among young Asian American women diagnosed by breast cancer.

Towards an Ontology-driven Framework to Enable Development of Personalized mHealth Solutions for Cancer Survivors' Engagement in Healthy Living.

PubMed

Myneni, Sahiti; Amith, Muhammad; Geng, Yimin; Tao, Cui

2015-01-01

Adolescent and Young Adult (AYA) cancer survivors manage an array of health-related issues. Survivorship Care Plans (SCPs) have the potential to empower these young survivors by providing information regarding treatment summary, late-effects of cancer therapies, healthy lifestyle guidance, coping with work-life-health balance, and follow-up care. However, current mHealth infrastructure used to deliver SCPs has been limited in terms of flexibility, engagement, and reusability. The objective of this study is to develop an ontology-driven survivor engagement framework to facilitate rapid development of mobile apps that are targeted, extensible, and engaging. The major components include ontology models, patient engagement features, and behavioral intervention technologies. We apply the proposed framework to characterize individual building blocks ("survivor digilegos"), which form the basis for mHealth tools that address user needs across the cancer care continuum. Results indicate that the framework (a) allows identification of AYA survivorship components, (b) facilitates infusion of engagement elements, and (c) integrates behavior change constructs into the design architecture of survivorship applications. Implications for design of patient-engaging chronic disease management solutions are discussed.

A randomized comparison of print and web communication on colorectal cancer screening.

PubMed

Weinberg, David S; Keenan, Eileen; Ruth, Karen; Devarajan, Karthik; Rodoletz, Michelle; Bieber, Eric J

2013-01-28

New methods to enhance colorectal cancer (CRC) screening rates are needed. The web offers novel possibilities to educate patients and to improve health behaviors, such as cancer screening. Evidence supports the efficacy of health communications that are targeted and tailored to improve the uptake of recommendations. We identified unscreened women at average risk for CRC from the scheduling databases of obstetrics and gynecology practices in 2 large health care systems. Participants consented to a randomized controlled trial that compared CRC screening uptake after receipt of CRC screening information delivered via the web or in print form. Participants could also be assigned to a control (usual care) group. Women in the interventional arms received tailored information in a high- or low-monitoring Cognitive Social Information Processing model-defined attentional style. The primary outcome was CRC screening participation at 4 months. A total of 904 women were randomized to the interventional or control group. At 4 months, CRC screening uptake was not significantly different in the web (12.2%), print (12.0%), or control (12.9%) group. Attentional style had no effect on screening uptake for any group. Some baseline participant factors were associated with greater screening, including higher income (P = .03), stage of change (P < .001), and physician recommendation to screen (P < .001). A web-based educational intervention was no more effective than a print-based one or control (no educational intervention) in increasing CRC screening rates in women at average risk of CRC. Risk messages tailored to attentional style had no effect on screening uptake. In average-risk populations, use of the Internet for health communication without additional enhancement is unlikely to improve screening participation. clinicaltrials.gov Identifier: NCT00459030.

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

PubMed

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

2015-11-01

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. To determine the current practice and views of GPs in England regarding cancer survivorship care. Online survey of a sample of 500 GPs, stratified by NHS region in England. The survey included questions adapted from prior surveys assessing physician knowledge and attitudes regarding care of patients with cancer. 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. 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. © British Journal of General Practice 2015.

The effect of structural complexity, prey density, and "predator-free space" on prey survivorship at created oyster reef mesocosms

USGS Publications Warehouse

Humphries, Austin T.; La Peyre, Megan K.; Decossas, Gary A.

2011-01-01

Interactions between predators and their prey are influenced by the habitat they occupy. Using created oyster (Crassostrea virginica) reef mesocosms, we conducted a series of laboratory experiments that created structure and manipulated complexity as well as prey density and “predator-free space” to examine the relationship between structural complexity and prey survivorship. Specifically, volume and spatial arrangement of oysters as well as prey density were manipulated, and the survivorship of prey (grass shrimp, Palaemonetes pugio) in the presence of a predator (wild red drum, Sciaenops ocellatus) was quantified. We found that the presence of structure increased prey survivorship, and that increasing complexity of this structure further increased survivorship, but only to a point. This agrees with the theory that structural complexity may influence predator-prey dynamics, but that a threshold exists with diminishing returns. These results held true even when prey density was scaled to structural complexity, or the amount of “predator-free space” was manipulated within our created reef mesocosms. The presence of structure and its complexity (oyster shell volume) were more important in facilitating prey survivorship than perceived refugia or density-dependent prey effects. A more accurate indicator of refugia might require “predator-free space” measures that also account for the available area within the structure itself (i.e., volume) and not just on the surface of a structure. Creating experiments that better mimic natural conditions and test a wider range of “predator-free space” are suggested to better understand the role of structural complexity in oyster reefs and other complex habitats.

Use of a web-based survey to facilitate shared decision making for patients eligible for cancer screening.

PubMed

Brackett, Charles D; Kearing, Stephen

2015-04-01

Our aim was to facilitate shared decision making (SDM) during preventive visits by utilizing a web-based survey system to offer colorectal cancer (CRC) and prostate cancer screening decision aids (DAs) to appropriately identified patients prior to the visit. Patients completed a web-based questionnaire before their preventive medicine appointment. Age- and gender-appropriate patients completed additional questions to determine eligibility for CRC or prostate-specific antigen (PSA) screening. Eligible patients were offered a choice of video or print DA, and completed questions assessing their knowledge, values, and preferences regarding the screening decision. Responses were summarized and fed forward to clinician and patient reports. Overall, 11,493 CRC and 4,384 PSA questionnaires were completed. Patient responses were used to identify those eligible for cancer-screening DAs: 2,187 (19 %) for CRC and 2,962 (68 %) for PSA; 15 % of eligible patients requested a DA. Many patients declined a DA because they indicated they "already know enough to make their decision" (34 % for CRC, 46 % for PSA). A web-based questionnaire provides an efficient means to identify patients eligible for cancer screening decisions and to offer them DAs before an appointment. Pre-visit use of DAs along with reports giving feedback to patients and clinicians provides an opportunity for SDM to occur at the visit.

Territoriality, site fidelity, and survivorship of willow flycatchers wintering in Costa Rica

USGS Publications Warehouse

Koronkiewicz, T.J.; Sogge, M.K.; van Riper, Charles; Paxton, E.H.

2006-01-01

We studied wintering Willow Flycatchers (Empidonax traillii) in two seasonal freshwater wetland habitats in northwestern Costa Rica during five boreal winters, to determine habitat occupancy, overwinter and between-year site and territory fidelity, and the degree to which the sexes maintain and defend winter territories. Both males and females used agonistic displays, song, and other vocalizations to maintain and defend mutually exclusive winter territories. Males were generally more abundant than females, but this varied by site and year. There was no significant difference in male and female territory size, nor any indication of sexual habitat segregation. Similarity in morphology and aggressiveness between the sexes may account for the lack of habitat segregation and the ability of females to maintain territories at wintering sites. Each year, 80%-92% of banded flycatchers that were present in midwinter remained at the site until late winter; of these, 86%-100% of individuals maintained the same territories throughout the entire period. We also observed nonterritorial floaters that subsequently established and held winter territories. Between-year site fidelity averaged 68%, and almost all returning birds established territories with boundaries similar to the previous year. Between-year apparent survivorship estimates ranged annually from 54%-72%, with no difference between sites but weak support for higher survivorship of males compared to females. Values for winter site and territory fidelity were generally higher than those reported for other species and for Willow Flycatchers on the breeding grounds; between-year survivorship estimates were similar to those reported for breeding flycatchers. ?? The Cooper Ornithological Society 2006.

Opportunities for public health communication, intervention, and future research on breast cancer in younger women.

PubMed

Buchanan, Natasha; Roland, Katherine B; Rodriguez, Juan L; Miller, Jacqueline W; Fairley, Temeika

2013-04-01

Approximately 6% of breast cancers in the United States occur in women under the age of 40 years. Compared with women ≥40 years of age, younger women are diagnosed at later stages, have higher rates of recurrence and death, and may be predisposed to secondary breast or ovarian cancer. An informal meeting of experts discussed opportunities for research and public health communication related to breast cancer among young (<40 and/or premenopausal) women. In September 2011, the Centers for Disease Control and Prevention hosted 18 experts in oncology, genetics, behavioral science, survivorship and advocacy, public health, communication, ethics, nutrition, physical activity, and environmental health. They (1) reviewed research and programmatic knowledge on risk and preventive factors, early detection, and survivorship; and (2) discussed ideas for research, communication, and programmatic efforts related to young women diagnosed with or at risk for early onset breast cancer. Levels of evidence and themes for future research regarding risk and preventive factors, including exposures, were discussed. Early detection strategies, including screening, risk assessment, and genetic counseling, as well as survivorship issues, follow-up care, fertility and reproductive health, and psychosocial care were highlighted. Community and academic researchers, providers, advocates, and the federal public health community discussed strategies and opportunities for this unique population. Although the evidence is limited, future research and communication activities may be useful to organize future public health initiatives.

Impact of the Cancer Prevention and Control Research Network

PubMed Central

Ribisl, Kurt M.; Fernandez, Maria E.; Friedman, Daniela B.; Hannon, Peggy; Leeman, Jennifer; Moore, Alexis; Olson, Lindsay; Ory, Marcia; Risendal, Betsy; Sheble, Laura; Taylor, Vicky; Williams, Rebecca; Weiner, Bryan J.

2018-01-01

The Cancer Prevention and Control Research Network (CPCRN) is a thematic network dedicated to accelerating the adoption of evidence-based cancer prevention and control practices in communities by advancing dissemination and implementation science. Funded by the Centers for Disease Control and Prevention and National Cancer Institute, CPCRN has operated at two levels: Each participating Network Center conducts research projects with primarily local partners as well as multicenter collaborative research projects with state and national partners. Through multicenter collaboration, thematic networks leverage the expertise, resources, and partnerships of participating centers to conduct research projects collectively that might not be feasible individually. Although multicenter collaboration often is advocated, it is challenging to promote and assess. Using bibliometric network analysis and other graphical methods, this paper describes CPCRN’s multicenter publication progression from 2004 to 2014. Searching PubMed, Scopus, and Web of Science in 2014 identified 249 peer-reviewed CPCRN publications involving two or more centers out of 6,534 total. The research and public health impact of these multicenter collaborative projects initiated by CPCRN during that 10-year period were then examined. CPCRN established numerous workgroups around topics such as: 2-1-1, training and technical assistance, colorectal cancer control, federally qualified health centers, cancer survivorship, and human papillomavirus. The paper discusses the challenges that arise in promoting multicenter collaboration and the strategies that CPCRN uses to address those challenges. The lessons learned should broadly interest those seeking to promote multisite collaboration to address public health problems, such as cancer prevention and control. PMID:28215371

New patient-centered care standards from the commission on cancer: opportunities and challenges.

PubMed

Fashoyin-Aje, Lola A; Martinez, Kathryn A; Dy, Sydney M

2012-01-01

The Commission on Cancer of the American College of Surgeons publishes accreditation standards that hospitals and cancer treatment centers implement to ensure quality care to cancer patients. These standards address the full spectrum of cancer care, from cancer prevention to survivorship and end-of-life care. The most recent revisions of these standards included new standards in "patient-centered areas," including the provision of palliative care services, treatment and survivorship plans, psychological distress screening, and patient navigation programs. Unified by their emphasis on the early identification of patients at risk of receiving suboptimal care and the importance of ensuring that issues arising during and after completion of cancer treatment are addressed, they are a welcome expansion of the standards guiding cancer care. As with all standards, however, the next steps will be to further define how they will be implemented and to determine how success will be assessed. This will require ongoing critical evaluation of the standards and their implementation, including the need for member institutions to define successful implementation methods and measurable outcomes and identification of areas most in need of further research. Copyright © 2012 Elsevier Inc. All rights reserved.

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.

The association of physical activity and colorectal and breast cancer: The Fifth Korea National Health and Nutrition Examination Survey (2008-2011).

PubMed

Kang, Suh-Jung

2015-06-01

Therapeutic importance of physical activity during and after cancer treatment has been supported. To examine the patterns of physical activity according to the stages of breast and colorectal cancer survivor-ship in Korean, Korean National Health and Nutrition Examination Survey data from 2008 to 2011 were used. International Physical Activity Questionnaire (IPAQ) was utilized to estimate weekly time spent in vigorous- and moderate-intensity physical activity, and walking, and to calculate MET-minute/week. Depending on the survivorship, the subjects were categorized into "never diagnosed with cancer" (group 1), "0-4 yr since cancer diagnosis" (group 2), and "5 or more years since cancer diagnosis" (group 3), separately for colorectal and breast cancer. The associations between physical activity and the cancer survivorship were studied. Following results were obtained: (1) Breast cancer (n=10,167, mean age=48.55±16.27): The mean physical activity levels expressed in MET-minutes/week were 2,064.83, 1748.82, and 1998.36 in groups 1, 2, and 3, respectively. Even though cancer survivors tended to be less active compared to people without cancer, there were no statistically significant difference among the three groups. (2) Colorectal cancer (n=17,270, mean age=48.62): MET-minutes/week was 2064.30, 1084.83, and 709.04 36 in groups 1, 2, and 3, respectively. The differences were significant between group 1 and 2 (F=5.87, P=0.016) and group 1 and 3 (F=28.99, P<0.001). Despite potential therapeutic benefits of physical activity, colorectal cancer survivors were less active than people without cancer in Korea.

Telephone, print, and Web-based interventions for physical activity, diet, and weight control among cancer survivors: a systematic review.

PubMed

Goode, Ana D; Lawler, Sheleigh P; Brakenridge, Charlotte L; Reeves, Marina M; Eakin, Elizabeth G

2015-12-01

Broad-reach (non-face-to-face) modalities offer an accessible and cost-effective means to provide behavior change programs in diverse and growing cancer survivor populations. The purpose of this systematic review is to evaluate the efficacy of physical activity, dietary, and/or weight control interventions for cancer survivors in which telephone, short-message service, print, and/or Web is the primary method of delivery. A structured search of PubMed, Embase, Web of Science, CINAHL, and CENTRAL (May 2013) was conducted. Included studies focused and reported on physical activity (PA) and dietary change and/or weight control in adult cancer survivors, delivered at least 50% of intervention contacts by broad-reach modality and included a control group. Study design, intervention features, and behavioral/weight outcomes were extracted, tabulated, and summarized. Twenty-seven studies were included; 22 telephone, three Web, and two print. Sixteen studies targeted PA, two diet, and nine targeted multiple behaviors. Most studies (18/27) targeted a single survivor group, namely breast cancer (n = 12). Nineteen of 27 studies found evidence for initiation of behavior change, with only eight reporting on maintenance and one on cost-effectiveness. This review provides support for broad-reach modalities, particularly the telephone, in the delivery of lifestyle interventions to cancer survivors. Future research should evaluate (1) newer technologies (i.e., SMS and mobile phone applications), (2) interventions for diverse cancer survivors and those targeting multiple behaviors, (3) long-term outcomes, and 4) cost-effectiveness. Broad-reach lifestyle interventions are effective, with further research needed to evaluate their generalizability and integration into cancer care.

Implications of Childhood Cancer Survivors in the Classroom and the School

ERIC Educational Resources Information Center

Gorin, Sherri Sheinfeld; McAuliffe, Patrick

2009-01-01

Purpose: The aims of this paper are to: briefly review the long-term or late effects of cancer diagnosis and treatment on children and youth; examine the implications of these effects on the educational needs of the child or youth; explore the implications of childhood cancer survivorship on the school, particularly for female students. Over the…

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

BE ACTIVE: an Education Program for Chinese Cancer Survivors in Canada.

PubMed

Kwong, Sandy; Bedard, Angela

2016-09-01

The needs of cancer survivors have been well documented and tend to be higher in immigrant populations. In order to help address unmet needs of Chinese-speaking cancer survivors, we have developed a structured psycho-educational program for this group. The program development was informed by both cultural values of the population and published recommendations for cancer survivorship education and support. The program, entitled BE ACTIVE, includes topics related to key domains in cancer survivorship: psychosocial aspects, general medical management and follow up for late effects, complementary medicine, and lifestyle management through fitness and nutrition. We studied the program delivery in 2012 and 2013, where a total of 124 individuals took part. Participants reported high satisfaction, learning gains, and the willingness to recommend the program to others; they rated their understanding of the behaviors needed for wellness and their motivation for change as high. A facilitator toolkit, which includes topic content development guides and presentation examples, was developed to assist with delivery of the program by other centers. This type of program can improve access and delivery to underserved populations with unmet needs and may also benefit cancer survivors in other jurisdictions with similar concerns.

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

Anterior minimally invasive approach for total hip replacement: five-year survivorship and learning curve.

PubMed

Müller, Daniel A; Zingg, Patrick O; Dora, Claudio

2014-01-01

Opponents associate minimally invasive total hip replacement (THR) with additional risks, potentially resulting in increased implant failure rates. The purpose was to document complications, quality of implant positioning and five-year survivorship of THR using the AMIS approach and to test the hypothesis that eventual high complication and revision rates would be limited to an early series and be avoided by junior surgeons who get trained by a senior surgeon. A consecutive series of 150 primary THR implanted during the introduction of the AMIS technique in the department was retrospectively analysed for complications, implant positioning and implant survival after a minimum of five years. Survivorship curves of implants were compared between different surgeons and time periods. Due to implant revision for any reason the five-year survival rate was 94.6%, 78.9% for the first 20 and 96.8% for the following 130 AMIS procedures (p = 0.001). The hazard ratio for implant failure was 0.979 indicating a risk reduction of 2% every further case. The five-year implant survivorship of those procedures performed by two junior surgeons was 97.7%. We conclude that adoption of AMIS temporarily exposed patients to a higher risk of implant revisions, which normalised after the first 20 cases and that experience from a single surgeon's learning curve could effectively be taught to junior surgeons.

Building a semantic web-based metadata repository for facilitating detailed clinical modeling in cancer genome studies.

PubMed

Sharma, Deepak K; Solbrig, Harold R; Tao, Cui; Weng, Chunhua; Chute, Christopher G; Jiang, Guoqian

2017-06-05

Detailed Clinical Models (DCMs) have been regarded as the basis for retaining computable meaning when data are exchanged between heterogeneous computer systems. To better support clinical cancer data capturing and reporting, there is an emerging need to develop informatics solutions for standards-based clinical models in cancer study domains. The objective of the study is to develop and evaluate a cancer genome study metadata management system that serves as a key infrastructure in supporting clinical information modeling in cancer genome study domains. We leveraged a Semantic Web-based metadata repository enhanced with both ISO11179 metadata standard and Clinical Information Modeling Initiative (CIMI) Reference Model. We used the common data elements (CDEs) defined in The Cancer Genome Atlas (TCGA) data dictionary, and extracted the metadata of the CDEs using the NCI Cancer Data Standards Repository (caDSR) CDE dataset rendered in the Resource Description Framework (RDF). The ITEM/ITEM_GROUP pattern defined in the latest CIMI Reference Model is used to represent reusable model elements (mini-Archetypes). We produced a metadata repository with 38 clinical cancer genome study domains, comprising a rich collection of mini-Archetype pattern instances. We performed a case study of the domain "clinical pharmaceutical" in the TCGA data dictionary and demonstrated enriched data elements in the metadata repository are very useful in support of building detailed clinical models. Our informatics approach leveraging Semantic Web technologies provides an effective way to build a CIMI-compliant metadata repository that would facilitate the detailed clinical modeling to support use cases beyond TCGA in clinical cancer study domains.

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

Midterm Survivorship and Complications of Total Knee Arthroplasty in Patients With Dwarfism.

PubMed

Tan, Timothy L; Kheir, Michael M; Modi, Ronuk; Chen, Chi-Lung; Shao, Hongyi; Chen, Antonia F

2017-11-01

Dwarfism is associated with skeletal dysplasias and joint deformities that frequently result in osteoarthritis requiring treatment with total knee arthroplasty (TKA). These surgeries can be challenging because of alignment deformities, poor bone stock, and smaller components. This study aims to compare TKA implant survivorship and complications between dwarf and nondwarf patients. A retrospective case-control study was performed from 1997-2014 evaluating 115 TKAs in patients under the height threshold of 147.32 cm. This cohort was compared with 164 patients of normal height. Medical records were reviewed for demographics, surgical characteristics, and outcomes. All cases had 2-year minimum follow-up. The revision rate was 8.7% in dwarfs compared with 3.7% in controls (P = .08). The 2-, 5-, and 10-year implant survivorship in dwarfs was 96.4%, 92.5%, and 90.2%, respectively; and 96.6%, 95.6%, and 94.8% for controls, respectively (P = .24). Dwarfs underwent significantly more manipulations for arthrofibrosis (P = .002). There was greater femoral (17.4% vs 2.1%, P < .01) and tibial (6.5% vs 2.7%, P < .01) component overhang in dwarfs compared with controls. Despite a 2-fold increase in the revision rate of the dwarf cohort, the midterm survivorship is comparable between the dwarf and nondwarf patients. However, dwarfs were more likely to become stiff and undergo manipulation; the increased propensity for stiffness may be associated with oversized components, as evidenced by greater component overhang. Surgeons should be aware of this increased risk and may consider using smaller or customized implants to account for the morphological differences in this patient population. Copyright © 2017 Elsevier Inc. All rights reserved.

Fear of cancer recurrence in young early-stage breast cancer survivors: the role of metacognitive style and disease-related factors.

PubMed

Thewes, B; Bell, M L; Butow, P

2013-09-01

Fear of cancer recurrence (FCR) is a common challenge of cancer survivorship, particularly in younger survivors. Maladaptive metacognitions have been shown to be important to the development of a range of emotional disorders but have not previously been explored in the context of FCR. This study aimed to explore the relationship between FCR and a maladaptive metacognitions. This cross-sectional study included young women diagnosed with early-stage breast cancer at least 1 year prior to study entry. Participants completed a web-based questionnaire, which included the Fear of Cancer Recurrence Inventory (FCRI) and the brief Metacognitions Questionnaire-30 (MCQ-30). Linear regression was used to calculate unadjusted and adjusted slope estimates of the association of FCR with six metacognition variables, the total score of the MCQ-30 and the five subscales. Two-hundred and eighteen women with a mean age of 39 years at diagnosis participated. All measures of metacognitive style were moderately correlated with FCRI scores (r=0.31-0.49) and significantly associated with FCRI in both unadjusted and adjusted models. Overall metacognitive style explained 36% of the variance in FCR scores in combination with disease and demographic factors. Negative metacognitions (R(2) =0.32) and need for control over cognition (R(2)=0.26) were the MCQ-30 subscales most associated with higher FCR. Unhelpful metacognitions appear to play an important role in FCR in young women with early-stage breast cancer. Treatments that focus on changing unhelpful metacognitions may prove a useful approach for treating clinical FCR in cancer survivors in the future. Copyright © 2013 John Wiley & Sons, Ltd.