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

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.

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.

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.

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.

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.

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.

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.

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.

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.

Cancer survivorship: Advancing the concept in the context of colorectal cancer.

PubMed

Drury, Amanda; Payne, Sheila; Brady, Anne-Marie

2017-08-01

Previous conceptualizations of cancer survivorship have focused on heterogeneous cancer survivors, with little consideration of the validity of conclusions for homogeneous tumour groups. This paper aims to examine the concept of cancer survivorship in the context of colorectal cancer (CRC). Rodgers' (1989) Evolutionary Method of Concept Analysis guided this study. A systematic search of PUBMED, CINAHL, PsycINFO and The Cochrane Library was conducted in November 2016 to identify studies of CRC survivorship. The Braun and Clarke (2006) framework guided the analysis and interpretation of data extracted from eighty-five publications. Similar to general populations of cancer survivors, CRC survivors experience survivorship as an individual, life-changing process, punctuated by uncertainty and a duality of positive and negative outcomes affecting quality of life. However, CRC survivors experience specific concerns arising from the management of their disease. The concept of cancer survivorship has evolved over the past decade as the importance of navigating the healthcare system and its resources, and the constellation of met and unmet needs of cancer survivors are realised. The results highlight core similarities between survivorship in the context of CRC and other tumour groups, but underlines issues specific to CRC survivorship. Communication and support are key issues in survivorship care which may detrimentally affect CRC survivors' well-being if they are inadequately addressed. Healthcare professionals (HCP's) therefore have a duty to ensure cancer survivors' health, information and supportive care needs are met in the aftermath of treatment. Copyright © 2017 Elsevier Ltd. All rights reserved.

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.

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.

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

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.

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.

Weathering the seasons of cancer survivorship: mind-body therapy use and reported reasons and outcomes by stages of cancer survivorship.

PubMed

Campo, Rebecca A; Leniek, Karyn L; Gaylord-Scott, Nicole; Faurot, Keturah R; Smith, Sunyata; Asher, Gary; Porterfield, Deborah; Gaylord, Susan A

2016-09-01

Mind-body therapies (MBTs), a subset of complementary and alternative medicine (CAM), are used by cancer survivors to manage symptoms related to their cancer experience. MBT use may differ by cancer survivorship stage (i.e., acute, short-term, long-term) because each stage presents varying intensities of medical activities, associated emotions, and treatment effects. We examined the relationship between MBT use and survivorship stage (acute <1 year; short-term 1 to 5 years; long-term >5 years since diagnosis) using the CAM supplement of the 2012 National Health Interview Survey. We also examined reported reasons for and outcomes of MBT use and frequency of MBT types. The sample included cancer survivors (N = 3076) and non-cancer controls (N = 31,387). Logistic regression tested the relationship of MBT use and survivorship stage. Weighted percentages were calculated by survivorship stage for reported reasons and outcomes of use and frequency of MBT types. MBT use varied by cancer survivorship stage (p = 0.02): acute (8.3 %), short-term (15.4 %), long-term (11.7 %) survivorship and non-cancer controls (13.2 %). In the adjusted model, short-term survivors had 35 % greater odds of MBT use than did controls (95 % CI 1.00, 1.83). Reasons for and outcomes of MBT use varied among the survivorship stages, with more acute survivors reporting medical-related reasons and more short-term survivors reporting to manage symptoms. MBT may fulfill different symptom management needs at varying stages of survivorship. These findings can help inform supportive care services of survivors' use of MBT for symptom burden at each stage and the allocation of these services.

Reconceptualizing Cancer Survivorship Through Veterans' Lived Experiences

PubMed Central

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

2015-01-01

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

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.

Survivorship: Screening for Cancer and Treatment Effects, Version 2.2014

PubMed Central

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

2015-01-01

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

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.

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

Concept analysis of cancer survivorship and contributions to oncological nursing.

PubMed

de Oliveira, Rafaela Azevedo Abrantes; da Conceição, Vander Monteiro; Araujo, Jeferson Santos; Zago, Márcia Maria Fontão

2018-02-01

This study aims to analyse the concept of cancer survivorship using Rodgers' evolutionary concept analysis model. The lack of a consensus definition as well as the confusion and debate concerning the definitions of "survivor" and "cancer survivorship" hinder an understanding of the intrinsic needs associated with the latter. Concept analysis. A systematic literature search was performed using the following databases: PubMed, CINAHL, Web of Science, LILACS, and PsycINFO with studies published between 2000 and 2014. The final sample contained 39 studies that were analysed on the basis of Rodgers' model and inductive thematic analysis, discussed through the lens of the medical anthropology concept of culture. Cancer survivorship is a broad concept that can be understood using 8 themes: changes in life plans, positive and negative aspect dualities, life reflections, identity change, individual experiences, symptom control, the need for support, and quality of care. These themes are summarized using 2 attributes: liminality process and culturally congruent care. This article contributes to understanding of cancer survivorship and the processes that are intrinsic to this concept. It calls for future investigations to enhance cancer survivorship across its 2 domains at the personal (patient's life) and clinical (nursing practice) levels. © 2017 John Wiley & Sons Australia, Ltd.

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

[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.

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.

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.

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

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 ...

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.

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

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.

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

An evaluation of cancer survivorship activities across national comprehensive cancer control programs

PubMed Central

Underwood, J. Michael; Lakhani, Naheed; Rohan, Elizabeth; Moore, Angela; Stewart, Sherri L.

2015-01-01

Introduction Centers for Disease Control and Prevention’s (CDC) National Comprehensive Cancer Control Program (NCCCP) funds states, the District of Columbia, tribal organizations, territories, and jurisdictions across the USA develop and implement jurisdiction-specific comprehensive cancer control (CCC) plans. The objective of this study was to analyze NCCCP action plan data for incorporation and appropriateness of cancer survivorship-specific goals and objectives. Methods In August 2013, NCCCP action plans maintained within CDC’s Chronic Disease Management Information System (CDMIS) from years 2010 to 2013 were reviewed to assess the inclusion of cancer survivorship objectives. We used the CDMIS search engine to identify “survivorship” within each plan and calculated the proportion of programs that incorporate cancer survivorship-related content during the study period and in each individual year. Cancer survivorship objectives were then categorized by compatibility with nationally accepted, recommended strategies from the report A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies (NAP). Results From 2010 to 2013, 94 % (n=65) of NCCCP action plans contained survivorship content in at least 1 year during the time period and 38 % (n=26) of all NCCCP action plans addressed cancer survivorship every year during the study period. Nearly 64 % (n=44) of NCCCP action plans included cancer survivorship objectives recommended in NAP. Conclusion Nearly all NCCCP action plans addressed cancer survivorship from 2010 to 2013, and most programs implemented recommended cancer survivorship efforts during the time period. Implications for Cancer Survivors NCCCP grantees can improve cancer survivorship support by incorporating recommended efforts within each year of their plans. PMID:25732543

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

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.

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

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.

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,…

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.

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.

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.

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.

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

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

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

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

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.

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.

Cancer survivorship: a new challenge in comprehensive cancer control.

PubMed

Pollack, Lori A; Greer, Greta E; Rowland, Julia H; Miller, Andy; Doneski, Donna; Coughlin, Steven S; Stovall, Ellen; Ulman, Doug

2005-10-01

Cancer survivors are a growing population in the United States because of earlier cancer diagnosis, the aging of society, and more effective risk reduction and treatment. Concerns about the long-term physical, psychosocial, and economic effects of cancer treatment on cancer survivors and their families are increasingly being recognized and addressed by public, private, and non-profit organizations. The purpose of this paper is to discuss how survivorship fits within the framework of comprehensive cancer control. We summarize three national reports on cancer survivorship and highlight how various organizations and programs are striving to address the needs of cancer survivors through public health planning, including the challenges these groups face and the gaps in knowledge and available services. As cancer survivorship issues are being recognized, many organizations have objectives and programs to address concerns of those diagnosed with cancer. However, better coordination and dissemination may decrease overlap and increase the reach of efforts and there is limited evidence for the effectiveness and impact of these efforts.

Patient Navigation in Breast Cancer Treatment and Survivorship: A Systematic Review.

PubMed

Baik, Sharon H; Gallo, Linda C; Wells, Kristen J

2016-07-25

Patient navigation is an intervention approach that improves cancer outcomes by reducing barriers and facilitating timely access to cancer care. Little is known about the benefits of patient navigation during breast cancer treatment and survivorship. This systematic review evaluates the efficacy of patient navigation in improving treatment and survivorship outcomes in women with breast cancer. The review included experimental and quasi-experimental studies of patient navigation programs that target breast cancer treatment and breast cancer survivorship. Articles were systematically obtained through electronic database searches of PubMed/MEDLINE, PsycINFO, Web of Science, CINAHL, and Cochrane Library. The Effective Public Health Practice Project Quality Assessment Tool was used to evaluate the methodologic quality of individual studies. Thirteen studies met the inclusion criteria. Most were of moderate to high quality. Outcomes targeted included timeliness of treatment initiation, adherence to cancer treatment, and adherence to post-treatment surveillance mammography. Heterogeneity of outcome assessments precluded a meta-analysis. Overall, results demonstrated that patient navigation increases surveillance mammography rates, but only minimal evidence was found with regard to its effectiveness in improving breast cancer treatment outcomes. This study is the most comprehensive systematic review of patient navigation research focused on improving breast cancer treatment and survivorship. Minimal research has indicated that patient navigation may be effective for post-treatment surveillance; however, more studies are needed to draw definitive conclusions about the efficacy of patient navigation during and after cancer treatment. © 2016 by American Society of Clinical Oncology.

Patient Navigation in Breast Cancer Treatment and Survivorship: A Systematic Review

PubMed Central

Baik, Sharon H.; Gallo, Linda C.

2016-01-01

Purpose Patient navigation is an intervention approach that improves cancer outcomes by reducing barriers and facilitating timely access to cancer care. Little is known about the benefits of patient navigation during breast cancer treatment and survivorship. This systematic review evaluates the efficacy of patient navigation in improving treatment and survivorship outcomes in women with breast cancer. Methods The review included experimental and quasi-experimental studies of patient navigation programs that target breast cancer treatment and breast cancer survivorship. Articles were systematically obtained through electronic database searches of PubMed/MEDLINE, PsycINFO, Web of Science, CINAHL, and Cochrane Library. The Effective Public Health Practice Project Quality Assessment Tool was used to evaluate the methodologic quality of individual studies. Results Thirteen studies met the inclusion criteria. Most were of moderate to high quality. Outcomes targeted included timeliness of treatment initiation, adherence to cancer treatment, and adherence to post-treatment surveillance mammography. Heterogeneity of outcome assessments precluded a meta-analysis. Overall, results demonstrated that patient navigation increases surveillance mammography rates, but only minimal evidence was found with regard to its effectiveness in improving breast cancer treatment outcomes. Conclusion This study is the most comprehensive systematic review of patient navigation research focused on improving breast cancer treatment and survivorship. Minimal research has indicated that patient navigation may be effective for post-treatment surveillance; however, more studies are needed to draw definitive conclusions about the efficacy of patient navigation during and after cancer treatment. PMID:27458298

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.

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

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

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

Taking Our Seat at the Table: Community Cancer Survivorship.

PubMed

Polo, Katie M; Smith, Caitlin

Cancer survivors are at risk for occupational performance issues related to activities of daily living, instrumental activities of daily living, work, and social and community participation. Occupational therapy practitioners can address these performance issues by offering services within existing community cancer survivorship programs that focus on adaptive and compensatory strategies to facilitate meaningful lifestyles and optimize health and well-being. Occupational therapy services do not currently exist at these community sites, nor are occupational therapy practitioners recognized as providers in existing community cancer survivorship programs. Recognition of practitioners' distinct value in cancer survivorship, advocacy for occupational therapy services in the community, development of supporting documentation for occupational therapy's role in community survivorship, and research on the efficacy of interventions in community cancer survivorship are needed to expand occupational therapy's role with this growing population. Copyright © 2017 by the American Occupational Therapy Association, Inc.

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

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.

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

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.

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

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.

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

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.

Family support in cancer survivorship.

PubMed

Muhamad, Mazanah; Afshari, Mojgan; Kazilan, Fitrisehara

2011-01-01

This paper raises issues about the role of family members in providing support for breast cancer survivors. Data were collected from 400 breast cancer survivors in Peninsular Malaysia through a custom-designed questionnaire fielded at hospitals and support group meetings. The data were analyzed using descriptive statistics. The analyses show that all family members could be supportive, especially in decision making and help with emotional issues. The spouse was the main support provider among the family members (others were children, parents, siblings and more distant relatives). The results also indicated that a significant percentage practiced collaborative decision-making. Breast cancer survivors needed their family members' support for information on survivorship strategies such as managing emotions, health, life style and dietary practice. The family members' supportive role may be linked to the Malaysian strong family relationship culture. For family members to contribute more adequately to cancer survivorship, it is suggested that appropriate educational intervention also be provided to them.

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.

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

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

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 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.

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.

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

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.

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

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

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

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.

Comparing Web-Based Provider-Initiated and Patient-Initiated Survivorship Care Planning for Cancer Patients: A Randomized Controlled Trial

PubMed Central

Tolbert, Elliott; Hannum, Susan M; Radhakrishnan, Archana; Zorn, Kelsey; Blackford, Amanda; Greco, Stephen; Smith, Karen; Snyder, Claire F

2016-01-01

Background Survivorship care plans (SCPs) are intended to facilitate communication and coordination between patients, oncologists, and primary care providers. Most SCP initiatives have focused on oncology providers initiating the SCP process, but time and resource barriers have limited uptake. Objective This trial compares the feasibility and value of 2 Web-based SCP tools: provider-initiated versus patient-initiated. Methods This mixed-methods study recruited clinicians from 2 academically-affiliated community oncology practices. Eligible patients were treated by a participating oncologist, had nonmetastatic cancer, completed acute treatment ≤ 2 months before enrollment, and had no evidence of disease. Patients were randomized 1:1 to either provider-initiated or patient-initiated SCPs—both are Web-based tools. We conducted qualitative interviews with providers at baseline and follow-up and with patients 2 months after enrollment. In addition, patients were administered the Preparing for Life as a (New) Survivor (PLANS) and Cancer Survivors’ Unmet Needs (CaSUN) surveys at baseline and 2 months. Results A total of 40 providers were approached for the study, of whom 13 (33%) enrolled. Providers or clinic staff required researcher assistance to identify eligible patients; 41 patients were randomized, of whom 25 completed follow-up (61%; 13 provider-initiated, 12 patient-initiated). Of the 25, 11 (44%) had initiated the SCP; 5 (20%) provided the SCP to their primary care provider. On the Preparing for Life as a (New) Survivor and Cancer Survivors’ Unmet Needs, patients in both arms tended to report high knowledge and confidence and few unmet needs. In qualitative interviews, providers and patients discussed SCPs’ value. Conclusions Regardless of patient- versus provider-initiated templates and the Web-based design of these tools, barriers to survivorship care planning persist. Further efforts should emphasize workflow functions for identifying and completing

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.

'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

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

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

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

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

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

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.

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

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.

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.

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.

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.

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.

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

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

PubMed

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

2012-05-01

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

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.

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.

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.

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 ...

Young adult cancer survivors' follow-up care expectations of oncologists and primary care physicians.

PubMed

Hugh-Yeun, Kiara; Kumar, Divjot; Moghaddamjou, Ali; Ruan, Jenny Y; Cheung, Winson Y

2017-06-01

Young adult cancer survivors face unique challenges associated with their illness. While both oncologists and primary care physicians (PCPs) may be involved in the follow-up care of these cancer survivors, we hypothesized that there is a lack of clarity regarding each physician's roles and responsibilities. A self-administered survey was mailed to young adult cancer survivors in British Columbia, Canada, who were aged 20 to 39 years at the time of diagnosis and alive at 2 to 5 years following the diagnosis to capture their expectations of oncologists and PCPs in various important domains of cancer survivorship care. Multivariate logistic regression models that adjusted for confounders were constructed to examine for predictors of the different expectations. Of 722 young cancer survivors surveyed, 426 (59%) responded. Among them, the majority were White women with breast cancer. Oncologists were expected to follow the patient's most recent cancer and treatment-related side effects while PCPs were expected to manage ongoing and future cancer surveillance as well as general preventative care. Neither physician was perceived to be responsible for addressing the return to daily activities, reintegration to interpersonal relationships, or sexual function. Older survivors were significantly less likely to expect oncologists (p = 0.03) and PCPs (p = 0.01) to discuss family planning when compared to their younger counterparts. Those who were White were significantly more likely to expect PCPs to discuss comorbidities (p = 0.009) and preventative care (p = 0.001). Young adult cancer survivors have different expectations of oncologists and PCPs with respect to their follow-up care. Physicians need to better clarify their roles in order to further improve the survivorship phase of cancer care for young adults. Young adult cancer survivors have different expectations of their oncologists and PCPs. Clarification of the roles of each physician group during follow-up can

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.

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

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

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

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

Care Coordination and Transitions of Care.

PubMed

Choi, Youngjee

2017-11-01

Care coordination and effective transitions of care are essential for high-quality care in cancer survivors. Aspects of care that require coordination include cancer surveillance, managing the effects of cancer and its treatment, and preventive care, including screening for new cancers, with the clinician responsible for each aspect of care clearly defined. There are many barriers to transitioning and coordinating care across cancer specialists and primary care physicians; possible solutions include survivorship care plans and certain care models. Improving these areas, along with survivorship care training and education, may lead to more effective care coordination and transitions in the future. Copyright © 2017 Elsevier Inc. All rights reserved.

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 .

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.

Access to Preventive Health Care for Cancer Survivors

PubMed Central

Yabroff, K. Robin; Short, Pamela Farley; Machlin, Steven; Dowling, Emily; Rozjabek, Heather; Li, Chunyu; McNeel, Timothy; Ekwueme, Donatus U.; Virgo, Katherine S.

2013-01-01

Background Access to healthcare, particularly effective primary and secondary preventive care, is critical for cancer survivors, in order to minimize the adverse sequelae of cancer and its treatment. Purpose The goal of the study was to evaluate the association between cancer survivorship and access to primary and preventive health care. Methods Cancer survivors (n=4960) and individuals without a cancer history (n=64,431) aged ≥18 years, from the 2008–2010 Medical Expenditure Panel Survey (MEPS), were evaluated. Multiple measures of access and preventive services use were compared. The association between cancer survivorship and access and preventive services was evaluated with multivariate logistic regression models, stratified by age group (18–64 years and ≥65 years), controlling for the effects of age, gender, race/ethnicity, education, marital status, and comorbidities. Data were analyzed in 2013. Results Cancer survivors aged ≥65 years had equivalent or greater access and preventive services use than individuals without a cancer history, in adjusted analyses. However, among those aged 18–64 years with private health insurance, cancer survivors were more likely than other individuals to have a usual source of care and to use preventive services, whereas uninsured or publicly insured cancer survivors were generally less likely to have a usual source of care and to use preventive services than were uninsured or publicly insured adults without a cancer history. Conclusions Although access and preventive care use in cancer survivors is generally equivalent or greater compared to that of other individuals, disparities for uninsured and publicly insured cancer survivors aged 18–64 years suggest that improvements in survivor care are needed. PMID:23953357

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

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

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

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.

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.

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.

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.

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

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

Documenting coordination of cancer care between primary care providers and oncology specialists in Canada.

PubMed

Brouwers, Melissa C; Vukmirovic, Marija; Tomasone, Jennifer R; Grunfeld, Eva; Urquhart, Robin; O'Brien, Mary Ann; Walker, Melanie; Webster, Fiona; Fitch, Margaret

2016-10-01

To report on the findings of the CanIMPACT (Canadian Team to Improve Community-Based Cancer Care along the Continuum) Casebook project, which systematically documented Canadian initiatives (ie, programs and projects) designed to improve or support coordination and continuity of cancer care between primary care providers (PCPs) and oncology specialists. Pan-Canadian environmental scan. Canada. Individuals representing the various initiatives provided data for the analysis. Initiatives included in the Casebook met the following criteria: they supported coordination and collaboration between PCPs and oncology specialists; they were related to diagnosis, treatment, survivorship, or personalized medicine; and they included breast or colorectal cancer or both. Data were collected on forms that were compiled into summaries (ie, profiles) for each initiative. Casebook initiatives were organized based on the targeted stage of the cancer care continuum, jurisdiction, and strategy (ie, model of care or type of intervention) employed. Thematic analysis identified similarities and differences among employed strategies, the level of primary care engagement, implementation barriers and facilitators, and initiative evaluation. The CanIMPACT Casebook profiles 24 initiatives. Eleven initiatives targeted the survivorship stage of the cancer care continuum and 15 focused specifically on breast or colorectal cancer or both. Initiative teams implemented the following strategies: nurse patient navigation, multidisciplinary care teams, electronic communication or information systems, PCP education, and multicomponent initiatives. Initiatives engaged PCPs at various levels. Implementation barriers included lack of care standardization across jurisdictions and incompatibility among electronic communication systems. Implementation facilitators included having clinical and program leaders publicly support the initiative, repurposing existing resources, receiving financial support, and

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

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

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

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.

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.

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.

Shared Care of Childhood Cancer Survivors: A Telemedicine Feasibility Study.

PubMed

Costello, Aimee G; Nugent, Bethany D; Conover, Noelle; Moore, Amanda; Dempsey, Kathleen; Tersak, Jean M

2017-12-01

With an increasing number of childhood cancer survivors (CCSs), determining the best model of survivorship transition care is becoming a growing priority. Shared care between pediatric oncology and adult primary care is often necessary, making survivorship a time of transition, but effective standard models are lacking. We sought to provide a more integrated approach to transition using telemedicine. Recruited primary care provider/CCS dyads were instructed to log-in to a password-protected virtual meeting room using telemedicine equipment at the time or a regularly scheduled office visit. Dyads were joined by a pediatric survivorship clinic team member who conducted the telemedicine portion of the transition visit, which consisted of the review of an individualized treatment summary and care plan. Postquestionnaires were developed to evaluate key points such as fund of knowledge, satisfaction with the visit, and effectiveness of this electronic tool. There were 19 transition visits conducted, 13 of which used the telemedicine equipment as planned. Those that did not use the equipment were primarily unable to due to technical difficulties. Postquestionnaires were overall positive, confirming increased knowledge, comfort and abilities, and patient satisfaction in survivorship care. Negative comments were primarily related to equipment difficulties. A gap still remains in helping CCSs transition from oncology to primary care and this pilot study offered insights into how we might better bridge that gap through the use of telemedicine. Further research is needed to refine the transition process for CCSs, including evaluation and testing models for standard of care.

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.

Health care access and smoking cessation among cancer survivors: implications for the Affordable Care Act and survivorship care

PubMed Central

Steinberger, Eileen K.; Sorkin, John D.

2015-01-01

Purpose The study objectives are to examine prevalence of current smoking, and to assess the association of both health insurance (HI) and access to care with smoking cessation among cancer survivors. Methods We performed an analysis from a cross-sectional study of cancer survivors aged 18–64 years using nationally representative data from the 2009 Behavioral Risk Factor Surveillance System survey. We assessed the prevalence of current smoking among cancer survivors. Also, in a subset excluding never smokers, we assessed cessation status of cancer survivors operationalized as comparing current to former smokers. Results The study population (N=18,896) was predominantly 45–64 years of age, female, and white. The prevalence of current smoking was substantially greater among cancer survivors without HI (40.9 %) than for those with HI (19.5 %). Cancer survivors with no HI had 2-fold greater adjusted odds of not quitting cigarette smoking compared to those with HI. Among those with insurance, cancer survivors who did not have regular health care provider or could not see doctor due to cost or had their last routine checkup ≥1 year ago had 60–80 % fold greater adjusted odds of not quitting cigarette smoking compared to cancer survivors who had better access to health care. Conclusions Cancer survivors without HI have substantially greater current smoking rates compared with those with HI. Among cancer survivors with HI, those who experienced health care access-related problems had lower cessation rates than their counterparts. Implications for Cancer Survivors Smoking cessation needs to be recognized as a crucial component of preventive care for cancer survivors. Continuous patient engagement and cancer-patient-centered strategies are urgently needed to achieve optimal results for quit rates particularly for young cancer survivors who are most susceptible to current smoking. PMID:25862543

Proactive cancer care in primary care: a mixed-methods study.

PubMed

Kendall, Marilyn; Mason, Bruce; Momen, Natalie; Barclay, Stephen; Munday, Dan; Lovick, Roberta; Macpherson, Stella; Paterson, Euan; Baughan, Paul; Cormie, Paul; Kiehlmann, Peter; Free, Amanda; Murray, Scott A

2013-06-01

Current models of post-treatment cancer care are based on traditional practices and clinician preference rather than evidence of benefit. To assess the feasibility of using a structured template to provide holistic follow-up of patients in primary care from cancer diagnosis onwards. A two-phase mixed methods action research project. An electronic cancer ongoing review document (CORD) was first developed with patients and general practitioners, and used with patients with a new diagnosis of cancer. This was evaluated through documentary analysis of the CORDs, qualitative interviews with patients, family carers and health professionals and record reviews. The records of 107 patients from 13 primary care teams were examined and 45 interviews conducted. The document was started in 54% of people with newly diagnosed cancer, and prompted clear documentation of multidimension needs and understanding. General practitioners found using the document helped to structure consultations and cover psychosocial areas, but they reported it needed to be better integrated in their medical records with computerized prompts in place. Few clinicians discussed the review openly with patients, and the template was often completed afterwards. Anticipatory cancer care from diagnosis to cure or death, 'in primary care', is feasible in the U.K. and acceptable to patients, although there are barriers. The process promoted continuity of care and holism. A reliable system for proactive cancer care in general practice supported by hospital specialists may allow more survivorship care to be delivered in primary care, as in other long-term conditions.

Proactive cancer care in primary care: a mixed-methods study

PubMed Central

Murray, Scott A

2013-01-01

Background. Current models of post-treatment cancer care are based on traditional practices and clinician preference rather than evidence of benefit. Objectives. To assess the feasibility of using a structured template to provide holistic follow-up of patients in primary care from cancer diagnosis onwards. Methods. A two-phase mixed methods action research project. An electronic Cancer Ongoing Review Document (CORD) was first developed with patients and general practitioners, and used with patients with a new diagnosis of cancer. This was evaluated through documentary analysis of the CORDs, qualitative interviews with patients, family carers and health professionals and record reviews. Results. The records of 107 patients from 13 primary care teams were examined and 45 interviews conducted. The document was started in 54% of people with newly diagnosed cancer, and prompted clear documentation of multidimension needs and understanding. General practitioners found using the document helped to structure consultations and cover psychosocial areas, but they reported it needed to be better integrated in their medical records with computerized prompts in place. Few clinicians discussed the review openly with patients, and the template was often completed afterwards. Conclusions. Anticipatory cancer care from diagnosis to cure or death, ‘in primary care’, is feasible in the UK and acceptable to patients, although there are barriers. The process promoted continuity of care and holism. A reliable system for proactive cancer care in general practice supported by hospital specialists may allow more survivorship care to be delivered in primary care, as in other long-term conditions. PMID:23382502

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

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

Follow-up Care Education and Information: Identifying Cancer Survivors in Need of More Guidance.

PubMed

O'Malley, Denalee M; Hudson, Shawna V; Ohman-Strickland, Pamela A; Bator, Alicja; Lee, Heather S; Gundersen, Daniel A; Miller, Suzanne M

2016-03-01

Cancer survivors engage in cancer screenings and protective health behaviors at suboptimal rates despite their increased risk for future illness. Survivorship care plans and other educational strategies to prepare cancer survivors to adopt engaged roles in managing long-term follow-up care and health risks are needed. In a sample of cancer survivors, we identified patient characteristics and psychosocial predictors associated with increased follow-up care informational needs. Cross-sectional surveys were administered to early-stage breast and prostate survivors (N = 278; 68 % breast) at least 2 years post treatment from four community hospital programs in New Jersey between May 2012 and July 2013. Patient demographics, medical history, psychosocial characteristics (i.e., worries about the future, fear of disease recurrence, and patient activation), and perceptions of oncology and primary care were assessed. African-American survivors (AOR = 2.69, 95 % confidence interval [CI] 1.27-5.68) and survivors with higher comorbidity (AOR =1.16, CI 1.01-1.33) were more likely to want additional information to guide follow-up care. Adjusting for race and comorbidities, survivors who wanted more information to guide their follow-up care reported greater worries about the future (p < 0.05) and fears about disease recurrence (p < 0.05) compared to those who did not want additional information. Results emphasize the need to develop cancer survivorship educational strategies that are both responsive to the needs of specific populations (e.g., African-American survivors and patients with multiple comorbidities) and the psychosocial profiles that motivate requests for more extensive follow-up guidance.

Follow-up Care Education and Information: Identifying Cancer Survivors in Need of More Guidance

PubMed Central

O’Malley, Denalee M.; Hudson, Shawna V.; Ohman-Strickland, Pamela A; Bator, Alicja; Lee, Heather S.; Gundersen, Daniel A.; Miller, Suzanne M.

2015-01-01

Background Cancer survivors engage in cancer screenings and protective health behaviors at suboptimal rates despite their increased risk for future illness. Survivorship care plans and other educational strategies to prepare cancer survivors to adopt engaged roles in managing long-term follow-up care and health risks are needed. In a sample of cancer survivors, we identified patient characteristics and psychosocial predictors associated with increased follow-up care informational needs. Methods Cross-sectional surveys were administered to early stage breast and prostate survivors (N=278; 68% breast) at least two years post-treatment from four community hospital programs in New Jersey between May 2012-July 2013. Patient demographics, medical history, psychosocial characteristics (i.e., worries about the future, fear of disease recurrence, and patient activation) and perceptions of oncology and primary care were assessed. Results African American survivors (AOR =2.69, 95% confidence interval [CI] 1.27–5.68) and survivors with higher comorbidity (AOR=1.16, CI 1.01–1.33) were more likely to want additional information to guide follow-up care. Adjusting for race and comorbidities, survivors who wanted more information to guide their follow-up care reported greater worries about the future (p<0.05) and fears about disease recurrence (p<0.05) compared to those who did not want additional information. Conclusions Results emphasize the need to develop cancer survivorship educational strategies that are both responsive to the needs of specific populations (e.g., African American survivors and patients with multiple comorbidities) and the psychosocial profiles that motivate requests for more extensive follow-up guidance. PMID:25524391

Integrated Care Planning for Cancer Patients: A Scoping Review

PubMed Central

Arthurs, Erin; Gradin, Sharon; MacKinnon, Marnie; Sussman, Jonathan; Kukreti, Vishal

2017-01-01

Introduction: There has been a growing emphasis on the use of integrated care plans to deliver cancer care. However little is known about how integrated care plans for cancer patients are developed including featured core activities, facilitators for uptake and indicators for assessing impact. Methods: Given limited consensus around what constitutes an integrated care plan for cancer patients, a scoping review was conducted to explore the components of integrated care plans and contextual factors that influence design and uptake. Results: Five types of integrated care plans based on the stage of cancer care: surgical, systemic, survivorship, palliative and comprehensive (involving a transition between stages) are described in current literature. Breast, esophageal and colorectal cancers were common disease sites. Multi-disciplinary teams, patient needs assessment and transitional planning emerged as key features. Provider buy-in and training alongside informational technology support served as important facilitators for plan uptake. Provider-level measurement was considerably less robust compared to patient and system-level indicators. Conclusions: Similarities in design features, components and facilitators across the various types of integrated care plans indicates opportunities to leverage shared features and enable a management lens that spans the trajectory of a patient’s journey rather than a phase-specific silo approach to care. PMID:29588638

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.

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.

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.

The role of family physicians in cancer care: perspectives of primary and specialty care providers

PubMed Central

Easley, J.; Miedema, B.; O’Brien, M.A.; Carroll, J.; Manca, D.; Webster, F.; Grunfeld, E.

2017-01-01

Background Currently, the specific role of family physicians (fps) in the care of people with cancer is not well defined. Our goal was to explore physician perspectives and contextual factors related to the coordination of cancer care and the role of fps. Methods Using a constructivist grounded theory approach, we conducted telephone interviews with 58 primary and cancer specialist health care providers from across Canada. Results The participants—21 fps, 15 surgeons, 12 medical oncologists, 6 radiation oncologists, and 4 general practitioners in oncology—were asked to describe both the role that fps currently play and the role that, in their opinion, fps should play in the future care of cancer patients across the cancer continuum. Participants identified 3 key roles: coordinating cancer care, managing comorbidities, and providing psychosocial care to patients and their families. However, fps and specialists discussed many challenges that prevent fps from fully performing those roles: ■ The fps described communication problems resulting from not being kept “in the loop” because they weren’t copied on patient reports and also the lack of clearly defined roles for all the various health care providers involved in providing care to cancer patients.■ The specialists expressed concerns about a lack of patient access to fp care, leaving specialists to fill the care gaps. The fps and specialists both recommended additional training and education for fps in survivorship care, cancer screening, genetic testing, and new cancer treatments. Conclusions Better communication, more collaboration, and further education are needed to enhance the role of fps in the care of cancer patients. PMID:28490920

"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.

The primary health care physician and the cancer patient: tips and strategies for managing sexual health

PubMed Central

Zhou, Eric S.; Nekhlyudov, Larissa

2015-01-01

There is a large and growing population of long-term cancer survivors. Primary care physicians (PCPs) are playing an increasingly greater role in the care of these patients across the continuum of cancer survivorship. In this role, PCPs are faced with the responsibility of managing a range of medical and psychosocial late effects of cancer treatment. In particular, the sexual side effects of treatment which are common and have significant impact on quality of life for the cancer survivor, often go unaddressed. This is an area of clinical care and research that has received increasing attention, highlighted by the presentation of this special issue on Cancer and Sexual Health. The aims of this review are 3-fold. First, we seek to overview common presentations of sexual dysfunction related to major cancer diagnoses in order to give the PCP a sense of the medical issues that the survivor may present with. Barriers to communication about sexual health issues between patient/PCPs in order are also described in order to emphasize the importance of PCPs initiating this important conversation. Next, we provide strategies and resources to help guide the PCP in the management of sexual dysfunction in cancer survivors. Finally, we discuss case examples of survivorship sexual health issues and highlight the role that a PCP can play in each of these case examples. PMID:26816826

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.

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

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.

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.

[A Survey of the Factors of Influence and Interventional Strategies for Breast Cancer Survivors' Transition Care Across Multiple Theoretical Perspectives].

PubMed

Chao, Yu-Huan; Lee, Tzu-I; Sheu, Shuh-Jen

2018-02-01

Breast cancer significantly threatens the life of women, while the adverse effects of cancer treatment degrade quality of life and psychological well-being. The quality of transitional care following the completion of treatment significantly affects the ability of breast cancer patients to transition successfully into survivorship. This paper introduces multiple theoretical perspectives and provides an overview of the tenets of each in order to identify the positions of breast cancer survivors and to highlight the factors and strategies that influence their transitional care. The theoretical perspectives that are introduced include the social-ecological model, transition theory, and the strengths perspective. In order to improve the holistic care of women with breast cancer, factors relevant to transition are categorized into the individual, interpersonal, organizational, community, and policy levels. Furthermore, empirical interventions, which are based on the respective advantages of the various levels of the social-ecological model, are proposed in order to conform to the sociocultural context and clinical practices. Healthcare providers should leverage the strengths and resources at each level to develop feasible strategies and to provide quality of care in order to assist breast cancer patients to transition successfully from treatment to survivorship and to holistically improve their subsequent quality of life and function.

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.

Quality of Life among Immigrant Latina Breast Cancer Survivors: Realities of Culture and Enhancing Cancer Care

PubMed Central

Lopez-Class, Maria; Perret-Gentil, Monique; Kreling, Barbara; Caicedo, Larisa; Mandelblatt, Jeanne; Graves, Kristi D.

2012-01-01

Objectives Breast cancer is the most common cancer among Latinas. This study examined social, cultural, and health care system factors that impact quality of life and survivorship experiences of Latina immigrant breast cancer survivors. Design We interviewed Latina breast cancer survivors (n=19) and, based on the interview findings, conducted two focus groups (n=9). Research staff translated transcripts from Spanish into English. Two trained raters reviewed the content and identified themes. Thematic content analysis was used to categorize and organize data. Results Participants were largely mono-lingual in Spanish, predominantly from Central and South America and most (68%) had lived in the U.S. for 10 or more years. All women were diagnosed and treated in the U.S. and were an average of 3.1 years from diagnosis. Women’s survivorship experiences appeared to be shaped by cultural beliefs and experiences as immigrants such as secrecy/shame about a breast cancer diagnosis, feelings of isolation, importance of family support (familism), challenges with developing social relationships in the U.S. (less personalismo), and, for some, their partner’s difficulty with showing emotional support (machismo). Navigating the U.S. medical system and language barriers were additional challenges in participants’ health care interactions. Conclusion Latina breast cancer survivors adhere to certain cultural values and face unique issues as immigrants, potentially influencing overall quality of life and doctor-patient communication. Efforts to improve Latina immigrant breast cancer survivors’ quality of life could include increased assessment of psychosocial functioning and referral to social support services, culturally-sensitive navigation programs and consistent use of appropriately trained interpreters. PMID:21706194

Physical and mental health among cancer survivors: considerations for long-term care and quality of life.

PubMed

Naughton, Michelle J; Weaver, Kathryn E

2014-01-01

The physical and mental health of cancer patients needs to be addressed not only during active treatment but also throughout the continuum of survivorship care. This commentary provides an overview of issues pertinent to cancer survivors, with an emphasis on mental health issues and recommendations for annual clinical screening and monitoring using recently published guidelines from the American Society of Clinical Oncology.

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.

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

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.

Promoting the Shared-Care Model for Adolescent and Young Adults With Cancer: Optimizing Referrals and Care Coordination With Primary Care Providers.

PubMed

Kinahan, Karen E; Kircher, Sheetal; Altman, Jessica; Rademaker, Alfred; Salsman, John M; Didwania, Aarati; O'Brien, Bridget; Patel, Alpa C; Sanford, Stacy D

2017-01-01

The "shared-care model" for patients with cancer involves care coordination between primary care providers (PCPs) and oncologists, with the goal of optimizing survivorship care. However, a high proportion of adolescent and young adult (AYA) cancer survivors do not have a PCP. Study objectives were to increase the percentage of AYAs with a PCP documented in the electronic medical record (EMR) via the use of a best practice advisory (BPA) or "stopgap" intervention; to increase communication between providers by the number of routed clinic notes; and to assess oncology providers' attitudes/beliefs about the model and intervention. Data were collected for the 6 months before implementation of the BPA to determine the percentage of AYAs with a PCP and the number of notes routed to providers (time point 1 [T1]). The same data were collected at time point 2 (T2) after the BPA had been implemented for 6 months. Oncology providers participated in an education video module and an online survey at T1 and a survey at T2. At T1, 47.1% of 756 AYAs had a documented PCP in the EMR. At T2, the percentage increased to 55.1% (P<.002). The number of routed notes did not change significantly from T1 to T2. Providers that completed the intervention survey agreed/strongly agreed that the shared-care model is a desirable model of care (T1 = 86%; T2 = 93%) and that a BPA is useful for facilitating PCP referrals (T1 = 76%; T2 = 39%). This BPA is feasible for increasing the percentage of AYAs with a PCP documented in the EMR and could potentially lead to increased PCP referral and communication among providers for the benefit of long-term survivorship care. Providers generally agree with the shared-care model; however, the BPA implementation requires modification. Copyright © 2017 by the National Comprehensive Cancer Network.

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

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

Innovation in survivor care: group visits.

PubMed

Trotter, Kathryn; Frazier, Alana; Hendricks, Colleen K; Scarsella, Heidi

2011-04-01

The Centering Cancer Survivorship (CCS) follow-up care program is an innovation in healthcare delivery that meets the needs of cancer survivors and cancer centers. Piloted in a breast cancer clinic, the program provides an avenue for provision of psychological support and health-promotion activities, as well as surveillance for recurrence or late effects. The program empowers each survivor by enlisting her to produce a written breast cancer survivorship care plan for personal use and to share with her primary care provider. Concurrently, this innovation should enhance the viability of the primary cancer center by freeing appointment slots for oncologists who provide expensive therapies to newly diagnosed patients. The CCS program's central feature is the implementation of a multidisciplinary clinic designated specifically for breast cancer survivors in which follow-up care is provided through a group visit medical model. This model of care provides opportunities for health assessment, patient empowerment, and patient education within a framework of social support from peers with similar issues. The group visit model may be well suited to addressing the unique chronic healthcare needs of breast cancer survivors. Further evaluation is needed to verify cost-benefit analysis.

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

Exploring the role of occupational therapy in caring for cancer survivors in Australia: A cross sectional study.

PubMed

Buckland, Nicole; Mackenzie, Lynette

2017-10-01

With increasing rates of cancer survival in Australia, more people are living with long-term side effects of cancer and its treatment, and cancer survivorship is now considered a distinct phase of cancer care. While occupational therapists play an integral role in multidisciplinary care for people with chronic conditions, there is little evidence documenting the occupational therapy role for people living with chronic cancer-related conditions. This study aimed to explore the views of Australian occupational therapists about current practice and what constitutes best practice for cancer survivors. A cross-sectional online survey was developed and distributed via emailed invitations to the Occupational Therapy Australia membership to collect responses from occupational therapists in a range of locations and practice settings around Australia. A total of 204 completed surveys were returned (response rate of 4%). More than 70% (n = 143) of respondents worked with people with cancer at least sometimes and most worked in acute (13.8%, n = 28) or community (11.2%, n = 23) settings. Participants rated equipment provision as the most common intervention (94%, n = 192), followed by energy conservation (91%, n = 185) and pressure care (78%, n = 160). Lack of funding for occupational therapy positions and a lack of recognition of the role of occupational therapy by health professionals and consumers were identified as key barriers to survivorship care. Research is needed to provide evidence supporting the role and practice of occupational therapy with cancer survivors. Collaborative work with multidisciplinary teams is needed to develop long-term routine treatment pathways that include occupational therapy interventions. © 2017 Occupational Therapy Australia.

Perceptions of Cancer Care and Clinical Trials in the Black Community: Implications for Care Coordination Between Oncology and Primary Care Teams.

PubMed

Sprague Martinez, Linda; Freeman, Elmer R; Winkfield, Karen M

2017-09-01

communities and increasing awareness of clinical trials. However, PCPs and CHCs are often stretched to capacity with caring for their communities. This leaves the oncology community well positioned to create programs to bridge the communication gaps and provide resources necessary to support oncologic care along the cancer continuum, from prevention through survivorship. © AlphaMed Press 2017.

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.

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

PubMed

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

2016-07-08

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

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

PubMed Central

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

2016-01-01

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

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

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

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.

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 plans: are randomized controlled trials assessing outcomes that are relevant to stakeholders?

PubMed

Birken, Sarah A; Urquhart, Robin; Munoz-Plaza, Corrine; Zizzi, Alexandra R; Haines, Emily; Stover, Angela; Mayer, Deborah K; Hahn, Erin E

2018-03-23

The purpose of this study was to compare outcomes assessed in extant randomized controlled trials (RCTs) to outcomes that stakeholders expect from survivorship care plans (SCPs). To facilitate the transition from active treatment to follow-up care for the 15.5 million US cancer survivors, many organizations require SCP use. However, results of several RCTs of SCPs' effectiveness have been null, possibly because they have evaluated outcomes on which SCPs should be expected to have limited influence. Stakeholders (e.g., survivors, oncologists) may expect outcomes that differ from RCTs' outcomes. We identified RCTs' outcomes using a PubMed literature review. We identified outcomes that stakeholders expect from SCPs using semistructured interviews with stakeholders in three healthcare systems in the USA and Canada. Finally, we mapped RCTs' outcomes onto stakeholder-identified outcomes. RCT outcomes did not fully address outcomes that stakeholders expected from SCPs, and RCTs assessed outcomes that stakeholders did not expect from SCPs. RCTs often assessed outcomes only from survivors' perspectives. RCTs of SCPs' effectiveness have not assessed outcomes that stakeholders expect. To better understand SCPs' effectiveness, future RCTs should assess outcomes of SCP use that are relevant from the perspective of multiple stakeholders. SCPs' effectiveness may be optimized when used with an eye toward outcomes that stakeholders expect from SCPs. For survivors, this means using SCPs as a map to guide them with respect to what kind of follow-up care they should seek, when they should seek it, and from whom they should seek it.

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

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

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

Cognitive effects of cancer systemic therapy: implications for the care of older patients and survivors.

PubMed

Mandelblatt, Jeanne S; Jacobsen, Paul B; Ahles, Tim

2014-08-20

The number of patients with cancer who are age 65 years or older (hereinafter "older") is increasing dramatically. One obvious aspect of cancer care for this group is that they are experiencing age-related changes in multiple organ systems, including the brain, which complicates decisions about systemic therapy and assessments of survivorship outcomes. There is a consistent body of evidence from studies that use neuropsychological testing and neuroimaging that supports the existence of impairment following systemic therapy in selected cognitive domains among some older patients with cancer. Impairment in one or more cognitive domains could have important effects in the daily lives of older patients. However, an imperfect understanding of the precise biologic mechanisms underlying cognitive impairment after systemic treatment precludes development of validated methods for predicting which older patients are at risk. From what is known, risks may include lifestyle factors such as smoking, genetic predisposition, and specific comorbidities such as diabetes and cardiovascular disease. Risk also interacts with physiologic and cognitive reserve, because even at the same chronological age and with the same number of illnesses, older patients vary from having high reserve (ie, biologically younger than their age) to being frail (biologically older than their age). Surveillance for the presence of cognitive impairment is also an important component of long-term survivorship care with older patients. Increasing the workforce of cancer care providers who have geriatrics training or who are working within multidisciplinary teams that have this type of expertise would be one avenue toward integrating assessment of the cognitive effects of cancer systemic therapy into routine clinical practice. © 2014 by American Society of Clinical Oncology.

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

PubMed Central

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

2014-01-01

Ovarian cancer (OvCa) is the most lethal gynecologic disease in the United States, with an overall 5-year survival rate of 44.5%, about half of the 89.2% for all breast cancer patients. To identify factors that possibly contribute to the long-term survivorship of women with OvCa, we conducted a comprehensive online Ovarian Cancer Survivorship Survey from 2009 to 2013. This paper presents the design and implementation of our survey, introduces its resulting data source, the OVA-CRADLE™ (Clinical Research Analytics and Data Lifecycle Environment), and illustrates a sample application of the survey and data by an analysis of prediagnosis symptoms, using text mining and statistics. The OVA-CRADLE™ is an application of our patented Physio-MIMI technology, facilitating Web-based access, online query and exploration of data. The prediagnostic symptoms and association of early-stage OvCa diagnosis with endometriosis provide potentially important indicators for future studies in this field. PMID:25861211

Health-related quality of life and care satisfaction outcomes: Informing psychosocial oncology care among Latina and African-American young breast cancer survivors.

PubMed

Ashing, Kimlin Tam; George, Marshalee; Jones, Veronica

2018-04-01

When breast cancer occurs in young women, the medical, physical, psychosocial, and overall impacts can be more severe warranting targeted medical and psychosocial oncology care. Yet, despite their risk for poorer survival and survivorship outcomes, little research has focused on this group with critical gaps concerning ethnic minorities who are particularly medically vulnerable. Therefore, this preliminary study examined demographic characteristics and patient centered outcomes, ie, health-related quality of life (HRQOL), quality care satisfaction to inform targeted psychosocial oncology care among African-American and Latinas young breast cancer survivors (YBCS). A total of 116 African-American and Latina YBCS aged ≥21 to 50 years were recruited from cancer registries and community agencies. Based on prior research and the literature, Latinas were categorized into English language proficient (ELP) and Spanish language proficient (SLP) based on their choice of language to conduct the study including completion of the measures. SLP Latinas reported lower educational attainment and income (P < 0.001) and were more likely to report having a mastectomy (P < 0.01) but less likely to report breast reconstruction (P < 0.05). Satisfaction with care was correlated with patient-provider communication and overall HRQOL (P < 0.01) and physical, social/family, emotional and functional wellbeing (P < 0.01). SLP Latinas had lower emotional wellbeing than African-American YBCS (P < 0.01) and lower functional wellbeing than ELP Latina YBCS (P < 0.05). SLP Latina YBCS were less satisfied with their care compared with African-American and ELP Latina YBCS (P < 0.01). Financial toxicity seems to directly influence both access to care and quality care and survivorship outcomes. Investigating demographic characteristics and medical outcomes including HRQOL outcomes and satisfaction with care among ethnic minority YBCS is needed to advance the science as well as assist

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

Treatment summaries, follow-up care instructions, and patient navigation: could they be combined to improve cancer survivor's receipt of follow-up care?

PubMed

Jabson, Jennifer M

2015-12-01

Cancer survivors require follow-up care to ensure early detection of recurrence, management of late/long term effects, preventive screening for early detection of second primary malignancies, as well as other forms of preventive care. But not all survivors receive necessary follow-up care. Combining survivorship care plans and patient navigation may be a successful strategy to improve survivor's receipt of necessary follow-up care. Using data from the 2010 LIVESTRONG online survey of cancer survivors (N = 3854), this study tested associations between receipt of follow-up care instructions (FCI) and treatment summaries (TS) paired with patient navigation (PN), and survivor's receipt of cancer surveillance, preventive cancer screening, and attendance at regular medical appointments. Survivors who received FCI, TS, and patient navigation were the most likely to report attendance at all medical appointments (aOR 4.17, 95% CI 2.30, 7.57, p ≤ .001) and receipt of preventive cancer screening (aOR 3.56, 95% CI 2.28, 5.55, p ≤ .001). Likelihood of receiving follow-up care was greatest when survivors received FCI, TS, and PN. This pairing appeared to be most beneficial for survivor's attendance at medical appointments and receipt of preventive cancer screening. By improving attendance at medical appointments and prevention cancer screening, pairing SCP and PN could benefit survivors through reduced recurrence, earlier recurrence detection, and prevention of second primaries.

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.

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

ProCare Trial: a phase II randomized controlled trial of shared care for follow-up of men with prostate cancer.

PubMed

Emery, Jon D; Jefford, Michael; King, Madeleine; Hayne, Dickon; Martin, Andrew; Doorey, Juanita; Hyatt, Amelia; Habgood, Emily; Lim, Tee; Hawks, Cynthia; Pirotta, Marie; Trevena, Lyndal; Schofield, Penelope

2017-03-01

To test the feasibility and efficacy of a multifaceted model of shared care for men after completion of treatment for prostate cancer. Men who had completed treatment for low- to moderate-risk prostate cancer within the previous 8 weeks were eligible. Participants were randomized to usual care or shared care. Shared care entailed substituting two hospital visits with three visits in primary care, a survivorship care plan, recall and reminders, and screening for distress and unmet needs. Outcome measures included psychological distress, prostate cancer-specific quality of life, satisfaction and preferences for care and healthcare resource use. A total of 88 men were randomized (shared care n = 45; usual care n = 43). There were no clinically important or statistically significant differences between groups with regard to distress, prostate cancer-specific quality of life or satisfaction with care. At the end of the trial, men in the intervention group were significantly more likely to prefer a shared care model to hospital follow-up than those in the control group (intervention 63% vs control 24%; P<0.001). There was high compliance with prostate-specific antigen monitoring in both groups. The shared care model was cheaper than usual care (shared care AUS$1411; usual care AUS$1728; difference AUS$323 [plausible range AUS$91-554]). Well-structured shared care for men with low- to moderate-risk prostate cancer is feasible and appears to produce clinically similar outcomes to those of standard care, at a lower cost. © 2016 The Authors BJU International © 2016 BJU International Published by John Wiley & Sons Ltd.

Pediatric Supportive Care (PDQ®)—Health Professional Version

Cancer.gov

Pediatric supportive care includes managing issues from the cancer diagnosis, through treatment, and into adult survivorship. Get detailed information addressing pediatric supportive care including psychologic, family, and end-of-life concerns in this clinician summary.

Association between information provision and supportive care needs among ovarian cancer survivors: A cross-sectional study from the PROFILES registry.

PubMed

Rietveld, Mark J A; Husson, Olga; Vos, M C Caroline; van de Poll-Franse, Lonneke V; Ottevanger, P B Nelleke; Ezendam, Nicole P M

2018-04-23

To examine the association between satisfaction with perceived information provision during diagnosis and treatment and supportive care needs in ovarian cancer survivors. In 2012, women (n = 348) diagnosed with ovarian cancer, as registered between 2000 and 2010 in the Netherlands Cancer Registry, received a questionnaire including questions on the perceived level of, and satisfaction with, information received (EORTC QLQ-INFO25) and supportive care needs (Cancer Survivors' Unmet Needs Measure). Of 348 women, 191 (55%) responded. Of all participants, 35% were not satisfied (n = 65) with the perceived amount of information received. Participants who were satisfied with the amount of information reported significantly higher levels of perceived information on disease, medical tests, treatment, and other services. Patients not satisfied with information provision had a higher total number of needs and a higher number of unmet needs than women satisfied with information provision. Multivariable linear regression analysis showed that satisfaction with information provision was negatively associated with the total number of unmet needs (β = -0.20, P = .03) after adjustment for potential confounding clinical and sociodemographic factors. Ovarian cancer survivors satisfied with the information provision during treatment reported fewer unmet needs during survivorship. Optimization of information provision for ovarian cancer patients during initial diagnosis and treatment may contribute to a decrease in unmet needs during survivorship. Copyright © 2018 John Wiley & Sons, Ltd.

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.

Optimizing clinical and organizational practice in cancer survivor transitions between specialized oncology and primary care teams: a realist evaluation of multiple case studies.

PubMed

Tremblay, Dominique; Prady, Catherine; Bilodeau, Karine; Touati, Nassera; Chouinard, Maud-Christine; Fortin, Martin; Gaboury, Isabelle; Rodrigue, Jean; L'Italien, Marie-France

2017-12-16

Cancer is now viewed as a chronic disease, presenting challenges to follow-up and survivorship care. Models to shift from haphazard, suboptimal and fragmented episodes of care to an integrated cancer care continuum must be developed, tested and implemented. Numerous studies demonstrate improved care when follow-up is assured by both oncology and primary care providers rather than either group alone. However, there is little data on the roles assumed by specialized oncology teams and primary care providers and the extent to which they work together. This study aims to develop, pilot test and measure outcomes of an innovative risk-based coordinated cancer care model for patients transitioning from specialized oncology teams to primary care providers. This multiple case study using a sequential mixed-methods design rests on a theory-driven realist evaluation approach to understand how transitions might be improved. The cases are two health regions in Quebec, Canada, defined by their geographic territory. Each case includes a Cancer Centre and three Family Medicine Groups selected based on differences in their determining characteristics. Qualitative data will be collected from document review (scientific journal, grey literature, local documentation), semi-directed interviews with key informants, and observation of care coordination practices. Qualitative data will be supplemented with a survey to measure the outcome of the coordinated model among providers (scope of practice, collaboration, relational coordination, leadership) and patients diagnosed with breast, colorectal or prostate cancer (access to care, patient-centredness, communication, self-care, survivorship profile, quality of life). Results from descriptive and regression analyses will be triangulated with thematic analysis of qualitative data. Qualitative, quantitative, and mixed methods data will be interpreted within and across cases in order to identify context-mechanism associations that explain

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

Policy statement on multidisciplinary cancer care.

PubMed

Borras, Josep M; Albreht, Tit; Audisio, Riccardo; Briers, Erik; Casali, Paolo; Esperou, Hélène; Grube, Birgitte; Hamoir, Marc; Henning, Geoffrey; Kelly, Joan; Knox, Susan; Nabal, Maria; Pierotti, Marco; Lombardo, Claudio; van Harten, Wim; Poston, Graeme; Prades, Joan; Sant, Milena; Travado, Luzia; Valentini, Vincenzo; van de Velde, Cornelis; van den Bogaert, Saskia; van den Bulcke, Marc; van Hoof, Elke; van den Neucker, Ingrid; Wilson, Robin

2014-02-01

Cancer care is undergoing an important paradigm shift from a disease-focused management to a patient-centred approach, in which increasingly more attention is paid to psychosocial aspects, quality of life, patients' rights and empowerment and survivorship. In this context, multidisciplinary teams emerge as a practical necessity for optimal coordination among health professionals and clear communication with patients. The European Partnership for Action Against Cancer (EPAAC), an initiative launched by the European Commission in 2009, addressed the multidisciplinary care from a policy perspective in order to define the core elements that all tumour-based multidisciplinary teams (MDTs) should include. To that effect, a working group conference was held in January 2013 within the EPAAC Work Package 7 (on Healthcare) framework. The consensus group consisted of high-level representatives from the following European scientific societies, patient associations and stakeholders: European CanCer Organisation (ECCO), European SocieTy for Radiology & Oncology (ESTRO), European Society for Medical Oncology (ESMO), European Society of Surgical Oncology (ESSO), International Society of Geriatric Oncology (SIOG), European Association for Palliative Care (EAPC), European Oncology Nursing Society (EONS), International Psycho-Oncology Society (IPOS),European Cancer Patient Coalition (ECPC), EuropaColon, Europa Donna - The European Breast Cancer Coalition, Association of European Cancer Leagues (ECL), Organisation of European Cancer Institutes (OECI), EUSOMA - European Society of Breast Cancer Specialists, European Hospital and Healthcare Federation (HOPE) and EPAAC Work Packages 5 (Health promotion and prevention), 7, 8 (Research), 9 (Information systems) and 10 (Cancer plans). A background document with a list of 26 core issues drawn from a systematic review of the literature was used to guide the discussion. Five areas related to MDTs were covered: care objectives, organisation

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

The Role of the Advanced Practice Nurse in Geriatric Oncology Care.

PubMed

Morgan, Brianna; Tarbi, Elise

2016-02-01

To describe how the Advanced Practice Nurse (APN) is uniquely suited to meet the needs of older adults throughout the continuum of cancer, to explore the progress that APNs have made in gero-oncology care, and make suggestions for future directions. Google Scholar, PubMed, and CINAHL. Search terms included: "gero-oncology," "geriatric oncology," "Advanced Practice Nurse," "Nurse Practitioner," "older adult," "elderly," and "cancer." Over the last decade, APNs have made advances in caring for older adults with cancer by playing a role in prevention, screening, and diagnosis; through evidence-based gero-oncology care during cancer treatment; and in designing tailored survivorship care models. APNs must combat ageism in treatment choice for older adults, standardize comprehensive geriatric assessments, and focus on providing person-centered care, specifically during care transitions. APNs are well-positioned to help understand the complex relationship between risk factors, geriatric syndromes, and frailty and translate research into practice. Palliative care must expand beyond specialty providers and shift toward APNs with a focus on early advanced care planning. Finally, APNs should continue to establish multidisciplinary survivorship models across care settings, with a focus on primary care. Copyright © 2015 Elsevier Inc. All rights reserved.

Multidisciplinary Care.

PubMed

Daly, Megan E; Riess, Jonathan W

Optimal multidisciplinary care of the lung cancer patient at all stages should encompass integration of the key relevant medical specialties, including not only medical, surgical, and radiation oncology, but also pulmonology, interventional and diagnostic radiology, pathology, palliative care, and supportive services such as physical therapy, case management, smoking cessation, and nutrition. Multidisciplinary management starts at staging and tissue diagnosis with pathologic and molecular phenotyping, extends through selection of a treatment modality or modalities, management of treatment and cancer-related symptoms, and to survivorship and end-of-life care. Well-integrated multidisciplinary care may reduce treatment delays, improve cancer-specific outcomes, and enhance quality of life. We address key topics and areas of ongoing investigation in multidisciplinary decision making at each stage of the lung cancer treatment course for early-stage, locally advanced, and metastatic lung cancer patients.

Exploring Advance Care Planning in Taiwanese Indigenous Cancer Survivors: Proposal for a Pilot Case-Control Study.

PubMed

Li, In-Fun; Hsiung, Yvonne

2017-12-21

Research on Taiwanese indigenous cancer survivors' end-of-life (EOL) planning is still in its infancy, despite recent government and societal efforts to promote quality EOL care. Previous national studies in Taiwan have characterized indigenous peoples as a socioeconomically disadvantaged minority group. Compared with their mainstream cohorts, these remote residents are vulnerable to multiple social welfare problems, receiving and accessing little in the way of health care in rural mountain areas. Although advance care planning (ACP) has been shown to help patients achieve better quality of dying, very little is known about indigenous intentions for such interventions. Relevant studies are scarce in Taiwan, and programs for cancer survivors have been based almost entirely on nonindigenous populations. Since there has been no research on Taiwanese indigenous people's aims for ACP, there is a need to understand the impact of survivorship on ACP readiness among those who are currently living with, through, and beyond cancer. We aim to identify differences in ACP intent and readiness among indigenous peoples with and without cancer diagnoses. We will identify the impact of factors such as tribal cultural beliefs and quality of life along with cancer exposure on the outcome of ACP readiness differences. In particular, we will examine the effects of ACP knowledge from previous ACP participation, EOL care experiences, and personal registry status of Do-Not-Resuscitate (DNR) in the national database. A secondary objective is to describe indigenous people's intent to participate in public education related to EOL planning. A descriptive case-control study (N=200) is proposed where controls are matched to cases' attributes of age, gender, and cancer diagnosis. This matching analysis allows assessment of cancer as an exposure while taking into account age and gender as confounding variables. We are currently in the process of training personnel and extracting clinical and

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.

[Care Plan for Resuming the Physical Activity of Patients With Pancreatic Cancer and Diabetes After Surgery].

PubMed

Yang, Hui-Ting; Wu, Mei-Chih; Shun, Shiow-Ching

2018-02-01

Many barriers influence the ability of postoperative cancer patients to reengage in normal physical activities. Training programs have been shown to be effective in helping restore physical activity in patients and in reducing the care burdens of family members. Nurses cannot use physical activity guidelines in their care plan to assess individual needs. The clinical practice guidelines for physical activity in survivorship were published by the National Comprehensive Cancer Network (NCCN) in 2016. These guidelines are used to assess patients' physical status, curable factors, physical barriers, and risk of postoperative pancreatic cancer and diabetes. In line with this assessment tool, the physical activity guidelines, and the recommendations for cancer patients, the authors planned a physical activity training program that addressed the actual needs of patients under their care. Further, the authors provided special notes for a diabetic diet that helped reduce the barriers to resuming physical activity and enhanced independent care efficacy. Meanwhile, the authors encouraged family members to participate in patient-care activities and family mental-health support and to promote patient participation in the training program in order to increase quality of life. The present project demonstrates that this care plan may provide an effective guide for nurses to help other cancer patients resume physical activity.

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.

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.

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

2014 President's plenary international psycho-oncology society: moving toward cancer care for the whole patient.

PubMed

Bultz, Barry D; Travado, Luzia; Jacobsen, Paul B; Turner, Jane; Borras, Josep M; Ullrich, Andreas W H

2015-12-01

The International Psycho-oncology Society (IPOS) has just celebrated its 30th anniversary. The growth of psychosocial oncology has been exponential, and this relatively new field is becoming a core service that focuses on prevention, reducing the burden of cancer, and enhancing the quality of life from time of diagnosis, through treatment, survivorship, and palliative care. Looking back over the past 30 years, we see that cancer care globally has evolved to a new and higher standard. Today, 'cancer care for the whole patient' is being accomplished with an evidence-based model that addresses psychosocial needs and integrates psycho-oncology into the treatment and care of patients. The President's Plenary Session in Lisbon, Portugal, highlighted the IPOS Mission of promoting global excellence in psychosocial care of people affected by cancer through our research, public policy, advocacy, and education. The internationally endorsed IPOS Standard of Quality Cancer Care, for example, clearly states the necessity of integrating the psychosocial domain into routine care, and that distress should be measured as the sixth vital sign after temperature, blood pressure, pulse, respiratory rate, and pain. The plenary paper also discussed the global progress being made in Europe, North America, and Australia in providing quality cancer care for the whole patient. Collaborative partnerships between IPOS and organizations such as the European Partnership Action Against Cancer and the World Health Organization are essential in building capacity for the delivery of high-quality psycho-oncology services in the future. Copyright © 2015 John Wiley & Sons, Ltd.

Problems in transition and quality of care: perspectives of breast cancer survivors

PubMed Central

Roundtree, Aimee Kendall; Giordano, Sharon H.; Price, Andrea; Suarez-Almazor, Maria E.

2011-01-01

Purpose We conducted a qualitative study to explore breast cancer survivors’ perceptions and attitudes about their current healthcare utilization, screening, and information needs. Methods We completed eight focus groups of breast cancer survivors. We included women, adult survivors, with an initial diagnosis of breast cancer in the year 2000, treated, and without a recurrence as per medical record. To analyze transcripts, we used grounded theory methods, wherein unexpected themes and direct answers emerged from consensus between co-coders. Results Focus groups included 33 participants, the majority of whom were white (84.8%), college-educated (66.7%), and covered by private medical insurance (75.7%) or Medicare (27.3%). Participants’ perceptions and attitudes about care were framed in terms of personal experiences (including facing barriers to screening, feeling in limbo in the healthcare system, having problems with communication with and between physicians, confusion about symptoms, and using self-prescribe remedies), personal attitudes (including strong opinions about what survivorship means, concerns about recurrence, and changes in self-perception and agency), and social influences (including modeling others’ behaviors, changes in social life, and listening to family). Conclusion Survivorship attitudes, recurrence fears, memories, and self-perceptions were influential personal factors in addition to self-efficacy. Solutions such as providing a cancer treatment summary might resolve many of the problems by consolidating and making readily available the numerous medical history and recommendations that survivors accrue over time, switching from provider to provider. Clinicians must also implement communication changes in their interactions with patients to enhance positive attitudes and behaviors, and leverage social influences. PMID:21140173

Effectiveness of guideline dissemination and implementation strategies on health care professionals' behaviour and patient outcomes in the cancer care context: a systematic review protocol.

PubMed

Tomasone, Jennifer R; Chaudhary, Rushil; Brouwers, Melissa C

2015-08-25

Health care professionals (HCPs) are able to make effective decisions regarding patient care through the use of systematically developed clinical practice guidelines (CPGs). These recommendations are especially important in a cancer health care context as patients are exposed to a multitude of interdisciplinary HCPs offering high-quality care throughout diagnosis, treatment, survivorship and palliative care. Although a large number of CPGs targeted towards cancer are widely disseminated, it is unknown whether implementation strategies targeting the use of these guidelines are effective in effecting HCP behaviour and patient outcomes in the cancer care context. The purpose of this systematic review will be to determine the effectiveness of different CPG dissemination and implementation interventions on HCPs' behaviour and patient outcomes in the cancer health care context. Five electronic databases (CINAHL, the Cochrane Controlled Trials Register, MEDLINE via Ovid, EMBASE via Ovid and PsycINFO via Ovid) will be searched to include all studies examining the dissemination and/or implementation of CPGs in a cancer care setting targeting all HCPs. CPG implementation strategies will be included if the CPGs were systematically developed (e.g. literature review/evidence-informed, expert panel, evidence appraisal). The studies will be limited to randomized controlled trials, controlled clinical trials and quasi-experimental (interrupted time series, controlled before-and-after designs) studies. Two independent reviewers will assess articles for eligibility, data extraction and quality appraisal. The aim of this review is to inform cancer care health care professionals and policymakers about evidence-based implementation strategies that will allow for effective use of CPGs. PROSPERO CRD42015019331.

Psychosocial standards of care for children with cancer and their families: A national survey of pediatric oncology social workers.

PubMed

Jones, Barbara; Currin-Mcculloch, Jennifer; Pelletier, Wendy; Sardi-Brown, Vicki; Brown, Peter; Wiener, Lori

2018-04-01

In 2015, an interdisciplinary group of psychosocial experts developed The Standards of Psychosocial Care for Children with Cancer and Their Families. This paper presents data from a national survey of pediatric oncology social workers and their experiences in delivering psychosocial care to children and families. In total, 107 social workers from 81 cancer institutions participated in a 25-item online survey that mirrored the 15 Standards for Psychosocial Care. Both closed and open-ended questions were included. Social work participants reported that psychosocial support is being provided at most cancer centers surveyed, primarily by social workers and child life specialists, addressing adaptation to the cancer diagnosis, treatment, and transitions into survivorship or end-of-life care and bereavement. While social workers reported offering comprehensive services throughout the cancer trajectory, many of the 2015 Standards are not being systematically implemented. Areas for improvement include funding for psychosocial support staff and programs, incorporation of standardized assessment measures, assessment for financial burden throughout treatment and beyond, consistent access to psychology and psychiatry, integrated care for parents and siblings, and more inclusion of palliative care services from time of diagnosis.

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.

Cancer Care and Control as a Human Right: Recognizing Global Oncology as an Academic Field.

PubMed

Eniu, Alexandru E; Martei, Yehoda M; Trimble, Edward L; Shulman, Lawrence N

2017-01-01

The global burden of cancer incidence and mortality is on the rise. There are major differences in cancer fatality rates due to profound disparities in the burden and resource allocation for cancer care and control in developed compared with developing countries. The right to cancer care and control should be a human right accessible to all patients with cancer, regardless of geographic or economic region, to avoid unnecessary deaths and suffering from cancer. National cancer planning should include an integrated approach that incorporates a continuum of education, prevention, cancer diagnostics, treatment, survivorship, and palliative care. Global oncology as an academic field should offer the knowledge and skills needed to efficiently assess situations and work on solutions, in close partnership. We need medical oncologists, surgical oncologists, pediatric oncologists, gynecologic oncologists, radiologists, and pathologists trained to think about well-tailored resource-stratified solutions to cancer care in the developing world. Moreover, the multidisciplinary fundamental team approach needed to treat most neoplastic diseases requires coordinated investment in several areas. Current innovative approaches have relied on partnerships between academic institutions in developed countries and local governments and ministries of health in developing countries to provide the expertise needed to implement effective cancer control programs. Global oncology is a viable and necessary field that needs to be emphasized because of its critical role in proposing not only solutions in developing countries, but also solutions that can be applied to similar challenges of access to cancer care and control faced by underserved populations in developed countries.

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

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.

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.

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

ClinicalTrials.gov

2017-04-05

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

Disparities in barriers to follow-up care between African American and White breast cancer survivors.

PubMed

Palmer, Nynikka R A; Weaver, Kathryn E; Hauser, Sally P; Lawrence, Julia A; Talton, Jennifer; Case, L Douglas; Geiger, Ann M

2015-11-01

Despite recommendations for breast cancer survivorship care, African American women are less likely to receive appropriate follow-up care, which is concerning due to their higher mortality rates. This study describes differences in barriers to follow-up care between African American and White breast cancer survivors. We conducted a mailed survey of women treated for non-metastatic breast cancer in 2009-2011, 6-24 months post-treatment (N = 203). Survivors were asked about 14 potential barriers to follow-up care. We used logistic regression to explore associations between barriers and race, adjusting for covariates. Our participants included 31 African American and 160 White survivors. At least one barrier to follow-up care was reported by 62 %. Compared to White survivors, African Americans were more likely to identify barriers related to out-of-pocket costs (28 vs. 51.6 %, p = 0.01), other health care costs (21.3 vs. 45.2 %, p = 0.01), anxiety/worry (29.4 vs. 51.6 %, p = 0.02), and transportation (4.4 vs. 16.1 %, p = 0.03). After adjustment for covariates, African Americans were three times as likely to report at least one barrier to care (odds ratio (OR) = 3.3, 95 % confidence interval (CI) = 1.1-10.1). Barriers to care are common among breast cancer survivors, especially African American women. Financial barriers to care may prevent minority and underserved survivors from accessing follow-up care. Enhancing insurance coverage or addressing out-of-pocket costs may help address financial barriers to follow-up care among breast cancer survivors. Psychosocial care aimed at reducing fear of recurrence may also be important to improve access among African American breast cancer survivors.

Self-Management: Enabling and empowering patients living with cancer as a chronic illness

PubMed Central

McCorkle, Ruth; Ercolano, Elizabeth; Lazenby, Mark; Schulman-Green, Dena; Schilling, Lynne S.; Lorig, Kate; Wagner, Edward H.

2010-01-01

With recent improvements in early detection, diagnosis and treatment of cancer, people with cancer are living longer, and their cancer may be managed as a chronic illness. Cancer as a chronic illness places new demands on patients and families to manage their own care, and it challenges old paradigms that oncology's work is done after treatment. As a chronic illness, however, cancer care occurs on a continuum that stretches from prevention to the end of life, with early detection, diagnosis, treatment, and survivorship in between. In this paper, we review self-management interventions that enable patients and families to participate in managing their care along this continuum. We review randomized controlled trials of self-management interventions with cancer patients and families in the treatment, survivorship, and end-of-life phases of the cancer-care continuum. We also present the Chronic Care Model as a model of care that oncology practices can use to enable and empower patients and families to engage in self-management. We conclude that, the need for a common language by which to speak about self-management and a common set of self-management actions for cancer care notwithstanding, oncology practices can now build strong relationships with their patients and formulate mutually-agreed upon care plans that enable and empower patients to care for themselves in the way they prefer. PMID:21205833

Costs of cancer care in children and adolescents in Ontario, Canada.

PubMed

de Oliveira, Claire; Bremner, Karen E; Liu, Ning; Greenberg, Mark L; Nathan, Paul C; McBride, Mary L; Krahn, Murray D

2017-11-01

Cancer in children and adolescents presents unique issues regarding treatment and survivorship, but few studies have measured economic burden. We estimated health care costs by phase of cancer care, from the public payer perspective, in population-based cohorts. Children newly diagnosed at ages 0 days-14.9 years and adolescents newly diagnosed at 15-19.9 years, from January 1, 1995 to June 30, 2010, were identified from Ontario cancer registries, and each matched to three noncancer controls. Data were linked with administrative records describing resource use for cancer and other health care. Total and net (patients minus controls) resource-specific costs ($CAD2012) were estimated using generalized estimating equations for four phases of care: prediagnosis (60 days), initial (360 days), continuing (variable), final (360 days). Mean ages at diagnosis were 6 years for children (N = 4,606) and 17 years for adolescents (N = 2,443). Mean net prediagnosis phase 60-day costs were $6,177 for children and $1,018 for adolescents. Costs for initial, continuing, and final phases were $138,161, $15,756, and $316,303 per 360 days for children, and $62,919, $7,071, and $242,008 for adolescents. The highest initial phase costs were for leukemia patients ($156,225 per 360 days for children and $171,275 for adolescents). The final phase was the most costly ($316,303 per 360 days for children and $242,008 for adolescents). Costs for children with cancer are much higher than for adolescents and much higher than those reported in adults. Comprehensive population-based long-term estimates of cancer costs are useful for health services planning and cost-effectiveness analysis. © 2017 Wiley Periodicals, Inc.

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.

Outside the box: will information technology be a viable intervention to improve the quality of cancer care?

PubMed

Hesse, Bradford W; Hanna, Christopher; Massett, Holly A; Hesse, Nicola K

2010-01-01

The use of health information technology (IT) to resolve the crisis in communication inherent within the fragmented service environment of medical care in the United States is a strategic priority for the Department of Health and Human Services. Yet the deployment of health IT alone is not sufficient to improve quality in health service delivery; what is needed is a human factors approach designed to optimize the balance between health-care users, health-care providers, policies, procedures, and technologies. An evaluation of interface issues between primary and specialist care related to cancer reveals opportunities for human factors improvement along the cancer care continuum. Applications that emphasize cognitive support for prevention recommendations and that encourage patient engagement can help create a coordinated health-care environment conducive to cancer prevention and early detection. An emphasis on reliability, transparency, and accountability can help improve the coordination of activities among multiple service providers during diagnosis and treatment. A switch in emphasis from a transaction-based approach to one emphasizing long-term support for healing relationships should help improve patient outcomes during cancer survivorship and end-of-life care. Across the entire continuum of care, an emphasis on "meaningful use" of health IT-rather than on IT as an endpoint-should help put cancer on a path toward substantive continuous quality improvement. The accompanying research questions will focus on reducing the variance between the social and technical subsystems as IT is used to improve patient outcomes across the interfaces of care.

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

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.

Factors Influencing Cancer Patients' Choice of End-of-Life Care Place.

PubMed

Natsume, Maika; Watanabe, Kiyotaka; Matsumoto, Satoko; Naruge, Daisuke; Hayashi, Kazuhiko; Furuse, Junji; Kawamura, Masafumi; Jinno, Hiromitsu; Sano, Keiji; Fukushima, Ryoji; Osawa, Gakuji; Aruga, Etsuko; Hashiguchi, Yojiro; Tanaka, Atsushi; Takikawa, Hajime; Seki, Nobuhiko

2018-06-01

It is important for cancer patients to receive end-of-life care at the desired place. To identify issues in selection of place for end-of-life care of cancer patients to realize their optimal survivorship. Between September 2015 and January 2016, a questionnaire consisting of 33 items, including end-of-life care place preferences, was administered to cancer patients who attended three university hospitals in Japan. A total of 971 questionnaires were collected (response rate, 88.4%). Fifty-eight percent of patients preferred to stay at home to receive end-of-life care. In contrast, more than 80% of patients did not know the details of healthcare services. The factors significantly associated with patients' choice for place of end-of-life care at home were "male gender" (odds ratio [OR] = 1.43, p = 0.030), "living in a one-person household" (OR = 0.21, p < 0.001), "feeling close to friends" (OR = 0.94, p = 0.049), "thinking that the family is burdened" (OR = 0.55, p < 0.001), "thinking that pain is controllable at home" (OR = 1.39, p < 0.001), and "thinking that society should establish a system of home palliative care" (OR = 1.93, p < 0.001). This study identified six factors influencing the selection of a place for end-of-life care. Most patients have a desire for a social system that allows end-of-life care at home where they can live with their family, but have anxiety about treatment to deal with symptom change, with concern about burden on their family. These issues should be addressed in the future.

Disparities in Barriers to Follow-up Care between African American and White Breast Cancer Survivors

PubMed Central

Palmer, Nynikka R. A.; Weaver, Kathryn E.; Hauser, Sally P.; Lawrence, Julia A.; Talton, Jennifer; Case, L. Douglas; Geiger, Ann M.

2015-01-01

Purpose Despite recommendations for breast cancer survivorship care, African American women are less likely to receive appropriate follow-up care, which is concerning due to their higher mortality rates. This study describes differences in barriers to follow-up care between African American and White breast cancer survivors. Methods We conducted a mailed survey of women treated for non-metastatic breast cancer in 2009–2011, 6–24 months post-treatment (N=203). Survivors were asked about 14 potential barriers to follow-up care. We used logistic regression to explore associations between barriers and race, adjusting for covariates. Results Our participants included 31 African American and 160 White survivors. At least one barrier to follow-up care was reported by 62%. Compared to White survivors, African Americans were more likely to identify barriers related to out-of-pocket costs (28% vs. 51.6%, p=0.01), other healthcare costs (21.3% vs. 45.2%, p=0.01), anxiety/worry (29.4% vs. 51.6%, p=0.02), and transportation (4.4% vs. 16.1%, p=0.03). After adjustment for covariates, African Americans were three times as likely to report at least one barrier to care (OR=3.3, 95%CI=1.1–10.1). Conclusions Barriers to care are common among breast cancer survivors, especially African American women. Financial barriers to care may prevent minority and underserved survivors from accessing follow-up care. Enhancing insurance coverage or addressing out-of-pocket costs may help address financial barriers to follow-up care among breast cancer survivors. Psychosocial care aimed at reducing fear of recurrence may also be important to improve access among African American breast cancer survivors. PMID:25821145

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

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.

Outside the Box: Will Information Technology Be a Viable Intervention to Improve the Quality of Cancer Care?

PubMed Central

Hanna, Christopher; Massett, Holly A.

2010-01-01

The use of health information technology (IT) to resolve the crisis in communication inherent within the fragmented service environment of medical care in the United States is a strategic priority for the Department of Health and Human Services. Yet the deployment of health IT alone is not sufficient to improve quality in health service delivery; what is needed is a human factors approach designed to optimize the balance between health-care users, health-care providers, policies, procedures, and technologies. An evaluation of interface issues between primary and specialist care related to cancer reveals opportunities for human factors improvement along the cancer care continuum. Applications that emphasize cognitive support for prevention recommendations and that encourage patient engagement can help create a coordinated health-care environment conducive to cancer prevention and early detection. An emphasis on reliability, transparency, and accountability can help improve the coordination of activities among multiple service providers during diagnosis and treatment. A switch in emphasis from a transaction-based approach to one emphasizing long-term support for healing relationships should help improve patient outcomes during cancer survivorship and end-of-life care. Across the entire continuum of care, an emphasis on “meaningful use” of health IT—rather than on IT as an endpoint—should help put cancer on a path toward substantive continuous quality improvement. The accompanying research questions will focus on reducing the variance between the social and technical subsystems as IT is used to improve patient outcomes across the interfaces of care. PMID:20386056

Caregiving and mutuality among long-term colorectal cancer survivors with ostomies: qualitative study.

PubMed

Altschuler, Andrea; Liljestrand, Petra; Grant, Marcia; Hornbrook, Mark C; Krouse, Robert S; McMullen, Carmit K

2018-02-01

The cancer caregiving literature focuses on the early phases of survivorship, but caregiving can continue for decades when cancer creates disability. Survivors with an ostomy following colorectal cancer (CRC) have caregiving needs that may last decades. Mutuality has been identified as a relationship component that can affect caregiving. This paper discusses how mutuality may affect long-term ostomy caregiving. We conducted semi-structured, in-depth interviews with 31 long-term CRC survivors with ostomies and their primary informal caregivers. Interviewees were members of an integrated health care delivery system in the USA. We used inductive theme analysis techniques to analyze the interviews. Most survivors were 71 years of age or older (67%), female (55%), and with some college education (54%). Two thirds lived with and received care from spouses. Caregiving ranged from minimal support to intimate assistance with daily ostomy care. While some survivors received caregiving far beyond what was needed, others did not receive adequate caregiving for their health care needs. Low mutuality created challenges for ostomy caregiving. Mutuality impacts the quality of caregiving, and this quality may change over time, depending on various factors. Emotional feedback and amplification is the proposed mechanism by which mutuality may shift over time. Survivorship care should include assessment and support of mutuality as a resource to enhance health outcomes and quality of life for survivors with long-term caregiving needs and their caregivers. Appropriate questionnaires can be identified or developed to assess mutuality over the survivorship trajectory.

Advancing a comprehensive cancer care agenda for children and their families: Institute of Medicine Workshop highlights and next steps.

PubMed

Kirch, Rebecca; Reaman, Gregory; Feudtner, Chris; Wiener, Lori; Schwartz, Lisa A; Sung, Lillian; Wolfe, Joanne

2016-09-01

This article highlights key findings from the "Comprehensive Cancer Care for Children and Their Families" March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family members, clinician investigators, advocates, and members of the public to discuss emerging evidence and care models and to determine the next steps for optimizing quality-of-life outcomes and well-being for children and families during pediatric cancer treatment, after treatment completion, and across the life spectrum. Participants affirmed the triple aim of pediatric oncology that strives for every child with cancer to be cured; provides high-quality palliative and psychosocial supportive, restorative, and rehabilitative care to children and families throughout the illness course and survivorship; and assures receipt of high-quality end-of-life care for patients with advancing disease. Workshop outcomes emphasized the need for new pediatric cancer drug development and identified critical opportunities to prioritize palliative care and psychosocial support as an integral part of pediatric cancer research and treatment, including the necessity for adequately resourcing these supportive services to minimize suffering and distress, effectively address quality-of-life needs for children and families at all stages of illness, and mitigate the long-term health risks associated with childhood cancer and its treatment. Next steps include dismantling existing silos and enhancing collaboration between clinical investigators, disease-directed specialists, and supportive care services; expanding the use of patient-reported and parent-reported outcomes; effectively integrating palliative and psychosocial care; and clinical communication skills development. CA Cancer J Clin 2016;66:398-407. © 2016 American Cancer Society. © 2016 American Cancer Society.

Utah Cancer Survivors: A Comprehensive Comparison of Health-Related Outcomes Between Survivors and Individuals Without a History of Cancer.

PubMed

Fowler, Brynn; Ding, Qian; Pappas, Lisa; Wu, Yelena P; Linder, Lauri; Yancey, Jeff; Wright, Jennifer; Clayton, Margaret; Kepka, Deanna; Kirchhoff, Anne C

2018-02-01

Assessments of cancer survivors' health-related needs are often limited to national estimates. State-specific information is vital to inform state comprehensive cancer control efforts developed to support patients and providers. We investigated demographics, health status/quality of life, health behaviors, and health care characteristics of long-term Utah cancer survivors compared to Utahans without a history of cancer. Utah Behavioral Risk Factor Surveillance System (BRFSS) 2009 and 2010 data were used. Individuals diagnosed with cancer within the past 5 years were excluded. Multivariable survey weighted logistic regressions and computed predictive marginals were used to estimate age-adjusted percentages and 95 % confidence intervals (CI). A total of 11,320 eligible individuals (727 cancer survivors, 10,593 controls) were included. Respondents were primarily non-Hispanic White (95.3 % of survivors, 84.1 % of controls). Survivors were older (85 % of survivors ≥40 years of age vs. 47 % of controls). Survivors reported the majority of their cancer survivorship care was managed by primary care physicians or non-cancer specialists (93.5 %, 95 % CI = 87.9-99.1). Furthermore, 71.1 % (95 % CI = 59.2-82.9) of survivors reported that they did not receive a cancer treatment summary. In multivariable estimates, fair/poor general health was more common among survivors compared to controls (17.8 %, 95 % CI = 12.5-23.1 vs. 14.2 %, 95 % CI = 12.4-16.0). Few survivors in Utah receive follow-up care from a cancer specialist. Provider educational efforts are needed to promote knowledge of cancer survivor issues. Efforts should be made to improve continuity in follow-up care that addresses the known issues of long-term survivors that preclude optimal quality of life, resulting in a patient-centered approach to survivorship.

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.

Protocol for the ProCare Trial: a phase II randomised controlled trial of shared care for follow-up of men with prostate cancer

PubMed Central

Emery, Jon; Doorey, Juanita; Jefford, Michael; King, Madeleine; Pirotta, Marie; Hayne, Dickon; Martin, Andrew; Trevena, Lyndal; Lim, Tee; Constable, Roger; Hawks, Cynthia; Hyatt, Amelia; Hamid, Akhlil; Violet, John; Gill, Suki; Frydenberg, Mark; Schofield, Penelope

2014-01-01

Introduction Men with prostate cancer require long-term follow-up to monitor disease progression and manage common adverse physical and psychosocial consequences of treatment. There is growing recognition of the potential role of primary care in cancer follow-up. This paper describes the protocol for a phase II multisite randomised controlled trial of a novel model of shared care for the follow-up of men after completing treatment for low-moderate risk prostate cancer. Methods and analysis The intervention is a shared care model of follow-up visits in the first 12 months after completing treatment for prostate cancer with the following specific components: a survivorship care plan, general practitioner (GP) management guidelines, register and recall systems, screening for distress and unmet needs and patient information resources. Eligible men will have completed surgery and/or radiotherapy for low-moderate risk prostate cancer within the previous 8 weeks and have a GP who consents to participate. Ninety men will be randomised to the intervention or current hospital follow-up care. Study outcome measures will be collected at baseline, 3, 6 and 12 months and include anxiety, depression, unmet needs, prostate cancer-specific quality of life and satisfaction with care. Clinical processes and healthcare resource usage will also be measured. The principal emphasis of the analysis will be on obtaining estimates of the treatment effect size and assessing feasibility in order to inform the design of a subsequent phase III trial. Ethics and dissemination Ethics approval has been granted by the University of Western Australia and from all hospital recruitment sites in Western Australia and Victoria. Results of this phase II trial will be reported in peer-reviewed publications and in conference presentations. Trial Registration Australian New Zealand Clinical Trial Registry ACTRN12610000938000 PMID:24604487

Clinical and Organizational Issues in the Management of Surviving Breast and Colorectal Cancer Patients: Attitudes and Feelings of Medical Oncologists

PubMed Central

Numico, Gianmauro; Pinto, Carmine; Gori, Stefania; Ucci, Giovanni; Di Maio, Massimo; Cancian, Maurizio; De Lorenzo, Francesco; Silvestris, Nicola

2014-01-01

Background The fast growing demand and the shortage of resources are pushing toward more efficient models of survivorship care delivery. The Associazione Italiana di Oncologia Medica (AIOM) established an interdisciplinary working group with the purpose of promoting organizational improvements at the national level. A survey aimed at assessing attitudes and feelings of oncologists was considered preliminary to further initiatives. Methods A 25-item questionnaire, sent to the mailing list of the Society, explored the following issues on the practice of breast and colorectal cancer patients' follow up: 1) organization; 2) clinical features; 3) feelings about the different meanings of follow-up. Results Ninety-one oncologists of 160 institutions (57%) answered to the questionnaire. Although follow up is considered a distinct oncological activity in 68%, a fully shared organization between specialists is not common and communications with Primary Care Physicians are not structured in the majority of the cases. Fifty-five and 30% of the oncologists follow breast and colorectal cancer patients indefinitely. In case of discharge a survivorship care plan is delivered in only 9%. The majority of respondents do not hold a role of follow up in mortality reduction. Conclusions Although survivorship care represents a significant part of the oncologists' workload, an “oncology-centered” model is largely adopted and established care pathways are still incomplete. Survivorship care needs to be put at the center of an educational policy and of a widespread organizational effort, directed at improving appropriateness and quality. PMID:24983237

Clinical and organizational issues in the management of surviving breast and colorectal cancer patients: attitudes and feelings of medical oncologists.

PubMed

Numico, Gianmauro; Pinto, Carmine; Gori, Stefania; Ucci, Giovanni; Di Maio, Massimo; Cancian, Maurizio; De Lorenzo, Francesco; Silvestris, Nicola

2014-01-01

The fast growing demand and the shortage of resources are pushing toward more efficient models of survivorship care delivery. The Associazione Italiana di Oncologia Medica (AIOM) established an interdisciplinary working group with the purpose of promoting organizational improvements at the national level. A survey aimed at assessing attitudes and feelings of oncologists was considered preliminary to further initiatives. A 25-item questionnaire, sent to the mailing list of the Society, explored the following issues on the practice of breast and colorectal cancer patients' follow up: 1) organization; 2) clinical features; 3) feelings about the different meanings of follow-up. Ninety-one oncologists of 160 institutions (57%) answered to the questionnaire. Although follow up is considered a distinct oncological activity in 68%, a fully shared organization between specialists is not common and communications with Primary Care Physicians are not structured in the majority of the cases. Fifty-five and 30% of the oncologists follow breast and colorectal cancer patients indefinitely. In case of discharge a survivorship care plan is delivered in only 9%. The majority of respondents do not hold a role of follow up in mortality reduction. Although survivorship care represents a significant part of the oncologists' workload, an "oncology-centered" model is largely adopted and established care pathways are still incomplete. Survivorship care needs to be put at the center of an educational policy and of a widespread organizational effort, directed at improving appropriateness and quality.

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.

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

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.

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.

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

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.

Capacity for Cancer Care Delivery Research in National Cancer Institute Community Oncology Research Program Community Practices: Availability of Radiology and Primary Care Research Partners.

PubMed

Carlos, Ruth C; Sicks, JoRean D; Chang, George J; Lyss, Alan P; Stewart, Teresa L; Sung, Lillian; Weaver, Kathryn E

2017-12-01

Cancer care spans the spectrum from screening and diagnosis through therapy and into survivorship. Delivering appropriate care requires patient transitions across multiple specialties, such as primary care, radiology, and oncology. From the program's inception, the National Cancer Institute Community Oncology Research Program (NCORP) sites were tasked with conducting cancer care delivery research (CCDR) that evaluates structural, organizational, and social factors, including care transitions that determine patient outcomes. The aim of this study is to describe the capacity of the NCORP to conduct multidisciplinary CCDR that includes radiology and primary care practices. The NCORP includes 34 community and 12 minority and underserved community sites. The Landscape Capacity Assessment was conducted in 2015 across these 46 sites, composed of the 401 components and subcomponents designated to conduct CCDR. Each respondent had the opportunity to designate an operational practice group, defined as a group of components and subcomponents with common care practices and resources. The primary outcomes were the proportion of adult oncology practice groups with affiliated radiology and primary care practices. The secondary outcomes were the proportion of those affiliated radiology and primary care groups that participate in research. Eighty-seven percent of components and subcomponents responded to at least some portion of the assessment, representing 230 practice groups. Analyzing the 201 adult oncology practice groups, 85% had affiliated radiologists, 69% of whom participate in research. Seventy-nine percent had affiliated primary care practitioners, 31% of whom participate in research. Institutional size, multidisciplinary group practice, and ownership by large regional or multistate health systems was associated with research participation by affiliated radiology and primary care groups. Research participation by these affiliated specialists was not significantly

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

ClinicalTrials.gov

2017-09-27

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

Exploring the Feasibility of Establishing a Retrospective Cohort of Survivors of Adolescent and Young Adult Cancer to Study Long-Term Health Outcomes in an Integrated Managed Care Environment

PubMed Central

Chiu, Vicki; Mueller, Lisa A.; Cooper, Robert

2013-01-01

Purpose To determine the feasibility of conducting survivorship research for long-term health outcomes with survivors of cancer diagnosed as an adolescent or young adult (AYA) and enrolled in Kaiser Permanente Southern California (KPSC), an integrated managed care organization. Methods Survivors diagnosed at ages 15–39 during 1990 and 2000 at KPSC were included. A 1:5 age-, gender-, and calendar-year-matched non-cancer KPSC comparison group was also identified. Date of cancer diagnosis was defined as the study baseline. KPSC insurance retention rate was calculated at 5 and 10 years post-baseline among survivors. Multivariable logistic regression was used to examine demographic and cancer characteristics associated with KPSC insurance retention at ≥5 years after baseline. Results A total of 6170 AYA cancer patients were identified: 4745 (77%) and 4471 (72%) survived at 5 and 10 years after diagnosis respectively. Of these survivors, 3654 (77%) and 2817 (63%) remained insured at KPSC at 5 and 10 years post-cancer diagnosis respectively. Those aged 20–29 years when diagnosed and those with stage 4 cancer were less likely to retain KPSC insurance than other survivors. For non-cancer comparison subjects, the KPSC insurance retention rate was lower: 66% at 5 years and 51% at 10 years post-baseline. Younger age, female gender, white race, and later calendar years of study baseline were associated with a lower likelihood of KPSC insurance retention. Conclusion These results demonstrate the feasibility and potential limitations of conducting survivorship research to characterize long-term health outcomes for survivors of AYA cancer in a large, integrated managed care organization. PMID:23781402

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.

Re-defining one's occupational self 2 years after breast cancer: a case study.

PubMed

Newman, Robin M

2013-01-01

Margaret*, a 56 year-old Caucasian Stage III breast cancer survivor, participated in a 5 week occupational therapy pilot program, called Take Action. This program was designed for breast cancer survivors who self-reported changes in cognitive function following completion of chemotherapy. The goals of the program were to improve participants' knowledge and use of strategies to enhance occupational performance and to improve satisfaction and performance of meaningful daily activities or occupations. Through a client-centered and evidence-based approach, this case study highlights the importance of incorporating the survivors' sense of self into an occupation-based intervention. Occupational therapists play an important role in facilitating exploration of sense of self in the survivorship phase of care to support occupational performance in self care, productivity, work, leisure and social participation. This case study highlights the important work of redefining oneself in the survivorship phase of care. (*denotes name change).

Survivorship Care in Reducing Symptoms in Young Adult Cancer Survivors

ClinicalTrials.gov

2017-10-13

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

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.

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.

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.

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

PubMed Central

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

2015-01-01

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

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.

Social Support, Self-Efficacy for Decision Making, and Follow-up Care Use in Long-term Cancer Survivors

PubMed Central

Forsythe, Laura P.; Alfano, Catherine M.; Kent, Erin E.; Weaver, Kathryn E.; Bellizzi, Keith; Arora, Neeraj; Aziz, Noreen; Keel, Gretchen; Rowland, Julia H.

2014-01-01

Objective Cancer survivors play an important role in coordinating their follow-up care and making treatment-related decisions. Little is known about how modifiable factors like social support are associated with active participation in follow-up care. This study tests associations between social support, cancer-related follow-up care use, and self-efficacy for participation in decision making related to follow-up care (SEDM). We also identified sociodemographic and clinical factors associated with social support among long-term survivors. Methods The FOllow-up Care Use among Survivors (FOCUS) study is a cross-sectional, population based survey of breast, prostate, colon, and gynecologic cancer survivors (n=1522) 4 to 14 years post-diagnosis. Multivariable regression models were used to test associations between perceived social support (tangible and emotional/informational support modeled separately), follow-up care use (past two years), and SEDM, as well as to identify factors associated with perceived support. Results Neither support type was associated with follow-up care use (all p>0.05), although marital status was uniquely, positively associated with follow-up care use (p<0.05). Both tangible support (B for a standard deviation increase (SE)=9.75(3.15), p<0.05) and emotional/informational support (B(SE)=12.61(3.05), p<0.001) were modestly associated with SEDM. Being married, having adequate financial resources, history of recurrence, and better perceived health status were associated with higher perceived tangible and emotional support (all p<0.05). Conclusions While perceived social support may facilitate survivor efficacy for participation in decision making during cancer follow-up care, other factors, including marital satisfaction, appear to influence follow-up care use. Marital status and social support may be important factors to consider in survivorship care planning. PMID:24481884

Social support, self-efficacy for decision-making, and follow-up care use in long-term cancer survivors.

PubMed

Forsythe, Laura P; Alfano, Catherine M; Kent, Erin E; Weaver, Kathryn E; Bellizzi, Keith; Arora, Neeraj; Aziz, Noreen; Keel, Gretchen; Rowland, Julia H

2014-07-01

Cancer survivors play an important role in coordinating their follow-up care and making treatment-related decisions. Little is known about how modifiable factors such as social support are associated with active participation in follow-up care. This study tests associations between social support, cancer-related follow-up care use, and self-efficacy for participation in decision-making related to follow-up care (SEDM). We also identified sociodemographic and clinical factors associated with social support among long-term survivors. The FOllow-up Care Use among Survivors study is a cross-sectional, population-based survey of breast, prostate, colon, and gynecologic cancer survivors (n=1522) 4-14 years post-diagnosis. Multivariable regression models were used to test associations between perceived social support (tangible and emotional/informational support modeled separately), follow-up care use (past 2 years), and SEDM, as well as to identify factors associated with perceived support. Neither support type was associated with follow-up care use (all p>0.05), although marital status was uniquely, positively associated with follow-up care use (p<0.05). Both tangible support (B for a standard deviation increase (SE)=9.75(3.15), p<0.05) and emotional/informational support (B(SE)=12.61(3.05), p<0.001) were modestly associated with SEDM. Being married, having adequate financial resources, history of recurrence, and better perceived health status were associated with higher perceived tangible and emotional support (all p<0.05). While perceived social support may facilitate survivor efficacy for participation in decision-making during cancer follow-up care, other factors, including marital satisfaction, appear to influence follow-up care use. Marital status and social support may be important factors to consider in survivorship care planning. Copyright © 2014 John Wiley & Sons, Ltd.

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.

US radiation oncology practice patterns for posttreatment survivor care.

PubMed

Koontz, Bridget F; Benda, Rashmi; De Los Santos, Jennifer; Hoffman, Karen E; Huq, M Saiful; Morrell, Rosalyn; Sims, Amber; Stevens, Stephanie; Yu, James B; Chen, Ronald C

2016-01-01

Increasing numbers of cancer survivors have driven a greater focus on care of cancer patients after treatment. Radiation oncologists have long considered follow-up of patients an integral part of practice. We sought to document current survivor-focused care patterns and identify barriers to meeting new regulatory commission guidelines for survivorship care plans (SCPs) and provide guidance for survivorship care. A 23-question electronic survey was e-mailed to all practicing US physician American Society of Radiation Oncology members. Responses were collected for 25 days in March 2014. Survey data were descriptively analyzed. A total of 574 eligible providers responded, for a response percentage of 14.7%. Almost all providers follow their patients after treatment (97%). Length of follow-up was frequently extensive: 17% followed up to 2 years, 40% for 3-5 years, 12% for 6-10 years, and 31% indefinitely. Ancillary services, particularly social work and nutrition services, are commonly available onsite to patients in follow-up. Fewer than half of respondents (40%) indicated that they currently use SCPs for curative intent patients and those who do generally use internally developed templates. SCPs typically go to patients (91%), but infrequently to primary care providers (22%). The top 3 barriers to implementation of SCPs were cost (57%), duplicative survivorship care plans provided by other physicians (43%), and lack of consensus or professional guidelines (40%). Eighty-seven percent indicated that SCPs built into an electronic medical record system would be useful. A significant part of radiation oncology practice includes the care of those in the surveillance of follow-up phase of care. SCPs may be beneficial in improving communication with the patient and other care but are not widely used within our field. This survey identified key barriers to use of SCPs and provides specialty guidance for important information to be included in a radiation oncology oriented SCP

Chronic disease management perspectives of colorectal cancer survivors using the Veterans Affairs healthcare system: a qualitative analysis.

PubMed

Zullig, Leah L; Goldstein, Karen M; Bosworth, Hayden B; Andrews, Sara M; Danus, Susanne; Jackson, George L; Provenzale, Dawn; Weinberger, Morris; Kelley, Michael J; Voils, Corrine I

2018-03-09

Colorectal cancer (CRC) is the third most commonly diagnosed cancer in the US. CRC survivors may have complex healthcare needs requiring care from both specialists and primary care. Our objective was to understand how CRC survivors perceive their survivorship care, especially management of their cardiovascular-related chronic diseases. We identified patients diagnosed with non-metastatic CRC between 10/1/2007 and 12/31/2015 at Veterans Affairs Medical Centers in North Carolina or Virginia. In 2016, we conducted telephone-based, semi-structured interviews to assess survivors' experiences with cancer survivorship and changes in health priorities. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed, and coded. The 25 participants were, on average, 64 years old and approximately 4 years post-CRC diagnosis at the time of interview; most were white (60%), male (92%), and diagnosed with colon cancer (64%) as opposed to rectal cancer. CRC survivors reported: (1) a shift in focus from surviving cancer to reducing cardiovascular disease risk (e.g., by managing weight); (2) challenges with taking medications for CVD-related conditions; (3) new recognition of the importance of engaging with primary care providers. Experiences with cancer shapes how survivors view their health. Management of cardiovascular-related chronic disease is important to veteran CRC survivors. There is a need to deliver cardiovascular disease risk reduction programs tailored for CRC survivors.

Psychosocial needs of young breast cancer survivors in Mexico City, Mexico

PubMed Central

Rosenberg, Shoshana M.; González-Robledo, Maria Cecilia; Cohn, Julia G.; Villarreal-Garza, Cynthia; Partridge, Ann H.; Knaul, Felicia M.

2018-01-01

Objective Young breast cancer survivors in Mexico face distinct psychosocial challenges that have not been characterized. This study aims to describe the psychosocial needs of young breast cancer survivors in Mexico at 5 or more years of survivorship, identifying areas of focus for early interventions. Methods Breast cancer patients diagnosed at age 40 or prior with 5 or more years since diagnosis were invited to participate in one-on-one 30–60 minute semi-structured audio-recorded interviews at the Instituto Nacional de Cancerología in Mexico City. Transcripts were coded using thematic analysis with NVivo software. Results 25 women participated. Five major phenomena emerged from analysis: (1) minimization of fertility concerns; (2) persistence of body image disturbance over time; (3) barriers to employment during survivorship; (4) impact on family relationships and social networks; & (5) unmet psychological care and informational needs. Conclusions Early interventions with a focus on fertility loss education, access to reconstructive surgery and body image support, guidance during return-to-work, assistance with childcare, integration of psychological care and the fulfillment of informational needs could ameliorate long-term psychological and social distress for young breast cancer survivors in Mexico. PMID:29787612

Psychosocial needs of young breast cancer survivors in Mexico City, Mexico.

PubMed

Hubbeling, Harper G; Rosenberg, Shoshana M; González-Robledo, Maria Cecilia; Cohn, Julia G; Villarreal-Garza, Cynthia; Partridge, Ann H; Knaul, Felicia M

2018-01-01

Young breast cancer survivors in Mexico face distinct psychosocial challenges that have not been characterized. This study aims to describe the psychosocial needs of young breast cancer survivors in Mexico at 5 or more years of survivorship, identifying areas of focus for early interventions. Breast cancer patients diagnosed at age 40 or prior with 5 or more years since diagnosis were invited to participate in one-on-one 30-60 minute semi-structured audio-recorded interviews at the Instituto Nacional de Cancerología in Mexico City. Transcripts were coded using thematic analysis with NVivo software. 25 women participated. Five major phenomena emerged from analysis: (1) minimization of fertility concerns; (2) persistence of body image disturbance over time; (3) barriers to employment during survivorship; (4) impact on family relationships and social networks; & (5) unmet psychological care and informational needs. Early interventions with a focus on fertility loss education, access to reconstructive surgery and body image support, guidance during return-to-work, assistance with childcare, integration of psychological care and the fulfillment of informational needs could ameliorate long-term psychological and social distress for young breast cancer survivors in Mexico.

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

"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.

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.

Financial difficulty, worry about affording care, and benefit finding in long-term survivors of cancer.

PubMed

Jones, Salene M W; Walker, Rod; Fujii, Monica; Nekhlyudov, Larissa; Rabin, Borsika A; Chubak, Jessica

2018-04-01

To examine the associations of worry about affording care and reporting financial difficulties with benefit finding in long-term cancer survivors. Long-term survivors of cancer (n = 547) in 3 integrated health care delivery systems completed the Medical Expenditure Panel Survey Cancer Survivorship Supplement. The relationship between benefit finding (becoming a stronger person, coping better, and making positive changes) and the potentially interacting factors of worry about affording care and financial difficulties was examined using multivariate logistic regression models. Of the total sample, 20% reported worry and 15% reported financial difficulty. Among those who reported no worry, financial difficulty was positively associated with becoming a stronger person (odds ratio [OR] = 2.89, 95% CI: 1.07, 7.80). Coping better was not associated with worry, financial difficulties, or the interaction of the two. Among those with no financial difficulty, worry was positively associated with making positive changes (OR = 2.64, 95% CI: 1.41, 4.96), and among those reporting no worry, financial difficulty had a non-significant positive association with making positive changes (OR = 1.98, 95% CI: 0.91, 4.31). Among those reporting worry, having financial difficulties was associated with lower odds of making positive changes (OR = 0.32, 95% CI: 0.13, 0.78). Our results suggest a complex relationship between financial difficulty, worry, and benefit finding. The combination of worry about affording care and financial difficulty needs to be addressed and further studied among cancer survivors, as the presence of both, but not alone, was negatively associated with making positive changes, an aspect of benefit finding. Copyright © 2018 John Wiley & Sons, Ltd.

Opportunities for Public Health Communication, Intervention, and Future Research on Breast Cancer in Younger Women

PubMed Central

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

2015-01-01

Background 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. Methods 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. Results 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. Conclusion 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. PMID:23514347

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

ClinicalTrials.gov

2018-01-29

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

Cancer and Lesbian, Gay, Bisexual, Transgender/Transsexual, and Queer/Questioning Populations (LGBTQ)

PubMed Central

Quinn, Gwendolyn P.; Sanchez, Julian A.; Sutton, Steven K.; Vadaparampil, Susan T.; Nguyen, Giang T.; Green, B. Lee; Kanetsky, Peter A.; Schabath, Matthew B.

2015-01-01

This article provides an overview of the current literature on seven cancer sites that may disproportionately affect lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. For each cancer site we present and discuss the descriptive statistics, primary prevention, secondary prevention and preclinical disease, tertiary prevention and late stage disease, and clinical implications. Finally, an overview of psychosocial factors related to cancer survivorship is offered as well as strategies for improving access to care. PMID:26186412

What to Expect During a Mastectomy Surgery

MedlinePlus

... Managing Side Effects and Supportive Care Managing Pain Quality of Life Survival and Risk of Recurrence Breast Cancer Recurrence ... Pain Managing Side Effects and Supportive Care Support Quality of Life Survivorship Topics Survivorship Topics Medical Care After Treatment ...

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.

An innovation in curriculum content and delivery of cancer education within undergraduate nurse training in the UK. What impact does this have on the knowledge, attitudes and confidence in delivering cancer care?

PubMed

Edwards, Deborah; Anstey, Sally; Kelly, Daniel; Hopkinson, Jane

2016-04-01

This was an evaluation of an innovation in curriculum content and delivery within undergraduate nursing education in the UK. Its purpose was to investigate the effect on knowledge, attitudes and confidence in delivering cancer care. The study design was a pre-test post-test survey design with a comparison group. Participants were two cohorts of undergraduate nursing students (n(intervention) = 84, n(comparison) = 91). The intervention cohort were exposed to a new 3.5 day programme of cancer education, coproduced with patients, carers and health professionals, which focused on cancer as a life changing long-term condition. The comparison cohort had been exposed to a 2 day programme produced by a lecturer. Following exposure to the new model for the delivery of undergraduate nurse cancer education, the intervention cohort demonstrated good overall knowledge of the impact of cancer, more positive attitudes towards cancer treatment and more confidence in their ability to deliver cancer care. Attitudes were more positive and confidence in ability to support cancer patients at all stages of the cancer journey were greater than in the comparison group. Insights gained into the cancer patient and carer perspectives were highly valued. This study has found that a new model for the delivery of cancer education focusing on survivorship and delivered in partnership with patients, carers and clinicians, may improve knowledge, attitudes and confidence in the delivery of cancer care. Further work is now needed, using a more robust experimental design, to investigate the generalisability of the results to other education programs. Copyright © 2016 The Authors. Published by Elsevier Ltd.. All rights reserved.

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.

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

76 FR 82300 - Request for Nominations of Candidates To Serve on the Advisory Committee on Breast Cancer in...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-12-30

... cancer, disease prevention, early detection, diagnosis, public health, social marketing, genetic screening and counseling, treatment, rehabilitation, palliative care, and survivorship in young women, or in... representation so long as the effectiveness of the Committee is not impaired. Appointments shall be made without...

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.

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.

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.

Identifying and Addressing the Needs of Adolescents and Young Adults With Cancer: Summary of an Institute of Medicine Workshop

PubMed Central

Beaupin, Lynda K.; Demark-Wahnefried, Wendy; Fasciano, Karen; Ganz, Patricia A.; Hayes-Lattin, Brandon; Hudson, Melissa M.; Nevidjon, Brenda; Oeffinger, Kevin C.; Rechis, Ruth; Richardson, Lisa C.; Seibel, Nita L.; Smith, Ashley W.

2015-01-01

Cancer is the leading disease-related cause of death in adolescents and young adults (AYAs). This population faces many short- and long-term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participation in research. PMID:25568146

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.

Financial Toxicity among Patients with Bladder Cancer: Reasons for Delay in Care and Effect on Quality of Life.

PubMed

Casilla-Lennon, Marianne M; Choi, Seul Ki; Deal, Allison M; Bensen, Jeannette T; Narang, Gopal; Filippou, Pauline; McCormick, Benjamin; Pruthi, Raj; Wallen, Eric; Tan, Hung-Jui; Woods, Michael; Nielsen, Matthew; Smith, Angela

2018-05-01

Costly surveillance and treatment of bladder cancer can lead to financial toxicity, a treatment related financial burden. Our objective was to define the prevalence of financial toxicity among patients with bladder cancer and identify delays in care and its effect on health related quality of life. We identified patients with bladder cancer in the University of North Carolina Health Registry/Cancer Survivorship Cohort. Financial toxicity was defined as agreement with having "to pay more for medical care than you can afford." Health related quality of life was measured using general and cancer specific validated questionnaires. Statistical analyses were performed using the Fisher exact test and the Student t-test. A total of 138 patients with bladder cancer were evaluated. Median age was 66.9 years, 75% of the patients were male and 89% were white. Of the participants 33 (24%) endorsed financial toxicity. Participants who were younger (p = 0.02), black (p = 0.01), reported less than a college degree (p = 0.01) and had noninvasive disease (p = 0.04) were more likely to report financial toxicity. On multivariable analysis only age was a significant predictor of financial toxicity. Patients who endorsed financial toxicity were more likely to report delaying care (39% vs 23%, p = 0.07) due to the inability to take time off work or afford general expenses. On general health related quality of life questionnaires patients with financial toxicity reported worse physical and mental health (p = 0.03 and <0.01, respectively), and lower cancer specific health related quality of life (p = 0.01), physical well-being (p = 0.01) and functional well-being (p = 0.05). Financial toxicity is a major concern among patients with bladder cancer. Younger patients were more likely to experience financial toxicity. Those who endorsed financial toxicity experienced delays in care and poorer health related quality of life, suggesting that treatment costs should have an important role in

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.

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

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.

The Cardio-oncology Program: A Multidisciplinary Approach to the Care of Cancer Patients With Cardiovascular Disease.

PubMed

Parent, Sarah; Pituskin, Edith; Paterson, D Ian

2016-07-01

Improved cancer survivorship has resulted in a growing number of Canadians affected by cancer and cardiovascular disease. As a consequence, cardio-oncology programs are rapidly emerging to treat cancer patients with de novo and preexisting cardiovascular disease. The primary goal of a cardio-oncology program is to preserve cardiovascular health to allow the timely delivery of cancer therapy and achieve disease-free remission. Multidisciplinary programs in oncology and cardiology have been associated with enhanced patient well-being and improved clinical outcomes. Because of the complex needs of these multisystem patients, a similar model of care is gaining acceptance. The optimal composition of the cardio-oncology team will typically involve support from cardiology, oncology, and nursing. Depending on the clinical scenario, additional consultation from dietetics, pharmacy, and social services might be required. Timely access to consultation and testing is another prerequisite for cardio-oncology programs because delays in treating cardiac complications and nonadherence to prescribed cancer therapy are each associated with poor outcomes. Recommended reasons for referral to cardio-oncology programs include primary prevention for those at high risk for cardiotoxicity and the secondary treatment of new or worsening cardiovascular disease in cancer patients and survivors. Management is multifaceted and can involve lifestyle education, pharmacotherapy, enhanced cardiovascular surveillance, and support services, such as exercise training. The lack of evidence to guide clinical decisions and recommendations in cardio-oncology is a major challenge and opportunity for health care professionals. Large multicentre prospective registries are needed to adequately power risk model calculations and generate hypotheses for novel interventions. Copyright © 2016 Canadian Cardiovascular Society. Published by Elsevier Inc. All rights reserved.

Survivorship Care Experiences and Information and Support Needs of Oral and Oropharyngeal Cancer Patients

PubMed Central

Manne, Sharon; Hudson, Shawna V.; Baredes, Soly; Stroup, Antoinette; Virtue, Shannon Myers; Paddock, Lisa; Kalyoussef, Evelyne

2015-01-01

Background There is little research documenting the post-treatment experiences and needs of oral/oropharyngeal cancer survivors. Methods In this cross-sectional study, 92 patients diagnosed with oral/oropharyngeal cancer diagnosed between 2 and 5 years prior completed a survey about oral cancer information and support needs. Results About half retrospectively reported that they did not receive a written treatment summary. The desire for more oral cancer information was common: One-third or more desired more information about long-term effects, recommended follow-up, and symptoms that should prompt contacting a doctor. Support needs were less common: Only a lack of energy was rated as a significant support need. Patients who had a recurrence, did not drink alcohol, and had a greater recurrence fear desired more information. Smokers and more distressed patients reported more support needs. Conclusions Survivors reported the desire for more oral cancer information. A desire for assistance was less common. PMID:26788714

Case management needs of older and elderly cancer survivors.

PubMed

Stanton, Marietta; Franco, Gina; Scoggins, Reggie

2012-01-01

The purpose of this study was to examine the case management needs of older and elderly adults. The specific aim was to describe the results of a survey distributed to cancer survivors, asking them to respond to questions about their specific needs. The survey targeted the physical, psychosocial, social, and spiritual needs. Outpatient setting, outreach program. Fatigue, fear of reoccurrence, and sleep disturbances were of the greatest concern to the older and elderly cancer survivor. Case managers dealing with elderly cancer survivors can target these needs in terms of transitions from inpatient to outpatient care and beyond into the survivorship period.

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…

The Affordable Care Act and Cancer Care Delivery

PubMed Central

Brooks, Gabriel A.; Hoverman, J. Russell; Colla, Carrie H.

2017-01-01

The Affordable Care Act (ACA) has reformed U.S. health care delivery through insurance coverage expansion, experiments in payment design, and funding for patient-centered clinical and health care delivery research. The impact on cancer care specifically has been far-reaching, with new ACA-related programs that encourage coordinated, patient-centered, cost-effective care. Insurance expansions through private exchanges and Medicaid, along with pre-existing condition clauses, have helped over 20 million Americans gain health care coverage. Accountable care organizations, oncology patient-centered medical homes and the Oncology Care Model—all implemented through the Center for Medicare and Medicaid Innovation—have initiated an accelerating shift toward value-based cancer care. Concurrently, evidence for better cancer outcomes and improved quality of cancer care is starting to accrue in the wake of ACA implementation. PMID:28537961

Sexual Quality of Life and Needs for Sexology Care of Cancer Patients Admitted for Radiotherapy: A 3-Month Cross-Sectional Study in a Regional Comprehensive Reference Cancer Center.

PubMed

Almont, Thierry; Delannes, Martine; Ducassou, Anne; Corman, André; Bondil, Pierre; Moyal, Elizabeth; Schover, Leslie; Huyghe, Eric

2017-04-01

Providing early and better care in onco-sexuality and a better understanding of the sexual health care needs of patients before they start treatment is required. To assess sexual quality of life and need for sexology care of patients when they are starting radiotherapy. We performed a cross-sectional study of adult patients with cancer admitted for radiotherapy treatment in a regional comprehensive cancer center. We selected all consecutive adult patients scheduled to start radiotherapy within a 3-month period and excluded patients who could not complete the questionnaires. Patients were asked to complete the Sexual Quality of Life Questionnaire (SQoL) and a needs-assessment questionnaire. Total score on the SQoL and willingness (yes or no) to get help for a sexual problem. The study sample was composed of 77 men and 123 women. The average SQoL scores were 68.4 ± 20.9 and 47.1 ± 13.0 for men and women, respectively (P < .001). Of sexually active patients, 58% had decreased frequency of intercourse or had completely stopped sexual activity after their cancer diagnosis. Half the participants wanted care for their sexual concerns. The proportion desiring specific types of care varied from 28.5% (couple counseling) to 54.5% (sexual physician) with variation by sex or type of cancer. Furthermore, 11.5% of participants declared their willingness to join support groups. Early interventions before radiotherapy could improve sexual quality of life, particularly in women. Strengths are the SQoL validated in men and women, the original window for assessment, and the study location. Limitations are the monocentric design, the potential recall bias for data before cancer diagnosis, and the fact that some patients had treatments before radiotherapy. Our data suggest the need to examine the sexual health trajectory in a prospective fashion from diagnosis to survivorship. Almont T, Delannes M, Ducasson A, et al. Sexual Quality of Life and Needs for Sexology Care of Cancer