Survivorship care after breast cancer: Follow‐up practices of Australian health professionals and attitudes to a survivorship care plan

Objective: The increasing number of breast cancer survivors and the complexity of follow‐up care make the provision of high‐quality survivorship care a challenge. This study explored the follow‐up practices of health professionals and their attitudes to alternative models such as shared care and the use of a survivorship care plan. Methods: Specialist oncologists (surgeons, medical and radiation oncologists) breast physicians and breast‐care nurses completed an online survey. Results: A total of 217 practitioners completed the survey, which was estimated to include 42.8% of oncologists treating breast cancer in Australia. One‐third of responding specialists reported spending more than 25% of their clinical time providing follow‐up care. They reported many positive aspects to follow‐up consultations and viewed follow‐up care as an important part of their clinical role but expressed concern about the sustainability of follow‐up care in their practices. The follow‐up intervals and recommendations were in line with national guidelines. The specialists were supportive of sharing follow‐up care with primary‐care physicians, breast physicians and breast‐care nurses. Most professionals felt that a survivorship care plan would improve care and said they would use a proforma. Conclusion: The oncologists felt that follow‐up care was an important part of their role and they were supportive of the concepts of shared care programs and a survivorship care plan. Input from consumers is required to evaluate the acceptability of these alternative models and to assess ways of implementing these changes to work towards a more comprehensive and sustainable method of delivering survivorship care.     

Adult Cancer Survivorship: Evolution,Research, and Planning Care

Increases in the number of adult cancer survivors and other issues have forced the oncology community to examine, evaluate, and alter the cancer care paradigm. Pediatric oncologists are grappling with the task of transitioning a growing population of adult survivors of childhood cancer to adult medicine, while oncologists caring for adult cancer survivors are seeking models of follow‐up care that are acceptable to patients and providers. Workforce and access‐to‐care issues suggest that primary care providers will see more cancer survivors in their practices across time, although it is unclear how prepared they are for this task. Translational research is needed to develop evidence‐based clinical care and survivorship care plans. A broad picture of the evolving field of adult cancer survivorship is presented. The recent focus on young adult survivors of childhood cancer, an overview of translational research needed to inform the physical and psychosocial care of cancer survivors, and the roles of primary and specialty care providers managing this population is examined. Finally, an overview of evolving treatment summary and care plan initiatives is presented. CA Cancer J Clin 2009;59:391–410. © 2009 American Cancer Society, Inc.     

Shared mental models of cancer survivorship care

Quality cancer survivorship care relies on care continuity within the healthcare team. The purpose of this study was to explore the perspectives of healthcare team members regarding cancer survivorship care using the framework of shared mental models. Semi‐structured interviews of cancer survivors, primary support individuals, oncology providers, primary care providers and registered nurses were completed. Data were extrapolated to seven primary themes with associated secondary themes. Primary themes included survivor definition and identity, care setting, team member roles, care gaps, survivor needs, barriers to care and facilitators of care. Through these themes, participants emphasised the individuality of the survivorship experience, acknowledged care gaps and described ongoing needs of cancer survivors. Information provision and communication were noted as care facilitators. Through clarification of team member roles, healthcare providers will be equipped to promote cancer survivor transition by focusing on care continuity, communication and collaboration.     

Survivorship care for older adults with cancer: U13 conference report

Older adult cancer survivors currently account for almost 60% of all cancer survivors. The number of older cancer survivors will continue to increase as the population ages and as patients' live longer after a cancer diagnosis. As part of cancer center accreditation, the American College of Surgeons Commission on Cancer® (CoC) has placed great importance on survivorship care planning. While the CoC has set standards for general survivorship care, there is sparse evidence on how to best care for older adult cancer survivors. Concern exists among the medical community that survivorship care plans could increase paperwork without improving outcomes. Given the diverse and unique needs of older adult cancer survivors, the inter-professional team provides a structure and process for survivorship care built around the particular needs of older adults. The Cancer and Aging Research Group (CARG), in partnership with the NIA/NCI, held a U13 conference in May 2015 in part to discuss survivorship care for older adults with cancer. This report discusses four themes that emerged from one section of the conference: (1) survivorship care is a process that continually evolves to meet the needs of older adults; (2) older adult cancer survivors have unique needs and care plans should be tailored to meet these needs; (3) the inter-professional team is ideally suited to structure survivorship care of older adults; (4) patient advocacy must be encouraged throughout the cancer care continuum. As evidence based survivorship practices develop, the unique needs of older adults need to be given substantial attention.     

Primary Care Physician Perspectives on Caring for Adult Survivors of Hematologic Malignancies and Hematopoietic Cell Transplantation

BackgroundPrimary care physicians (PCPs) may face barriers to caring for hematologic malignancy and hematopoietic cell transplantation (HCT) survivors.MethodsA Web-based survey consisting of 40 questions and 2 case scenarios was administered to 302 PCPs at 2 large integrated health care systems. The questionnaire assessed perceived barriers to delivery of care to hematologic malignancy/HCT survivors, resources available to care for cancer survivors, practices for care coordination with hematologist-oncologists, and preferred models of care delivery.ResultsOverall response rate was 30% (n = 86). PCPs reported several barriers such as lack of resources to facilitate care (69%), lack of awareness of screening/prevention guidelines (55%) and psychosocial needs of survivors (65%), inadequate time (65%), and patient preference to follow up with their oncologists (66%). They expressed confidence in caring for general medical issues (84%) and general cancer screening (73%), but they preferred that oncologists manage cancer-related medical issues (42%) as well as screen for cancer recurrence (52%) and secondary cancers (55%). In multivariable analysis, PCPs who had previously cared for a large number of hematologic malignancy/HCT survivors and those with a longer time since graduation from medical school had greater confidence in managing cancer-related medical issues.ConclusionPCPs report several barriers in providing care to hematologic malignancy/HCT survivors. Clinical experience with this patient population is associated with greater confidence in providing survivorship care. Several barriers identified by PCPs in providing survivorship care to hematologic malignancy/HCT survivors are potentially addressable by education and clinical decision support tools and guidelines, thereby enhancing the patients’ clinical experience and care coordination with hematologist-oncologists.     

Predictors of change in unmet supportive care needs in cancer

Objective: Patient Reported Outcome (PRO) assessments can assist health professionals to tailor their health practices to the individual needs of patients and improve patient care over time. The present study assessed prospective predictors of unmet supportive care needs in cancer patients over a six‐month period. Methods: Participants were recruited from a regional cancer treatment centre in Australia and completed the Supportive Care Needs Survey (SCNS) at recruitment (n=439; 61.4% response rate) and six months follow‐up (n=396). Hierarchical logistic regression was used to identify predictors of change in unmet needs across each supportive care domain. Predictor variables were socio‐demographic, treatment and psychosocial factors including depression, anxiety, social support, and patient satisfaction. Results: Unmet needs were reported by approximately two‐thirds of patients at baseline and half of patients at six months follow‐up. Having unmet needs at baseline was the strongest predictor of unmet needs at six months. Longer time since diagnosis was a consistent predictor of greater unmet needs, associated with change in physical/daily living, psychological and health system and information unmet needs over time. By contrast, a complex relationship was found in that patient satisfaction, psychosocial and treatment characteristics predicted higher needs in some domains and lower needs in others. Conclusions: Unmet supportive care needs persist over time and psychological needs may emerge later in the illness continuum. Interventions to meet the needs of longer term cancer survivors are needed and should closely articulate with reported supportive care needs. Copyright © 2009 John Wiley & Sons, Ltd.     

The LIVESTRONG Survivorship Center of Excellence Network

Introduction  The LIVESTRONG™ Survivorship Center of Excellence Network consists of eight National Cancer Institute-designated Comprehensive Cancer Centers funded by the LAF between 2004 and 2008. The Network was created to accelerate the pace of progress in addressing the needs of the growing survivor community. Methods  This paper will briefly describe some of the salient issues surrounding the care of cancer survivors, and examine models of survivorship care that are being developed in individual Centers of Excellence (COE) as well as in the overall Network. Results and Conclusions  As the recommendations and policies for optimal survivorship care have to be feasible and relevant in the community setting, each COE is partnered with up to three community affiliates. Through these partnerships, the community affiliates develop survivorship initiatives at their institutions with support and guidance from their primary COE.     

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

Objective: 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. Methods: 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 (?15 years of age) completed key informant interviews and 21 Latino parents participated in focus groups. Results: 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. Conclusions: 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. Copyright © 2010 John Wiley & Sons, Ltd.     

The views of bowel cancer survivors and health care professionals regarding survivorship care plans and post treatment follow up

Goals of work  Increasing numbers of people survive cancer beyond diagnosis and treatment. Many survivors have ongoing needs and they may encounter fragmented, poorly coordinated follow up care. Survivorship care plans (SCP) have been promoted as a key aspect of survivorship care. This study aimed to survey key stakeholders in the care of people with colorectal cancer (survivors, primary care providers and hospital-based healthcare professionals) regarding follow-up and SCP. Patients and methods  In study 1, cancer survivors completed a questionnaire regarding their follow-up and experiences during survivorship. Participants’ primary care physicians completed a phone interview regarding proposed SCP elements. A subgroup of survivors reviewed a sample SCP and participated in a phone interview regarding this. In study 2, healthcare professionals working with colorectal cancer patients completed a questionnaire regarding follow-up and proposed elements of a SCP. Main results  Twenty survivors completed the questionnaire, 14 primary care providers completed a phone interview and 12 survivors reviewed the sample SCP. Ninety-five healthcare professionals (30 medical professionals and 65 nurses) completed the questionnaire. There was strong support for core elements of the SCP. Additionally, nurses and survivors expressed support for supportive care and psychosocial elements. There was lack of consensus regarding who should prepare and discuss the SCP. Conclusions  There is strong support for the development and use of SCPs for bowel cancer survivors. There is some variation in opinion regarding ideal content of the SCP, who might prepare it, and how it might be discussed and utilised. Implications for Cancer Survivors  Overcoming identified barriers to implementing SCPs for bowel cancer survivors is necessary for high quality cancer care.     

Spirituality and religion in oncology

Despite the difficulty in clearly defining and measuring spirituality, a growing literature describes its importance in oncology and survivorship. Religious/spiritual beliefs influence patients' decision‐making with respect to both complementary therapies and aggressive care at the end of life. Measures of spirituality and spiritual well‐being correlate with quality of life in cancer patients, cancer survivors, and caregivers. Spiritual needs, reflective of existential concerns in several domains, are a source of significant distress, and care for these needs has been correlated with better psychological and spiritual adjustment as well as with less aggressive care at the end of life. Studies show that while clinicians such as nurses and physicians regard some spiritual care as an appropriate aspect of their role, patients report that they provide it infrequently. Many clinicians report that their religious/spiritual beliefs influence their practice, and practices such as mindfulness have been shown to enhance clinician self‐care and equanimity. Challenges remain in the areas of conceptualizing and measuring spirituality, developing and implementing training for spiritual care, and coordinating and partnering with chaplains and religious communities. CA Cancer J Clin 2013;63:280–289 . ^© 2013 American Cancer Society .     

Implementing improved post-treatment care for cancer survivors in England,with reflections from Australia,Canada and the USA

Increasing cancer incidence together with improved survival rates are contributing to the growing number of cancer survivors. Survivors may encounter a range of potential effects as a result of the cancer itself or cancer treatments. Traditionally, the major focus of follow-up care has been on detection of cancer recurrence; however, the efficacy of such strategies is questionable. Traditional follow-up frequently fails to identify or adequately address many survivors'' concerns. Aftercare needs to be planned to enable better outcomes for survivors, while using scarce health-care resources efficiently. This review focuses on provision of survivorship care, rather than on research. England''s National Cancer Survivorship Initiative has developed principles for improved care of those living with and beyond cancer. These include risk-stratified pathways of care, the use of treatment summaries and care plans, information and education to enable choice and the confidence to self manage, rapid re-access to specialist care, remote monitoring and well-coordinated care. Many of these principles are relevant internationally, though preferred models of care will depend on local circumstances.     

Health care use during cancer survivorship: Review of 5 years of evidence

Improvements in treatment strategies have resulted in increasing survival rates among patients diagnosed with cancer but also result in a growing population of individuals who have greater health care needs. These needs will persist from diagnosis throughout the continuing phase of care, or the survivorship phase. To better define models of survivorship care, there must be a strong evidence base in survivor health care use patterns. The objective of this review, which covers studies from 2012 to January 2018, was to evaluate the available evidence on patterns of health care visits among survivors of adult cancers and to understand what is known about the rate of health care visits, the physician specialties associated with these visits, and/or the types health care settings (eg, outpatient, emergency room). The findings underscore the importance of primary care, with the majority of studies reporting that >90% of survivors visited a primary care provider in the prior year. Visits to oncologists and/or other physician specialties were positively associated with receiving cancer screenings and obtaining quality care for noncancer-related conditions. High care density/low care fragmentation between physician specialties had lower costs and a lower likelihood of redundant health care utilization. The follow-up in almost all studies was 3 years, providing short-term evidence; however, as the survivorship period lengthens with improved treatments, longer follow-up will be required. The long-term patterns with which survivors of cancer engage the health care system are critical to designing long-term follow-up care plans that are effective in addressing the complex morbidity that survivors experience.     

Experiences and coping strategies related to food and eating up to two years after the termination of treatment in patients with head and neck cancer

The purpose was to describe how patients with head and neck cancer experience and cope with difficulties related to food and eating up to two years after the termination of treatment. One hundred and thirty‐five patients were followed with thematically structured interviews. The patients’ responses of nutritional issues were categorised using similarities and differences technique. In the analysis, six categories emerged describing the process of eating and drinking from the end of treatment up to two years after treatment: The constant battle—eating and drinking over time, Food alterations and nutritional support—both pros and cons, Standing aside and not joining in when eating together with others, Finding ways to cope and to make the new a part of everyday life, Relationships and social support—hindrances and facilitators, and Longing for “normality.” Results imply that patients struggle with physiological, psychological and social aspects related to food and eating, and use coping mechanisms to facilitate their eating problems. The best practice for rehabilitation and follow‐up must be established in order to meet the multifaceted needs of head and neck cancer survivors.     

Adult cancer survivorship care: experiences from the LIVESTRONG centers of excellence network

Background

The objectives of this study were to characterize survivorship models of care across eight LIVESTRONG Survivorship Center of Excellence (COE) Network sites and to identify barriers and facilitators influencing survivorship care.

Methods

Using the framework of the Chronic Care Model (CCM), quantitative and qualitative methods of inquiry were conducted with the COEs. Methods included document reviews, key informant telephone interviews with 39 participants, online Assessment of Chronic Illness Care (ACIC) surveys with 40 participants, and three site visits.

Results

Several overarching themes emerged in qualitative interviews and were substantiated by quantitative methods. Health system factors supporting survivorship care include organization and leadership commitment and program champions at various levels of the health care team. System barriers include reimbursement issues, lack of space, and the need for leadership commitment to support changes in clinical practices as well as having program ??champions?? among clinical staff. Multiple models of care include separate survivorship clinics and integrated models as well as consultative models. COEs?? scores on the ACIC survey showed overall ??reasonable support?? for survivorship care; however, the clinical information system domain was least developed. Although the ACIC findings indicated ??reasonable support?? for self-management, the qualitative analysis revealed that self-management support was largely limited to health promotion provided in clinic-based education and counseling sessions, with few COEs providing patients with self-management tools and interventions.

Conclusions

The CCM framework captured experiences and challenges of these COEs and provided insight into the current state of survivorship care in the context of National Cancer Institute-designated comprehensive cancer centers. Findings showed that cancer patients and providers could benefit from clinical information systems that would better identify candidates for survivorship care and provide timely information. In addition, a crucial area for development is self-management support outside of clinical care.

Implications for cancer survivors

Cancer survivors may benefit from learning about the experience and challenges faced by the eight LIVESTRONG Centers of Excellence in developing programs and models for cancer survivorship care, and these findings may inform patient and caregiver efforts to seek, evaluate, and advocate for quality survivorship programs designed to meet their needs.     

Equitably improving outcomes for cancer survivors and supporting caregivers: A blueprint for care delivery,research, education,and policy

Cancer care delivery is being shaped by growing numbers of cancer survivors coupled with provider shortages, rising costs of primary treatment and follow-up care, significant survivorship health disparities, increased reliance on informal caregivers, and the transition to value-based care. These factors create a compelling need to provide coordinated, comprehensive, personalized care for cancer survivors in ways that meet survivors’ and caregivers’ unique needs while minimizing the impact of provider shortages and controlling costs for health care systems, survivors, and families. The authors reviewed research identifying and addressing the needs of cancer survivors and caregivers and used this synthesis to create a set of critical priorities for care delivery, research, education, and policy to equitably improve survivor outcomes and support caregivers. Efforts are needed in 3 priority areas: 1) implementing routine assessment of survivors’ needs and functioning and caregivers’ needs; 2) facilitating personalized, tailored, information and referrals from diagnosis onward for both survivors and caregivers, shifting services from point of care to point of need wherever possible; and 3) disseminating and supporting the implementation of new care methods and interventions.     

Development and evaluation of a holistic surgical head and neck cancer post‐treatment follow‐up clinic using touchscreen technology—Feasibility study

The efficacy of traditional follow‐up care is being challenged, as cancer survivors' supportive and psychological needs are often neither identified, nor addressed. This study's aim was to develop a holistic surgical follow‐up clinic for oral and oropharyngeal cancer patients were participants completed a disease‐specific health‐related quality of life tool (UWQOLv4) and item prompt list (Patient Concern Inventory) on a touchscreen computer. Information generated was used to focus the consultation on patient's identified needs and concerns. By means of a prospective non‐randomised, pre‐test post‐test design, this follow‐up clinic was evaluated using the patient enablement instrument (PEI) and patient content checklist (PCC). Feasibility was explored from the patient perspective (satisfaction survey) and clinician perspective (qualitative interview). Forty‐four consecutive patients were recruited. Findings demonstrating five of the eight topics (overall QOL, emotions, head and neck symptoms, side‐effects of treatment, chronic non‐specific) on PCC were discussed more frequently, but changes were not statistically significant. The PEI highlighted a trend towards perceived improvement in four of the six items. Using touchscreen computers to aid communication during routine follow‐up was reported as both feasible and beneficial by patients and clinicians. Providing a patient‐focused follow‐up consultation can facilitate the identification of unmet needs, permitting timely and appropriate intervention being initiated.     

Can health beliefs help in explaining attendance to follow‐up care? The Swiss Childhood Cancer Survivor Study

Objective: Improved treatment has increased the survival of childhood cancer patients in recent decades, but follow‐up care is recommended to detect and treat late effects. We investigated relationships between health beliefs and follow‐up attendance in adult childhood cancer survivors. Methods: Childhood cancer survivors aged younger than 16 years when diagnosed between 1976 and 2003, who had survived for more than 5 years and were currently aged 20+ years, received a postal questionnaire. We asked survivors whether they attended follow‐up in the past year. Concepts from the Health Belief Model (perceived susceptibility and severity of future late effects, potential benefits and barriers to follow‐up, general health value and cues to action) were assessed. Medical information was extracted from the Swiss Childhood Cancer Registry. Results: Of 1075 survivors (response rate 72.3%), 250 (23.3%) still attended regular follow‐up care. In unadjusted analyses, all health belief concepts were significantly associated with follow‐up (p<0.05). Adjusting for other health beliefs, demographic, and medical variables, only barriers (OR=0.59; 95%CI: 0.43–0.82) remained significant. Younger survivors, those with lower educational background, diagnosed at an older age, treated with chemotherapy, radiotherapy, or bone marrow transplantation and with a relapse were more likely to attend follow‐up care. Conclusions: Our study showed that more survivors at high risk of cancer‐ and treatment‐related late effects attend follow‐up care in Switzerland. Patient‐perceived barriers hinder attendance even after accounting for medical variables. Information about the potential effectiveness and value of follow‐up needs to be available to increase the attendance among childhood cancer survivors. Copyright © 2010 John Wiley & Sons, Ltd.