Psychosocial issues in colorectal cancer survivorship: the top ten questions patients may not be asking

Advances in colorectal cancer screening and treatment have increased survivorship significantly in recent years. This has led to an increased emphasis on the need for continuing patient care long after cancer treatment is completed. Colorectal cancer survivors may face a number of psychosocial issues following treatment, including cancer-related distress, adjustment to physical changes following treatment, and challenges related to returning to work. Although there are many resources available to assist with these challenges, many patients may not seek this information from their providers during follow-up care visits. This article highlights some of the most common patient concerns related to survivorship in colorectal cancer and serves as a reminder to ask about these concerns throughout the course of treatment and follow-up care.     

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.     

Understanding and Improving Knowledge of Cancer Survivorship Care Among College Providers

This study aimed to assess college providers’ basic knowledge of the health risks of young adult cancer survivors (YAS) and related care guidelines and to determine whether an educational in-service is an effective platform for increasing college health providers’ knowledge about survivorship care at a large university health center. During phase 1, staff from college health centers and office of disabilities in the Philadelphia area (n = 40 staff members from 24 colleges/universities) completed a needs assessment on their experiences with YAS and preferences for education and care coordination. During phase 2, a 1-h educational in-service, informed by results of the survey, was provided to 18 health center medical providers. While most providers indicated that YAS are at risk for chronic health conditions because of cancer treatment, nearly all were unfamiliar with the content of published long-term follow-up guidelines for cancer survivorship. Over half did not have knowledge of cancer survivorship services in their area. All respondents were interested in more education on cancer survivorship care. Attendees of the in-service increased their knowledge of survivorship follow-up guidelines, awareness of local survivorship resources, and comfort with caring for YAS at posttest relative to baseline. The in-service was highly acceptable to providers and feasible to implement. College providers had little baseline knowledge of cancer survivorship guidelines, but were motivated to obtain more information. Through an educational in-service, college health providers may be better equipped to provide acute and longitudinal survivorship care to a vulnerable population who are at risk for inadequate engagement in risk-based follow-up care.     

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.     

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.     

Implementing personalized pathways for cancer follow-up care in the United States: Proceedings from an American Cancer Society–American Society of Clinical Oncology summit

A new approach to cancer follow-up care is necessary to meet the needs of cancer survivors while dealing with increasing volume and provider shortages, knowledge gaps, and costs to both health care systems and patients. An approach that triages patients to personalized follow-up care pathways, depending on the type(s) and level(s) of resources needed for patients’ long-term care, is in use in the United Kingdom and other countries and has been shown to meet patients’ needs, more efficiently use the health care system, and reduce costs. Recognizing that testing and implementing a similar personalized approach to cancer follow-up care in the United States will require a multipronged strategy, the American Cancer Society and the American Society of Clinical Oncology convened a summit in January 2018 to identify the needed steps to move this work from concept to implementation. The summit identified 4 key strategies going forward: 1) developing a candidate model (or models) of care delivery; 2) building the case for implementation by conducting studies modeling the effects of personalized pathways of follow-up care on patient outcomes, workforce and health care resources, and utilization and costs; 3) creating consensus-based guidelines to guide the delivery of personalized care pathways; and 4) identifying and filling research gaps to develop and implement needed care changes. While these national strategies are pursued, oncology and primary care providers can lay the groundwork for implementation by assessing their patients’ risk of recurrence and the chronic and late effects of cancer as well as other health care needs and resources available for care and by considering triaging patients accordingly, referring patients to appropriate specialized survivorship clinics as these are developed, helping to support patients who are capable of self-managing their health, setting expectations with patients from diagnosis onward for the need for follow-up in primary care and/or a survivorship clinic, and improving coordination of care between oncology and primary care.     

Working without a net: leukemia and lymphoma survivors' perspectives on care delivery at end-of-treatment and beyond

This study explored survivors' perspectives on care delivery and supportive care needs during reentry. Fifty-one individual interviews were conducted with adult leukemia and lymphoma survivors, 3 to 48 months from treatment cessation. Survivors reported poor continuity of care across the patient-survivor transition, difficulty finding appropriate information/services, lack of preparation, lack of support for survivorship issues, and inadequate or poorly timed follow-up as factors contributing to adjustment difficulties at end of treatment and beyond. Improved care coordination is needed after active treatment, including use of an exit interview and delivery of services that are more congruent and better timed to meet ongoing and emergent survivorship needs.     

Improving Provision of Care for Long-term Survivors of Lymphoma

The progressive improvement of lymphoma therapies has led to a significant prolongation of patient survival and life expectancy. However, lymphoma survivors are at high risk of experiencing a range of early and late adverse effects associated with the extent of treatment exposure. Among these, second malignancies and cardiopulmonary diseases can be fatal, and neurocognitive dysfunction, endocrinopathy, muscle atrophy, and persistent fatigue can affect patients' quality of life for decades after treatment. Early recognition and reduction of risk factors and proper monitoring and treatment of these complications require well-defined follow-up criteria, close coordination among specialists of different disciplines, and a tailored model of survivorship care. We have summarized the major aspects of therapy-related effects in lymphoma patients, reviewed the current recommendations for follow-up protocols, and described a new hospital-based model of survivorship care provision from a recent multicenter Italian experience.     

Working Without a Net: Leukemia and Lymphoma Survivors’ Perspectives on Care Delivery at End-of-Treatment and Beyond

This study explored survivors’ perspectives on care delivery and supportive care needs during reentry. Fifty-one individual interviews were conducted with adult leukemia and lymphoma survivors, 3 to 48 months from treatment cessation. Survivors reported poor continuity of care across the patient–survivor transition, difficulty finding appropriate information/services, lack of preparation, lack of support for survivorship issues, and inadequate or poorly timed follow-up as factors contributing to adjustment difficulties at end of treatment and beyond. Improved care coordination is needed after active treatment, including use of an exit interview and delivery of services that are more congruent and better timed to meet ongoing and emergent survivorship needs.     

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

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.     

Cancer survivorship training: a pilot study examining the educational gap in primary care medicine residency programs

Background

Cancer survivors need high-quality follow-up care that addresses long-term problems related to cancer and their treatment. With growing numbers of cancer patients transitioning from oncological treatment to survivorship care, primary care physicians (PCPs) will play a major role in the delivery of survivorship care.

Objective

This pilot study was undertaken to provide initial insights into internal medicine (IM) and family medicine (FM) residents’ educational experience, training, and preparedness for practice as healthcare providers of adult cancer survivors (ACS).

Design

This study utilizes an anonymous cross-sectional, electronic survey of a sample of US IM and FM residents.

Participants

A total of 77 residents in their PGY-3 year of training responded to the survey, including 53 IM (69 %) and 24 FM (31 %) residents.

Results

The majority (97 %) of respondents performed as PCPs for ACS during their training, and 81 % expected to take care of such patients in the future. However, only a minority reported feeling very comfortable in this role or very confident of identifying cancer recurrence and potential long-term effects of cancer treatment (13 %, 21 %, and 15 %, respectively). Formal education in survivorship care was reported by 27 % of residents and was modestly associated with knowledge responses. High clinical exposure (defined as having ≥10 opportunities to perform as the PCP for ACS) was significantly associated with self-reported knowledge, comfort level, and self-confidence in being able to evaluate and manage potential long-term effects of cancer treatment and their symptoms.

Conclusions

Our results suggest there is a substantial disconnect between resident’s educational experience, training, and self-reported preparedness for practice in cancer survivorship in both IM and FM training specialties.

Implications for Cancer Survivors

Inadequate training in cancer survivorship represents a barrier to providing adequate cancer follow-up. Inexperience or unawareness of essential survivorship issues could lead to mistakes which affect survivors’ health and timely assessment of long-term cancer-associated morbidity. As PCPs will play a key role in the delivery of survivorship care, effective educational opportunities and achievement of competencies in adult cancer survivorship care by primary care trainees are needed.     

Development of Phase-Specific Breast Cancer Survivorship Care Plans

IntroductionPhase-specific survivorship care plans (SCPs) have the potential to be powerful tools in providing individualized, comprehensive survivorship care, particularly in terms of care coordination and transition, if used as dynamic documents.Materials and MethodsWe designed an initial follow-up care plan (FCP) to be used at the conclusion of curative therapy, as well as distinct, phase-specific FCPs for periodic use at 5-year and 10-year time points in the survivorship course. These FCPs incorporate the 4 essential components of survivorship care outlined by the Institute of Medicine: prevention, surveillance, intervention for consequences of cancer treatment, and coordination among health care providers.ResultsPhase-specific SCPs were designed by a multidisciplinary team with expertise in breast health, survivorship, and cancer care delivery across diverse practice settings. The FCPs were formulated to align with national guidelines and emergent, peer-reviewed literature, and reflect evolving recommendations regarding the duration of adjuvant hormone therapy. The SCPs were pilot-tested and successfully integrated into the existing work flow of the electronic medical records at each practice site.ConclusionPhase-specific SCPs were developed to incorporate new knowledge about evolving treatment recommendations, screening guidelines, and updated genetic information to encourage timely discussions relevant to the specific stage of survivorship.     

PPAC (programme personnalisé de l’après-cancer) : rationnel et mise en place

The growing number of breast cancer survivors challenges healthcare organizations, particularly oncology specialty and primary care providers. Currently, in France, the follow-up care is based on detection of recurrences, of second primary contralateral breast cancer, of long-term treatment sequelae, in addition to psychosocial consequences of cancer and its treatment. This review will discuss the evidence base and intents of breast cancer survivorship care plans (CSCPs) as a wellness model for cancer survivors in clinical setting, mainly providing health promotion recommendations such as regular exercise. The CPCPs involve multidisciplinary approach and patient–physician communication. Therefore, this comprehensive care will improve their quality of life, treatment compliance, and general health care maintenance. This article offers innovative guidance to implement the post-cancer patient care and includes the relevant templates to be submitted to the patients.     

The breast cancer experience of rural women: a literature review

This report is a review of studies that focus on rural breast cancer survivorship. It includes a total of 14 studies using large databases and 27 other studies using qualitative and quantitative methods. In our review of this literature, we identified four broad themes, including access to treatment and treatment type, medical providers and health information, psychosocial adjustment and coping, and social support and psychological support services. We review the findings of the rural breast cancer survivorship studies within each of these broad themes. A few of the findings of the review include that rural and urban women receive different primary treatments for breast cancer, that rural women may have greater difficulty negotiating their traditional gender roles during and after treatment, that rural women desire greater health-related information about their breast cancer, and that rural women have less access to mental health therapy. The review discusses the implications of these findings as well as the weakness in the literature.