The National Cancer Policy Forum of the National Academies of Sciences, Engineering and Medicine sponsored a workshop on July 24 and 25, 2017 on Long-Term Survivorship after Cancer Treatment. The workshop brought together diverse stakeholders (patients, advocates, academicians, clinicians, research funders, and policymakers) to review progress and ongoing challenges since the Institute of Medicine (IOM)’s seminal report on the subject of adult cancer survivors published in 2006. This commentary profiles the content of the meeting sessions and concludes with recommendations that stem from the workshop discussions. Although there has been progress over the past decade, many of the recommendations from the 2006 report have not been fully implemented. Obstacles related to the routine delivery of standardized physical and psychosocial care services to cancer survivors are substantial, with important gaps in care for patients and caregivers. Innovative care models for cancer survivors have emerged, and changes in accreditation requirements such as the Commission on Cancer’s (CoC) requirement for survivorship care planning have put cancer survivorship on the radar. The Center for Medicare & Medicaid Innovation’s Oncology Care Model (OCM), which requires psychosocial services and the creation of survivorship care plans for its beneficiary participants, has placed increased emphasis on this service. The OCM, in conjunction with the CoC requirement, is encouraging electronic health record vendors to incorporate survivorship care planning functionality into updated versions of their products. As new models of care emerge, coordination and communication among survivors and their clinicians will be required to implement patient- and community-centered strategies.

QUESTION ASKED: How do older breast cancer survivors make decisions about persisting with aromatase inhibitors (AIs) and manage treatment-related challenges?SUMMARY ANSWER: Essential to women's decision making to persist with AIs was the reality of acknowledging that taking the pill marked a new phase of treatment rather than the end of the cancer experience. When women experienced treatment-related challenges, such as adverse effects that affected quality of life, they relied on self-management strategies rather than the support of their medical providers.WHAT WE DID: Eligible women were recruited from a variety of settings. Single-session, indepth interviews using a semistructured interview guide were conducted with women age 65 years or older who were treated for locoregional breast cancer and had started an AI 4 to 36 months before study enrollment. Data analysis followed the systematic guidelines of constructivist grounded theory.WHAT WE FOUND: A total of 27 women were interviewed, and they reported that integrating the AI treatment into daily life posed many challenges. The adverse effects of AIs were difficult to disentangle from what women attributed to comorbid conditions or getting older. This challenge in attribution, coupled with less frequent contact with their oncology team, resulted in many women "winging it" or persisting with the AI despite significant struggles. In particular, participants expressed concerns about the impact of perceived adverse effects on quality of life and ability to carry out social roles. Many reported lack of professional guidance or support with respect to persisting with the AI, especially when adverse effects were present, and relied on a variety of self-management strategies to maintain treatment with the AI. The women often described circumstances, or potential tipping points, under which they might discontinue the AI prematurely. BIAS, CONFOUNDING FACTOR(S), DRAWBACKS:Although they comprised a small sample limited to one geographic region of the country, the women were from diverse racial, cultural, and social backgrounds that added depth to their experiences of decision making. REAL-LIFE IMPLICATIONS:Older breast cancer survivors who are persisting with AI treatment may be "winging it," attempting to self-manage adverse effects on their own, and may be at risk for early discontinuation. Participants needed AI-specific education, support, and practical selfmanagement strategies to improve both medication persistence and quality of life. We offer possible strategies to enhance clinical management and adherence. Patients and MethodsWe used grounded theory methodology to conduct in-depth, semistructured interviews and analyze data among patients with breast cancer diagnosed at age 65 years or older who were receiving an AI. The goal of the interviews was to understand decision making regarding persisting with AIs. Interview transcripts were systematically analyzed to identify emergent categories and relationships. ResultsInterviews were conducted with 27 women. After ...

Findings are discussed in the context of important opportunities for clinical management, age-appropriate interventions, and implications for future research. A better understanding of psychosocial late effects, specifically related to school and work trajectories after cancer, is critical to survivorship care for adolescent and young adult cancer survivors.

Objective: To explore the transition to self-care among a sample of emerging adult cancer survivors after hematopoietic cell transplantation (HCT). Research Approach: Qualitative Setting: The hematology outpatient setting at City of Hope National Medical Center in Southern California. Participants: 18 HCT survivors who were 18–29 years of age at the time of HCT for a primary hematologic malignancy and 8–60 months post-HCT participated in the study. Methodologic Approach: We conducted in-depth, semi-structured interviews and analyzed interview transcripts using Grounded Theory methodology. Findings: Health-related setbacks following HCT disrupted not only participants’ journey towards self-care, but also their overarching developmental trajectory towards adulthood. Physically, participants struggled with lack of personal space around caregivers, but felt unready to live on their own due to persistent health issues. Socially, they relied on multiple caregivers to avoid relying too much on any one person. Financially, participants worried about prolonged dependence and increased needs in the future due to their cancer experience. Interpretation: The transition to self-care after HCT is deeply connected to broader developmental processes of emerging adulthood. Specifically, physical-spatial, social, and financial setbacks during survivorship after HCT were perceived as threats to independence and self-sufficiency. Implications for Nursing: Nurses can support the transition to self-care among emerging adults after HCT by recognizing the broader developmental impact of their cancer experience. We provide examples of how to incorporate these findings into patient-centered care for this population, such as identifying opportunities for independence in care plans and goal-setting and availability of financial counseling.