Care Transitions in Childhood Cancer Survivorship: Providers' Perspectives

Abstract

Purpose: Most adolescent and young adult (AYA)-aged childhood cancer survivors develop physical and/or psychosocial sequelae; however, many do not receive long-term follow-up (LTF) critical for screening, prevention, and treatment of late effects. To develop a health services research agenda to optimize care models, we conducted qualitative research with LTF providers examining existing models, and successes and challenges in maintaining survivors' connections to care across their transition to adulthood. Methods: We interviewed 20 LTF experts (MDs, RNs, social workers, education specialists, psychologists) from 10 Children's Oncology Group-affiliated institutions, and analyzed data using grounded theory and content analysis techniques. Results: Participants described the complexity of survivors' healthcare transitions. Survivors had pressing educational needs in multiple domains, and imparting the need for prevention was challenging. Multidisciplinary LTF teams focused on prevention and self-management. Care and decisions about transfer were individualized based on survivors' health risks, developmental issues, and family contexts. An interplay of provider and institutional factors, some of which were potentially modifiable, also influenced how transitions were managed. Interviewees rarely collaborated with community primary care providers to comanage patients. Communication systems and collective norms about sharing care limited comanagement capacity. Interviewees described staffing practices, policies, and informal initiatives they found reduced attrition. Conclusions: Results suggest that survivors will benefit from care models that better connect patients, survivorship experts, and community providers for uninterrupted LTF across transitions. We propose research priorities, framing attrition from LTF as a public health concern, transition as the central challenge in LTF, and transition readiness as a multilevel concept.

Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative study of survivorship providers

“…Previous research in transitional care for childhood cancer survivors has emphasized the need for multilevel interventions to eliminate barriers to successful transitions . Within this context of existing literature, our findings are in agreement with previous research and additionally suggest several specific system‐ and provider‐level recommendations for program development.…”

“…As additional research is needed in this area, a comprehensive, empirically validated socioecologic framework for cancer survivorship transition research and clinical care is in development and offers great promise . Ultimately, the ideal model of transitional care for childhood cancer survivors will address the needs of survivors, parents, and providers, but very little is known about the care preferences of these key stakeholders . The purpose of this exploratory study is to identify indicators of success in current transitional care practices for young adult survivors of childhood cancer as reported by interdisciplinary members of survivorship care teams.…”

“…18,19 Ultimately, the ideal model of transitional care for childhood cancer survivors will address the needs of survivors, parents, and providers, but very little is known about the care preferences of these key stakeholders. [20][21][22][23] The purpose of this exploratory study is to identify indicators of success in current transitional care practices for young adult survivors of childhood cancer as reported by interdisciplinary members of survivorship care teams.…”

Ethical issues in the care of adolescent and young adult oncology patients

“…The transition to adult providers similarly presents barriers and challenges to AYA survivors, including attachment to previous providers, a lack of adult providers with cancer survivor expertise, cognitive deficits in patients, unstable social situations, and other psychosocial factors . To provide better survivorship and transition support, care models have been proposed that better connect patients, survivorship experts, and community providers to provide long‐term follow‐up, but there is a deficiency of data and infrastructure to support widespread implementation of such models . Despite this lack of evidence, some groups have developed useful strategies for supporting transitions in AYA cancer survivors (Table ).…”

Intervention‐focused research for childhood cancer survivors: “It takes a village…”

“…But it is advantageous to include disciplines outside of pediatric oncology, including insurance companies, hospital administrators, and support services provided by organizations both inside medicine and in the wider community. This process has started and will involve rigorous research methods and the input of multidisciplinary expertise to ensure that findings can provide the foundation for meaningful intervention‐focused research.…”