A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways?

Abstract

Childhood, adolescent, and young adult (CAYA) cancer survivors are at risk of developing late effects associated with their cancer and its treatment. Survivors’ engagement with recommended follow-up care to minimize these risks is suboptimal, with many barriers commonly reported. This scoping review aims to summarize the barriers to accessing follow-up care, using the dimensions of Levesque’s framework for accessing healthcare. We retrieved quantitative studies addressing barriers and facilitators to accessing survivorship care in CAYA survivors from PubMed, EMBASE and CINAHL. Data was categorized into the five healthcare access dimensions outlined in Levesque’s framework: i) approachability, ii) acceptability, iii) availability and accommodation, iv) affordability, and v) appropriateness. We identified 27 quantitative studies in our review. Commonly reported barriers to accessing care included a lack of survivor and provider knowledge of cancer survivorship, poor health beliefs, low personal salience to engage in follow-up care, high out-of-pocket costs and survivors living long distances from clinical services. Many studies reported increased barriers to care during the transition from paediatric to adult-oriented healthcare services, including a lack of developmentally appropriate services, lack of appointment reminders, and a poorly defined transition process. Healthcare-related self-efficacy was identified as an important facilitator to accessing follow-up care. The transition from pediatric to adult-oriented healthcare services is a challenging time for childhood, adolescent, and young adult cancer survivors. Optimizing CAYAs’ ability to access high-quality survivorship care thus requires careful consideration of the quality and acceptability of services, alongside financial and physical/practical barriers (eg distance from available services, appointment-booking mechanisms). Levesque’s model highlighted several areas where evidence is well established (eg financial barriers) or lacking (eg factors associated with engagement in follow-up care) which are useful to understand barriers and facilitators that impact access to survivorship for CAYA cancer survivors, as well as guiding areas for further evaluation.

Mapping the supportive care needs and quality of life of adult survivors of childhood cancer at a comprehensive cancer center in the Middle East

“…Previous reports suggested similar findings in adults and AYA groups 43 , 44 . This relationship, marginally significant on conventional levels, might be suggestive of a transition point where adult survivors of childhood cancer start to face increased difficulties navigating healthcare systems and require more information about their health and care 45 . This could be attributed to factors such as a shift in healthcare responsibility from parents to themselves, a transition from pediatric to adult care, or increased health complications with age.…”

Proteomics and personalized patient-derived xenograft models identify treatment opportunities for a progressive malignancy within a clinically actionable timeframe and change care

“…Despite therapeutic and diagnostic advancements, cancer remains a leading cause of mortality in children, adolescents, and young adults (CAYA), with an average of 943 new cases and 119 deaths annually in Canada (8,9). The molecular landscape of CAYA cancers differs significantly from that of adult malignancies, posing challenges in translating precision oncology data into effective therapies (10,11).…”