Evaluation of a transition to survivorship program for pediatric, adolescent, and young adult cancer patients and caregivers

Abstract

Survivorship education and anticipatory guidance represents an unmet need for pediatric, adolescent, and young adult (AYA) cancer survivors and their caregivers when treatment ends. This pilot study evaluated the feasibility, acceptability, and preliminary e cacy of a structured transition program, bridging treatment to survivorship, to reduce distress and anxiety and increase perceived preparedness for survivors and caregivers. MethodsBridge to Next Steps is a 2-visit program, within 8 weeks of treatment completion and 7 months posttreatment, which provides survivorship education, psychosocial screening, and resources. Fifty survivors and 46 caregivers participated. Participants completed pre-and post-intervention measures: Distress Thermometer and PROMIS anxiety/emotional distress (ages ≥ 8 years), and perceived preparedness survey (ages ≥ 14 years). AYA survivors and caregivers completed a post-intervention acceptability survey. ResultsMost participants (92.59%) completed both visits, and most AYA survivors (57.1%) and caregivers (76.5%) endorsed the program as helpful. Caregivers' distress and anxiety scores decreased from pre-to post-intervention (p < 0.01). Survivors' scores remained the same, which were low at baseline. Participants felt more prepared for survivorship from pre-to post-intervention (p = 0.02, p < 0.01, respectively). ConclusionsBridge to Next Steps was feasible and acceptable for most participants. AYA survivors and caregivers felt more prepared for survivorship care after participation. Caregivers reported decreased anxiety and distress from pre-to post-Bridge, whereas survivors remained at a low level for both. Implications for Cancer Survivors:Effective transition programs that better prepare and support pediatric and AYA cancer survivors and families from active treatment to survivorship care will contribute to healthy adjustment.Recognizing the need to ll the knowledge and support gaps during the transition from treatment to survivorship, this will be one of the few known studies to comprehensively evaluate a structured 2-visit transition program, Bridge to Next Steps, which was designed based upon input from survivors, caregivers, and multidisciplinary pediatric oncology providers [6] and takes an innovative processoriented approach. Speci cally, this pilot study aimed to evaluate the acceptability and preliminary e cacy of a structured program, bridging active treatment to survivorship care, to reduce distress and anxiety and increase feelings of preparedness for pediatric and AYA cancer survivors and caregivers. It was hypothesized that a structured transition intervention would be feasible and acceptable and would be associated with reduced distress and anxiety and increased feeling of preparedness for transition for pediatric and AYA cancer survivors and their caregivers. MethodsStructured 2-Visit Transition Program Intervention. Patient and caregiver feedback from a previously completed study [6] was used to inform the development of a new structured transition program to bette...

Health Care Transitions Among Adolescents and Young Adults With Cancer

“…Notably, much of the literature on transition in AYA survivors, and associated barriers, has emerged from studies of childhood and adolescent cancer survivors entering adulthood. 35,63,66,[82][83][84][85][86][87][88][89][90] Beyond single-center, disease-specific reports, 91,92 and the documented discomfort of adult PCPs in following long-term survivors, [93][94][95] there are very limited data available on transition of young adult survivors who move directly from acute oncologic care to longitudinal care by the primary care provider. Additional work is needed to elucidate successful approaches to transition, as well as unique barriers that need to be overcome, in this population.…”

“…75 Few studies have concentrated on optimizing transitions. There are several small studies assessing the feasibility and acceptability of structured transition programs 90 or different modes of transitional practice 115,116 and one larger ongoing study assessing multilevel barriers to successful transition (The Improving Support for Survivors…”

“…75 Few studies have concentrated on optimizing transitions. There are several small studies assessing the feasibility and acceptability of structured transition programs 90 or different modes of transitional practice 115,116 and one larger ongoing study assessing multilevel barriers to successful transition (The Improving Support for Survivors Engaged in Transition study [National Cancer Institute, NCI P30 CA138292]). Beyond these, there are few active intervention trials targeting transitional practices in this population.…”

Disparities in care and outcomes for adolescent and young adult lymphoma patients

“…On a systems level, there can be limited communication between oncologists and primary care physicians, further hampering the transition [40]. Structured transition programs with communication between survivorship clinics and primary care providers are under study for this population [40,41].…”