Evaluation of a Transition to Survivorship Program for Pediatric, Adolescent and Young Adult Cancer Patients and Caregivers

Abstract

Abstract Purpose 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 efficacy of a structured transition program, bridging treatment to survivorship, to reduce distress and anxiety and increase perceived preparedness for survivors and caregivers. Methods Bridge to Next Steps is a 2-visit program, within 8 weeks of treatment completion and 7 months post-treatment, 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. Results Most 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). Conclusions Bridge 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.