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

Abstract

AbstractBackgroundSurvivorship education and anticipatory guidance represent 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.ProcedureBridge to Next Steps is a two‐visit program, within 8 weeks prior to treatment completion and 7 months post treatment, which provides survivorship education, psychosocial screening, and resources. Fifty survivors (age range 1–23 years) and 46 caregivers participated. Participants completed pre‐ and post‐intervention measures: Distress Thermometer and Patient‐Reported Outcomes Measurement Information System (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 (77.8%) 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 < .01). Survivors’ scores remained the same, which were low at baseline. Survivors and caregivers felt more prepared for survivorship from pre to post intervention (p = .02, <.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. Effective transition programs that better prepare and support pediatric and AYA cancer survivors and families from active treatment to survivorship care can contribute to healthy adjustment.