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

Оценка программы перехода к наблюдению после завершения лечения для детей, подростков и молодых взрослых, перенесших рак, и лиц, осуществляющих уход
Kristin Bingen, Jeffrey Karst, Lynnette Anderson, Sherilynn F. Chan, Anna Jordan, Jocelyn Morin, Julie Nichols, Akasha Palou‐Torres, Rachel Phelan, Debra Schmidt, Ke Yan, Jennifer A. Hoag
2023-03-07

caregiver anxiety and distresspediatric and AYA cancerpsychosocial screeningsurvivorship educationsurvivorship transition program
BACKGROUND: Survivorship 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. PROCEDURE: Bridge 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. RESULTS: Most 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). 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. 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.
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Caregivers experienced significant decreases in distress and anxiety from pre- to post-intervention (p < .01).
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Structured transition support can improve preparedness and support healthy adjustment as pediatric and AYA patients move from active treatment to survivorship care.
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Survivors’ distress and anxiety remained low and unchanged, while perceived preparedness for survivorship increased significantly among survivors and caregivers (p = .02 and p < .01, respectively).
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The program was acceptable and considered helpful by 57.1% of AYA survivors and 76.5% of caregivers.
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The two-visit Bridge to Next Steps transition program was feasible, with 77.8% of participants completing both visits.

Bridge to Next Steps transition program for pediatric, adolescent, and young adult cancer survivors and their caregivers moving from active treatment to survivorship care

The program’s feasibility, acceptability, and preliminary effects on survivors’ and caregivers’ preparedness, distress, and anxiety during the transition to survivorship care

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2023-03-07
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Kristin Bingen
Jeffrey Karst
Lynnette Anderson
Sherilynn F. Chan
Anna Jordan
Jocelyn Morin
Julie Nichols
Akasha Palou‐Torres
Rachel Phelan
Debra Schmidt
Ke Yan
Jennifer A. Hoag
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