JOPHON NCPD (2024 Mar/Apr) We Are Done! Now What? Exploring End of Treatment Needs of Childhood Cancer Survivors and Their Parents-JOPHON NCPD (2024 Mar/Apr) We Are Done! Now What?

JOPHON NCPD (2024 Mar/Apr) We Are Done! Now What?

Pdf Summary

This mixed-methods study examined how childhood cancer survivors (CCSs), their parents/caregivers, and pediatric oncology health care professionals (HCPs) experience and deliver “end of treatment” (EOT) care, a transition point with few established guidelines. Participants were recruited from an outpatient pediatric oncology program and completed role-specific End of Treatment Questionnaires within 1–6 months after treatment completion (75 CCSs/parents and 21 HCPs).<br /><br />Most parents (78%) and adolescent/young adult survivors (AYAs; 94%) recalled having an EOT meeting/talk, while few children did (31%), suggesting younger survivors may be less included or may not recognize EOT discussions as formal. Although most families who recalled an EOT meeting reported high satisfaction, fewer felt “very prepared” for posttreatment life (43% of parents, 56% of AYAs, 23% of children). Importantly, satisfaction increased significantly as more EOT topics were addressed; for parents, each additional topic raised the odds of being “very satisfied.” Conversely, satisfaction dropped when key topics—especially late effects and psychosocial supports (finding support, community resources, social relationships, worries/concerns)—were omitted.<br /><br />Families frequently reported unexpected posttreatment worries/problems (about half of parents and AYAs), which qualitative analysis grouped into unmet educational needs (lack of anticipatory guidance and a formal process), unmet psychosocial needs (anxiety, fear of recurrence, loss of clinical monitoring), and unexpected physical issues (lingering/new symptoms).<br /><br />HCPs reported that EOT services were inconsistently delivered and largely physician-led, with limited routine involvement from social work, child life, and rehabilitation. HCPs also perceived families as only moderately satisfied and variably prepared, and called for standardized, multidisciplinary EOT education delivered in digestible portions and reinforced over time, including written materials and follow-up support. Overall, the study concludes that EOT care needs a more comprehensive, standardized, team-based approach with stronger psychosocial and anticipatory guidance to better support families entering survivorship.

Keywords

childhood cancer survivors

end of treatment care

pediatric oncology

survivorship transition

anticipatory guidance

late effects education

psychosocial support

multidisciplinary care

patient and caregiver satisfaction

standardized guidelines