Psychosocial needs of pediatric cancer patients and their caregivers at end of treatment: Why psychosocial screening remains important

Abstract

AbstractObjectiveThe pediatric cancer Psychosocial Standards of Care calls for psychosocial screening across the cancer trajectory. The current study aims to describe pediatric cancer family needs at the end of treatment (EOT) and summarize feedback on a clinical EOT screening and education program.MethodsDuring a clinic visit, families attended an education session regarding general EOT considerations and caregivers and youth aged 11+ years completed questionnaires. Scores were coded for clinical significance based on cutoff scores per questionnaire, and clinical significance frequencies were calculated. Caregivers provided qualitative feedback on the EOT program via an open‐ended prompt.ResultsScreening was completed by 151 families. Ninety‐four patients (67.1%) endorsed risk by self‐ or proxy‐report in at least one domain. Across all patient age groups, a symptom of neurocognitive functioning was the most frequently endorsed risk, including executive functioning, sustained focused, and thinking slower than others. For caregivers, 106 (74.1%) endorsed risk in at least one domain, with concerns for ability to manage their child's medical condition as the most frequent endorsement. Families were agreeable to an EOT program with many caregivers advocating for receiving this program earlier.ConclusionsBoth patients and caregivers experienced clinically significant needs that require intervention at EOT. While patients are experiencing neurocognitive effects and distress, their caregivers are balancing management of their own distress with management of their child's needs during a transition to decreased support from the medical team. The findings affirm the need for systematic screening at EOT and anticipatory guidance for off treatment expectations.