Publication Date

3-2023

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Abstract

Introduction Cancer predisposition syndromes (CPS; e.g., Li-Fraumeni syndrome, Von Hippel-Lindau syndrome) require routine, standardized medical monitoring with accompanying unique, complex psychosocial needs (e.g., family medical needs). Despite limited research within pediatric populations, emerging literature has begun to support the benefit of routine psychosocial screening in this population. Very few pediatric CPS clinics with dedicated psychosocial care (i.e., psychology) exist in the U.S. and there is currently no standard of care for psychosocial support of CPS patients. This study aims to better understand the psychosocial needs of pediatric CPS patients and support the need for a standardized psychosocial screening protocol among pediatric CPS clinics. Methods Data collection in the Surveillance for Predispositions to Tumors (SPoT) Clinic was obtained from 2021-2022 via REDCap using standardized psychosocial screening battery for all patients and their parents which included demographic, academic, developmental, general health, quality of life, resilience, and genetic diagnosis reaction measures and suicidality, mood, and anxiety screeners. Results A total of 25 patients between 2 and 19 years old (M=11.80, SD=4.70) completed the standardized screening. Patients were predominately assigned female at birth (N=15, 60%) and non-Hispanic White (N=19, 76%). Most denied academic concerns (N=17, 68%). A subset of patients reported concerns for depression (N=5, 20%, M=5.64, SD=5.45; mild n=3, moderate n=2, severe n=1) or anxiety (N=4, 16%, M=5.50, SD=5.77; mild n=3, moderate n=1, severe n=1). Few patients reported a current or past therapy history (N=7, 28%). Patients reported medium to high levels of hope for their future (N=8, M=4.40, SD=1.23). Conclusions Preliminary, descriptive results suggest that CPS patients have medium to high levels of hope and few concerns for depression and anxiety compared to adult CPS patients. Importantly, this study describes a standardized psychosocial screening protocol model for CPS clinics as a first step toward identifying a standard of care for psychosocial screening.

Disciplines

Oncology | Pediatrics

Notes

Presented at Society of Pediatric Psychology Annual Conference;. Chicago, Illinois; March 2023.

Psychosocial Needs of Pediatric Patients with Cancer Predisposition Syndromes: Standardized Screening Needed

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