A mixed methods examination of caregiver perspectives on the quality of life and executive functioning of young childhood cancer survivors

PURPOSE: Over two-thirds of childhood cancer survivors experience late effects. While young childhood cancer survivors (YCCS; diagnosed ≤ age 7) face the greatest developmental risk, research centers school-aged survivors. Using mixed methods, we aimed to characterize caregiver perspectives of YCCS' psychosocial and neurocognitive difficulties. METHODS: Stratified sampling was conducted to recruit caregivers of 23 YCCS (currently aged 3-11). Twenty-nine caregivers completed surveys and a semi-structured interview to assess their child's health-related quality of life (HRQOL), executive function (EF), and other challenges. RESULTS: Children were reported to face significant difficulty: 69% below normative HRQOL, 50% impaired EF, and 41% delayed or impacted schooling. Qualitatively, caregivers discussed children's strengths and psychosocial, physical, and developmental concerns. Generally, more challenges were reported in interviews than surveys. CONCLUSION: YCCS experience age-specific challenges that warrant tailored intervention. Current clinical measures may not capture all concerns, indicating that observations and interviews are useful in assessing need.