Caregiver-reported stress in prader–Willi syndrome: associations with hyperphagia severity and socioeconomic context

Abstract Background Caregivers of individuals with Prader–Willi syndrome (PWS) often experience substantial stress related to behavioral symptoms and socioeconomic challenges. This study examined factors associated with caregiver stress, with particular attention to whether hyperphagia severity, as a behavioral symptom factor, was independently associated with caregiver stress after accounting for caregiver sociodemographic, patient demographic, disease-related clinical, and socioeconomic contextual factors. Methods A cross-sectional study was conducted with 76 caregivers of individuals with genetically confirmed PWS at a tertiary hospital in Korea. Caregiver stress was measured using the Korean version of the Relative Stress Scale (RSS-K), a 15-item self-reported measure of the caregiver’s own perceived stress. Hyperphagia severity was assessed using the Pediatric–Youth Hyperphagia Assessment for PWS (PYHAP), a caregiver-completed observer-reported measure of the patient’s observable hyperphagia-related behaviors. Hierarchical regression analyses examined caregiver sociodemographic and patient demographic factors, disability severity as a disease-related clinical factor, hyperphagia severity as a behavioral symptom factor, and household income as a socioeconomic contextual factor. Results The mean patient age was 12.9 ± 8.0 years, and 68 patients (89.5%) had severe disability, defined as former disability grades 1–3. Most caregivers were female (90.8%) and mothers (79.0%). The mean PYHAP and RSS-K total scores were 33.84 ± 12.91 and 44.75 ± 15.52, respectively. Hyperphagia severity ( β = 0.63, p < 0.001) and lower household income ( β = − 0.22, p = 0.037) were independently associated with greater caregiver stress. Disability severity was not significant in the fully adjusted model. Conclusions Hyperphagia severity, as a behavioral symptom factor, and lower household income, as a socioeconomic contextual factor, were independently associated with greater caregiver stress in families affected by PWS. These findings suggest that caregiver-reported stress measures may help identify families who could benefit from behavioral guidance and socioeconomic support.