Caregiver Stress and Coping Ability in Relation to Hyperphagia Among individuals with Prader–Willi Syndrome

Background Although caregiver stress and coping strategies have been studied separately, few studies have examined their interplay with hyperphagia in Prader–Willi syndrome (PWS). We examined the relationships among hyperphagia, caregiver stress, and coping in families affected by PWS. Methods This cross-sectional study (conducted between December 2023 and August 2024) involved 76 primary caregivers of individuals aged ≥ 3 years with genetically confirmed PWS. Eligible caregivers co-habited with the patients, provided regular care, and completed questionnaires. Caregiver stress, coping ability, and hyperphagic behaviors were assessed using Korean versions of the Relative’s Stress Scale (RSS-K), the Ways of Coping Questionnaire (WCQ-K), and the Pediatric-Youth Hyperphagia Assessment for PWS (PYHAP). Patients’ clinical and laboratory data were collected from medical records. Pearson correlation and regression analyses were performed. Results Higher caregiver stress correlated with greater hyperphagia severity (r = 0.564, p < 0.001). Among caregivers in their 30s, higher stress was associated with lower coping ability (r = − 0.466, p = 0.044). Among caregivers in their 40s, greater coping was positively related to hyperphagia severity (r = 0.427, p = 0.009). In univariate analysis, lower income was associated with higher stress. Higher stress in caregivers was also associated with illness duration > 10 years since diagnosis, severe disability, and special education programs. Coping ability was higher with shared caregiving. Hyperphagia increased with patient age, longer disease duration, and receipt of special education. Higher HbA1c (r = 0.47, p < 0.001) and body mass index (BMI) z-score (r = 0.23, p = 0.042) were associated with increased hyperphagia. In multivariate models, lower income independently predicted higher stress, and caregiving support predicted greater coping. Conclusion Caregiver stress was positively associated with hyperphagia severity, and coping ability may influence this relationship. HbA1c, BMI z-score, and growth hormone therapy were significantly associated with both caregiver and patient outcomes. Although causal relationships could not be determined, the findings highlight the reciprocal effects between caregiver well-being and patient behavior. Screening for stress and coping, along with early hyperphagia-focused interventions, may help prevent caregiver stress and improve patient outcomes. Multidisciplinary care with psychological support and behavioral programs is warranted to support families affected by PWS.