Objective: This study was to measure quality of life (QOL) of the primary caregivers for young children with Prader-Willi syndrome (PWS).
Methods: The children with PWS consisted of 32 children. The QOL of the caregiver for each patient was assessed using the Chinese version of the WHOQOL-BREF, and the Infants-Junior Middle School Students' Social-Life Abilities Scale was used to evaluate the social adaption capacity of the children. In addition, the data of children' profile and caregivers' characteristics were collected. Correlation test was used to explore the related factors to caregivers' QOL.
Results: QOL in caregivers of young children with PWS was lower than healthy norms. Risk factors of child's age, children with combined diseases or symptoms, caregivers having concerns about the child and poor social adaption of the child were associated with caregivers' QOL identified by Pearson or Spearman correlation test.
Conclusion: When the treatment plan is made for the patients with PWS, caregivers' supports are taken into consideration, especially for those who care the children with age of less than 6 years old.
19 - 21 Sep 2019
European Society for Paediatric Endocrinology