Quality of life and alignment between parent- and child-report among children and adolescents with disorders of sex development at King Chulalongkorn Memorial Hospital
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Abstract
Objective: The study aimed to investigate health-related quality of life (HRQoL) and the alignment between parent- and child-report among children and adolescents with disorders of sex development.
Methods: This descriptive cross-sectional study was conducted in the outpatient department of the Division of Endocrinology, Department of Pediatrics, Faculty of Medicine, King Chulalongkorn Memorial Hospital between October 2022, and May 2023. The Thai version Pediatric Quality of Life Inventory™ 4.0 Generic Core Scale (PedsQL™) was applied to assessing HRQoL and was administered to forty-seven children and adolescents with disorders of sex development aged 8 to 18 years and their parents.
Results: Forty-seven participants were recruited in the present study, mean age of 13.18 ± 3.24 years, and 51.1% identified themselves as male. The mean total quality of life score from the PedsQL™ was 87.58 ± 9.92 as reported by children, and 72.06 ± 17.94 as reported by parents. The differences between the child-reported and parent-reported quality of life were significant (mean difference = 15.52, t(47) = 6.292, P <.001). Parents rated their children’s quality of life lower than the children themselves in all subscales.
Conclusion: Children and adolescents with disorders of sex development had a more favorable self-perception of their quality of life than what was assessed by parents. In order to support optimal treatment planning and care, it is crucial for physicians to understand the quality of life experienced by these patients.
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