Introduction: 46, XY DSD leave lifelong implications on parents and patients. Documented scientific literature on children with 46, XY DSD is scares in Sri Lanka. This study assesses the psychosocial wellbeing of parents and the quality of life in children with 46 XY DSD.
Objective: To assess the psychosocial wellbeing of parents and the quality of life in children with 46, XY DSD attending the endocrine clinics at Lady Ridgeway Hospital (LRH). Sri Lanka
Method: A descriptive cross-sectional study was done by interviewer administered questionnaires over one year from August 2017, among a cohort of 51 children with 46, XY DSD. QoL was assessed in a sub-group of 21 children aged 12 to 16 years. Psychosocial health-related QoL of children was assessed by the PaedQL-4.0 tool covering emotional, social and school functioning domains. Psychological morbidity and psycho-social wellbeing were assessed in both parents. For these, General-Health-Questionnaire-30 (GHQ-30) and a judgementally-validated questionnaire were used. Ethics approval was obtained from Sr Lanka College of Paediatricians and and LRH.
Results: The median age of the cohort was 60 (6 to 147) months, majority (n=42, 82.4%) of whom had been reared as boys. 28 (53%) mothers and 23 (45%) fathers had psychological-morbidity when assessed with GHQ-30 with a cut-off score of 6. Patients' age was negatively correlated with GHQ-scores of both parents (P<0.05). The median psycho-social well-being scores were 44.0 (40.0-52.0) and 50.8 (44.0-56.0) for mothers and fathers which were positively correlated (P<0.001). The psycho-social well-being scores were negatively associated with age of the child (P<0.01). The median scores of PaedQL were 75 (60.8-78.3) and 73.3 (58.3-80.8) respectively for parental and child components. Scores of the parental-component of QoL was negatively associated with age of the child (P<0.01), but non-significantly with the education level of parents, family income and EMS score (p>0.05). Among school-aged children (> 5 years), 17 children (65.4%) were not drinking water in school, 15 (57.7%) did not use wash-rooms and 17(65.4%) did not participate in sports due to fear of exposure.
Conclusions: 46, XY DSDs are conditions associated with significant psycho-social morbidity in parents and psychological distress in the affected children in Sri Lanka.
19 - 21 Sep 2019
European Society for Paediatric Endocrinology