• Muniba Mehmood, Jamshed Akhtar, Naima Zamir, and Mohsina Noor Ibrahim.
• Department of Paediatric Surgery, National Institute of Child Health, Karachi, Pakistan.
• J Coll Physicians Surg Pak. 2024 Dec 1; 34 (12): 146814721468-1472.

ObjectiveTo assess the quality of life (QoL), perceived stigma, and extent of anxiety and/or depression among parents of female children with congenital adrenal hyperplasia (CAH).Study DesignObservational cross-sectional study. Place and Duration of the Study: Department of Paediatric Surgery and Endocrinology Clinics of National Institute of Child Health (NICH), Karachi, Pakistan, from June to December 2022.MethodologyParents of the female children diagnosed with CAH were enrolled. A validated parent self-report questionnaire, parent- focused items of the experiences and reactions questionnaire used for assessing disorders of sex development (DSD)-related experienced or anticipated stigma and the patient health questionnaire-4 (PHQ-4) were used to gather the information. The scores were calculated for each item and compared among mothers and fathers. Independent samples student t-test was used to find any significant differences between the mean scores. A value of p <0.05 was considered statistically significant.ResultsOut of the 98 parents, there were 74 (75.5%) mothers and 24 (24.5%) fathers. The score recorded in all three tools showed multiple challenges that had a negative impact on parents. In QoL assessment for experiences and reactions, scores between mothers and fathers were similar. In the PHQ-4 tool, the scores were significantly related to the female gender of the parents as anxiety and depression were more reported in mothers (p = 0.046). In parents of children >7 years of age, the differences in scores were statistically significant for the domains such as talking to others, and stigma.ConclusionThe parental QoL was affected resulting in limited social interactions with the feeling of being stigmatised. Many reported significant anxiety and/or depression.Key WordsParental anxiety, Congenital adrenal hyperplasia, Disorders of sex development, Gender assignment, Gender.

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