Quality of Life, Perceived Stigma, and Challenges Faced by the Parents of Girls with Congenital Adrenal Hyperplasia.

Abstract

Objective: To 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 design: Observational 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.

Methodology: Parents 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.

Results: Out 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.

Conclusion: The parental QoL was affected resulting in limited social interactions with the feeling of being stigmatised. Many reported significant anxiety and/or depression.

Key words: Parental anxiety, Congenital adrenal hyperplasia, Disorders of sex development, Gender assignment, Gender.