Health-Related Quality of Life of Children with Congenital Adrenal Hyperplasia: A Mixed Methods Study.

ABSTRACT

PURPOSE: The purpose of this study was to examine the health-related quality of life (HRQOL) of female children with CAH as reported by children and their caregivers. DESIGN AND METHODS: A convergent mixed methods design was selected whereby quantitative and qualitative results were merged to provide a comprehensive understanding of HRQOL of children. Semi-structured interviews were conducted with 20 child-caregiver dyads. The full sample of child-caregiver dyads (N = 25) completed KINDL-R questionnaires, which provided a quantitative measure of children's HRQOL. RESULTS: Children and their caregivers reported good overall HRQOL. Children scored significantly lower on the KINDL-R School subscale compared to their caregivers. Associations were observed between the HRQOL score from one graphic rating scale item and the child's other health issues and child's diagnosis. Themes emerging from the child and caregiver interviews were health-related quality of life, impact of stigma on psychological well-being, information-sharing and disclosure of CAH, and improving the quality of life of children with CAH. CONCLUSION: This mixed methods study provided evidence to understand the health and complex needs of children with CAH. IMPLICATIONS Clinicians may better support children and caregivers by expanding the focus beyond medication management to include 1) psychological support and resources (i.e., developmentally appropriate coping and adaptation strategies); 2) continuous education for clinical staff, school nurses, emergency medical transport staff, and providers; and 3) public awareness beyond the clinic and hospital settings.