ESPE Yearbook of Paediatric Endocrinology

Health Qual Life Outcomes 2020; 18: 258. doi: 10.1186/s12955-020-01515-9

– The authors compared the quality of life (QOL) in 59 patients with CAH raised as females to 57 female patients with diabetes– Patients with CAH included 12 children, 29 adolescents and 18 adults– They found that the health-related QOL of female patients with CAH was similar to the QOL of patients with diabetes

This article adds to the recent interest in the QOL of patients with CAH in low-income settings. In the Yearbook 2020 (13.16, P 160), Musa et al. suggested that patients with CAH had a lower QOL compared to the general population (although the study did not include a control group). In this study, the authors compared QOL in children with two vastly different chronic conditions, CAH and diabetes. Another study by the same authors in the same population (see 13.10 below), reported that the majority of the participants with CAH had undergone female genitoplasty, usually at a young age. Although both patient groups were affected by a chronic condition, there was no healthy control group. Arguably, onset of the disease, management burden, perception by society and family differ vastly between CAH and diabetes raising questions about the meaningfulness of the comparison. Understanding the QOL of female patients with CAH in countries where discussion about sexuality is taboo, where fertility is very important and where treatment access often remains suboptimal for financial reasons is a key step towards changing attitudes. It is suggested that future studies should be designed carefully with an appropriate control group and with the goal of identifying steps that may ultimately improve QOL, should it be shown to be poor.