National Service Evaluation of the Quality of Care for Children and Young People with Congenital Adrenal Hyperplasia in the UK: Survey Responses from Patients and Clinicians

Abstract

Plain Language SummaryCongenital adrenal hyperplasia (CAH) is a lifelong condition where the body does not produce enough steroids, and thus patients need to take daily steroid replacement. There are differences of opinion in how CAH is treated, and we aimed to find out about these differences in the UK. We surveyed children and young people living with CAH, their parents or carers, and doctors and nurses who look after them throughout the UK. We received 152 responses from carers, 43 from patients, and 34 from clinicians from a total of 33 different clinics. Overall satisfaction with services was high, although, while 94% of clinicians said they provided formal training to families with CAH, over 80% of both patients and carers said that they had not attended what they considered formal training. Most patients and carers said that they would like to engage with further training. Clinicians said they wanted better access to other support for patients, including psychologists. Treatment of CAH was generally in keeping with international guidelines. New methods of monitoring, such as dripping blood onto a card instead of attending hospital for a formal blood test, are increasing with two-thirds of clinicians reporting this method being used. In conclusion, there is good satisfaction with care provision among patients and carers with CAH in the UK. However, there are opportunities for increasing psychological support and family education about the condition to further improve the lives of those living with this disease.