Endocrine Abstracts

Introduction: Despite 50 years of treating CAH with steroids, clinical practice still varies considerably. In 2002 a consensus statement provided ‘best practice’ guidelines for the management of the condition. In South Wales CAH is managed by an Endocrine Network. A service evaluation was performed to obtain parents views on their experience.

Methods: Thirty-one patients with CAH were identified. A questionnaire was designed using the consensus statement containing sections on diagnosis, treatment and general service satisfaction.

Results: Ten parents completed the questionnaire (eight female patients). 6/10 found the explanation of CAH at diagnosis good or excellent. In the other four, one had initially been given the wrong gender assignment, two complained of lack of expertise at the initial consultation and one found the whole experience dreadful (like a needle in the head). Only 1/10 had received psychological support at diagnosis. Despite 9/10 finding the explanation of steroid treatment good/excellent, 4/10 reported lack of confidence about emergency IM hydrocortisone usage. Signs of under/over treatment with steroids were poorly understood. Overall all 10 parents rated the service they had received good or excellent with one asking for psychological support.

Conclusion: CAH is a complex disorder and requires considerable expertise. Although most parents were happy with their management a significant proportion were not at diagnosis and highlighted the importance of being cared for by someone who had expertise within the field. CAH should be managed by an MDT with appropriate training. Psychological support for parents of children with CAH is lacking.