Endocrine Abstracts

Background: Women with congenital adrenal hyperplasia (CAH) due to 21-hydroxylase deficiency have a poor Quality of Life (QoL) compared to the general population and are less satisfied with their body appearance. Data indicates that psychosocial determinants such as good professional and general support could be associated with an improved QoL. Since there is only little data available that has been deduced from samples of small size this effect should be further examined.

Methods: Data of 203 women with CAH aged from 15–68 was collected as part of the multicenter dsd-LIFE study performed in 14 specialized centres in 6 European countries. To assess psychosocial determinants, we performed an explorative factor analysis including items of the PRO Questionnaire concerning the participants’ satisfaction with their treatment and support in childhood and adolescence, as well as in adulthood. We then built multiple regression models to examine the influence of these psychosocial determinants on the participants’ body acceptance and QoL, using the Body-image-Scale (BIS) and the WHOQOL-BREF.

Results: The factor analysis revealed two psychosocial factors which were both significant predictors for all four WHO domains of QoL (physical health, psychological health, environment, social relationships). One of these factors contained items describing the participants’ satisfaction with care in the last 12 months and was the most important predictor for the QoL domains psychological health, environment and social relationships. The other factor represented satisfaction with care in childhood and adolescence as well as satisfaction with general support in childhood, adolescence and adulthood. Of these two only this factor was a predictor for body acceptance.

Conclusion: These results show that psychosocial factors such as general and family support, or social interactions with professionals have a significant impact on QoL and body acceptance in adult CAH females. This should be taken into account regarding long-term follow up and multimodal therapy.