PSYCHOSEXUAL AND PSYCHOSOCIAL DEVELOPMENT IN ADULT WOMEN WITH CONGENITAL ADRENAL-HYPERPLASIA - RESULTS OF INTERVIEWS WITH PATIENTS AND MOTHERS

Background: In congenital adrenal hyperplasia due to 21-hydroxylase de ficiency high pre-and postnatal androgen levels are present and might influence psychosexual and psychosocial development in affected girls. Methods: In order to study the impact of high androgen levels as well as chronic medication and repeated surgery on female patients life we performed a comprehensive quality-of-life study. We report an the res ults obtained by structured interviews of adult patients (45) and thei r mothers (35) covering difficulties and problems in general, most as aspects of their medical histology, self image, body image and current life with or without a male or female partner. Results: The patients were socially competent with a well developed social network. However, regarding sexual contacts they were shy and reluctant. These resulted in significantly less patients live with a partner or are married. Ex isting partnerships were more stable and satisfactory than in the cont rol population. The incidence of homosexuality was not increased. The number of women having children was significantly reduced. A substanti al number of women suffered from androgen-dependent problems like irrg ular menses and hirsutism. Mothers and patients denied any sex-specifi c eduction, hut the girls had preferred boy-specific toys and competit ive outdoor games. However,school performance was average and comparab le to the controls. Most mothers expressed problems and questions rega rding their daughters intersexuality at birth. Even though they felt t hey had received good medical treatment, mothers as well as patients f elt they would have needed more psychological help. Conclusions: It se ems that adult female patients with congenital adrenal hyperplasia are able to adapt to their impairment and chronic disease. Problems regar ding partnership, sexuality, and fertility remain and have to be addre ssed.