[The analysis of psychological and social problems, the physical development in young people with congenital adrenal hyperplasia - owner experience].

INTRODUCTION: Congenital adrenal hyperplasia (CAH) is an inherited metabolic disorder affecting physical and psychosexual development connected with endocrine disturbances. THIS STUDY AIMED: to assess the physical development of children treated for CAH and to analyze their psychological and social problems in their parents' opinion.

MATERIAL AND METHODS: The subjects were 20 children with CAH (aged 4.5-19 years, 7 girls and 13 boys) and their parents. The research was based on a retrospective analysis of subjects' development and a questionnaire for parents asking about their emotional reactions to diagnosis, concerns and expectations, knowledge about CAH as well as gender assignment of their children.

RESULTS: The parents asked about their emotional reaction to diagnosis of CAH reported anxiety (60%) and helplessness (40%). About 40% of the parents were worried about further sexual life of their children. Most of the parents were satisfied with the way they were informed about CAH, nevertheless about 15% didn't fully understand the matter of this disorder. Over 60% of the parents searched for additional information about CAH. CAH-affected children aged <12 years were higher than healthy children, but they didn't exceed 50th percentile of height after 12th year of life. During the developmental period, the difference between the height of healthy children and those with CAH increased, children with CAH were smaller. Their BMI was between the 90th and 97th percentile both in girls and boys. Questioned parents noticed that CAH-affected girls preferred boy's toys, sports and plays. Occupational plans of girls with CAH correlated more with a group of healthy and CAH-affected boys than with healthy girls. The parents emphasized the importance of support groups for children with CAH and complained of lack of satisfying psychological support.

CONCLUSIONS: Physical development of children with CAH is characterized by specific problems. Quick confirmation of final diagnosis and complex genetic counseling allow to introduce proper pharmacological treatment and social and psychological support, The essential issue is to improve parents' education about CAH and provide support groups for families of CAH-affected children.