Living with congenital adrenal hyperplasia in Vietnam: a survey of parents.

OBJECTIVE

Congenital adrenal hyperplasia (CAH) has the potential to place an enormous burden on families in resource-poor countries, and the aim of this survey was to provide more specific insights into the difficulties faced by families living with CAH in Vietnam. It is hoped that this information will be used to ensure that future efforts to reduce the burden of CAH are as effective, sustainable and appropriate as possible.

DESIGN AND METHODS

A questionnaire-based needs assessment survey was offered to parents of children with CAH who were attending the Annual CAH Support Group Meeting held at the National Hospital of Pediatrics (NHP) in Hanoi, Vietnam, on 10th June 2005.

RESULTS

Fifty-three families responded to the questionnaire. Information pertaining to the purchase and use of medication to treat CAH, access to medical care, surgical treatment for girls, and a wide range of parental concerns was collected.

CONCLUSIONS

This survey highlights the heavy burden that CAH places on families in Vietnam, and provides significant insights into various initiatives that could well help ease this suffering. In particular, efforts must be made to ensure essential medication is affordably available, communication of important messages to parents is enhanced, local support groups encouraged, and early diagnosis and medical treatment of CAH optimized so as to reduce morbidity and mortality.