Background: Prenatal dexamethasone (DXM) treatment has been proposed to prevent genital virilization in girls with congenital adrenal hyperplasia (CAH), however its safety has been questioned for potential adverse effects on the foetus and the mother.
Objective and hypotheses: To analyse clinical practice and prenatal treatment experience with DXM during pregnancy at risk of having her daughters with severe CAH.
Method: An online survey to all members of SEEP was conducted to analyse the information process to parents, monitoring of prenatal and postnatal treatment and ethical issues raised by this action.
Results: There were 49 responses from all over the country: 64% from reference centres for CAH, or tertiary hospitals. Three participants were treating more than 20 patients. 68% claim to have informed their patients, 93% focused on the efficacy of treatment, 89% on the risk for the affected foetus, 93% on the risk for the healthy foetuses and 78% on the risk for the mother. 52% were worried about treating healthy foetuses, and 21% about future cognitive impairment. 54% have ever been consulted about prenatal treatment of CAH. 34% said that this treatment was done at their hospital. 56% did not prescribe it because: they followed few patients (28%), considered it experimental (20%), referred to other canters (24%), the risks overweight the benefits (16%) or had no experience (12%). 38% conducted a meeting with endocrinologists, and/or gynaecologists to explain treatment; 35% provided verbal and written information to obtain an adequate informed consent. 70% respondents considered that treatment should be experimental.
Conclusion: Index of response was very low; the majority have limited experience about CAH and/or prescription. Most practitioners consider this treatment experimental. It would be necessary that working groups who are investigating, publish their results and the best course to follow is clarified.
01 - 03 Oct 2015
European Society for Paediatric Endocrinology