Objective: To evaluate the follow-up of adult women with Turner's syndrome.
Design: Cross-sectional study using questionnaires.
Method: In August 2005 questionnaires were sent to 5 adult women with Turner's syndrome who were known to the Wilhelmina Children's Hospital in Utrecht, The Netherlands. The questions concerned morbidity, follow-up and levels of satisfaction with care and the provision of information about Turner's syndrome. Case notes were also examined.
Results: 38 questionnaires were returned, 19 from women aged 17-25 and 19 from women aged 26-42. 7 women had been without medical care for some time and 4 women were not receiving any medical care at the time of the study. The remaining women were being monitored by a general practitioner or one or more medical specialists. 6 of the 38 women were under the care of a cardiologist. 5 women had hypertension. 8 women had a renal malformation and, 5 of them were not having any renal follow-up. 8 women had undergone bone mineral density measurements in the preceding 5 years. The women between 17-25 years of age were more satisfied with the transfer of medical care from childhood to adulthood than those between 26-42 years of age. Most women felt they were well informed about Turner's syndrome.
Conclusion: Medical care for adult women with Turner's syndrome in our study group was less than optimal. Cardiovascular risks in particular needed more attention. We advocate a multidisciplinary approach for the follow-up of women with Turner's syndrome.