Cardiovascular Care of German Women with Turner's Syndrome: Where Do We Stand?

Background: Turner's syndrome (TS), a rare X-chromosomal disease, is associated with an increased cardiovascular morbidity and mortality. In 2016, international clinical guidelines for the care of girls and women with TS have been established. The aim of this study was to assess whether these guidelines are implemented in the current cardiovascular care of adult TS women in Germany.

Method: An anonymous online questionnaire was generated to ask German TS women about their cardiovascular care. The questions were based on the clinical practice guidelines of the 2016 Cincinnati International TS Meeting. For patient recruiting, the German TS association, national TS centers, and university hospitals were pleased to inform their members/patients about the ongoing study. Only TS patients over the age of 18 years were authorized to participate in this study.

Results: In total, 50 TS women with a mean age of 35.46 ± 10.90 years were enrolled in this study. A total of 26 TS patients (52.00%) reported to be treated at a national TS center and/or a university hospital and 29 TS patients (58.00%) reported to be regularly seen by a pediatric cardiologist and/or a cardiologist. In 41 TS patients (82.00%), blood pressure measurement was performed within the last 12 months. Twelve TS patients (24.00%) stated that they have not received an echocardiographic and/or cardiac magnetic resonance imaging examination yet. Only 41.67% of TS women (n = 20) felt well informed about TS specific cardiovascular risk factors by their treating physician.

Conclusion: The preliminary results of this online questionnaire reveal that the majority of German TS women are treated according to the clinical practice guidelines of the 2016 Cincinnati International TS Meeting. However, more than 40% of TS women in this study stated not to be regularly seen by a pediatric cardiologist/cardiologist. In addition, more than half of TS women stated that they do not feel well informed about TS-specific cardiovascular risk factors.

Publication History

Article published online:
12 February 2022