Cardiovascular Care of Turner Syndrome Women in Germany: Where Do We Stand?-Results from an Online Patient Survey

Background: This study aimed to investigate whether the cardiovascular care of Turner Syndrome (TS) women in Germany is in accordance with the latest clinical practice guidelines established by the 2016 Cincinnati international TS meeting. Methods: An anonymous online questionnaire was created to ask TS subjects about existing cardiovascular conditions and cardiovascular care received. Depending on cardiovascular morbidity and type of medical care received, the fulfillment of the latest clinical practice guidelines for the care of TS women was assessed. Results: 120 TS patients were included in this study. The mean age of TS subjects was 36.79 years. Only 80% of subjects received annual blood pressure measurements within the TS cohort, and only 60% received cardiac imaging according to international clinical practice guidelines. More than 55% of TS women did not feel well informed about TS-specific cardiovascular risk factors by their treating physician. Conclusions: A potential lack of cardiovascular care might be present in TS women in Germany as the results of this online patient survey suggest. The cardiovascular care of TS patients, particularly cardiac imaging and patient education, needs to receive more attention.

Automated summary

This study investigated the cardiovascular care of Turner Syndrome (TS) women in Germany. The results showed that a certain percentage of women did not receive cardiac imaging and annual blood pressure measurements according to the latest clinical practice guidelines. Furthermore, more than half of the women felt poorly informed about TS-specific cardiovascular risk factors.