Quality of life in people with syndromic heritable thoracic aortic disease and their relatives: a qualitative interview based study

Based on our findings, to improve QoL in patients with sHTAD we should more effectively integrate the patient`s perspectives and voice on the elements crucial to QoL. In addition, it is vital for developing and customizing validated questionnaires to accurately reflect the factors deemed significant by this specific patient cohort. The research is limited on patients' perspectives on QoL, and more research is warranted. This might also be crucial for identifying relevant validated QoL instruments that reflect the patients` perceptions of what is vital for QoL.