Psychosocial aspects and physical function in adults with Hereditary Thoracic Aortic Aneurysm and Dissection diagnoses (HTAAD): Loeys-Dietz syndrome (LDS), vascular Ehlers-Danlos syndrome (vEDS), Marfan syndrome (MFS) and other HTAADs.
The purpose of the project is to examine perceived health problems and how this affects quality of life, physical activity, education, work and family life, in adults with HTAADs. More research-based knowledge is important for the patients, their families and professionals.
The study is a combination of systematic reviews and a cross-sectional mixed method study of people with HTAADs in Norway.
The cross sectional mixed-method study: combing focus groups and quantitative questionnaire
In focus group interviews 47 adults participated: 11 with LDS, 11 with vEDS, 14 with MFS and 11 relatives of people with HTAADs.
In the questionnaire part of the study 52 adults participated: 34 with LDS and 18 with vEDS. Adults with MFS were not included in this part of the study, due to that
a similar study previously has been conducted.