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Background  International guidelines recommend hereditary thoracic aortic diseases (HTADs) to be managed in multidisciplinary aorta clinics.    Aim  To study HTAD patient's experiences with a aortopathy clinic in Norway and to review the literature on aortopathy clinics.    Methods  (a) A systematic scoping review of research on multidisciplinary clinics for HTADs. (b) A cross‐sectional postal questionnaire study to investigate patient experiences with the health‐services. Fifty consecutive patients from the aortopathy clinic and 50 controls in usual care were invited to participate.    Results  The review identified eight publications on aortopathy clinics. Although the papers were not judged for quality, these showed promising results from such clinics in terms of diagnostics and increased adherence to guideline‐directed therapy. The survey constituted thirty‐seven (74%) patients and 22 (44%) controls who responded to postal questionnaires. Both groups reported delays in diagnostics and follow‐up appointments prior to the start of the clinic. Patients indicated high satisfaction with the aortopathy clinic, whereas controls reported poor coordination of medical follow‐up. Individuals in both groups struggled with disease self‐management.    Conclusion  Norwegian patient experiences found the aortopathy clinic beneficial. According to studies included in the review, disease management in aortopathy clinics may improve patient satisfaction, diagnostics and follow‐up. Effect studies may further document the benefits of clinic organization, treatment, cost‐efficiency and patient experiences.

american journal of medical genetics part a

Multidisciplinary aortopathy clinics: A systematic scoping review of the literature and evaluation of patient experiences from a newly started clinic in Norway