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. 2020 Nov;182(11):2552-2569.
doi: 10.1002/ajmg.a.61827. Epub 2020 Aug 19.

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

Trine Bathen  1 , Kirsten Krohg-Sørensen  2   3 , Ingeborg B Lidal  1
Affiliations

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

Trine Bathen et al. Am J Med Genet A. 2020 Nov.

Abstract

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.

Keywords: Marfan clinic; cardiac genetics clinic; hereditary aortic dilation and dissection; hereditary aortic disease; multidisciplinary aortopathy clinic.

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Conflict of interest statement

The authors declare no potential conflict of interest.

Figures

FIGURE 1
FIGURE 1
Flow‐chart of search strategy for literature on multidisciplinary clinics for persons with heritable thoracic artery diseases [Color figure can be viewed at wileyonlinelibrary.com]
FIGURE 2
FIGURE 2
Flow‐chart of inclusion of patients in the evaluation of patient experiences [Color figure can be viewed at wileyonlinelibrary.com]
FIGURE 3
FIGURE 3
Patient experiences with follow‐up. (a) “Do you have confidence in the specialist's (OUH/ aortopathy clinic) professional competence?” (b) “Do you feel that the medical specialists (OUH/aortopathy clinic) cooperate well in the follow‐up of you and your disease?” (c) “Do you feel that the specialist services (OUH/aortopathy clinic) are well organized?” (d) “Do you feel that the specialists (OUH/aortopathy clinic) gave you adequate counseling to cope with your disease?” [Color figure can be viewed at wileyonlinelibrary.com]
FIGURE 4
FIGURE 4
Mean score (±1 SD) of Effective musculoskeletal consumer scale 17 (EC17) for: Project‐group questionnaire 1 and 2, control group questionnaire 1 and 2, reported values for a Norwegian group of Rheumatoid arthritis patients before and after rehabilitation *Hamnes et al., 2010
See this image and copyright information in PMC

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