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. 2018 Mar;104(6):480-486.
doi: 10.1136/heartjnl-2017-311598. Epub 2017 Aug 5.

Developing a shared decision support framework for aortic root surgery in Marfan syndrome

Tom Treasure  1 , Annette King  2 , Loreto Hidalgo Lemp  3 , Tal Golesworthy  4 , John Pepper  5 , Johanna Jm Takkenberg  6
Affiliations

Developing a shared decision support framework for aortic root surgery in Marfan syndrome

Tom Treasure et al. Heart. 2018 Mar.

Abstract

Objective: The study is an early phase of development of a decision support framework for people with Marfan syndrome who are anticipating prophylactic aortic root surgery. Implications of the timing and the nature of the operation chosen were previously elicited in focus groups. In this step, we explored the range of relative values placed by individuals on the implications of decisions made about surgery.

Methods: Following the principles of the Ottawa Decision Support Framework, eight questions in the general form 'How important is it to you …' were framed by a panel. Marfan people, families and specialist doctors answered online. Quantitative and qualitative analyses were performed.

Results: Worldwide, 142 responses were received including 25 specialist doctors. Respondents were 55% female and 46% had previous aortic root surgery. Overall, active lifestyle was more important to males (p=0.03). Patients placed more importance than doctors on not deferring surgery (p=0.04) and on avoidance of anticoagulation in the interests of childbearing (p=0.009). Qualitative analysis showed differing but cogently reasoned values that were sometimes polarised, and mainly driven by the wish to maintain a good quality of life and active lifestyle.

Conclusions: Given the cogency of these viewpoints, people anticipating root replacement surgery should have ample opportunity to express them and to have them acknowledged ahead of a consultation when they can then be fully explored in a mutually informed forum. If they differ from local medical practice, they can then be discussed in the process of reaching shared and individualised decisions.

Keywords: aortic and arterial disease; aortic surgery; marfan and associated disorders.

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Conflict of interest statement

Competing interests: TG is a shareholder and director of Exstent Ltd, which holds the Intellectual Property in the Personalised External Aortic Root Support project. No other authors have a financial interest or have received any research funding or expenses.

Figures

Figure 1
Figure 1
Males (n=58, blue) versus females (n=61, red) of 119 people with Marfan syndrome (including two doctors).
Figure 2
Figure 2
People affected by Marfan syndrome (n=117, blue) compared with doctors (n=25, red) including the two who also had Marfan syndrome).
See this image and copyright information in PMC

Comment in

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