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Aortic and vascular disease
Original research article
Developing a shared decision support framework for aortic root surgery in Marfan syndrome
  1. Tom Treasure1,
  2. Annette King2,
  3. Loreto Hidalgo Lemp3,
  4. Tal Golesworthy4,
  5. John Pepper5,
  6. Johanna JM Takkenberg6
  1. 1 Operational Research Unit, Department of Mathematics, University College London, London, UK
  2. 2 Centre for Health Services Studies, University of Kent, Canterbury, Kent, UK
  3. 3 Health Psychology, KCL, London, UK
  4. 4 Exstent Ltd, Cheltenham, UK
  5. 5 NIHR Cardiovascular Biomedical Research Unit, Royal Brompton Hospital, London, UK
  6. 6 Department of Cardio-Thoracic Surgery, Erasmus University Medical Center, Rotterdam, The Netherlands
  1. Correspondence to Professor Tom Treasure, Department of Mathematics, University College London, London, WC1H 0BT, UK; tom.treasure{at}gmail.com

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.

  • aortic surgery
  • aortic and arterial disease
  • marfan and associated disorders

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/heartjnl-2017-311598

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    Footnotes

    • Contributors JJMT, JP, TG and TT saw the need for the study and initiated the project. LHL and JJMT independently suggested the Ottawa Decision Support Framework as a basis for the study. All contributors worked to devise the eight questions with major input from other panel members acknowledges. LHL devised the web-based format and handled the data retrieval. JJMT led on quantitative analysis. AK performed the quantitative analysis. TT made the first draft, which was extensively revised by JJMT and AK. All authors read and commented on the manuscript during its development and agreed its final form.

    • 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.

    • Ethics approval IRAS.

    • Provenance and peer review Not commissioned; externally peer reviewed.

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