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

Abstract

ObjectiveThe 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.MethodsFollowing 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.ResultsWorldwide, 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.ConclusionsGiven 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.

A Review of Psychosocial Factors of Marfan Syndrome: Adolescents, Adults, Families, and Providers

“…27 Treasure et al address the concerns of preserving QoL for MFS patients and its role in treatment decisions. 28 Lastly, Benninhoven et al found that rehabilitation programs for individuals with MFS can make a significant impact in their QoL. 25 Children and Adolescents…”

“…Of the literature reviewed and categorized into the adults theme, 23 articles evaluated either QoL directly or factors that impact QoL such as employment in adults. 9,11,12,14,[19][20][21][22][23][24][25]27,28,[30][31][32]40,49,[53][54][55][56][57] Velvin et al and Velvin et al are two reviews that focus on QoL. Having a diagnosis of MFS alone will likely impact QoL.…”

“…27 Treasure et al found that men with MFS are particularly interested in having an active lifestyle. 28 These authors argue that patients may prefer the option of valve sparing aortic surgery and clinicians should take these preference into account as it may influence their satisfaction with life. 28 Further, Rao et al (2016) found that QoL was lower in all domains compared with the U.S. general population.…”

Surgical treatment of Marfan syndrome and related disorders is all about dealing with uncertainties

“…Their ideas and preferences may play an important role in the method and timing of elective aortic root replacement, as addressed by Tom Treasure and colleagues6 (Developing a shared decision support framework for aortic root surgery in Marfan syndrome) in their  Heart  paper. Treasure and colleagues investigated HTAD patient and doctor preferences about the type and timing of aortic root surgery in an international cohort.…”

Communicating with our patients for shared decision making

“…Treasure and colleagues1 present the first steps toward a decision support framework for timing of aortic root surgery in adults with Marfan syndrome. Patients, family members and providers were asked to rank the importance of several factors including timing of surgery (postpone vs get it over with); avoiding anticoagulation (particularly if pregnancy is being considered); avoiding other medications, hospital tests or noise from the prosthetic valve; and having an active lifestyle.…”