ArticleHeart (British Cardiac Society)2018
Developing a shared decision support framework for aortic root surgery in Marfan syndrome.
Article in Heart (British Cardiac Society), 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 4 of them syntheses that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
10 citing papers in PubMed, 4 syntheses or guidelines pooled it, 24 citations in OpenAlex.
- 2022 ACC/AHA guideline for the diagnosis and management of aortic disease: A report of the American Heart Association/American College of Cardiology Joint Committee on Clinical Practice Guidelines.The Journal of thoracic and cardiovascular surgery · 2023Guideline
- 2022 ACC/AHA Guideline for the Diagnosis and Management of Aortic Disease: A Report of the American Heart Association/American College of Cardiology Joint Committee on Clinical Practice Guidelines.Journal of the American College of Cardiology · 2022Guideline
- Guideline
- Ross Procedure vs Mechanical Aortic Valve Replacement in Adults: A Systematic Review and Meta-analysis.JAMA cardiology · 2018Pooled it
- Marfan Syndrome: Enhanced Diagnostic Tools and Follow-up Management Strategies.Diagnostics (Basel, Switzerland) · 2023Review
- Discussing psychological and psychotherapeutic support for patients with Marfan syndrome (MFS) and their family: an example of a structured program in Italy.Frontiers in psychology · 2023Article
- At the Crossroads of Minimally Invasive Mitral Valve Surgery-Benching Single Hospital Experience to a National Registry: A Plea for Risk Management Technology.Journal of cardiovascular development and disease · 2022Article
- Efficacy of cardiovascular surgery for Marfan syndrome patients: a single-center 15-year follow-up study.Journal of thoracic disease · 2020Article
- Personalised external aortic root support (PEARS) to stabilise an aortic root aneurysm.The British journal of cardiology · 2020Article
- A Review of Psychosocial Factors of Marfan Syndrome: Adolescents, Adults, Families, and Providers.Journal of pediatric genetics · 2019Review
Corrections and comments
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Authors and funding
6 authors at 5 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.