Goal 2: Reduce Human Disease

Bicuspid aortic valve is not a “one size fits all” condition. Variations exist within families and the population generally.

Clinical disease manifestations in individuals and families where bicuspid aortic valve is present may best be described as a spectrum, with considerable variability in presentation. Patients and families would benefit from an individualized approach, which does include familial medical history, but couples that information with current best understanding of BAV, considering both variations and risks.

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Critical Challenge (CC)

Details on the impact of addressing this CQ or CC

This variability of aortic disease expression (aorta and valve), while amenable to trend analysis, does not lend itself well to a “one size fits all” approach to care. Some individuals and families display other characteristics in their body suggestive of additional complexity. Brain aneurysms are also mentioned in the literature in the presence of BAV.

Braverman’s article, “Guidelines for management of bicuspid aortic valve aneurysms: what’s the clinician to do?” highlights the variation in guidelines regarding elective aneurysm surgery in BAV patients, discusses why “one size fits all” is not appropriate, and supports the importance of an individualized approach.

Individuals and families face some degree of distress, most particularly those stricken by the serious injury or death of a loved one, and anguish over their future. Some, told surgery was many years away, or that they were fixed for life, have lived to discover those well intentioned words were far from accurate. Others, diagnosed with BAV, have lost their lives.

Individualized care, rather than general statements meant to reassure a large and varied population, is important in order to live confidently and proactively continue with follow up. An approach to care that does not use “always” and “never” thinking, and that avoids predictions interpreted as fact, will do a great deal to instill confidence and engagement in BAV individuals and families, who make life decisions based on what they are told.

Feasibility and challenges of addressing this CQ or CC

This is an intelligent population that is well suited to grasp the issues and participate in decision making. Patients and families desire to be told accurately what is and is not known, to be assessed individually, and to have greater understanding of the implications for blood relatives. They desire to have an informed voice in their treatment decisions, including the timing of elective surgery based on surgical risk versus the risk of living with the disease

Name of idea submitter and other team members who worked on this idea Arlys Velebir, Bicuspid Aortic Foundation

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Idea No. 620