the 52 bulletin
Improving decision-making and sharing of information in aortic disease for patients and clinicians: the DECIDE-TAD initiative Riccardo Abbasciano, Clinical Research Fellow, University of Leicester Gareth Owens, Chair, Aortic Dissection Awareness UK & Ireland Four years of intense work to tackle inequalities and improve outcomes in managing families with aortic disease start to bear their first fruits.
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anagement of thoracic aortic diseases requires a complex, multidisciplinary effort; providing different therapeutic and diagnostic options to patients relies on clinicians’ effective communication strategies, their ability to share information, and carefully explain the balance between risks and benefits of the possible choices. A Delphi process, conducted in partnership with Aortic Dissection Awareness UK & Ireland (ADA UK&I), the national organisation for people with thoracic aortic diseases and their carers/ families, identified screening, shared decision-making, and addressing regional variations in care as the research areas to prioritise. In a feasibility study conducted in Glenfield Hospital in Leicester, two main aspects of the current pathway were highlighted. The diagnosis rate in 1st and 2nd degree relatives of someone who has had an aortic dissection is significant and may be high enough to warrant screening in patients and families that are currently not considered in the testing criteria. Equally important,
optimal management for their condition. As part of a four-year (to date) collaboration between a multi-centre research group coordinated by Prof Murphy at University of Leicester and Aortic Dissection Awareness UK & Ireland, we identified the above as a major area of concern for patients and a gap in the knowledge that deserves further research initiatives, and we aim to address this clinical problem through the creation and testing of a Decision Support Tool (DST) for thoracic aortic diseases. DSTs are invaluable instruments in areas where Gareth Owens and Haleema shared-decision making is Saadia, Chair and Vice-Chair of AD Awareness UK & Ireland crucial. They can clarify the ratio of risks/benefits, provide the necessary information to make a confident choice, and enhance the inclusiveness and equality of the service in which they are employed. Ultimately, they improve outcomes by allowing a consistent, accessible set of recommendations and decision-making processes. It is easy to see why the benefits of a good DST would fit perfectly into the clinical context of thoracic aortic disease management. Adherence to therapy and follow-up (often for extended periods of time), a fruitful communication between clinicians and patients, the involvement and update of multiple professional figures
it highlighted how current services offered by the available clinical pathway may be inaccessible for an important section of the public, or may not be adequately promoted. Multiple scientific reports and direct experience from patients have shown how implementation of the current recommendation translates into a wide variety of approaches. This results in a service offer that is not equal across the country and may under-serve certain patient groups, creating confusion and ultimately preventing access to
