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.

Management 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, 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 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 Saadia, Chair and Vice-Chair shared-decision making is 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

“DSTs are invaluable instruments in areas where shared-decision making is 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. ”

with different clinical competencies, and the participation of healthy relatives (of multiple age groups) for potential screening are elements which would make the experience of patients and families affected by aortopathy significantly better.

Our initiative is divided into four main components.

We are forming a group across different specialities and professions with a deep knowledge of the problems related to thoracic aortic diseases and we are putting them in direct contact with patients, relatives and their carers. We will hold focused discussions, organise workshops, disseminate surveys and questionnaires. These initiatives will help us define the scope of the decision support tool and consequently of the whole research programme. They will also be part of the dissemination strategy that will accompany and follow our activity.

Senior statisticians and data scientists are exploring the relation between health inequalities, unwarranted variations in care and clinical outcomes in a longitudinal study conducted through the analysis of routinely collected data. Elements such as socio-economic status, gender and ethnicity will be taken into account, to clarify whether patients are accessing the same services across the country and whether potential differences in the care that they received determined a difference in the clinical evolution of their disease.

We are performing multiple systematic reviews of the evidence regarding various aspects of management of thoracic aortic disease, for which recommendations in current guidelines are not strong or uniform. In particular, we will focus on understanding what the optimal approach is for cascade screening, how drugs and lifestyle intervention might be used for primary and secondary prevention, and what are the characteristics of the ideal surveillance strategy, both in the presence of a diagnosis of aneurysm and in subjects considered at risk of developing aortopathy. We will collate the evidence and provide it to a wide panel of international experts, with methodological support from experts of GUIDE. The final product of this effort will be a set of recommendations for topics that are currently underdeveloped and hence create confusion for clinicians and patients.

Finally, we are working with psychologists and public management experts to document and assess potential barriers (both on an individual and organisational level) to the successful implementation of a DST. Through questionnaires, interviews and Delphi exercises we will aim to anticipate which difficulties might arise when the Decision Support Tool will be adopted in everyday practice. A series of workshops will then explore how the use behavioural science approaches can provide solutions to overcome said barriers.

Since our plan is to design a DST ready to be adopted in a clinical scenario and tested in a trial, whose effectiveness and applicability extends to the whole NHS and not to selected groups, efforts to ensure inclusivity in our works have been put in place from the developing stage, and will be an overarching criteria throughout the conduction of the study.

If you want to join our group in this journey to provide holistic care to patients affected by aortopathy and their families, please do not hesitate to get in touch with the research team coordinator at University of Leicester or via the Aortic Dissection Awareness (UK & Ireland) website www.aorticdissectionawareness.org. We will welcome every potential expression of interest. n

Prof Gavin Murphy, presenting during the Aortic Dissection Awareness UK 2021 in Bristol Design and rationale for the Aortic Dissection Awareness UK & Ireland National Survey