Report of a Delphi exercise to inform the design of a research programme on screening for thoracic aortic disease

Author:

Abbasciano R. G.ORCID,Barwell J.,Sayers R.,Bown M.,Milewicz D.,Cooper G.,Mariscalco G.,Wheeldon N.,Fowler C.,Owens G.,Murphy G. J.,Cooper Graham,Fowler Catherine,Callaway Mark,Chelliah Rajesh,Deshpande Aparna,Khoo Jeffrey,McCann Gerry,Rao Praveen,Bown Matthew,Milewicz Dianna,Dorkins Huw,Field Mark,Fletcher-Francis Catherine,Grover Cliff,Mariscalco Giovanni,Suzuki Toru,Yasbeck Amy,Barwell Julian,English Karen,Robertson Noelle,Cotton Anne,Gunn Sarah,McKay Victoria,Oo Aung,Osio Deborah,Shannon Nora,Sharif Saba,Wheeldon Nigel,Sayers Rob,Owens Gareth,Sweeting Michael,Brookes Cassandra,Kumar Tracy,Lai Florence,Murphy Gavin,

Abstract

Abstract Objectives To inform the design of a clinical trial of a targeted screening programme for relatives of individuals affected by thoracic aortic disease, we performed a consensus exercise as to the acceptability of screening, the optimal sequence and choice of tests, long-term patient management, and choice of trial design. Methods Working with the Aortic Dissection Awareness UK & Ireland patient association, we performed a Delphi exercise with clinical experts, patients, and carers, consisting of three rounds of consultation followed by a final multi-stakeholder face-to-face workshop. Results Thirty-five experts and 84 members of the public took part in the surveys, with 164 patients and clinicians attending the final workshop. There was substantial agreement on the need for a targeted screening pathway that would employ a combined approach (imaging + genetic testing). The target population would include the first- and second-degree adult (> 15 years) relatives, with no upper age limit of affected patients. Disagreement persisted about the screening process, sequence, personnel, the imaging method to adopt, computed tomography (CT) scan vs magnetic resonance imaging (MRI), and the specifics of a potential trial, including willingness to undergo randomisation, and measures of effectiveness and acceptability. Conclusion A Delphi process, initiated by patients, identified areas of uncertainty with respect to behaviour, process, and the design of a targeted screening programme for thoracic aortic disease that requires further research prior to any future trial.

Publisher

Springer Science and Business Media LLC

Subject

Pharmacology (medical),Medicine (miscellaneous)

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