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

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 firstand 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.

Evaluating the Feasibility of Screening Relatives of Patients Affected by Nonsyndromic Thoracic Aortic Diseases: The REST Study

“…Uptake may be higher in the acute setting, as recommended by a recent Delphi exercise. 9 Second, in those probands who expressed an interest in the study, the uptake of cascade screening in their FDR and SDR was high, accounting for 54% of participants. This may reflect the desire of people at risk to know more about their likelihoods of developing the disease.…”

“…4 , 5 , 8 As a result, there is uncertainty around the screening of relatives with regard to screening modality, prognosis, and genetic counseling. 6 , 9 Therefore, the present study aimed to investigate the feasibility of a tailored imaging and genetic testing approach in relatives of probands affected by both sporadic and familial NS‐TAD.…”

Current state and future directions of genomic medicine in aortic dissection: A path to prevention and personalized care

“…In addition to health outcomes and provider-centric outcomes, data are needed to characterize patient awareness regarding the genomic contribution to dissection, commitment to action, and adherence to management recommendations after genomic risk assessment and counseling. Research priorities outlined by this Working Group were consistent with themes reported by a patient-centered collaborative in the United Kingdom and Ireland, which included a need for early screening programs, healthcare provider engagement, and multidisciplinary care with psychological support and longitudinal follow-up [ 55 ]. Cost-effectiveness studies were not deemed high priority by patient stakeholders in either collaborative working group but were acknowledged as necessary measures of clinical utility by clinicians.…”

Technology foresight for sustainable road freight transportation: Insights from a global real‐time Delphi study

“…Additionally, earlier critiques on the Delphi method itself include a potential pressure to conformity among the panel (Bolger & Wright, 2011; Woudenberg, 1991). Furthermore, the potential dilemma of an artificial consensus might occur, if a smaller subgroup of Delphi panelists makes disproportionately high numbers of revisions and thereby influences the discussion process and the result more strongly (Abbasciano et al, 2020; Birko et al, 2015). In the case of our research, we could not find any indication for the two validity threats.…”