Engaging patients and caregivers in establishing research priorities for aortic dissection

OBJECTIVES: The aim of this study was to establish the top 10 research uncertainties in aortic dissection together with the patient organization Aortic Dissection Association Scandinavia using the James Lind Alliance concept. METHODS: A pilot survey aiming to identify uncertainties sent to 12 patients was found to have high content validity (scale content validity index = 0.91). An online version of the survey was thereafter sent to 30 patients in Aortic Dissection Association Scandinavia and 45 caregivers in the field of aortic dissection. Research uncertainties of aortic dissection were gathered, collated and processed. RESULTS: Together with research priorities retrieved from five different current guidelines, 94 uncertainties were expressed. A shortlist of 24 uncertainties remained after processing for the final workshop. After the priority-setting process, using facilitated group format technique, the ranked final top 10 research uncertainties included diagnostic tests for aortic dissection; patient information and care continuity; quality of life; endovascular and medical treatment; surgical complications; rehabilitation; psychological consequences; self-care; and how to improve prognosis. CONCLUSION: These ranked top 10 important research priorities may be used to justify specific research in aortic dissection and to inform healthcare research funding decisions.