Collaborators not cases: Engaging patients with aortic dissections as partners in patient-centered outcomes research

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To date, research in aortic dissection has focused on management and outcomes focused on technical results, and survival. Little is known about what is important to patients living with or at risk for aortic dissection. The Aortic Dissection Collaborative was founded to bring patients’ voices into the conversation, to develop research priorities informed by all members of the aortic dissection community and advance patient-centered research in this area.

With initial funding from the Patient-Centered Outcomes Research Institute (PCORI), the Aortic Dissection Collaborative was founded in 2019 by Sherene Shalhub, MD, associate professor of vascular surgery at the University of Washington in Seattle. Led by an advisory group of patients and family members who have experienced aortic dissection, along with a stakeholder group of nearly 100 patients, advocacy organizations, family members, clinicians, and researchers, the Aortic Dissection Collaborative has been conducting foundational work to bring together a cohesive aortic dissection community and better understand patient experiences and needs in aortic dissection.

This work is presented in the March 2022 edition of Seminars in Vascular Surgery. This fully open access edition contains 11 articles reporting on the detailed methods used to engage the aortic dissection community; the results of landscape reviews of the seven key topics identified as important to the community (education, genetics, medication, mental health, pregnancy, surgery and telemedicine); important findings from in-depth interviews conducted with individuals with or at risk for aortic dissection; and results of a survey assessing the impacts of COVID-19 on this community.

“This is a landmark in aortic dissection research, and it would not be possible without our nearly 100 stakeholder partners,” says Shalhub. “Not only did our partners contribute to the work itself, but several organizations who are part of the Collaborative provided funds to help us make this an entirely open access issue.”

Sherene Shalhub and Caitlin Hicks

Most of the major national and international advocacy and research organizations focusing on aortic dissection are partners in the Aortic Dissection Collaborative, including Aortic Dissection Awareness UK & Ireland, the Ehlers-Danlos Society, the Genetic Aortic Disorders Association (GADA) Canada, the International Registry of Acute Aortic Dissections (IRAD), the John Ritter Foundation for Aortic Health, the Loeys-Dietz Syndrome Foundation, the Montalcino Aortic Consortium, the National Registry of Genetically Triggered Thoracic Aortic Aneurysms and the Cardiovascular Conditions (GenTAC), The Marfan Foundation, The VEDS Movement, Think Aorta, Vascular Cures, the Vascular Low Frequency Disease Consortium, the Vascular Surgery COVID-19 Collaborative (VASCC), and the VEDS Collaborative.

“This special issue of Seminars in Vascular Surgery not only shares findings relevant and important to the aortic dissection community that we can use as a roadmap in the years ahead to guide research in aortic dissection, but it also provides a model that others can use as a template for involving patients and other stakeholders in research in other disease processes,” says Shalhub.

Seminars in Vascular Surgery is an invitation-only journal that examines the latest thinking on a particular clinical problem in vascular surgery. “The work that Dr. Shalhub and the Aortic Dissection Collaborative is doing to better understand aortic dissection from multiple stakeholder perspectives is absolutely cutting-edge, and well-aligned with the mission of Seminars in Vascular Surgery,” says Caitlin W. Hicks, MD, editor-in-chief of the journal. “I was thrilled to work with Dr. Shalhub to publish this important work in an international forum that is accessible to readers from all backgrounds.”

Following the work reported in Seminars in Vascular Surgery, the Aortic Dissection Collaborative translated identified research topics into patient-centered outcomes and comparative effectiveness research questions and surveyed the aortic dissection community for their priorities in research as well as their willingness to participate in future research. Results of this survey will be available later this year. The Aortic Dissection Collaborative Seminars in Vascular Surgery edition can be found online here.

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