The Aortic Dissection Collaborative: Methods for building capacity for patient-centered outcomes research in the aortic dissection community

• DOI: 10.1053/j.semvascsurg.2022.02.004
• Publication Date: 2022-02-23T16:19:39Z
• Authors: Jenney R. Lee; Sarah O. Lawrence; Michael Soto; Melanie Case; Novelett Cotter; Jake Howitt; Timo Soderlund; Debra Trotter; Peter H. Byers; Sherene Shalhub; Novelett E. Cotter; Carmen C. David; Mark Fasano; Richard Goldenberg; Jake Howitt; Timo T. Söderlund; Debra Trotter; Asaf Rabin; Mattie Boehler-Ta...; Melissa L. Russo; Laura Marie Drudi; Laura L. Marks; Maisoon D. Yousif; Tabea Hoffstaetter; Ella Taubenfeld; Sreekanth Vemulap...; Chrisanne S. Campos; Lindsey Rusche; Robert C.F. Pena; Firas F. Mussa; Gretchen MacCarrick; Earl Goldsborough; Christeen Samuel; Lillian Xu; Nicolas J. Mouawad; Eanas S. Yassa; Xiaoyi Teng; Amani Politano; Jesse Teindl; Lara Bloom; Rebecca Gluck; Meredith Ford O'Neal; Josephine Grima; Eileen Masciale; Takeyoshi Ota; Katelyn Wright; Alan J. Hakim; Gareth Owens; George J. Arnaout...; Dejah Judelson; Mario D'Oria; Lurdes del Rio-Sola; Mark Ajalat; Marvin Chau; Stephanie D. Talutis; Karen Woo; Max V. Wohlauer; Jeniann A. Yi; Kim A. Eagle; Marion A. Hofmann...; Eva Kline-Rogers; Hyein Kim; Claudine Henoud; Scott Damrauer; Emilia Krol; Rana O. Afifi; Alana C. Cecchi; Madeline Drake; Anthony Estrera; Avery M Hebert; Dianna M. Milewicz; Siddharth K. Prakash; Aaron W. Roberts; Harleen Sandhu; Akili Smith-Washi...; Akiko Tanaka; Jacob Watson; Myra Ahmad; Catherine M. Albr...; Christopher R. Burke; Peter H. Byers; L'Oreal Kennedy; Sarah O. Lawrence; Jenney R. Lee; Jonathan Medina; Thamanna Nishath; Julie Pham; Courtney Segal; Sherene Shalhub; Michael Soto; Linell Catalan; Megan Patterson; Nicole Ilonzo
• Keywords: Patient Outcome Assessment; Aortic Dissection; 03 medical and health sciences; Capacity Building; 0302 clinical medicine; Surveys and Questionnaires; Humans; 3. Good health

Understanding what matters most to patients can help guide research in a direction that is best situated to provide evidence that is responsive to their core concerns. This can better inform the treatment decision-making process for patients and their physicians. The Aortic Dissection (AD) Collaborative built a collaborative AD research infrastructure involving patients and other stakeholders to facilitate patient-centered outcomes research training, support, and networking among those affected by AD. Two surveys and semi-structured interviews were conducted between January and October 2020 to gather information from people with and at risk for AD and their family members to better understand their experiences and needs. Discussion of survey and interview results were then articulated as seven key topics for future research to meet the needs of the AD community. Working groups were assembled to address each of the key topics. The groups conducted landscape reviews that were focused on providing guidance for future research that directly addresses the needs identified by the AD community. Recommendations for future research generated by the working groups were compiled by the Aortic Dissection Collaborative. From these recommendations, the Aortic Dissection Collaborative advisors and stakeholders identified high-priority research questions. The research questions form the basis for a third survey, disseminated to the Virtual Research Network between November 2021 and February 2022. Final analysis of the survey will identify top ranked research questions and assess willingness to participate. These results will inform the development of future patient-centered outcomes research and comparative effectiveness research proposals.