TY - JOUR
T1 - The Aortic Dissection Collaborative
T2 - Methods for building capacity for patient-centered outcomes research in the aortic dissection community
AU - Aortic Dissection Collaborative
AU - Lee, Jenney R.
AU - Lawrence, Sarah O.
AU - Soto, Michael
AU - Case, Melanie
AU - Cotter, Novelett
AU - Howitt, Jake
AU - Soderlund, Timo
AU - Trotter, Debra
AU - Byers, Peter H.
AU - Shalhub, Sherene
AU - Cotter, Novelett E.
AU - David, Carmen C.
AU - Fasano, Mark
AU - Goldenberg, Richard
AU - Howitt, Jake
AU - Söderlund, Timo T.
AU - Trotter, Debra
AU - Rabin, Asaf
AU - Boehler-Tatman, Mattie
AU - Russo, Melissa L.
AU - Drudi, Laura Marie
AU - Marks, Laura L.
AU - Yousif, Maisoon D.
AU - Hoffstaetter, Tabea
AU - Taubenfeld, Ella
AU - Vemulapalli, Sreekanth
AU - Campos, Chrisanne S.
AU - Rusche, Lindsey
AU - Pena, Robert C.F.
AU - Mussa, Firas F.
AU - MacCarrick, Gretchen
AU - Goldsborough, Earl
AU - Samuel, Christeen
AU - Xu, Lillian
AU - Mouawad, Nicolas J.
AU - Yassa, Eanas S.
AU - Teng, Xiaoyi
AU - Politano, Amani
AU - Teindl, Jesse
AU - Bloom, Lara
AU - Gluck, Rebecca
AU - O'Neal, Meredith Ford
AU - Grima, Josephine
AU - Masciale, Eileen
AU - Ota, Takeyoshi
AU - Wright, Katelyn
AU - Hakim, Alan J.
AU - Owens, Gareth
AU - Arnaoutakis, George J.
AU - Judelson, Dejah
N1 - Publisher Copyright:
© 2022 The Authors
PY - 2022/3
Y1 - 2022/3
N2 - 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.
AB - 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.
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U2 - 10.1053/j.semvascsurg.2022.02.004
DO - 10.1053/j.semvascsurg.2022.02.004
M3 - Article
C2 - 35501047
AN - SCOPUS:85126373887
SN - 0895-7967
VL - 35
SP - 9
EP - 15
JO - Seminars in Vascular Surgery
JF - Seminars in Vascular Surgery
IS - 1
ER -