TY - JOUR
T1 - Information needs and development of a question prompt sheet for upper extremity vascularized composite allotransplantation
T2 - A mixed methods study
AU - Gacki-Smith, Jessica
AU - Kuramitsu, Brianna R.
AU - Downey, Max
AU - Vanterpool, Karen B.
AU - Nordstrom, Michelle J.
AU - Luken, Michelle
AU - Riggleman, Tiffany
AU - Altema, Withney
AU - Fichter, Shannon
AU - Cooney, Carisa M.
AU - Dumanian, Greg A.
AU - Jensen, Sally E.
AU - Brandacher, Gerald
AU - Tintle, Scott
AU - Levan, Macey
AU - Gordon, Elisa J.
N1 - Funding Information:
This study was supported by award #W81XWH-19-2-0033/RT180041 from the Department of Defense to EJG, Initiating Principal Investigator (PI); #W81XWH-19-2-0034/RT180041P1 to ML, Partnering PI; #W81XWH-19-2-0035/RT180041P2 to GB, Partnering PI; and #W81XWH-19-2-0036/RT180041P3 to ST, Partnering PI.
Funding Information:
We would like to thank all study participants, as well as Peter Walsh, Hannah Nemeth, and Whitney Langlee for providing assistance with study procedures. We also thank the Scientific Advisory Board members for their helpful insights: Ana Iltis, Edmund Howe, and James DuBois. This study used Research Electronic Data Capture (REDCap), a secure online data capture application supported at the Feinberg School of Medicine by the Northwestern University Clinical and Translational Science Institute. Research reported in this publication was institutionally administratively supported in part by the NIH’s National Center for Advancing Translational Sciences. This work was also institutionally administratively supported in part by the Northwestern Medicine Enterprise Data Warehouse.
Publisher Copyright:
Copyright © 2022 Gacki-Smith, Kuramitsu, Downey, Vanterpool, Nordstrom, Luken, Riggleman, Altema, Fichter, Cooney, Dumanian, Jensen, Brandacher, Tintle, Levan and Gordon.
PY - 2022/9/5
Y1 - 2022/9/5
N2 - Background: People with upper extremity (UE) amputations report receiving insufficient information about treatment options. Furthermore, patients commonly report not knowing what questions to ask providers. A question prompt sheet (QPS), or list of questions, can support patient-centered care by empowering patients to ask questions important to them, promoting patient-provider communication, and increasing patient knowledge. This study assessed information needs among people with UE amputations about UE vascularized composite allotransplantation (VCA) and developed a UE VCA-QPS. Methods: This multi-site, cross-sectional, mixed-methods study involved in-depth and semi-structured interviews with people with UE amputations to assess information needs and develop a UE VCA-QPS. Qualitative data were analyzed by thematic analysis; quantitative data were analyzed by descriptive statistics. The initial UE VCA-QPS included 130 items across 18 topics. Results: Eighty-nine people with UE amputations participated. Most were male (73%), had a mean age of 46 years, and had a unilateral (84%) and below-elbow amputation (56%). Participants desired information about UE VCA eligibility, evaluation process, surgery, risks, rehabilitation, and functional outcomes. After refinement, the final UE VCA-QPS included 35 items, across 9 topics. All items were written at a ≤ 6th grade reading level. Most semi-structured interview participants (86%) reported being ‘completely’ or ‘very’ likely to use a UE VCA-QPS. Conclusion: People with UE amputations have extensive information needs about UE VCA. The UE VCA-QPS aims to address patients’ information needs and foster patient-centered care. Future research should assess whether the UE VCA-QPS facilitates patient-provider discussion and informed decision-making for UE VCA.
AB - Background: People with upper extremity (UE) amputations report receiving insufficient information about treatment options. Furthermore, patients commonly report not knowing what questions to ask providers. A question prompt sheet (QPS), or list of questions, can support patient-centered care by empowering patients to ask questions important to them, promoting patient-provider communication, and increasing patient knowledge. This study assessed information needs among people with UE amputations about UE vascularized composite allotransplantation (VCA) and developed a UE VCA-QPS. Methods: This multi-site, cross-sectional, mixed-methods study involved in-depth and semi-structured interviews with people with UE amputations to assess information needs and develop a UE VCA-QPS. Qualitative data were analyzed by thematic analysis; quantitative data were analyzed by descriptive statistics. The initial UE VCA-QPS included 130 items across 18 topics. Results: Eighty-nine people with UE amputations participated. Most were male (73%), had a mean age of 46 years, and had a unilateral (84%) and below-elbow amputation (56%). Participants desired information about UE VCA eligibility, evaluation process, surgery, risks, rehabilitation, and functional outcomes. After refinement, the final UE VCA-QPS included 35 items, across 9 topics. All items were written at a ≤ 6th grade reading level. Most semi-structured interview participants (86%) reported being ‘completely’ or ‘very’ likely to use a UE VCA-QPS. Conclusion: People with UE amputations have extensive information needs about UE VCA. The UE VCA-QPS aims to address patients’ information needs and foster patient-centered care. Future research should assess whether the UE VCA-QPS facilitates patient-provider discussion and informed decision-making for UE VCA.
KW - VCA
KW - ethics
KW - informed consent
KW - patient-centered care
KW - patient–clinician communication
KW - treatment decision making
KW - upper limb amputation
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UR - http://www.scopus.com/inward/citedby.url?scp=85138306156&partnerID=8YFLogxK
U2 - 10.3389/fpsyg.2022.960373
DO - 10.3389/fpsyg.2022.960373
M3 - Article
C2 - 36132190
AN - SCOPUS:85138306156
SN - 1664-1078
VL - 13
JO - Frontiers in Psychology
JF - Frontiers in Psychology
M1 - 960373
ER -