Identifying Health-Related Quality of Life Domains After Upper Extremity Transplantation

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Author(s)Tulsky, David S.
Author(s)Kisala, Pamela A.
Author(s)Tyner, Callie E.
Author(s)Slotkin, Jerry
Author(s)Kaufman, Christina
Author(s)Dearth, Christopher L.
Author(s)Horan, Annamarie D.
Author(s)Talbot, Simon G.
Author(s)Shores, Jaimie T.
Author(s)Azari, Kodi
Author(s)Cetrulo, Curtis Jr.
Author(s)Brandacher, Gerald
Author(s)Cooney, Carisa M.
Author(s)Victorson, David
Author(s)Dooley, Mary
Author(s)Levin, L. Scott
Author(s)Tintle, Scott M.
Date Accessioned2023-06-28T14:21:22Z
Date Available2023-06-28T14:21:22Z
Publication Date2023-06-01
DescriptionThis article was originally published in Archives of Physical Medicine and Rehabilitation. © 2023 by the American Congress of Rehabilitation Medicine. Published by Elsevier Inc. The version of record is available at: https://doi.org/10.1016/j.apmr.2023.01.001.
AbstractObjective To identify the most important health-related quality of life (HRQOL) domains and patient-reported outcomes after upper extremity transplantation (UET) in individuals with upper extremity amputation. Design Verbatim audio-recordings of individual interviews and focus groups were analyzed using qualitative, grounded theory-based methods to identify important domains of HRQOL and provide guidance for outcomes measurement after UET. Setting Individual interviews were conducted by phone. Focus groups were conducted at 5 upper extremity vascularized composite allotransplantation (VCA) centers in the US and at an international conference of VCA experts. Participants Individual phone interviews were conducted with 5 individuals with lived experience of UET. Thirteen focus groups were conducted with a total of 59 clinical professionals involved in UET. Interventions Not applicable. Main Outcome Measures Not applicable. Results Twenty-eight key HRQOL domains were identified, including physical functioning and medical complications, positive and negative emotional functioning, and social participation, relations, and independence. We identified key constructs for use in evaluation of the potentially substantial physical, medical, social, and emotional effects of UET. Conclusions This study provides an overview of the most important issues affecting HRQOL after UET, including several topics that are unique to individuals with UET. This information will be used to establish systematic, comprehensive, and longitudinal measurement of post-UET HRQOL outcomes.
CitationTulsky, David S., Pamela A. Kisala, Callie E. Tyner, Jerry Slotkin, Christina Kaufman, Christopher L. Dearth, Annamarie D. Horan, et al. “Identifying Health-Related Quality of Life Domains After Upper Extremity Transplantation.” Archives of Physical Medicine and Rehabilitation 104, no. 6 (June 1, 2023): 878–91. https://doi.org/10.1016/j.apmr.2023.01.001.
ISSN1532-821X
URLhttps://udspace.udel.edu/handle/19716/32955
Languageen_US
PublisherArchives of Physical Medicine and Rehabilitation
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/
Keywordshand transplant
Keywordspatient-reported outcomes
Keywordsquality of life
Keywordsreconstructive
Keywordstransplantation
Keywordsrehabilitation
Keywordsupper extremity
Keywordsupper-limb amputation
Keywordsvascularized
Keywordscomposite allotransplantation
TitleIdentifying Health-Related Quality of Life Domains After Upper Extremity Transplantation
TypeArticle
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