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

David S Tulsky; Pamela A Kisala; Callie E Tyner; Jerry Slotkin; Christina Kaufman; Christopher L Dearth; Annamarie D Horan; Simon G Talbot; Jaimie T Shores; Kodi Azari; Curtis Cetrulo Jr,; Gerald Brandacher; Carisa M Cooney; David Victorson; Mary Dooley; L Scott Levin; Cdr Scott M Tintle

doi:10.1016/j.apmr.2023.01.001

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

Arch Phys Med Rehabil. 2023 Jun;104(6):878-891. doi: 10.1016/j.apmr.2023.01.001. Epub 2023 Jan 11.

Authors

David S Tulsky¹, Pamela A Kisala², Callie E Tyner², Jerry Slotkin², Christina Kaufman³, Christopher L Dearth⁴, Annamarie D Horan⁵, Simon G Talbot⁶, Jaimie T Shores⁷, Kodi Azari⁸, Curtis Cetrulo Jr,⁹, Gerald Brandacher⁷, Carisa M Cooney⁷, David Victorson¹⁰, Mary Dooley⁵, L Scott Levin⁵, Cdr Scott M Tintle¹¹

Affiliations

¹ Center for Health Assessment Research and Translation, University of Delaware, Newark, DE; Departments of Physical Therapy and Psychological & Brain Sciences, University of Delaware, Newark, DE. Electronic address: dtulsky@udel.edu.
² Center for Health Assessment Research and Translation, University of Delaware, Newark, DE.
³ Department of Cardiovascular and Thoracic Surgery, University of Louisville School of Medicine, Louisville, KY.
⁴ Department of Defense Extremity Trauma & Amputation Center of Excellence, Bethesda, MD; Department of Orthopedic Surgery, Walter Reed National Military Medical Center, Bethesda, MD; Department of Surgery, Uniformed Services University of the Health Sciences, Bethesda, MD.
⁵ Department of Orthopaedic Surgery and Department of Surgery (Division of Plastic Surgery), Penn Medicine, Philadelphia, PA.
⁶ Division of Plastic and Reconstructive Surgery, Brigham and Women's Hospital, Boston, MA.
⁷ Department of Plastic and Reconstructive Surgery, Johns Hopkins University School of Medicine, Baltimore, MD.
⁸ Departments of Orthopaedic Surgery and Plastic Surgery, University of California-Los Angeles, Los Angeles, CA.
⁹ Department of Surgery, Division of Plastic and Reconstructive Surgery, Massachusetts General Hospital, Harvard Medical School, Boston, MA.
¹⁰ Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL.
¹¹ Department of Orthopedic Surgery, Walter Reed National Military Medical Center, Bethesda, MD; Department of Surgery, Uniformed Services University of the Health Sciences, Bethesda, MD.

PMID: 36639091
DOI: 10.1016/j.apmr.2023.01.001

Abstract

Objective: 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.

Keywords: Hand transplant; Patient-reported outcomes; Quality of life; Reconstructive transplantation; Rehabilitation; Upper extremity; Upper-limb amputation; Vascularized composite allotransplantation.

Publication types

Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

Amputation, Surgical
Focus Groups
Humans
Quality of Life*
Upper Extremity* / surgery