Ethical and Psychosocial Factors in the Decision-Making and Informed Consent Process for Upper Extremity Vascularized Composite Allotransplantation: A Mixed-Methods Study

被引：1

作者：

Gordon, Elisa J. ^{[1
,2
,11
]}

Gacki-Smith, Jessica ^{[3
]}

Kuramitsu, Brianna R. ^{[3
]}

Downey, Max ^{[4
]}

Vanterpool, Karen B. ^{[4
]}

Nordstrom, Michelle J. ^{[5
]}

Riggleman, Tiffany ^{[5
]}

Cooney, Carisa M. ^{[6
]}

Jensen, Sally ^{[7
]}

Dumanian, Gregory ^{[8
]}

Tintle, Scott ^{[9
]}

Levan, Macey ^{[4
,10
]}

Brandacher, Gerald ^{[6
]}

机构：

[1] Vanderbilt Univ, Med Ctr, Dept Surg, Nashville, TN USA

[2] Vanderbilt Univ, Ctr Biomed Ethics & Soc, Med Ctr, Nashville, TN USA

[3] Northwestern Univ, Ctr Hlth Serv & Outcomes Res, Chicago, IL USA

[4] NYU Langone Hlth, NYU Grossman Sch Med, Dept Surg, New York, NY USA

[5] Uniformed Serv Univ Hlth Sci, Ctr Rehabil Sci Res, Walter Reed Natl Mil Med Ctr, Bethesda, MD USA

[6] Johns Hopkins Univ, Sch Med, Dept Plast & Reconstruct Surg, Baltimore, MD USA

[7] Northwestern Univ, Feinberg Sch Med, Dept Med Social Sci, Dept Surg, Chicago, IL USA

[8] Northwestern Univ, Feinberg Sch Med, Dept Surg, Chicago, IL USA

[9] Uniformed Serv Univ Hlth Sci, Walter Reed Natl Mil Med Ctr, Dept Orthopaed Surg, Bethesda, MD USA

[10] NYU Grossman Sch Med, Dept Populat Hlth, New York, NY USA

[11] Vanderbilt Univ, Ctr Biomed Ethics & Soc, Med Ctr, 1161 21st Ave S,CCC-4309 Med Ctr N, Nashville, TN 37232 USA

来源：

TRANSPLANTATION DIRECT | 2023年 / 9卷 / 08期

关键词：

UPPER-LIMB AMPUTEES; INFORMATION NEEDS; QUALITATIVE RESEARCH; UNITED-STATES; TRANSPLANTATION; INNOVATION;

D O I：

10.1097/TXD.0000000000001515

中图分类号：

R3 [基础医学]; R4 [临床医学];

学科分类号：

1001 ; 1002 ; 100602 ;

摘要：

Background. Although upper extremity (UE) vascularized composite allotransplantation (VCA) aims to improve quality of life, relatively few have been performed worldwide to support evidence-based treatment and informed decision-making. Methods. We qualitatively examined factors contributing to anticipated and actual decision-making about UE VCA and perceptions of the elements of informed consent among people with UE amputations, and UE VCA candidates, participants, and recipients through in-depth interviews. Thematic analysis was used to analyze qualitative data. Results. Fifty individu -als participated; most were male (78%) and had a mean age of 45 y and a unilateral amputation (84%). One-third (35%) were "a lot" or "completely" willing to pursue UE VCA. UE VCA decision-making themes included the utility of UE VCA, psychosocial impact of UE VCA and amputation on individuals' lives, altruism, and anticipated burden of UE VCA on lifestyle. Most respondents who underwent UE VCA evaluation (n = 8/10) perceived having no reasonable treatment alternatives. Generally, respondents (n = 50) recognized the potential for familial, societal, cultural, medical, and self-driven pressures to pursue UE VCA among individuals with amputations. Some (n = 9/50, 18%) reported personally feeling "a little," "somewhat," "a lot," or "completely" pressured to pursue UE VCA. Respondents recommended that individuals be informed about the option of UE VCA near the amputation date. Conclusions. Our study identified psychosocial and other factors affecting decision-making about UE VCA, which should be addressed to enhance informed consent. Study participants' perceptions and preferences about UE VCA suggest re-examination of assumptions guiding the UE VCA clinical evaluation process.

引用

页数：13

共 62 条

[31] Psychosocial and bioethical challenges and developments for the future of vascularized composite allotransplantation: A scoping review and viewpoint of recent developments and clinical experiences in the field of vascularized composite allotransplantation [J].