Accession Number:

AD1158210

Title:

Ethical Factors Impacting Patients' Decisions to Pursue VCA

Descriptive Note:

[Technical Report, Annual Report]

Corporate Author:

NORTHWESTERN UNIV CHICAGO ILWALTER REED NATIONAL MILITARY MEDICAL CENTER BETHESDA MDJOHNS HOPKINS UNIV BALTIMORE MDHENRY M JACKSON FOUNDATION FOR THE ADVANCEMENT OF MILITARY MEDICINE BETHESDA MD

Report Date:

2021-10-01

Pagination or Media Count:

27

Abstract:

Hand and upper limb transplantation a form of vascularized composite allotransplantation or VCA is a new treatment option that aims to restore motor and mobility functions and sensation of the handarm. Upper extremity UE transplantation raises multiple ethical issues, particularly, about informed consent. The overall long-term objective of the proposed study is to optimize the informed consent process for people with upper limb amputations. The proposed study aims to 1 Qualitatively assess the decision making and informed consent processes for hand transplantation 2 Develop prototype educational materials video, website, question prompt sheet that provide patient-centered information to enhance understanding and reduce undue influence to pursue hand transplantation, and that are sensitive to different levels of dysfunction, residual limbs, health literacy levels, and different racialethnic groups and 3 Formatively evaluate the educational materials through usability testing on people with upper limb amputations and UE VCA candidates understanding, satisfaction, and usability. During the last year, our website has been developed and refined based on feedback from telephone focus groups, with minor design and content changes left to incorporate. A total of n11 videos were conducted with 1 UE VCA recipient, 1 UE VCA candidate, 3 upper limb amputees, 5 clinicians, and 1 prosthetist. Across all sites, we conducted In-Depth Interviews n33, Online Focus Groups n2, Telephone Focus Groups n6, and Semi-Structured Interviews n6. A refined draft of the Question Prompt Sheet has been developed and is currently being reviewed by participants in the Semi-Structured Interviews. Preliminary analysis of the In-depth Interviews reveals a general preference for informing people about the option of upper limb transplantation close to the time of the amputation, and no undue pressure to pursue upper limb transplantation.

Descriptors:

Subject Categories:

  • Medicine and Medical Research
  • Personnel Management and Labor Relations

Distribution Statement:

[A, Approved For Public Release]