Ethical Factors Impacting Patients' Decisions to Pursue VCA
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 hand/arm. 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 racial/ethnic 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 n=11 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 (n=33), Online Focus Groups (n=2), Telephone Focus Groups (n=6), and Semi-Structured Interviews (n=6). 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.
Document Details
- Document Type
- Technical Report
- Publication Date
- Oct 01, 2021
- Accession Number
- AD1158210
Entities
People
- Elisa J Gordon
- Gerald Brandacher
- Macey L Henderson
- Scott Tintle
Organizations
- Henry M. Jackson Foundation for the Advancement of Military Medicine
- Johns Hopkins University
- Northwestern University
- Walter Reed National Military Medical Center