Ethical Factors Impacting Patients' Decisions to Pursue VCA
Abstract
Hand and upper limb transplantation (a form of vascularized composite allotransplantation, or VCA) is an innovative treatment option that aims to restore motor and mobility function 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 are sensitive to different levels of dysfunction, residual limbs, health literacy, 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. We accomplished all study aims. We completed all data collection activities including in-depth interviews, semi-structured interviews, focus groups, and usability testing. We developed our website Within Reach and began disseminating it to healthcare professionals and patient support groups and advocacy organizations.
Document Details
- Document Type
- Technical Report
- Publication Date
- Apr 01, 2023
- Accession Number
- AD1205865
Entities
People
- Elisa J Gordon
- Gerald Brandacher
- Macey H. Levan
- Scott M. Tintle
Organizations
- Henry M. Jackson Foundation for the Advancement of Military Medicine
- Johns Hopkins University
- Northwestern University
- Walter Reed National Military Medical Center