Ethical Factors Impacting Patients' Decisions to Pursue VCA

The overall long-term objective of the proposed study is to optimize the informed consent process for upper limb amputees. The proposed study will use qualitative research methods to address the RTRP FY18 focus area of Identifying near- and long-term functional, quality-of-life, and psychosocial outcomes in VCA, and their influencing factors. The proposed study aims to: Aim 1. Qualitatively assess the decision making and informed consent processes for hand transplantation. Aim 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. Aim 3. Formatively evaluate the educational materials through usability testing on amputees’ and candidates’ understanding, satisfaction, and usability. By developing educational materials (e.g., a neutral, Americans with Disabilities Act-compliant website, video testimonials, and question prompt sheet) in the three-year award period, the proposed study will foster amputees’ greater understanding of treatment options, facilitate amputees’ communication with their healthcare providers, facilitate informed decision-making that better accords with their values and life goals, and thereby promote patient-centered care. By these tokens, the proposed study is timely because the Department of Defense and Veterans Affairs have prioritized rehabilitation care to service personnel to restore functionality, dignity, and quality of life, and, if so desired, remain on active-duty service. The study will make important data-driven contributions to hand transplantation research and advance ethical patient-centered care.