Public Perceptions and Information Needs of VCA Transplantation and Donation: A Mixed Methods Study

Abstract

Vascularized Composite Allotransplantation (VCA) involves transplantation of multiple tissues from a donor to a recipient (e.g., skin, muscle, bone). Little is known about the US public’s perceptions of and attitudes toward VCA organ donation. This multi-site, cross-sectional, mixed methods study involved focus groups and surveys to assess members of the general public’s attitudes about VCA, and willingness and barriers to donate VCA organs. Qualitative data were analyzed by thematic analysis; quantitative data were analyzed by descriptive statistics. In focus groups (n = 6, 42 participants), most participants were female (57%) and Black (62%) with mean age of 42.6 years. Three main themes emerged: 1) awareness and perceptions of VCA, 2) purpose of VCA donation, 3) and barriers to VCA donation. Participants had heard little about VCA and sought information about VCA donation. Participants perceived VCA as challenging their concepts of “normality” and voiced concerns that VCA would create “Frankenstein[s].” Barriers to VCA donation included disruptions to end-of-life arrangements and information gaps regarding the donation process. Participants reported moderate to high willingness to donate their hands (69%) and face (50%) Public education efforts should address the specific needs and concerns of the public to facilitate VCA donation and family authorization.

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

“…31 Patients also reported identity concerns of transforming into "Frankenstein" 52 through VCA, as found elsewhere. 53 Other study participants desired further information before deciding, 17 including about costs and insurance coverage, as documented elsewhere. 30 Consistent with previous research, a key finding was limited knowledge about UE VCA among individuals with UE amputations.…”

“… 31 Patients also reported identity concerns of transforming into “Frankenstein” 52 through VCA, as found elsewhere. 53 …”

The role of the purposeful shared decision making model in vascularized composite allotransplantation

“…There are other related decisions where Purposeful SDM may be helpful. For example, families that are asked if they would consider donating a deceased family member's hand also need support and grapple with issues of effects, positions, situations, and being ( 57 , 58 ) in difficult circumstances. Problematic situations motivating other VCA transplant decisions, e.g., face, uterine, or penile, are also heterogeneous in their issues, as are issues in the much more common solid organ transplant setting.…”

What is needed to ensure long-term sustainability for the field of vascularized composite allotransplantation?

“…Public awareness of VCA is low and perceptions of VCA are more reserved compared to that for solid organs [37][38][39][40]. Even among VCA grafts, more prominently visual parts like face transplants fare worse than do hand transplants.…”