Faculty Bibliography

This commentary discusses 13 unique stories by patients who have received an organ transplant. Their stories are diverse and capture the essence of the highs and lows on the journey to needing, receiving, and living with an organ transplant. The stories speak to immeasurable gratitude, and all provide insight into how we might support more fair and equitable organ transplant system policies in the US and abroad. This commentary suggests that a narrative policy framework in organ transplantation can have a positive influence as we formulate, adopt, and implement transplant policy.

BACKGROUND:Despite the societal benefits of live kidney donation, Black donors may be more likely than White donors to develop hypertension (HTN) and chronic kidney disease after donation. Among live kidney donors diagnosed with post-donation HTN, little is known about potential racial/ethnic differences in HTN self-care behaviors and perceived susceptibility to developing kidney disease. METHODS:We ascertained electronic medical records and phone survey data from live donors enrolled in the multi-center Wellness and Health Outcomes of LivE Donors (WHOLE-Donor) Hypertension Care Study between May 2013 and April 2020. Using multivariable logistic regression models performed January through June 2021, we examined potential associations of donor race/ethnicity with perceived susceptibility to kidney disease and self-care behaviors (ie, Behavioral Risk Factor Surveillance System measure assessing self-reported actions to control high blood pressure). RESULTS:The study included 318 US-based live kidney donors who developed post-donation HTN (57.6% female; 78.9% White; 18.6% Black; and mean age 46.7 years at donation). Black donors were equally as likely as White donors to report being moderately or strongly concerned about developing kidney disease (adjusted odds ratio, aOR: 1.27, 95%CI: .66, 2.14, P=.57). Donors with diabetes were more likely than those without diabetes (aOR: 2.43, 95%CI: 1.03, 5.01, P=.04), while donors aged >50 years were less likely than younger donors (aOR: .39, 95%CI: .18, .85, P=.02) to report being moderately or strongly concerned about kidney disease. Overall, 87% of donors reported taking at least one action to help control blood pressure, with no significant differences by sociodemographic factors. CONCLUSIONS:We found no substantial differences in perceived susceptibility to kidney disease among Black and White donors, despite published evidence that Black donors may experience greater risk of developing kidney disease than White donors. Behavioral interventions to enhance knowledge about future disease risk, attitudes, and self-care strategies among living kidney donors may be beneficial.

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.

Background/UNASSIGNED:People with upper extremity (UE) amputations report receiving insufficient information about treatment options. Furthermore, patients commonly report not knowing what questions to ask providers. A question prompt sheet (QPS), or list of questions, can support patient-centered care by empowering patients to ask questions important to them, promoting patient-provider communication, and increasing patient knowledge. This study assessed information needs among people with UE amputations about UE vascularized composite allotransplantation (VCA) and developed a UE VCA-QPS. Methods/UNASSIGNED:This multi-site, cross-sectional, mixed-methods study involved in-depth and semi-structured interviews with people with UE amputations to assess information needs and develop a UE VCA-QPS. Qualitative data were analyzed by thematic analysis; quantitative data were analyzed by descriptive statistics. The initial UE VCA-QPS included 130 items across 18 topics. Results/UNASSIGNED:Eighty-nine people with UE amputations participated. Most were male (73%), had a mean age of 46 years, and had a unilateral (84%) and below-elbow amputation (56%). Participants desired information about UE VCA eligibility, evaluation process, surgery, risks, rehabilitation, and functional outcomes. After refinement, the final UE VCA-QPS included 35 items, across 9 topics. All items were written at a ≤ 6th grade reading level. Most semi-structured interview participants (86%) reported being 'completely' or 'very' likely to use a UE VCA-QPS. Conclusion/UNASSIGNED:People with UE amputations have extensive information needs about UE VCA. The UE VCA-QPS aims to address patients' information needs and foster patient-centered care. Future research should assess whether the UE VCA-QPS facilitates patient-provider discussion and informed decision-making for UE VCA.