Delays Despite Priority: Qualitative Interviews of Living Kidney Donors with End Stage Renal Disease

Departments Included in Project: Medicine, Pediatrics, Pritzker School of Medicine,

Project Classification: Timeliness

Does the work incorporate equity?

Living kidney donors who experience kidney failure are a small but exceptionally unique group of individuals because the transplant community may have increased, or at least accelerated, their risk of developing kidney failure by allowing the individual to donate. That explains, in part, why these individuals are given priority status in the first place. The fact that a sizable portion of these donors are experiencing long wait times despite their priority status requires immediate attention from the transplant community to ensure long-term, timely, and equitable care is provided to these individuals who donated. Our findings suggest that putting in place an advocate for living donors who need a transplant, just as living donors have an advocate or advocate team when becoming a donor, may be a sensible next step to reduce unnecessary delays experienced by this population. Additionally, multiple of our study participants experienced discrimination due to psychosocial factors such as lacking social support, past drug use, or being perceived as angry by transplant coordinators or providers. This exemplifies how the existing transplant system, in many ways, is built to serve those with greater resources. Our participants' stories can hopefully help highlight the human impact of strict criteria in the listing process (such as the social support requirement) that can possibly contribute to unequitable allocation of kidneys. Finally, living donors with ESRD are more likely to be male and more likely to be Black, which was represented in our sample. While our participants provide some insight into how these identities impacted their experience, further qualitative exploration of how gender and racial/ethnic background impact the experience of being a former donor with ESRD is essential to addressing delays and disparities.

Does this work address any of the UChicago Medicine quality priorities as listed on the Clinical Excellence Scorecard?

Patient Experience, Mortality Reduction