Two new publications by Dr Mary Roberts (Leverhulme Centre for Demographic Science) shed new light on how social inequalities shape the experiences of people living with kidney disease in the United States — from long-term treatment pathways to donor’s willingness to donate.
Kidney failure is a major public health challenge, and for many patients, transplantation offers the best chance of long-term survival and quality of life. Yet access to transplants and living donors remains highly unequal. Understanding how these inequalities emerge and persist is essential for improving outcomes and ensuring fair access to care.
In a first study, Roberts and her co-authors examine how patients move through different forms of kidney treatment over time, including dialysis and transplantation. Using national registry data and innovative sequence analysis methods, the researchers map complete treatment histories over a ten-year period, rather than focusing on single events.
The study reveals substantial and enduring racial and ethnic inequalities in treatment pathways. Younger Asian and Hispanic patients are more likely to survive and receive transplants, while Black and Hispanic patients are more likely to remain on in-centre dialysis and less likely to transition to transplantation. These disparities are especially pronounced at younger ages and reflect differences in access to care, resources, and support throughout the disease course.
A second study focuses on the perspectives of potential living kidney donors — specifically, relatives of people with kidney disease. Drawing on survey data from 600 adults in the United States, Roberts and colleagues analyse what motivates or discourages family members from pursuing evaluation as living donors, and how these attitudes relate to concrete steps toward donation.
The findings show that interpersonal and health-related factors are central. The desire to extend a loved one’s life and maintain close relationships strongly increases willingness to donate, while concerns about personal health, surgery, recovery, and finances reduce it. These motivations and barriers vary across age, gender, and racial and ethnic groups, contributing to unequal access to living donation.
Importantly, the study demonstrates that attitudes translate into action. Relatives who feel confident about their health, their relationship with the patient, and their likelihood of being a match are more likely to take practical steps toward donation. In contrast, those who are discouraged by medical or recovery concerns tend to disengage earlier in the process.
Dr Roberts commented: "For many people with kidney failure, finding a living donor can be life-changing, but donor decision making is deeply shaped by family relationships, social networks, and access to information. While financial barriers matter and often drive policy solutions, increasing living donation rates also requires attention to the relational and interpersonal factors that motivate people to give."
Together, these studies highlight how disparities in kidney health are produced over time and across social contexts. They show that improving outcomes for patients requires both equitable access to treatment and better support for families considering living donation. Policies and interventions that combine financial protections with clear information, psychosocial support, and culturally responsive outreach may be particularly effective in reducing long-standing inequalities.
Using large-scale administrative data and detailed survey evidence, this work demonstrates the value of demographic and social science approaches for understanding complex health challenges. It also contributes to broader efforts at LCDS to study how social structures shape health and life chances.
Read the studies here:
Factors influencing willingness to pursue living kidney donation among relatives of patients with kidney disease in the United States
Kidney Replacement Therapy Sequences: Racial/Ethnic Disparities in End-Stage Kidney Disease Patients’ 10-Year Treatment Histories - ScienceDirect
