Underrepresented patients on dialysis report unmet existential and supportive care needs

Dr. Kate Butler's research letter is published in JAMA Internal Medicine.

JAMA Internal Medicine

Individuals who are not white and are receiving dialysis are more likely to report unmet existential and supportive kidney care needs than white patients.

“Minoritized racial groups of people with kidney disease are less likely to receive important types of kidney care compared with white patients and tend to have poorer health outcomes. The reasons for these patterns are multiple and complex, but certainly coping with kidney failure is an intensely psychologically and socially challenging experience, and psychosocial wellbeing is likely a major contributor to health outcomes,” Catherine Butler, MD, MA, from the University of Washington School of Medicine, told Healio.

“We wanted to better understand whether members of minoritized racial groups felt that they were receiving sufficient support for their psychological and existential needs.”

Quote from Catherine Butler, MD, MA

Catherine Butler, MD, MA, from the Kidney Research Institute and department of medicine at University of Washington.


In a survey, Butler and colleagues examined 997 English-speaking adults receiving maintenance dialysis between April 2015 and October 2018. All patients received care from one of 31 nonprofit dialysis facilities located in Seattle, Washington, or Nashville, Tennessee.

Participants reported ethnicity and responded to prompts about palliative and end-of-life care.

Using logistic regression adjusted for socioeconomic and demographic factors, researchers evaluated the correlation between racial ethnic group and each unmet care need.

Participants included in the final analysis included 113 Asian American or Native Hawaiian or other Pacific Islander (12%), 270 Black (29%) and 565 white individuals (60%).

Of the total group, 55% of Asian American or Native Hawaiian or other Pacific Islander participants and 53% Black participants reported wanting to learn about treating pain of kidney disease, whereas 39% of white participants reported those preferences; a similar trend was seen in reported wants to learn about treating symptoms of kidney disease (70% and 68% vs. 52%, respectively).

Additionally, Asian American or Native Hawaiian or other Pacific Islander participants and Black participants were more likely to want someone to talk with about the meaning of life (23% and 17% vs. 8%) and finding peace of mind (31% and 24% vs. 17%), wanting help in sharing thoughts and feelings with those close to them (41% and 32% vs. 22%) and finding spiritual resources (27% and 19% vs. 11%).

“Coping with kidney failure and treatments like dialysis can be incredibly psychologically and socially challenging. Gaps in existential and supportive care needs among Black and Asian American, Native Hawaiian or other Pacific Islander groups suggest that the health care system needs to be better designed to support these populations in coping with their disease,” Butler told Healio. “If we don’t pay attention to these supportive care needs, other types of treatment that we tend to focus on — medications, diet, dialysis, etc. — are not going to be nearly as helpful.”

Asian American or Native Hawaiian or Pacific Islander participants were also more likely to report wanting help in coping with sadness, finding meaning in life, finding hope and overcoming fears, compared with white and Black participants. Likewise, Black participants were more likely to report wanting to learn about relaxation or stress management and that they would like to have someone to talk to about their care plan and treatment options for the future, compared with white and Asian American or Native Hawaiian or Pacific Islander participants.

Butler added, “The next step is to dive into more detail about reasons for these gaps in care and opportunities to improve. While there may be opportunities to improve individual patient-physician interactions, perhaps more importantly, these results signal system-level gaps in care for minoritized racial groups of people with serious illness. This observation aligns with a broader movement to understand how health care system processes may perpetuate structural racism and to identify ways to rebuild our system.”

Read this article in Healio Nephrology