• In an analysis of data on US patients with autosomal dominant polycystic kidney disease, patient outcomes such as age of onset of kidney failure and access to kidney transplantation were strongly associated with race and ethnicity.
  • Investigators observed earlier onset of kidney failure and less access to kidney transplantation in Black and Hispanic patients. 

Newswise — Washington, DC (June 20, 2022) — Individuals with a hereditary condition called autosomal dominant polycystic kidney disease (ADPKD) are often diagnosed years or decades before they will need dialysis or a kidney transplant. This gives them time to receive medical care necessary to help protect their kidney health and slow the progression of their disease. A recent study published in CJASN reveals disparities, however, with Black and Hispanic patients being at a disadvantage.

For the study, Rita L. McGill, MD, MS (University of Chicago) and her colleagues analyzed data on adults with ADPKD in the US Renal Data System from January 2000 to June 2018, and they merged these data with US Census income data.

A total of 41,485 patients were followed for a median of 25 months. Among the major findings:

  • Black patients, Hispanic patients, and white patients were diagnosed with kidney failure at an average age of 55.3, 52.6, and 56.9 years, respectively.
  • Compared with white patients, Black patients and Hispanic patients had a 67% and a 50% lower odds of receiving a kidney transplant before being placed on dialysis.
  • Among patients who started dialysis, Black patients and Hispanic patients were 39% and 22% less likely than white patients to eventually receive a kidney transplant.

“We discovered that progression to kidney failure occurred earlier in Black and Hispanic patients with ADPKD, and that access to transplantation was less than in white patients, both before and after the onset of dialysis treatment,” said Dr. McGill. “Our results suggest that there is potential to improve kidney care and kidney transplantation for Black and Hispanic patients.” 

An accompany editorial notes that given evidence of persistent racial and ethnic inequities in kidney care overall, patterns in care observed in this study among individuals with ADPKD are likely generalizable to other genetic conditions.

An accompanying Patient Voice provides the insights and perspectives of Suzanne F. Ruff, a kidney disease advocate, living donor, and author, who notes that more than 20 of her family members have or had ADPKD, with ten deaths, including her mother and sister.

Additional study authors include Milda R. Saunders, MD, MPH, Alexandra L. Hayward, and Arlene B. Chapman, MD.

Disclosures: The authors reported no financial disclosures.

The article, titled “Health Disparities in Autosomal Dominant Polycystic Kidney Disease (ADPKD) in the United States,” will appear online at http://cjasn.asnjournals.org/ on June 20, 2022, doi: 10.2215/CJN.00840122.

The editorial, titled “Addressing ‘Second Hits’ in the Pursuit of Greater Equity in Health Outcomes for Individuals with ADPKD,” will appear online at http://cjasn.asnjournals.org/ on June 20, 2022, doi:10.2215/CJN.05970522.


The Patient Voice, titled “Changing Health Disparities in Autosomal Dominant Polycystic Kidney Disease (ADPKD),” will appear online at http://cjasn.asnjournals.org/ on June 20, 2022, doi: 10.2215/CJN.05790522.


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