Tackling racial and ethnic disparities in autosomal dominant polycystic kidney disease

Autosomal dominant polycystic kidney disease (ADPKD) is a type of genetic kidney disease that causes cysts, or fluid-filled sacs, to grow in the kidneys. These cysts make the kidneys larger than normal, damage kidney tissue and can lead to kidney failure. As a genetic condition, ADPKD is passed down from a parent to their child. If just one parent has ADPKD, there is a 50% chance that their child will have it.

Although ADPKD affects people across all racial and ethnic groups, significant disparities driven in part by socioeconomic and geographic factors and barriers to health care exist in the progression of ADPKD, access to treatment and outcomes. Black and Hispanic/Latino people with ADPKD reach kidney failure earlier than white ADPKD patients, yet they are less likely to receive nephrology care before kidney failure and more likely to receive a delayed diagnosis of ADPKD than white patients.

Disparities are also seen in kidney transplants, which occur more frequently in white ADPKD patients (52%) than Black (31%) or Hispanic/Latino (42%) ADPKD patients. Studies show white patients on average spend a shorter amount of time on the transplant waitlist (15 months) than Black (28 months) or Hispanic/Latino (24 months) patients.

Disparities persist after transplantation, with research showing that Black people with ADPKD are at a higher risk of transplant failure than white patients. This is due to factors such as more years on dialysis, more antigen mismatches in the transplanted kidney and less pre-emptive transplantation (transplants that occur before dialysis is required) among Black ADPKD patients. These factors could also be the reason Black and Hispanic ADPKD patients are more likely to experience a delay in their transplant working properly than white patients.

Addressing health disparities in ADPKD requires an understanding of the causes that contribute to these disparities, said Dr. Pranav Garimella, an ADPKD specialist and AKF's chief medical officer.  

"Health care providers can mitigate these disparities by implementing standardized care protocols that ensure equitable management of ADPKD across all racial and ethnic groups, conducting regular bias training to address unconscious biases that may influence clinical decision-making, ensuring diverse representation in clinical teams to enhance cultural competence in care delivery, and developing early referral systems for transplantation evaluation regardless of patient demographics," Dr. Garimella said. 

"A collaborative approach that includes clinicians, patients, researchers and advocates, aimed at addressing systematic policy issues that perpetuate racial disparities, is critical to improving outcomes for people of color with ADPKD," he added.

Additionally, people living with ADPKD can engage in self-advocacy, a crucial tool for navigating disparities, Dr. Garimella said. 

"By building knowledge, forming support networks, advocating within health care settings, and engaging in broader advocacy efforts, patients may overcome barriers and improve their care outcomes," he said.

This could include seeking comprehensive information about ADPKD, its progression and treatment options; understanding the implications of kidney function tests and disease progression markers; learning about transplant options, including preemptive transplant and living donation; participating in clinical research and [joining] patient support groups and sharing their stories, said Dr. Garimella.

Click here to view AKF's fact sheet on ADPKD.

For information on living well with ADPKD, click here. 

Visit AKF's Kidney Health for All website to learn more about health equity in the kidney community, AKF advocacy trainings, transplants, clinical trials and more.

AKF's ADPKD awareness campaign was developed with support from Otsuka.