Published findings indicate many African American patients with kidney disease lack knowledge of, and access to, renal replacement therapies other than in-center hemodialysis.
“Renal replacement therapies (RRT), other than in-center hemodialyses (IHD), have been known to reduce costs, morbidity and mortality, as well as improve the quality of life for patients with end-stage renal disease (ESRD),” Akilah King, MPH, of the department of nephrology at the University of Chicago Medical Center, and colleagues wrote. “In the United States, African American ESRD patients are less likely than their white counterparts to choose peritoneal dialysis (PD), home hemodialyses (HHD) and transplantation, despite evidence that these RRT modalities are associated with improved clinical and patient-centered outcomes compared with IHD.”
Researchers theorized African American patients may be less likely to choose alternative modes of RRT due to lack of pre-dialysis education and limited decision-making time (because, the authors wrote, dialysis is often urgently initiated in this patient population). Furthermore, researchers argued African American patients are less likely to be offered transplant or PD due to “provider misinformation or biased perceptions.” In addition, they suggested African American patients face barriers when engaging in shared decision-making with their providers due to mistrust of physicians and low health literacy.
To more fully explore African American patients’ knowledge of RRT modalities and their experiences with RRT selection, researchers conducted interviews with 28 patients (22 patients with CKD and not on dialysis and six with ESRD and receiving treatment for kidney failure). Based on these interviews, researchers identified themes related to education and treatment planning for kidney failure.
Patients with CKD first reported limited knowledge of alternative options. Researchers found 68% lacked knowledge of HHD and 50% reported no knowledge of deceased donor kidney transplantation. Moreover, 23% had knowledge of or understood PD, making it the least known about modality, while 36% reported no knowledge of in-center hemodialysis. Furthermore, although 73% of patients reported knowledge of living donor transplantation, this did not translate to increased access to the modality.
Secondly, despite having an advanced stage of CKD, patients were often in the early stages of decision-making. Most patients had given little thought to the likelihood that they would need to choose an RRT modality in the future and were in what researchers termed the “thinking stage” rather than the action stage. Respondents desired additional information before making an active selection, leading to a third theme: Patients frequently reported waiting for their doctors to make treatment decisions for them.
“This overall lack of knowledge was surprising, given that over 90% of patients were recruited from the nephrology clinic and over 95% had CKD stage 3 or above,” the researchers wrote. “Potential explanations for this lack of patient knowledge about RRT include poor patient understanding, patient denial, poor physician communication, and physicians not initiating explicit discussion because they do not want to worry patients ... Knowledge of these barriers could inform clinical interventions to identify, educate and motivate patients to increase CKD self-care and to improve communication and shared decision making between African American CKD patients in the United States, patients with CKD from minority groups throughout the world, and their families and providers about different RRT treatment options.”
Researchers noted these results will be used for a pilot intervention for hospitalized African American patients with advanced CKD. As patient knowledge was determined to be an important barrier, the intervention will support patient-education efforts with medical resources and strategies for shared decision-making, as well as psychosocial methods for coping (ie, provide emotional support while addressing denial about the severity of the condition). The intervention will also open up communication with the inpatient team to improve referrals to social work, nephrology, dialysis access clinic or transplant clinic. – by Melissa J. Webb
Disclosures: The authors report no relevant financial disclosures.