Results of an online survey of patients who had reached end-stage kidney disease (ESKD) illustrate racial disparities in the transition to dialysis and highlight areas for improvement, such as in dialysis education. The survey, conducted in February 2021 by Outset Medical and distributed by the National Kidney Foundation (NKF) via email, partner sites, and social media, included 173 (38%) Black respondents, 234 (52%) White respondents, and 43 (10%) respondents of other races. Findings with a 10% or more difference were reported.
What Matters to Patients in Dialysis Care
The 5 most important attributes to patients when selecting a dialysis modality included its effectiveness (87%), quality of life (84%), insurance coverage (82%), life expectancy (79%), and accessibility (77%). White respondents were more likely than Black respondents to focus on efficacy (91% vs 79%) and quality of life (89% vs 76%). Black respondents, however, were less likely to report that insurance covered all or most of their dialysis treatments (66% vs 80%).
More than half of respondents overall were willing to give up convenience for better dialysis treatment outcomes (54%), but only 37% were willing to pay more. Few Black and White patients worked full-time (12% vs 11%) or part-time (8% vs 5%), whereas a third of each group (34% vs 32%) were unable to work.
“Our survey found socioeconomic factors played a major role in early knowledge of kidney disease status prior to the onset of kidney failure,” Tonya Saffer, head of government affairs at Outset Medical, told Renal & Urology News.
According to a recent report on race in kidney care by a joint task force of the NKF and American Society of Nephrology (ASN), equity in healthcare does not vary in quality on the basis of personal characteristics, such as sex, race/ethnicity, geographic location, or socioeconomic status.
“We need dialysis payment models that are more aligned with patient circumstances and goals to improve their health outcomes and quality of life,” Saffer said.
Choosing a Dialysis Option
All survey respondents expressed awareness of dialysis treatment options, including in-center hemodialysis (HD), home HD, and peritoneal dialysis (PD). More respondents were currently receiving in-center HD (67%) than home dialysis (42%), with some patients using both.
A greater proportion of Black than White patients were encouraged by their care team to adopt in-center HD: 62% vs 49%. Fewer Black respondents thought in-center HD was accessible (58% vs 84%) and perceived access to trained clinical staff as an asset (62% vs 82%), however. More Black patients felt anxious about going to the dialysis clinic (46% vs 33%). Only 27% of respondents overall were worried about COVID-19 infection with 10% missing some or most of their sessions due to the pandemic. Although in-center HD was generally perceived as effective, fewer Black than White respondents thought so (65% vs 81%).
PD (62%) and home HD (59%) were also viewed as effective options by respondents. Fewer Black than White patients, however, felt knowledgeable about all of the available dialysis modalities: 71% vs 88%. Black respondents were far more likely to report that their care team failed to provide sufficient education on the treatment options: 25% vs 3%. A greater proportion of Black respondents researched home dialysis options on their own: 24% vs 14%. More Black than White respondents further reported that they were never given the option to start at-home dialysis: 14% vs 4%.
“Strengthening patient education about treatment options early on in the kidney disease journey can enable access to higher-quality, affordable forms of treatment,” Saffer said. “We found, for example, that there were minimal differences in home therapy adoption between White and Black patients who had received comprehensive education about their options.”
Only 9% overall reported that the COVID-19 pandemic was very influential in the decision to start home dialysis. The main draws of PD were at-home comfort (49%) and no needle requirement (48%), which were balanced by concern over catheter infection (52%). Home HD offered comfort (51%) and flexibility (47%) but with the drawbacks of no trained staff (46%) and a self-cannulation requirement (44%).
“More public policy is needed that encourages greater access to home dialysis, such as realigning reimbursement and modernizing outdated regulations that make it more challenging for patients to access home dialysis training and support,” according to Saffer. “Breaking these barriers on a national level can significantly impact the overall availability of home dialysis including among underserved populations.”
Sixty percent of respondents who actively decided against at-home dialysis preferred the clinic, 49% lacked a care partner, and 44% were unable to perform at-home treatment correctly. Patients who previously received home dialysis and stopped most commonly blamed a lack of storage space for supplies (24%).
Timing Is Everything: Urgent Dialysis Starts
Although there was an almost 50/50 split between respondents with a planned or unplanned start to dialysis, a greater proportion of Black than White patients had an emergent start to dialysis: 57% vs 44%. Sixty-one percent of patients younger than 50 years, 59% of those with incomes less than $25K, and 52% of those with incomes $25K to $75K also had an emergent start.
“To help reduce emergent starts for Black individuals, health systems need to expand educational programs in underserved patient populations and communities of color to prepare them for kidney disease management early on,” Saffer said. “These programs empower them with the knowledge to proactively select their preferred dialysis modality sooner and to get on the kidney transplant list preemptively.”
Patients who had an urgent, unplanned start to dialysis were more likely than those with a planned start to be receiving in-center HD (73% vs 61%). Conversely, half patients who eased into dialysis were currently receiving at-home treatment. Use of home dialysis also increased along with income from 23% of patient households making less than $25K annually to 39% of households making $25K to $74K to 63% of households making $75K or more.
Black Patients Less Trustful
Nephrologists ranked first among dialysis care team members educating patients on dialysis treatment options. Following nephrologists (56%), renal dietitians (50%), social workers (43%), and nephrology nurses (41%) primarily educated patients on treatment modalities. Most respondents (84%) found the information comprehensive (78%) and proactively provided (76%). Yet more White than Black respondents felt informed (82% vs 69%) and supported (82% vs 57%) by their dialysis care team.
Fewer Black respondents expressed full trust in health care providers (19% vs 43%), including their own providers (32% vs 57%). In addition, Black patients were less likely than their White counterparts to consider their clinician’s recommendation as very important (64% vs 74%).
Only 67% of Black respondents had a nephrologist involved in their care, compared with 97% of White respondents. Yet research shows that kidney function declines faster and at an earlier age in Black patients.
“Patient awareness of potential risk factors that drive kidney disease are essential,” Saffer stated. “A stronger sense of trust between patients and their care teams comes from making deeper connections. Clinicians can build trust with Black patients by taking time to listen and understand their individual needs, challenges, preferences, and values.”
New technology can help reduce undue administrative burden on clinicians and allow more time for patient care, Saffer noted. “On a national level, legislators should support a health care system that prioritizes patient-centered care models,” she said. Evidence shows that patients prefer to have shared decision making with their physician about their care, rather than the patient or the physician being the sole decision maker, according to the joint NKF-ASN report.
Effort to Reduce Health Care Disparities
“Disparities across racial and ethnic groups in the United States exist in kidney disease care, including diabetes and blood pressure control, nephrology referral, dialysis modality, and transplantation, and with regard to both living and deceased kidney donation,” the authors of the NKF-ASN report highlighted.
The task force will be issuing recommendations on updating kidney function equations after a fact-finding phase. The task force acknowledged that eliminating health disparities in kidney care is a Herculean task. They invited health care professionals and patients alike to join the effort.
Racial disparities in dialysis path to treatment. Outset Medical; March 2021.
Delgado C, Baweja M, Ríos Burrows N, et al. Reassessing the inclusion of race in diagnosing kidney diseases: an interim report from the NKF-ASN task force. J Am Soc Nephrol. doi:10.1681/ASN.2021010039