• 1.

    United States Renal Data System. 2020 USRDS Annual Data Report: Epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2020. https://adr.usrds.org/2020

    • Search Google Scholar
    • Export Citation
  • 2.

    Shen JI, et al. Attitudes toward peritoneal dialysis among peritoneal dialysis and hemodialysis medical directors: Are we preaching to the right choir? Clin J Am Soc Nephrol 2019; 14:10671070. doi: 10.2215/CJN.01320119

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 3.

    United States Renal Data System. 2018 USRDS Annual Data Report: Epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2018. https://www.usrds.org/annual-data-report/previous-adrs/

    • Search Google Scholar
    • Export Citation
  • 4.

    Shen JI, et al. Socioeconomic factors and racial and ethnic differences in the initiation of home dialysis. Kidney Med 2020; 2:105115. doi: 10.1016/j.xkme.2019.11.006

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 5.

    Walker RC, et al. Patients’ experiences of community house hemodialysis: A qualitative study. Kidney Med 2019; 1:338346. doi: 10.1016/j.xkme.2019.07.010

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 6.

    Ghaffari A. Urgent-start peritoneal dialysis: A quality improvement report. Am J Kidney Dis 2012; 59:400408. doi: 10.1053/j.ajkd.2011.08.034

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 7.

    Bowman BT. Transitional care units: Greater than the sum of their parts. Clin J Am Soc Nephrol 2019; 14:765767. doi: 10.2215/CJN.12301018

  • 8.

    Schatell D. Introducing the new Partner Agreement on Tasks for Home Dialysis (PATH-D) tools—comments welcome [Blog]! Home Dialysis Central. May 7, 2015. https://homedialysis.org/news-and-research/blog/99-introducing-the-new-partner-agreement-on-tasks-for-home-dialysis-path-d-tools-comments-welcome

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Removing Barriers to Home Dialysis Takes a Team Approach

Full access

Patient advocate Dawn Edwards has spent most of the last 30 years on home dialysis, including 10 years on peritoneal dialysis. She has also mentored hundreds of people with kidney disease. So, she is well aware of the burdens and barriers that can stand in the way of a patient starting and staying on home dialysis. The key, she says, is having a good team.

“It's really important for clinical teams and interdisciplinary teams to…work together to provide patients the support and resources they need to be successful at home,” Edwards said.

Edwards was one of a panel of experts who participated in the Kidney Week 2021 Starting at Home and Staying at Home session. The panelists highlighted barriers to home dialysis and disparities in which types of patients are offered this option. They also highlighted a range of solutions to boost home dialysis initiation and continuation. Among them were improved home dialysis education for clinicians and patients, more clinical and peer support, and flexible home dialysis initiation and continuation options that can better fit patients’ clinical circumstances and lifestyles.

“If we all work together, we can make so many more patients happier and healthier and allow them to experience the great benefits I have had being at home and being an empowered, educated patient,” Edwards said.

Getting started

A growing number of patients are on home dialysis, but they still represent a small fraction of patients with end stage kidney disease (ESKD). Currently, 12.5% of US patients requiring kidney replacement therapy are on home dialysis, according to 2020 data from the US Renal Data System (USRDS) (1). About 11% are on peritoneal dialysis, and 1.8% are on home hemodialysis, noted Lisa Koester-Wiedemann, ANP, CNN-NP, a renal nurse practitioner at Washington University School of Medicine in St. Louis, MO.

There are also disparities in which patients are offered the option of home dialysis, said Jenny Shen, an investigator at the Lundquist Institute at Harbor-University of California, Los Angeles Medical Center. Physicians may be reluctant to put patients who are older, have diabetes, or are obese on home dialysis, she said. But Shen argued that these are not insurmountable barriers. In fact, studies show that more experienced home dialysis providers are less likely to discriminate based on medical factors (2).

“[The patient's] practitioner just has to know how to tailor the medical care to the patient,” she said.

Perceived socioeconomic barriers also exist, Shen said. For example, patients with lower education levels or employment status are less likely to be on home dialysis. Having a smaller home has also been linked to lower use of home dialysis, likely because space constraints can make storing necessary equipment and supplies difficult. Patients who receive a late diagnosis or who crash into dialysis are also less likely to be offered home dialysis.

All of these perceived barriers to home dialysis disproportionately affect Black and Hispanic patients who have lower rates of home dialysis than their White counterparts, Shen noted. Only 9% of Black patients with ESKD and 10% of Hispanic patients are on home dialysis compared to 12% of White patients, according to 2018 USRDS data (3). In fact, a study by Shen and colleagues showed that Black patients are 30% less likely to start dialysis at home than White patients, and Hispanic patients are 20% less likely to do so (4). These disparities persisted even after adjusting for demographics, co-morbid medical conditions, or socioeconomic factors.

“If we address some of the known medical and socioeconomic barriers, we make some headway to increasing equitable access,” Shen said.

Edwards said she often finds that urban communities with higher concentrations of people of color often have little or no access to home dialysis programs in their community and may have to travel outside of their community to seek such care. This can make it difficult for patients who worry they will not be able to make their visits.

“We have to look at making home dialysis more accessible,” Edwards said. She said this includes having nurses and other team members who support patients in these communities. In lower socioeconomic communities, patients may live in older or public housing and may also need help with installing electrical outlets for their dialysis equipment, she said.

But these barriers can be overcome, said Shen. Already home dialysis rates have increased since the implementation of the Centers for Medicare & Medicaid Services’ ESRD payment bundles in 2011, which have increased reimbursement for home dialysis, and groups that have been historically underrepresented among home dialysis patients are seeing the largest increase, Shen noted.

“The disparities we’ve talked about in home dialysis initiation have started to narrow,” she said.

Overcoming obstacles

Better education for both home dialysis patients and providers is essential to further boost rates of home dialysis and to help keep patients on home dialysis, said several panelists. More training in home dialysis for nephrology fellows is key, Shen said.

“If they are better trained, they will be more confident in treating home dialysis patients and be better equipped to overcome barriers to home dialysis,” Shen said.

Standardized education in home dialysis modalities is also key to boosting uptake and reducing disparities, Edwards said. She said this would provide all patients with the information they need to engage in shared decision-making with their clinician.

“We can talk about which option best suits their lifestyle[s] [and] which option suits them for the best clinical outcomes,” she said.

Shen recommended considering different approaches to home dialysis that may help meet patients’ needs. Assisted home dialysis, where patients receive in-home help, may allow people who are older, have disabilities, or just need more help get started, Shen said. People with small homes may benefit from twice-monthly supply deliveries to alleviate the space crunch, she said. The community house (5) home hemodialysis model developed in New Zealand might be another model to help those who do not want to participate in home dialysis to dialyze close to home in a home-like setting with support from other patients.

Urgent-start peritoneal dialysis (6) or transitional dialysis units (7) may help patients who crash access home dialysis, Shen said. Susie Lew, MD, professor of medicine at George Washington University in Washington, DC, also discussed the potential benefits of starting patients on incremental peritoneal dialysis, a reduced initial prescription that ramps up gradually as residual kidney function declines.

It is also important for home dialysis teams to set clear expectations for patients, Koester-Wiedemann said. She said this should include a home visit to troubleshoot and discussions about patient responsibilities including medications, clinic visits, blood draws, and how patients can stay connected to their teams.

“Setting clear expectations prior to dialysis training aided patients’ acceptance and understanding of responsibilities, which reduced their anxiety,” Koester-Wiedemann said. She also recommended using a Partner Agreement on Tasks for Home Dialysis (PATH-D) tool (8) to help establish what will be expected of the patient's caregiver or partner.

“We find that the patient will have high expectations on the partner to do so many things, and [partners] have other responsibilities of their home such as paying the bills [and] doing the grocery shopping,” Koester-Wiedemann said. “This is where we find partner burnout.”

When Koester-Wiedemann and her colleagues looked at causes for patient dropout in their program, they found that 1 in 10 patients cited the burden of therapy. They also found that among the “non-compliant,” a patient's burden of therapy or partner burden was a factor.

“Kidney disease doesn't stop, but people do wear out, and self-care is a never-ending job,” Edwards said.

Brian Rifkin, MD, a nephrologist at the Hattiesburg Clinic in Mississippi, described the medical complications, including infections or catheter complications, that can cause patients to leave home peritoneal dialysis. He also highlighted some strategies to preserve peritoneal membrane function using medications and other approaches.

Support from the multidisciplinary team and from peers can help mitigate a patient's care burden and troubleshoot problems that can arise. For example, Koester-Wiedemann noted that her program offers 24-hour nurse and equipment support. Programs should offer respite care where patients can get help with their home dialysis unit or one nearby, Koester-Wiedemann said. Edwards said having a good respite program can give both patients and their partners a break and allow them to regroup.

“We don't want that machine to run their lives,” Koester-Wiedemann said. “We want them to run their lives and incorporate the machine into their lives.”

Nephrologists can help by developing a dialysis prescription that is personalized to both the patient's medical condition and to his or her daily life, Koester-Wiedemann said. Edwards said it is essential for the care team to work with the patient to help him or her meet goals whether it is traveling or going back to school or work. Nephrologists should consider options like nocturnal dialysis, continuous ambulatory peritoneal dialysis (CAPD), or continuous cycling peritoneal dialysis (CCPD) that might better fit a patient's needs, Koester-Wiedemann said. Lew provided detailed clinical information about urgent-start peritoneal dialysis, incremental dialysis, CAPD, and CCPD.

“We need the entire care team to lift up and support…patient[s], let them know that they’re doing a good job, provide them with the rest they need when respite is needed, [and] help them to achieve those personal goals,” Edwards said.

References

  • 1.

    United States Renal Data System. 2020 USRDS Annual Data Report: Epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2020. https://adr.usrds.org/2020

    • Search Google Scholar
    • Export Citation
  • 2.

    Shen JI, et al. Attitudes toward peritoneal dialysis among peritoneal dialysis and hemodialysis medical directors: Are we preaching to the right choir? Clin J Am Soc Nephrol 2019; 14:10671070. doi: 10.2215/CJN.01320119

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 3.

    United States Renal Data System. 2018 USRDS Annual Data Report: Epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2018. https://www.usrds.org/annual-data-report/previous-adrs/

    • Search Google Scholar
    • Export Citation
  • 4.

    Shen JI, et al. Socioeconomic factors and racial and ethnic differences in the initiation of home dialysis. Kidney Med 2020; 2:105115. doi: 10.1016/j.xkme.2019.11.006

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 5.

    Walker RC, et al. Patients’ experiences of community house hemodialysis: A qualitative study. Kidney Med 2019; 1:338346. doi: 10.1016/j.xkme.2019.07.010

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 6.

    Ghaffari A. Urgent-start peritoneal dialysis: A quality improvement report. Am J Kidney Dis 2012; 59:400408. doi: 10.1053/j.ajkd.2011.08.034

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 7.

    Bowman BT. Transitional care units: Greater than the sum of their parts. Clin J Am Soc Nephrol 2019; 14:765767. doi: 10.2215/CJN.12301018

  • 8.

    Schatell D. Introducing the new Partner Agreement on Tasks for Home Dialysis (PATH-D) tools—comments welcome [Blog]! Home Dialysis Central. May 7, 2015. https://homedialysis.org/news-and-research/blog/99-introducing-the-new-partner-agreement-on-tasks-for-home-dialysis-path-d-tools-comments-welcome

    • Search Google Scholar
    • Export Citation
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