Over the past decade, programs that focus on helping people transition to dialysis with an “optimal start” have had limited success. This is true in both the United States and Canada, even though the cost of treatment is not a factor in Canada. These results underscore the fact that current education and care coordination efforts are not addressing the depth of patient feelings, concerns, and experiences or the impact of social determinants of health (SDOH).
Research suggests people who start dialysis in a planned way with a permanent access have better early dialysis outcomes, improved quality of life, and lower healthcare costs compared to patients who have an unplanned dialysis start.1,2,3,4 In order to improve early dialysis outcomes, chronic kidney disease (CKD) programs focus on helping people transition to dialysis with an “optimal start,” which is often defined as starting treatment with either a permanent dialysis access, with home therapy, or with a preemptive transplant.5,6,7 In the past decade, CKD programs have developed robust treatment options education, multidisciplinary care team approaches, and case management interventions to improve the likelihood that people will experience a planned and optimal dialysis start.8,9,10,11 Such interventions have led to variable, incremental improvement in the percentage of people who achieve an optimal start.
Residents of Canada access healthcare without consideration of expense. On their own initiative, they access a primary care practitioner, walk-in clinic, or emergency room where they receive indicated care. About 85 percent of Canadians (including about 90 percent of females) have a regular medical doctor, but less than 50 percent of Canadians “regularly go to the doctor for complete physicals or checkups.”12,13 Rather, the decision to present for healthcare is often affected by symptoms, convenience, and perceived need.
Since progressive kidney diseases rarely exhibit symptoms early and general screening tests frequently omit serum creatinine, kidney disease is often not detected until late in the disease — unless the patient has a coexisting risk factor that prompts such specialty screening (especially diabetes). Thus, patients who have chronic diseases that heighten the risk of kidney disease or who have detected progressive kidney disease continue to receive medical care without the cost influencing their decisions. One might therefore consider that users of this healthcare system might have kidney disease detected, followed, and controlled earlier than users of a system where payment is required for each medical visit, test, or intervention.
In 2019, the incidence of patients requiring kidney replacement therapy was about 208 per million population, 62 percent male and 38% female.14 Of these, 2.9 percent received a preemptive kidney transplant, 22 percent received home dialysis, and 75 percent began dialysis in an outpatient setting. Patients started dialysis with a mean eGFR of 9 mL/min/1.73m2. Some 92.9 percent of patients on peritoneal dialysis (PD) and 69.7 percent of hemodialysis (HD) patients were followed by a nephrologist for 90 days or more, before starting treatment. Of those who started in-center hemodialysis, 84.7 percent began with a catheter as vascular access, 14.6 percent with a fistula, and 0.5 percent with a graft.
In Canada, during the transition to kidney replacement therapy, or among different therapies within the nephrology program, holistic support is provided to highly variable extents. In 2005, over 90 percent of the Canadian nephrologists surveyed stated they “always or usually used” a multidisciplinary team–based CKD care clinic. But the expertise available in these settings varied significantly among the centers, based to some degree on the individual interests and funding available to support such services.15
In 2018, about 132,000 Americans (390 per million population) reached end-stage kidney disease (ESKD). Of these, about 113,000 (86 percent) started with in-center hemodialysis and about 15,000 (11 percent) started with either peritoneal dialysis or home hemodialysis. In the United States, uninsured individuals were less likely to receive pre-dialysis CKD care than people with Medicare or commercial insurance (Figure 1).16 Lack of pre-dialysis nephrology care is associated with a poorer transition to dialysis start, with increased use of a central venous catheter (CVC), lower use of a home therapy, and increased risk of hospitalization at the time of transition to dialysis start (Figure 2).17
FIGURE 1 | Approximate percent of patients starting ESKD with prior nephrology care based on insurance type in the U.S.
FIGURE 2 | Type of vascular access at start of dialysis based on pre-ESKD nephrology care in the U.S.
Despite more than a year of late-stage CKD nephrology care, over half of U.S. patients still started dialysis with a CVC, a data point that has not improved significantly since 2005.18,19 Kaiser Permanente published findings from a 2007 to 2014 “Optimal Start Initiative,” which leveraged in-person CKD education, vascular access coordinators, and data tracking tools and only resulted in an increase in optimal starts from 57 percent to 68 percent.20 Coordinated nephrology care, late-stage CKD management, and preparation for dialysis start improve the likelihood that people may start dialysis as an outpatient without hospitalization for urgent dialysis start. In the US, 54 percent of individuals transitioned to dialysis without hospitalization in 2018, an increase from 40 percent in 2013, but racial disparities in achieving an outpatient start persisted, suggesting unequal access to CKD care.21
Canada and the U.S. have common goals for treating ESKD but some fundamentally different approaches.22 Canada has national healthcare funding, and all dialysis facilities are in the public domain. The U.S. functions with both federal and commercial insurance coverage, and most of the dialysis facilities are privately held. In general, individuals with ESKD in Canada are more often male (61 percent vs. 58 percent), less likely to be Black, and more likely to use a home therapy than individuals with ESKD in the U.S.
In both countries, lack of real improvement in optimal starts despite formal programs, robust education, and care coordination has spurred research in this area. In the U.S., use of a central venous catheter at dialysis start has been essentially unchanged over the past decade at 82 percent in 2010 and 81 percent in 2018, according to USRDS data.23 Despite eff orts to improve desirable home dialysis starts, only 14 percent of patients started kidney replacement therapy with either a preemptive transplant, PD, or HHD in 2018, a slight improvement from 9.4 percent in 2010. In Canada, the use of a central venous catheter at the start of dialysis may have increased slightly over the same period, from 78.6 percent to 83.9 percent, while the presence of a functioning AV fistula at the start of dialysis decreased from 16.3 percent to 14.6 percent.24 During this same period, significant efforts to improve home therapy start resulted in an increase from 22.2 percent to 25.8 percent, buoyed largely by the increase in patients starting dialysis on APD from 6.3 percent to 9.9 percent.25
Studies have identified both system issues and patient issues that impact dialysis start.26,27,28 System issues include fragmented care among nephrology practices, vascular access centers, surgeons, and sites of care delivery. These have led to delays and barriers to permanent access creation and contribute to unprepared and unplanned dialysis starts.29 In addition, patient factors are now recognized as significant contributors to not achieving an optimal dialysis start.30,31,32
Researchers studying Kaiser’s program found that whether or not an optimal dialysis start was achieved, most people preparing to start dialysis in the setting of coordinated nephrology care with education and case management still had feelings of fear, ambivalence, and denial.33
Qualitative nephrology studies demonstrate that patient feelings, experiences, concerns, and goals of care frequently diverge from—and surprise—providers who did not know or even imagine these feelings or expectations existed.34 In kidney disease, this causes healthcare decisions that do not reflect the choices, desires, goals, and/or values of the patient, yielding a “values gap” that impedes achieving quality goals in nephrology care. Qualitative research suggests the current biomedical approach to patient care in nephrology, an approach rooted in quantitative measures, is limiting patient engagement in shared decision making and the opportunity to support patient autonomy.35
In the U.S., late-stage CKD patients transitioning to dialysis start may have not only emotional needs that hinder the opportunity to start dialysis in an optimal way but also socioeconomic challenges that create major barriers to optimal care. An estimated 50 percent of patients starting dialysis each year are uninsured or are covered by Medicaid, and the majority are ethnic and racial minorities. These patients are challenged with social, economic, and environmental exposures that impact health behaviors, health care opportunities, and access to care.36
In the United States, CKD rates are the highest in the poorest neighborhoods, and socioeconomically challenged communities create CKD “hot spots.”37,38 Poor neighborhood residents with high rates of food insecurity and chronic disease have a greater risk of CKD and risk of progression of CKD to ESKD.39,40,41 In addition, CKD and poverty appear to be bidirectional: impoverished people have less access to healthy food, are more likely to have unstable housing, have more employment challenges, are less likely to be able to adhere to medical care, and have less access to healthcare, which increases the likelihood of CKD and CKD progression. Having a chronic disease often creates disability, missed workdays, decreased employment income, and greater healthcare expenses, all leading to increased poverty.42
Studies show that poor education level, common in the socioeconomically disadvantaged population, is associated with a decreased likelihood to start dialysis with a home therapy. This group of patients has greater difficulty navigating the complex medical requirements to get a kidney transplant.43
Specifically, for CKD, addressing unmet SDOH needs for patients would involve:44
People who have access to care and are in a trusting partnership with a multidisciplinary nephrology team can navigate the complex steps to make a modality decision, pursue transplant and/or permanent access work-up, and obtain a usable permanent dialysis access. They are more likely to transition to dialysis in a planned way in an outpatient or home setting. Informing and educating patients is necessary for achieving an optimal dialysis start, which is a shared provider and patient goal.
Data suggests that many SDOH-related inequities result in a disproportionate number of socioeconomically challenged racial and ethnic minority patients starting dialysis in a suboptimal manner. CKD education alone or even in concert with standard nephrology care will improve the likelihood of an optimal start but may not be sufficient to overcome these barriers.
Additionally, research suggests that for many people experiencing major health crises or changes in treatment, emotional barriers may prevent the ability to achieve a desired outcome such as an optimal dialysis start. Late-stage CKD preparation for the transition to dialysis start should acknowledge and address personal emotional stress such as fear, guilt, isolation, and abandonment. Steps should be taken to ensure that the nephrology team and individual person have shared values and goals. Information and education may not be enough to achieve an optimal dialysis start until SDOH and emotional needs are addressed.