Dialysis Care Nonadherence: Contributing Factors and Integrated Care Solutions

Poor adherence to treatment plans is problematic no matter who the patient or what the condition, and it has substantial medical, social and economic consequences. For patients with end stage renal disease (ESRD), the prevalence of nonadherence (i.e., to treatments, medications or diet) and its ill effects can be even more pronounced. ESRD patients who are not adherent may suffer from additional health complications, an increased likelihood of hospitalization and a higher mortality rate. As care delivery expands to manage these challenges, costs increase as well, adding to the total cost of care. Fortunately, with the shift to value-based reimbursement, providers have an increased opportunity to integrate patient care and implement coordinated strategies to help reduce nonadherence.

Unique challenges with ESRD that contribute to nonadherence

With ESRD, patients’ physical demands can be unrelenting. Patients are confronted with adopting a dialysis schedule, which typically consists of four-hour dialysis treatments three times a week (if receiving hemodialysis in a center). This can thoroughly disrupt patients’ regular lifestyles, and often leave patients with side effects such as fatigue or nausea after treatment. In addition, patients must manage a variety of other health-related challenges, such as salt and water retention; specific dietary recommendations to balance protein intake while reducing phosphate intake; and often multiple medications that address mineral and bone disease, hypertension, anemia, cardiovascular disease, hyperlipidemia and diabetes with its complications. Not surprisingly, adherence often decreases as the complexity of regimen increases.

Moreover, the dialysis lifestyle can also take an emotional toll. A large percentage of dialysis patients have depression, anxiety and other mental health issues. Many patients feel a sense of futility and a diminished sense of control over their health outcomes. In a nationwide survey conducted by the American Kidney Fund, 42 percent of dialysis patients reported that depression, nervousness or fear stopped them from doing tasks they needed to complete in the previous month.

Specific areas of nonadherence

While nonadherence can exist across a broad range of medical interventions, the following list details a few of the more common areas that can have devastating effects on dialysis patients.

1. Medications. Many dialysis patients, at some point, take less than their recommended medication dosage, miss or discontinue medications, or stop filling prescriptions entirely. This lack of adherence can be attributed to the amount of medications (an average of 19 pills per day) prescribed, negative side effects or lack of insurance coverage.
2. Diet. When it comes to eating and drinking, it’s not surprising dialysis patients struggle. The kidney diet is strict and does not include foods that most patients enjoy. Additionally, social determinants of health (SDoH) often factor in a patient’s ability to comply with a solid kidney-focused diet, as patients often may not be able to afford recommended foods or don’t have access to grocery stores that offer appropriate foods.
3. Dialysis treatments. A substantial number of patients truncate or skip dialysis treatments due to the discomfort of treatments, intervening illnesses, conflicting commitments and other SDoH factors. Shortening or skipping treatments here and there may seem rather benign, but the consequences can be devastating. In one study, shortening three or more sessions in one month was associated with 20 percent higher mortality, and skipping one or more dialysis sessions in a month was associated with a 30 percent increased mortality risk.
4. Medical appointments. In addition to dialysis treatments, kidney patients often miss other medical appointments. This may be attributed to scheduling conflicts (the appointment was scheduled at the time of a dialysis treatment) or simply the need to reclaim some semblance of the time, freedom and autonomy they previously enjoyed. Ideally, other clinicians in addition to nephrologists will someday see patients during dialysis treatments—achieving two medical aims at one time.

Improving ESRD treatment adherence

The U.S. health care system has long focused on acute care delivery—which can present barriers to adherence when applied to chronic diseases. Care systems have traditionally lacked the design and infrastructure to improve adherence when a patient was outside of the acute care setting. The business of care coordination in the past was not cost-effective, even if it was the right thing to do. Additionally, the capabilities to make care coordination possible—such as clinician alignment, reconciling disparate data and transmitting patient-appropriate data to a care team, managing multiple clinical conditions simultaneously in a coordinated fashion, identifying value-focused care environments as alternative care settings, and exchanging information with those settings—did not exist, making it an arduous undertaking.

Today’s movement toward value-based care offers potential for better adherence among dialysis patients through multiple tools, including multidisciplinary care, information sharing, interoperability, access to additional patient resources and benefits, and provider incentives. Ironically, one of the most important efforts to improve patient adherence may lie in the all-important patient-physician interaction. A New England Journal of Medicine article theorized that a nephrologist’s 30-minute conversation educating a new dialysis patient about access could reduce treatment costs over six months by $20,000. Multiply this by even a subset of the entire ESRD patient population over a period of time and you can imagine the positive economic impact.

Quality payment programs offer incentives for greater care coordination, which is an opportunity to better align patients with the right resources they need to help them become comfortable with their treatment plans and thrive in their health care. Providers who invest in the tools to increase care integration may raise patient engagement and adherence in this new environment.

While nonadherence among ERSD patients is widespread and complex, clinicians may now have the means to influence and reverse this trend and bring about valuable change for patient and population health and all of its positive benefits for society.