An Informed and Activated Patient: Addressing Barriers in the Pathway From Education to Outcomes

We need to do a better job helping people manage their complex health conditions. Data suggest there is an important link between health and formal education in patients with chronic kidney disease (CKD).¹ Low literacy and less formal education are associated with more severe stages of kidney disease, less kidney-specific knowledge, and increased morbidity.^1–3 However, our understanding of causal mechanisms in the pathway between educational attainment and health is limited by observational cross-sectional study designs. There is a critical and unmet need to identify causal mechanisms in the pathway from education to poor health and determine whether these mechanisms are different in CKD compared with other conditions. When we understand causal mechanisms in the pathway, we can focus on addressing modifiable barriers that prevent patients from taking the necessary steps to stay healthy and preserve kidney function.

In this issue of AJKD, Morton et al⁴ report on a post hoc analysis of more than 6,000 patients with CKD participating in SHARP (Study of Heart and Renal Protection⁵). The authors identified significant differences in vascular morbidity and cause-specific mortality between the 4% of participants who had no formal education and a referent group comprising the 11% who had highest educational attainment (tertiary education). Across the study population, a progressive trend in point estimates was observed for mortality, but the differences between neighboring educational attainment groups were not statistically significant despite the large sample size. Also, after adjustment for lifestyle factors such as smoking status and comorbid conditions, the excess mortality risk associated with lower educational attainment was considerably reduced or even eliminated. Interestingly, the researchers did not find a difference in CKD progression rates across education levels.

These results suggest that educational attainment may be important to vascular morbidity and mortality but only at extremes, with the risk for poorest health in people who have no formal education. This is not surprising because low education is associated with unemployment, lower income, and less access to care.^6–8 Importantly, lifestyle factors attenuated the observed differences, suggesting that less healthy behaviors are essential components in the causal pathway between educational attainment and poor outcomes in CKD, consistent with current models from other patient populations. The Robert Wood Johnson Commission to Build a Healthier America describes “three major interrelated pathways” including “health knowledge and behaviors, employment and income, and social and psychological factors”^9(p5) that link formal education to health outcomes (Fig 1). Health knowledge specifically links educational attainment with health-related behaviors, including diet, physical activity, smoking, and chronic disease management. The findings of Morton et al support this framework and suggest that interventions to improve disease knowledge may improve behaviors to reduce morbidity and mortality. The dilemma is how to deliver disease-specific education in the context of complex conditions such as CKD.

Figure 1.

Model of inter-related pathways through which educational attainment affects health. Reproduced from “Issue Brief 6: Education and Health” with permission of Robert Wood Johnson Foundation.

It is unclear why Morton et al found that formal education is related to some clinical outcomes, but not CKD progression. One possibility is that regardless of individual education attainment, there are specific risk factors already in place that largely determine the fate of a person’s kidney health, such as genetic predisposition.¹⁰ Another consideration is that the mean estimated glomerular filtration rate in the Morton et al study was 25 mL/min/1.73 m², suggesting that more advanced kidney disease may be less amenable to interventions targeting lifestyle and behavioral changes. If this finding is confirmed by future research, it would highlight the importance of early targeted efforts toward disease-specific education and health optimization in individuals at risk or with early evidence of kidney disease.

One potential missed opportunity to improve patient knowledge early in kidney disease relates to the ongoing debate within the nephrology community regarding the definition of CKD and what patients should be told about their CKD diagnosis.¹¹ Some have suggested that providers do not disclose to patients in clear terms a “diagnosis” of CKD based on estimated glomerular filtration rate or other biomarkers¹² despite patients wanting this information.¹³ To the patient, this lack of commitment may undermine the strength of our recommendations to follow a healthy lifestyle. Furthermore, there is not always clear evidence regarding management strategies, such as blood pressure goals across all ages or comorbid conditions.¹⁴ Given the lack of clear evidenced-based consensus in both diagnosis communication and management within the nephrology community, it is perhaps not surprising that patients are not optimally primed with information about their CKD diagnosis and what they must do to preserve kidney function.

Another reason education may not be not linked to CKD progression is that even for the most educated patients, there simply may be “too much” to know and do to keep their kidneys as healthy as possible; as kidney disease advances, this issue likely becomes even more pronounced. Often CKD is not just one entity but rather a culmination of several underlying comorbid conditions; thus, when patients have CKD, it requires that they focus on all facets of their health. Instead of a singular evidence-based solution to manage CKD, patients are often asked to modify behavior in nearly every aspect of their lives. In addition to overall lifestyle changes, patients with CKD must adhere to complex regimens that affect what they eat and drink, how and when they take medications, and how they manage day-to-day illness and pain.

Given this situation, it is no wonder that patients with CKD are at equivalent risk for progression regardless of education level. If Morton et al are on target, we may have met the critical threshold above which patients just decide that the knowledge and behavior changes required are too overwhelming, no matter how much formal education they have. When life becomes no fun in the present, patients might choose to keep certain aspects of nonoptimal behaviors today at the expense of best outcomes tomorrow. Again, the real dilemma and our collective challenge remain in how to help patients change multiple behaviors that include diet restrictions, complex medication regimens, and healthy lifestyle implementations without becoming overwhelmed. Perhaps the best way to reach a destination is to start by taking small steps forward.

First we must try to address the disease-specific knowledge gaps of patients. Disease-specific education is only one part of motivation for healthy behavior, but it is an important part. Diabetes-focused education for patients who have diabetes mellitus improves glycemic control.¹⁵ Kidney disease–specific education in patients nearing dialysis therapy initiation may decrease mortality.¹⁶ We need more research focused on developing and testing education interventions to use early in CKD to stop the progression of disease. There is an opportunity for the nephrology community to help improve care by unifying around a consistent message for what providers should tell patients in terms of CKD terminology, definition, management, and implications.

When patients understand their diagnosis and what they must do to keep their kidneys healthy, we need to support them in maintaining behaviors aligned with preserving kidney function. One way to do this is to provide patient-centered counseling.¹⁷ This includes identifying patients’ values and goals and aligning them with their health behaviors. Decision aids are tools designed to increase patient knowledge and facilitate disease communication and often include methods to engage patients in shared decision making.¹⁸ They have been tested in numerous health conditions and been shown to increase patient disease knowledge and self-care, as well as improve clinical outcomes. A large systematic Cochrane review of decision aids identified very few trials of their use in chronic disease and no trials in kidney disease.¹⁹ It is time to explore tools like these to optimize CKD care.

We should also challenge the conventional wisdom that selling improved health benefits to our patients and collaborating with them in care will motivate them to develop and sustain healthy behaviors. In a recent study examining core human goals attached to exercise, Segar and colleagues²⁰ found that distant benefits from exercise were not strong motivators for exercising. Goals such as improving health, preventing disease, and living longer, although important to people, were not as compelling as daily priorities when deciding whether to exercise. The researchers suggested that “[b]y shifting our paradigm from medicine to marketing, we can glean insights into how we can better market and ‘sell’ exercise,” pointing out that “immediate payoffs motivate behavior better than distant goals.”^20(p1) Segar et al²⁰ call this “rebranding” to close the gap between behavior and values.

Applying this to patients with CKD, any interventions we develop must incorporate an emphasis on benefits that are immediate and aligned with patients’ values. Immediate benefits would be different depending on the behavior we were focusing on, such as emphasizing stress reduction and increased energy to motivate daily exercise. Another example would be thinking of fresh home meal preparation as an option that can save income otherwise spent on more convenient prepackaged or dine-out foods. Rebranding could give patients the positive reinforcement needed to sustain behaviors that can improve all outcomes, including progression of CKD, an outcome that might be perceived as too distant or nebulous when merely presented in terms of health benefit. Clearly, more work is needed to define the most effective methods of educating patients specifically about their CKD diagnosis and to close the gap between what patients value day to day and their subsequent behaviors. Only then can we potentially address the barriers all patients face, regardless of education attainment, and help them become truly informed and activated in their own care.