Chronic kidney disease (CKD) is the ninth leading cause of death in the United States, and one in three Americans is currently at risk for developing CKD. A study at the Johns Hopkins University School of Medicine, however, showed that approximately 50% of the study participants at moderate to high risk for kidney failure were unaware they had kidney disease.* 

What Causes Low CKD Patient Awareness?

Patient education is widely recognized as a necessity for both prevention and effective treatment. Education increases patients’ knowledge, skill level, and confidence to self-manage their health and care throughout the disease stages.  

Based on previous research, the study identified several explanations for low CKD patient awareness, including: 

• Lack of symptoms in early stages of the disease
• Physicians’ limited knowledge of CKD’s changing clinical guidelines
• Physician challenges explaining CKD’s complexity and risk factors
• Difficulty managing CKD patients’ (often multiple) medical conditions
• Fear of creating unnecessary stress for patients with low-risk CKD
• Limited time vs. money incentives for providers to educate patients 

Providers now have:

• Tools that enable them to identify populations at high risk for kidney failure, cardiovascular disease, and death, 
• Tools to identify patients who could most benefit from screenings and treatment, and
• Drug therapies that can help slow the progression of CKD.

Boosting Patient Education and Engagement

Efforts to enhance CKD patient education must take place on several levels.

Individual Patient

Patient level efforts should include: 

• Interactive teaching and goal-setting sessions 
• Multidisciplinary group approaches and use of digital media
• Inclusion of caregivers and other family members
• Linkage of CKD education with education on related chronic diseases
• More frequent scheduled sessions

Individual Provider 

The lion’s share of early-stage CKD management falls to primary care providers, so improved provider education is critical. The study authors recommend:

• Using evidence-based resources and risk tools to initiate and enhance risk-benefit discussions, and
• Introducing risk prediction and risk-based approaches earlier in physicians’ medical training to increase familiarity and comfort levels when communicating with patients.
• Encourage patients to engage with other members of the CKD health team, such as renal dietitians and social workers.

Systemic 

Systemic approaches need to consider:

• Wider distribution of patient-friendly risk-assessment tools to both patient organizations and healthcare providers, and 
• Reimbursement to providers for time devoted to patient education.

National 

You can easily access many national CKD resources, such as:

• The National Kidney Foundation
• American Kidney Fund “Know Your Kidneys” campaign
• Cukebook and Kidney Kitchen (for CKD-healthy recipes)
• Goutful
• ACT on Anemia

Importance of Education and Awareness for All Patients 

While it may be more efficient in the short term to focus on patients who are at high risk for developing renal failure, education and awareness campaigns that target both low- and high-risk patients can help more people live longer, healthier lives, delay the need for dialysis, and feel empowered to take a proactive role in their disease management and decision-making.

*Chen, J., Fowler, K., & Grams, M. (2020, June 16). “Knowledge is Power: Patient Education as a Tool for Patient Activation.” American Journal of Kidney Diseases.

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