Introduction
CKD disproportionately affects minority populations, but many interventions fail to address the cultural barriers that arise when working to improve the health of a population. Rural minority communities often struggle to meet the needs of patients, because access may not be available, patients must travel long distances to receive care, or limited staffing prevents the delivery of comprehensive care. In this issue of the Clinical Journal of the American Society of Nephrology, Nelson et al. (1) report on a clinical trial of home-based CKD care that improved patient activation and reduced some risk factors for kidney disease. This trial also modeled an effective approach for maintaining minority participation.
Strengths
The home-based Zuni Indian CKD intervention showed several characteristics that made it a well developed clinical trial design. The most critical factor attributed to improved patient activation scores was the depth of cultural awareness. Immersion within any target population should be done with humility and willingness to learn from the community. Using community members to develop curriculum and aid in education delivery ensured culturally sensitive and appropriate information. Partnering with the Zuni tribal leadership allowed community members to view this intervention as a personalized investment in their health care and feel ownership of the methods for care. When designing interventions, health care providers must remember that the voice of the population must not be extinguished, because it is the most important component in developing a successful care plan. High visibility of health care workers in the community communicated a high level of concern for its wellbeing. The education provided to the Zuni patients was comprehensive, because it ensured that patients understood what a healthy lifestyle looked like and reminded them to manage other chronic risk factors, such as diabetes, hypertension, and smoking.
The home-based kidney care reflects the preference of the population. As a former patient on hemodialysis, I understand the significance of comfort. Although dialysis is a life-sustaining process and the medical staff may be attentive, it is very easy for patients to feel anxiety from the sterile, mechanical world inside a facility. During home visits, patients are interacting with a community representative while receiving point-of care testing. Studies have shown that people are more comfortable participating in activities or events when they can interact with people who look like them. Incorporating community members supported patient adherence to care. This intervention shows that opting to manage care from an environment that is familiar with familiar individuals can reduce stress and fear during treatment.
Most importantly, home-based kidney care ensures access to care. I can recall the difficulty in scheduling a dialysis treatment in my own rural hometown when I went for a visit, because it was the only clinic serving several neighboring towns. When I used the facility, I discovered that I was one of the lucky ones, because I had a vehicle and was able to drive myself to and from treatment. Many of the patients from this community relied on others to drive them, because transportation services were limited to nonexistent. The lack of multiple dialysis units forced people who were unable to receive a treatment time to travel distances of 50 miles or more for care.
Weaknesses
Considering limitations of this study, the sample size was small. Scaling this intervention to serve a larger patient base may reveal challenges or barriers that may not be considered. Another area for improvement may be use of technology. Technology has improved patient care through different avenues, such as telemedicine and social media. The use of motivational messaging among the Zuni community indicated the importance of keeping patients engaged and encouraged. With access as a major concern in rural communities, technology may aid in reaching the hard to reach and most vulnerable. Technology could possibly be used to increase the sample size and expanded to assist patients with basic health care needs in reducing travel.
Patient Perspective
Managing kidney disease can be a daunting task, with the important laboratory numbers, medication regime, dietary needs, and multiple health specialist visits. Minority patients often lack basic needs, such as finances, transportation, and social support from family, making it a challenge to manage care. Living in a rural location in addition to these factors can even become life threatening if quality care cannot be obtained. The design of this intervention was refreshing and encouraging, because the culture of patients is a critical component for quality health care. As individuals lose their good health, they sometimes feel like they have also lost their value. Patients need to be heard. They desire to be a part of the solution when it comes to their medical care. This small-sized study had an enormous effect on the health of a vulnerable community by simply adding the seats at the table for the people whose lives will depend on the outcome of the intervention.
Disclosures
None.
Footnotes
Published online ahead of print. Publication date available at www.cjasn.org.
See related editorial, “Novel Models for Health Care Delivery for CKD for Disadvantaged Populations,” and article, “Home-Based Kidney Care, Patient Activation, and Risk Factors for CKD Progression in Zuni Indians: A Randomized, Controlled Clinical Trial,” on pages 1779–1780 and 1801–1809, respectively.
- Copyright © 2018 by the American Society of Nephrology