Why Am I on Dialysis? Gaps in Rural Chronic Kidney Disease Care in Central California

Patient uncertainty regarding the cause of their kidney disease highlights a persistent gap in kidney care. We are conducting a structured-interview study in dialysis facilities throughout Central California, a region with among the highest incidence of end-stage kidney disease (ESKD) in the United States (U.S.)¹. Our team has repeatedly confronted this heartbreaking reality: many patients do not know the cause of their kidney disease. They altered their lives to accommodate a major medical burden yet are left without an understanding of ‘why’ they face this challenge. As one participant shared during our interview: “I would like to know why I have kidney disease. The doctors did not tell me.” Echoing this sentiment, another reflected: “Doctors should be asking more questions to get to the root cause.” A third patient expressed: “The doctors tell you your kidneys are not good anymore, but not sure why.”

Uncertainty about cause of kidney disease was a central theme in a meta-synthesis of ten qualitative studies among patients with kidney disease worldwide, in which patients expressed a need for more information about their diagnosis from health professionals.² This problem is likely widespread in many U.S. states, among which California has the lowest probability of pre-dialysis care.³ In our work, we were struck by the frequency and emotional weight of this concern as expressed by patients in our study population. Three reasons may underlie why patients with kidney disease across the U.S. may not understand its cause: delayed care, insufficient use of diagnostic modalities, and communication gaps.

First, patients may reach nephrology care late in the disease course—the classic “crash onto dialysis.” According to the United States Renal Data System, only 12% of Medicaid beneficiaries (age 18–64 years) and 41% of Medicare beneficiaries (age ≥66 years) with stage 5 chronic kidney disease (CKD) received care from a nephrologist.¹ Second, diagnostic modalities are underutilized: 44% of Medicare beneficiaries with CKD received urine protein testing between 2021–2022; among those without hypertension or diabetes, only 20% were tested.¹

Diagnostic uncertainty extends beyond access to nephrology care. Even when patients reach nephrology care at earlier stages, definitive kidney biopsy-based diagnoses could be infrequent, since a lack of standardized guidelines contributes to variability in nephrologists’ clinical decision making. Furthermore, identifying the specific cause may not have been part of treatment planning, since the field had a limited toolbox of therapeutics until recently.

Finally, nephrologists may lack the opportunity to establish a longitudinal relationship that engenders productive communication, given the workforce shortage.^1,4 Patients may need time and repeated reinforcement to develop a shared understanding of disease etiology. Qualitative interviews by Lissanu et al. suggest that patient willingness to accept a diseased status influences their readiness to receive disease-specific information.⁵ Longer-term pre-dialysis relationships with nephrologists may help foster better disease-status acceptance.

All of these factors coalesce in Central California’s predominantly-agricultural Central Valley, spanning 20,000 square miles and sixteen counties. Many counties are predominantly Hispanic; in 2024, over half of residents in Tulare, Fresno, and Kern counties identified as Hispanic or Latino.⁶ Farmworkers—many of whom are non-English speakers and socially disadvantaged— are heavily represented in the region, making them an especially relevant patient demographic when studying CKD in the area. The 2015–2019 National Agricultural Workers Survey found that the average level of formal education completed by California farmworkers was eighth grade and the mean household income was between $20,000 and $24,999.⁷

Several Central California counties are classified by the U.S. Department of Health and Human Services as “Medically Underserved Areas” (Figure 1).⁸ In these areas, federally-funded centers attempt to fill care gaps, but lack well integrated referral pathways. The California Department of Water Resources classified 123 San Joaquin Valley communities as disadvantaged. Although formal data are unavailable, estimates suggest Bakersfield and Fresno–two of the largest Central California cities – are respectively served by 5 and 6 nephrologists per 100,000 residents^4,6, respectively, whereas two Bay Area cities, Berkeley and Palo Alto, are served by 196 and 281 nephrologists per 100,000 residents, respectively.⁴

Figure 1: Federally Designated Medically Underserved Areas in California.

There are 48 Census-Designated MUAs across the 16 Central Valley counties and the six Central Coast counties. The 2020 U.S. Census data estimated the population of these two regions at approximately nine million. Meanwhile, the relatively more affluent Bay Area contains 18 MUAs across its nine counties, with a population of approximately eight million. Thus, a greater proportion of the Central Valley and Central Coast population lives in a MUA. Abbreviations: MUA – Medically Underserved Area

In our work with patients receiving dialysis (age 18–60 years) in Central California, we are employing a structured questionnaire to elicit occupational, residential, and health care histories, and their experiences living with kidney disease. To help surface their perspectives in their own words, we asked an open-ended question: What topic related to health should doctors be studying to improve the lives of people in the Central Valley on dialysis? The responses—often deeply personal and reflective—had a central theme: “Why am I on dialysis?”

Overall, patients repeatedly expressed a desire to better understand the cause of their kidney failure and for stronger preventative measures. Although medical charts often listed diabetes or hypertension as the etiology, many patients disagreed or expressed confusion, instead attributing kidney disease to external factors, such as medications or past jobs. Many also voiced concerns about pesticide use and water contamination, noting the striking number of field and factory workers on dialysis.

What strategies can improve patients’ understanding of disease etiology? A sudden influx of nephrologists to increase access to pre-dialysis care in the region is unlikely. We propose two strategies tailored to the Central Valley: patient-centered research and community-based stakeholder collaborations.

First, leveraging patient-centered research will enhance our understanding of relevant risk factors for kidney disease and identify targeted interventions aligned with patients’ health priorities. Patient-centered research can identify effective methods of communication: people living with the disease can best inform how we communicate etiology to others affected in their community.

While multidisciplinary teams of dialysis nurses, dieticians, and social workers support patients receiving dialysis, current counseling maintains an overriding focus on diet and medication adherence. These efforts could be more effective if they prioritized patient-expressed information needs.

Second, regional partnerships with organizations with influential advocacy networks or regulatory authority could raise awareness about kidney health, and establish care pathways to enable early detection, increasing the likelihood of identifying kidney disease cause. These include the California Farmworker Foundation, United Farm Workers Foundation, Central Valley Health Policy Institute, and California Division of Occupational Safety and Health.

In the context of novel treatments that slow disease progression, screening for kidney disease could be valuable in high-prevalence regions such as Central California.⁹ Engaging on-the-ground community organizations can enhance health literacy, support collaborative disease management, and encourage early detection.

Nephrologists could partner with federally-funded clinics that operate outside larger healthcare systems and are primarily staffed by primary care physicians. Such collaborations can streamline referrals, improve record sharing, and ensure comprehensive kidney care.

Our project on ESKD in Central California spotlights the need for patient voices in setting research and health policy agendas related to kidney disease. Initiatives such as the Kidney Precision Medicine Project have admirably incorporated patient perspectives; we must extend this approach to socioeconomically and geographically marginalized settings.¹⁰

We found that patients on dialysis in Central California expressed frustration about their uncertainty regarding the cause of their kidney disease. While not unique to the region, this patient-expressed uncertainty may be magnified by fragmented healthcare systems, limited pre-dialysis care, and socioeconomic barriers. Without clarity on etiology, patients face fewer opportunities for prevention, and reduced engagement in management. Addressing this gap requires patient-centered research, culturally tailored education, and community partnerships to improve early detection and communication of cause.