Centering marginalized voices in advocacy for equitable policy change in kidney disease.

PURPOSE OF REVIEW: Inequities in kidney disease are a result of differences in healthcare access and inequitable structural policies that lead to downstream social challenges. An individual with kidney disease sits at the intersection of a variety of governmental and institutional policies that directly affect their access to kidney healthcare and different care delivery models. However, their voice in policy change is often neglected by stakeholders with more structural power. Marginalized individuals with kidney disease are disproportionately affected by kidney disease and inequitable policies can further these health disparities. The review aims to describe how marginalized individuals can be centered in research and lead in advocacy efforts to promote equitable policy change. RECENT FINDINGS: The marginalized patient voice is critical in advocacy to promote equitable policy change. We discuss examples illustrating research and advocacy methods which center and partner with marginalized communities to catalyze effective policy interventions. SUMMARY: Centralizing the patient voice when engaging in advocacy can identify and contextualize the effects of inequitable public policy and improve advocacy efforts.

The Transplant Experience for Undocumented Immigrant Patients Formerly Receiving Emergency Dialysis and Caregivers.

Importance: Individuals of undocumented immigration status with kidney failure face barriers to receiving transplants due to lack of health insurance despite no regulatory barriers. Little is known about the perspectives on kidney transplant among individuals with undocumented immigration status with kidney failure who relied on emergency hemodialysis. Objective: To examine the overall experiences of transplant among transplant recipients of undocumented immigration status who previously relied on emergency hemodialysis and their family caregivers. Design, Setting, and Participants: In this qualitative study, semistructured 1-to-1 interviews were conducted with transplant recipients who had previously received emergency hemodialysis and transitioned to scheduled dialysis and their primary caregivers living in Denver, Colorado, between May 1, 2022, and March 31, 2023, in English or Spanish. Main Outcomes and Measures: Themes and subthemes regarding the experience of transplant as an undocumented immigrant previously receiving emergency hemodialysis were identified. Interview transcripts were translated, deidentified, and then analyzed using thematic analysis. Results: A total of 25 participants including 15 transplant recipients (5 [33.3%] female and 10 [66.7%] male; mean [SD] age, 49.5 [9.8] years) and 10 caregivers (7 [70.0%] female and 3 [30.0%] male; mean [SD] age, 44.5 [22.3] years) participated. Six themes were reported: limited kidney replacement therapy education while receiving emergency hemodialysis (lack of awareness of kidney disease and treatment options and discriminatory kidney replacement therapy education due to immigration status), hope for transplant once receiving scheduled dialysis (prospect of transplant through scheduled dialysis, family and quality of life as transplant motivators), transplant education and health insurance after transition to scheduled dialysis (inadequate transplant education in dialysis clinic, peer-to-peer transplant education, and peer-to-peer communication regarding availability of private health insurance), uncertainty during transplant evaluation (difficulty navigating the evaluation and wait-listing process, lack of communication regarding timeline, and concern for family limiting living donation), posttransplant improvements (ability to work after transplant is critically important given immigration status, autonomy with transplant improves mental health, and vigilance in maintaining transplant), and transplant facilitators (self-advocacy, spirituality and optimism, and peer support). Conclusions and Relevance: This qualitative study of transplant recipients of undocumented immigration status and their caregivers found that individuals formerly receiving emergency dialysis are excluded from education and access to transplant, and peer support throughout the transplant process helped with education and motivation to pursue transplant. These findings may be used to implement improvements in access to support and education for patients of undocumented immigration status with kidney failure, especially in areas where scheduled dialysis is not available.

Barriers to home dialysis and kidney transplantation for socially disadvantaged individuals.

PURPOSE OF REVIEW: People with kidney disease facing social disadvantage have multiple barriers to quality kidney care. The aim of this review is to summarize the patient, clinician, and system wide factors that impact access to quality kidney care and discuss potential solutions to improve outcomes for socially disadvantaged people with kidney disease. RECENT FINDINGS: Patient level factors such as poverty, insurance, and employment affect access to care, and low health literacy and kidney disease awareness can affect engagement with care. Clinician level factors include lack of early nephrology referral, limited education of clinicians in home dialysis and transplantation, and poor patient-physician communication. System-level factors such as lack of predialysis care and adequate health insurance can affect timely access to care. Neighborhood level socioeconomic factors, and lack of inclusion of these factors into public policy payment models, can affect ability to access care. Moreover, the effects of structural racism and discrimination nay negatively affect the kidney care experience for racially and ethnically minoritized individuals. SUMMARY: Patient, clinician, and system level factors affect access to and engagement in quality kidney care. Multilevel solutions are critical to achieving equitable care for all affected by kidney disease.

Differences in Outcomes by Place of Origin among Hispanic Patients with Kidney Failure.

SIGNIFICANCE STATEMENT: Hispanic patients are known to have a higher risk of kidney failure and lower rates of home dialysis use and kidney transplantation than non-Hispanic White patients. However, it is unknown whether these outcomes differ within the Hispanic community, which is heterogeneous in its members' places of origins. Using United States Renal Data System data, the authors found similar adjusted rates of home dialysis use for patients originating from places outside the United States and US-born Hispanic patients, whereas the adjusted risk of mortality and likelihood of transplantation differed depending on place (country or territory) of origin. Understanding the heterogeneity in kidney disease outcomes and treatment within the Hispanic community is crucial in designing interventions and implementation strategies to ensure that Hispanic individuals with kidney failure have equitable access to care. BACKGROUND: Compared with non-Hispanic White groups, Hispanic individuals have a higher risk of kidney failure yet lower rates of living donor transplantation and home dialysis. However, how home dialysis, mortality, and transplantation vary within the Hispanic community depending on patients' place of origin is unclear. METHODS: We identified adult Hispanic patients from the United States Renal Data System who initiated dialysis in 2009-2017. Primary exposure was country or territory of origin (the United States, Mexico, US-Puerto Rico, and other countries). We used logistic regression to estimate differences in odds of initiating home dialysis and competing risk models to estimate subdistribution hazard ratios (SHR) of mortality and kidney transplantation. RESULTS: Of 137,039 patients, 44.4% were US-born, 30.9% were from Mexico, 12.9% were from US-Puerto Rico, and 11.8% were from other countries. Home dialysis rates were higher among US-born patients, but not significantly different after adjusting for demographic, medical, socioeconomic, and facility-level factors. Adjusted mortality risk was higher for individuals from US-Puerto Rico (SHR, 1.04; 95% confidence interval [CI], 1.01 to 1.08) and lower for Mexico (SHR, 0.80; 95% CI, 0.78 to 0.81) and other countries (SHR, 0.83; 95% CI, 0.81 to 0.86) compared with US-born patients. The adjusted rate of transplantation for Mexican or US-Puerto Rican patients was similar to that of US-born patients but higher for those from other countries (SHR, 1.22; 95% CI, 1.15 to 1.30). CONCLUSIONS: Hispanic people from different places of origin have similar adjusted rates of home dialysis but different adjusted rates of mortality and kidney transplantation. Further research is needed to understand the mechanisms underlying these observed differences in outcomes.

Challenging Health Inequities in Incarceration: a Call for Equitable Care for Kidney Disease and Hypertension.

PURPOSE OF REVIEW: To review the current literature on care of hypertension and chronic kidney disease for people who are currently and formerly incarcerated, and to make recommendations for improving outcomes. RECENT FINDINGS: There is a growing body of literature describing care for kidney disease and hypertension for incarcerated and formerly incarcerated individuals that documents the provision of care itself, notably that many jails contract with private companies; the system is not designed to provide sustained, chronic disease care; and the transition from incarceration to community is fraught with gaps in care. However, deficiencies in data collection and regulation still limit our understanding of the quality of care provided in jails and prisons. Furthermore, more data is needed to understand the impact of structural racism in the criminal legal system on overall disparities in care for hypertension and kidney disease. Insurance coverage rates for people who were formerly incarcerated continue to be lower than the general population despite Medicaid expansion in many states. There is little recent data regarding kidney replacement therapy for this population despite known variation in dialysis modalities and transplant programs by state. Transitions clinics, which connect people who were formerly incarcerated with care in the community upon release, are growing and are important avenues by which to deliver care. People who are incarcerated are disproportionately affected by hypertension and kidney disease, yet data regarding the extent of these inequities and availability of quality care is lacking. More work is needed to understand the care of individuals with kidney disease and hypertension in prisons and to improve outcomes for these common chronic conditions. Both providing effective treatment of kidney disease and hypertension in prisons and jails and providing coordinated, quality transition to community care upon release represents an important opportunity for reform in care for a marginalized population.

Barriers and Facilitators to Home Dialysis Among Latinx Patients with Kidney Disease.

Importance: Latinx people have a high burden of kidney disease but are less likely to receive home dialysis compared to non-Latinx White people. The disparity in home dialysis therapy has not been completely explained by demographic, medical, or social factors. Objective: To understand the barriers and facilitators to home dialysis therapy experienced by Latinx individuals with kidney failure receiving home dialysis. Design, Setting, and Participants: This qualitative study used semistructured interviews with Latinx adults with kidney failure receiving home dialysis therapy in Denver, Colorado, and Houston, Texas, between November 2021 and March 2023. Patients were recruited from home dialysis clinics affiliated with academic medical centers. Of 39 individuals approached, 27 were included in the study. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis. Main Outcomes and Measures: Themes and subthemes regarding barriers and facilitators to home dialysis therapy. Results: A total of 27 Latinx adults (17 [63%] female and 10 [37%] male) with kidney failure who were receiving home dialysis participated. Themes and subthemes were identified, 3 related to challenges with home dialysis and 2 related to facilitators. Challenges to home dialysis included misinformation and immigration-related barriers to care (including cultural stigma of dialysis, misinformation regarding chronic disease care, and lack of health insurance due to immigration status), limited dialysis education (including lack of predialysis care, no-nephrologist education, and shared decision-making), and maintenance of home dialysis (including equipment issues, lifestyle restrictions, and anxiety about complications). Facilitators to home dialysis included improved lifestyle (including convenience, autonomy, physical symptoms, and dietary flexibility) and support (including family involvement, relationships with staff, self-efficacy, and language concordance). Conclusions and Relevance: Latinx participants in this study who were receiving home dialysis received misinformation and limited education regarding home dialysis, yet were engaged in self-advocacy and reported strong family and clinic support. These findings may inform new strategies aimed at improving access to home dialysis education and uptake for Latinx individuals with kidney disease.

Assessment of a Peer Support Group Intervention for Undocumented Latinx Immigrants With Kidney Failure.

Importance: Most undocumented immigrants with kidney failure rely on emergency dialysis (defined as dialysis after a patient presents as critically ill) and experience significant depression and anxiety and high mortality. Culturally and language-concordant peer support group interventions may be associated with reduced depression and anxiety and may provide emotional support. Objective: To investigate the feasibility and acceptability of a single-group peer support group intervention. Design, setting, and participants: This qualitative and single-group prospective study for undocumented immigrants with kidney failure receiving emergency dialysis was conducted in Denver, Colorado, from December 2017 to July 2018. The 6-month intervention included peer support group meetings in the hospital while participants were hospitalized for emergency dialysis. Data were analyzed from March to June 2022. Main outcomes and measures: To assess feasibility, the recruitment, retention, implementation, and delivery for the intervention were tracked. To measure acceptability, interviews were conducted with participants using a structured format. To assess the value of the peer support group intervention, themes and subthemes were identified from interviews with participants and group meetings. Results: Of 27 undocumented immigrants with kidney failure receiving emergency dialysis, 23 participants (9 females [39.1%] and 14 males [60.9%]; mean [SD] age, 47 [8] years) agreed to participate (recruitment rate, 85.2%). Among them, 5 individuals withdrew and did not attend meetings and 18 participants (retention rate, 78.3%) attended a mean of 6 of 12 meetings (50.0%). From interviews and meetings, 3 themes, with associated subthemes, were identified: camaraderie and emotional support from peers (subthemes: peer support is vital for people newly diagnosed with kidney failure, safe space to build relationships and share hardship with peers, hospital setting for peer support is ideal, solidarity to survive and change policy, and sustainability of the peer support group), solutions to improve care and resilience (subthemes: self-advocacy, self-motivation and optimism, kidney disease education, emotional support from peers caregivers, and faith), and emotional and physical aspects of receiving emergency dialysis (subthemes: psychosocial and physical distress, mixed experiences with language-concordant care, emotional exhaustion from end-of-life conversations, and gratitude for clinicians). Conclusions and relevance: This study found that peer support group intervention achieved feasibility and acceptability. The findings suggest that a peer support group may be a patient-centered strategy to build camaraderie and provide emotional support in kidney failure, especially for socially marginalized uninsured populations who report limited English proficiency.

Reducing disparities in kidney transplantation for Spanish-speaking patients through creation of a dedicated center.

INTRODUCTION: Hispanic Americans receive disproportionately fewer organ transplants than non-Hispanic whites. In 2018, the Hispanic Kidney Transplant Program (HKTP) was established as at the University of Colorado Hospital (UCH). The purpose of this quality improvement study was to examine the effect of this culturally sensitive program in reducing disparities in kidney transplantation. METHODS: We performed a mixed-methods analysis of data from 436 Spanish-speaking patients referred for transplant to UCH between 2015 and 2020. We compared outcomes for patients referred between 2015-2017 (n = 156) to those referred between 2018-2020 (n = 280). Semi-structured phone interviews were conducted with 6 patients per time period and with 6 nephrology providers in the Denver Metro Area. Patients and providers were asked to evaluate communication, transplant education, and overall experience. RESULTS: When comparing the two time periods, there was a significant increase in the percentage of patients being referred (79.5% increase, p-0.008) and evaluated for transplant (82.4% increase, p = 0.02) during 2018-2020. While the number of committee reviews and number waitlisted increased during 2018-2020, it did not reach statistical significance (82.9% increase, p = 0.37 and 79.5% increase, p = 0.75, respectively. During patient and provider interviews, we identified 4 themes reflecting participation in the HKTP: improved communication, enhanced patient education, improved experience and areas for advancement. Overall, patients and providers reported a positive experience with the HKTP and noted improved patient understanding of the transplantation process. CONCLUSIONS: The establishment of the HKTP is associated with a significant increase in Spanish-speaking Hispanic patients being referred and evaluated for kidney transplantation.