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.

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.

Proceedings of a Workshop to Promote Community Health Worker Interventions in Nephrology.

ABSTRACT: Latinx populations face a higher burden of kidney failure and associated negative outcomes compared with non-Latinx White populations, despite sharing a similar prevalence of CKD. Community health worker (CHW) interventions have been shown to improve outcomes for Latinx individuals, but they are largely underutilized in kidney disease. We convened a workshop of four ongoing kidney disease CHW programs to identify successes, challenges, potential solutions, and needed research to promote CHW programs for Latinx individuals with kidney disease. Key points from the workshop and recommendations for intervention and research are highlighted. Facilitators of program success included prioritizing trust-building with participants, enabling participants to determine what aspects of the intervention were needed, providing participants with tools to help themselves and others after the intervention, and taking a trauma-informed approach to relationships. Challenges included persistent systemic barriers despite successful care navigation and low recruitment and retention. Research is needed to capture the effect of CHW interventions on outcomes and to determine how to implement CHW interventions for people with kidney disease nationwide.

Barriers in Healthcare for Latinx Patients with Limited English Proficiency-a Narrative Review.

Latinx (includes Hispanics and is the non-gendered term for Latino/Latina which is a person of Latin American origin or descent) constitutes the largest racial and ethnic minority group in the United States (US). Many members of this group report limited English proficiency, experience discrimination, feel distrust in the healthcare setting, and face poorer health outcomes than non-Latinx Whites. As healthcare systems assess internal structures of care, understanding the experiences of Latinx patients may inform strategies to improve care. This narrative review describes studies that assessed the experiences of Latinx patients with limited English proficiency (LEP) in the inpatient and outpatient settings in the US. We searched PubMed for studies published between January 1, 1990, and March 2021. We reviewed all citations and available abstracts (n = 429). We classified study titles (n = 156) as warranting detailed consideration of the original article. Limited English proficiency is a well-documented challenge reported by Latinx patients seeking care in the outpatient setting, resulting in mistrust of healthcare organizations and clinicians. The effects of LEP overlap substantially with challenges related to patients' immigration status, cultural traditions, and socioeconomic needs. Use of professional interpretation rather than ad hoc interpretation improves trust and satisfaction. There is no consensus about the most effective mode of delivering professional interpretation (in person, telephonic, video conferencing), although rapid simultaneous telephone translation is a promising modality. Increasing awareness of the barriers to effective communication, improving skills in communicating through translators, and increasing the amount of time spent with patients may improve communication and trust more than structural changes like mode of translation or bedside rounding. Cultural fluency training, standardized language training for providers, and incentive pay for fluency are also deserving of further consideration.

A Model of Advocacy to Inform Action.

The need for effective advocacy on the part of health professionals has never been greater. The recent COVID-19 pandemic has made the connection between human health and social conditions clear, while highlighting the limitations of biomedical interventions to address those conditions. Efforts to increase the frequency and effectiveness of advocacy activities by health professionals have been hampered by the lack of a practical framework to define and develop advocacy competencies among trainees as well as to plan and execute advocacy activities. The authors of this article propose a framework which defines advocacy as occurring across three domains of influence (practice, community, and government) using three categories of advocacy skills (policy, communication, and relationships). When these skills are successfully applied in the appropriate domains of influence, the resulting change falls into three levels: individual, adjacent, and structural. The authors assert that this framework is immediately applicable to a broad variety of health professionals, educators, researchers, organizations, and professional societies as they individually and collectively seek to improve the health and well-being of those they care for.

Sources of Clinician Burnout in Providing Care for Underserved Patients in a Safety-Net Healthcare System.

BACKGROUND: Burnout among clinicians is common and can undermine quality of care, patient outcomes, and workforce preservation, but sources of burnout or protective factors unique to clinicians working in safety-net settings are less well understood. Understanding these clinician experiences may inform interventions to reduce burnout. OBJECTIVE: To describe clinician perspectives on sources of burnout in a safety-net healthcare system. DESIGN: Semi-structured interviews were conducted with clinicians from multiple disciplines who provided care at a safety-net healthcare system from October 2018 to January 2019. Transcripts were analyzed using thematic analysis. PARTICIPANTS: Forty clinicians (25 female and 15 male; mean [SD] age, 41 [9.1]) participated, including physicians, social workers, advanced practice providers, nurses, psychologists, physical and occupational therapists, and other healthcare professionals. MAIN OUTCOMES AND MEASURES: Themes and subthemes that reflected clinician experiences, burnout, and workload expectations. KEY RESULTS: Five themes emerged: limited resources (entrenched social injustices, brokenness of the US healthcare system, precarious discharge options, and "revolving door" readmissions), barriers to building trust with patients (chasm of communication, addressing fear and mistrust, and being exposed to threats), administrative requirements (criticism hampering meaningful care, assuming extra workloads, bureaucratic burden), compassion fatigue (confronting traumatic situations, persistent worry about patient safety and welfare, witnessing mistreatment and stigmatization, overextending and overinvesting, withdrawing and shutting down, blaming self and career crisis), and advocacy as a counterbalance to burnout (solidarity when helping underserved communities, fervent advocacy, and patient gratitude). CONCLUSIONS: Among clinicians who provide care in a safety-net healthcare system, sources of burnout included limited resources, barriers to building trust with patients, administrative requirements, and compassion fatigue, but clinicians remained driven by their desire to advocate for patients. Policy-level interventions which increase funding to safety-net healthcare systems to bolster existing resources and staffing, create peer-support and wellness programs, and support advocacy efforts may mitigate burnout.

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.

Qualitative analysis of stakeholder perspectives on engaging Latinx patients in kidney-related research.

BACKGROUND: Latinx individuals are disproportionally burdened by kidney diseases compared to non-Latinx White individuals and are underrepresented in kidney-related research. We aimed to describe stakeholder perspectives on Latinx patient engagement in kidney-related research. METHODS: We conducted a thematic analysis of two online moderated discussions and an interactive online survey with open-text responses involving participants (i.e. stakeholders), with personal and/or professional experiences with Latinx patients with kidney diseases and their families/caregivers. RESULTS: Among the eight stakeholders (Female:75%; Latinx ethnicity:88%), there were three physicians, one nurse, one patient with kidney disease who received a kidney transplant, one policy maker, one Doctor of Philosophy, and one executive director of a non-profit health organization. We identified five themes. The majority of themes and their respective subthemes (in parentheses) reflected barriers to engagement: Lack of personal relevance (unable to relate to research staff and marketing resources, and unclear benefit of research to self, family, and community); fear and vulnerability (immigration concerns, stigma with seeking care, skepticism of Western medicine); logistical and financial barriers (limited opportunities to enroll in clinical trials, out-of-pocket costs, transportation issues); and distrust and asymmetry of power (related to limited English proficiency or health literacy, and provider bias). The last theme centered on stimulating interest and establishing trust in the research process. CONCLUSIONS: To overcome barriers to engagement in kidney-related research and establish trust among potential Latinx research participants, stakeholders recommended employing cultural responsiveness and community-based strategies. These strategies can help identify local health priorities, enhance research recruitment and retention strategies, and establish partnerships that continue to elevate research endeavors aiming to enhance the health of Latinx individuals with kidney diseases.

Designing Interventions Addressing Structural Racism to Reduce Kidney Health Disparities: A Report from an NIDDK Workshop.

Structural racism embodies the many ways in which society fosters racial discrimination through "mutually reinforcing inequitable systems" that limit access to resources and opportunities that can promote health and well-being among marginalized communities. To achieve health equity, and kidney health equity more specifically, structural racism must be eliminated. In February 2022, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) convened the "Designing Interventions that Address Structural Racism to Reduce Kidney Health Disparities" workshop which was aimed at describing the mechanisms through which structural racism contributes to health and healthcare disparities for people along the continuum of kidney disease; and identifying actionable opportunities for interventional research focused on dismantling or addressing the effects of structural racism. Participants identified six domains as key targets for interventions and future research: 1) apply an anti-racism lens, 2) promote structural interventions, 3) target multiple levels, 4) promote effective community and stakeholder engagement, 5) improve data collection, and 6) advance health equity through new healthcare models. There exists an urgent need for research to develop, implement and evaluate interventions that address the unjust systems, policies, and laws that generate and perpetuate inequities in kidney health.

Designing Interventions Addressing Structural Racism to Reduce Kidney Health Disparities: A Report from a National Institute of Diabetes and Digestive and Kidney Diseases Workshop.

Structural racism embodies the many ways in which society fosters racial discrimination through "mutually reinforcing inequitable systems" that limit access to resources and opportunities that can promote health and well being among marginalized communities. To achieve health equity, and kidney health equity more specifically, structural racism must be eliminated. In February 2022, the National Institute of Diabetes and Digestive and Kidney Diseases convened the "Designing Interventions that Address Structural Racism to Reduce Kidney Health Disparities" workshop, which was aimed at describing the mechanisms through which structural racism contributes to health and health care disparities for people along the continuum of kidney disease and identifying actionable opportunities for interventional research focused on dismantling or addressing the effects of structural racism. Participants identified six domains as key targets for interventions and future research: (1) apply an antiracism lens, (2) promote structural interventions, (3) target multiple levels, (4) promote effective community and stakeholder engagement, (5) improve data collection, and (6) advance health equity through new health care models. There is an urgent need for research to develop, implement, and evaluate interventions that address the unjust systems, policies, and laws that generate and perpetuate inequities in kidney health.

Perspectives of patients, family members, health professionals and the public on the impact of COVID-19 on mental health.

BACKGROUND: The coronavirus (COVID-19) pandemic has seen a global surge in anxiety, depression, post-traumatic stress disorder (PTSD), and stress. AIMS: This study aimed to describe the perspectives of patients with COVID-19, their family, health professionals, and the general public on the impact of COVID-19 on mental health. METHODS: A secondary thematic analysis was conducted using data from the COVID-19 COS project. We extracted data on the perceived causes and impact of COVID-19 on mental health from an international survey and seven online consensus workshops. RESULTS: We identified four themes (with subthemes in parenthesis): anxiety amidst uncertainty (always on high alert, ebb and flow of recovery); anguish of a threatened future (intense frustration of a changed normality, facing loss of livelihood, trauma of ventilation, a troubling prognosis, confronting death); bearing responsibility for transmission (fear of spreading COVID-19 in public; overwhelming guilt of infecting a loved one); and suffering in isolation (severe solitude of quarantine, sick and alone, separation exacerbating grief). CONCLUSION: We found that the unpredictability of COVID-19, the fear of long-term health consequences, burden of guilt, and suffering in isolation profoundly impacted mental health. Clinical and public health interventions are needed to manage the psychological consequences arising from this pandemic.

Patient-reported outcomes and experiences in the transition of undocumented patients from emergency to scheduled hemodialysis.

Undocumented immigrants with kidney failure can only access dialysis after presenting critically ill to an emergency department in most states within the United States. How access to scheduled dialysis might improve or harm patient experience is currently unknown. To clarify this, we assessed patient reported outcomes and experiences of undocumented patients who transitioned from emergency to scheduled dialysis. Pre-post intervention interviews were conducted using a mixed-methods study (questionnaires and interviews) in a Colorado hospital. Measures included the Kidney Disease Quality of Life Short Form-36 (KDQOL SF-36), Edmonton Symptom Assessment System, Trust in Physician Scale, and CHOICE Satisfaction Scale. Interviews were evaluated using thematic analysis. Thirty patients participated, and 26 completed the post-transition interview (two participants died, two did not transition to scheduled dialysis). Following transition, patients significantly improved on all five KDQOL SF-36 subscales including 116% for burden of kidney disease, 42% for kidney disease effects, 27% for symptoms/problems, 23% for physical and 13% for mental health composite. Patients reported significant improvement in seven symptoms consisting of 100% for nausea, 57% for pain, 94% for appetite and shortness of breath, 87% for anxiety, 86% for depression, 65% for tiredness, and 60% for drowsiness. Trust and satisfaction with care were unchanged. Five identified themes corroborated patient-reported outcomes but indicated continuing challenges associated with anxiety about navigating changes in care, increased burden on family and employers, relief in receiving consistent care, immediate and remarkable health gains, and restoring hope and humanity. Thus, providing healthcare access to standard dialysis for undocumented immigrants improved quality of life and mitigated debilitating symptoms but brought new challenges in healthcare navigation as well as family burden and work.

Core Outcome Measures for Trials in People With Coronavirus Disease 2019: Respiratory Failure, Multiorgan Failure, Shortness of Breath, and Recovery.

OBJECTIVES: Respiratory failure, multiple organ failure, shortness of breath, recovery, and mortality have been identified as critically important core outcomes by more than 9300 patients, health professionals, and the public from 111 countries in the global coronavirus disease 2019 core outcome set initiative. The aim of this project was to establish the core outcome measures for these domains for trials in coronavirus disease 2019. DESIGN: Three online consensus workshops were convened to establish outcome measures for the four core domains of respiratory failure, multiple organ failure, shortness of breath, and recovery. SETTING: International. PATIENTS: About 130 participants (patients, public, and health professionals) from 17 countries attended the three workshops. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Respiratory failure, assessed by the need for respiratory support based on the World Health Organization Clinical Progression Scale, was considered pragmatic, objective, and with broad applicability to various clinical scenarios. The Sequential Organ Failure Assessment was recommended for multiple organ failure, because it was routinely used in trials and clinical care, well validated, and feasible. The Modified Medical Research Council measure for shortness of breath, with minor adaptations (recall period of 24 hr to capture daily fluctuations and inclusion of activities to ensure relevance and to capture the extreme severity of shortness of breath in people with coronavirus disease 2019), was regarded as fit for purpose for this indication. The recovery measure was developed de novo and defined as the absence of symptoms, resumption of usual daily activities, and return to the previous state of health prior to the illness, using a 5-point Likert scale, and was endorsed. CONCLUSIONS: The coronavirus disease 2019 core outcome set recommended core outcome measures have content validity and are considered the most feasible and acceptable among existing measures. Implementation of the core outcome measures in trials in coronavirus disease 2019 will ensure consistency and relevance of the evidence to inform decision-making and care of patients with coronavirus disease 2019.

International Survey to Establish Prioritized Outcomes for Trials in People With Coronavirus Disease 2019.

OBJECTIVES: There are over 4,000 trials conducted in people with coronavirus disease 2019. However, the variability of outcomes and the omission of patient-centered outcomes may diminish the impact of these trials on decision-making. The aim of this study was to generate a consensus-based, prioritized list of outcomes for coronavirus disease 2019 trials. DESIGN: In an online survey conducted in English, Chinese, Italian, Portuguese, and Spanish languages, adults with coronavirus disease 2019, their family members, health professionals, and the general public rated the importance of outcomes using a 9-point Likert scale (7-9, critical importance) and completed a Best-Worst Scale to estimate relative importance. Participant comments were analyzed thematically. SETTING: International. SUBJECTS: Adults 18 years old and over with confirmed or suspected coronavirus disease 2019, their family members, members of the general public, and health professionals (including clinicians, policy makers, regulators, funders, and researchers). INTERVENTIONS: None. MEASUREMENTS: None. MAIN RESULTS: In total, 9,289 participants from 111 countries (776 people with coronavirus disease 2019 or family members, 4,882 health professionals, and 3,631 members of the public) completed the survey. The four outcomes of highest priority for all three groups were: mortality, respiratory failure, pneumonia, and organ failure. Lung function, lung scarring, sepsis, shortness of breath, and oxygen level in the blood were common to the top 10 outcomes across all three groups (mean > 7.5, median ≥ 8, and > 70% of respondents rated the outcome as critically important). Patients/family members rated fatigue, anxiety, chest pain, muscle pain, gastrointestinal problems, and cardiovascular disease higher than health professionals. Four themes underpinned prioritization: fear of life-threatening, debilitating, and permanent consequences; addressing knowledge gaps; enabling preparedness and planning; and tolerable or infrequent outcomes. CONCLUSIONS: Life-threatening respiratory and other organ outcomes were consistently highly prioritized by all stakeholder groups. Patients/family members gave higher priority to many patient-reported outcomes compared with health professionals.

Core Outcomes Set for Trials in People With Coronavirus Disease 2019.

OBJECTIVES: The outcomes reported in trials in coronavirus disease 2019 are extremely heterogeneous and of uncertain patient relevance, limiting their applicability for clinical decision-making. The aim of this workshop was to establish a core outcomes set for trials in people with suspected or confirmed coronavirus disease 2019. DESIGN: Four international online multistakeholder consensus workshops were convened to discuss proposed core outcomes for trials in people with suspected or confirmed coronavirus disease 2019, informed by a survey involving 9,289 respondents from 111 countries. The transcripts were analyzed thematically. The workshop recommendations were used to finalize the core outcomes set. SETTING: International. SUBJECTS: Adults 18 years old and over with confirmed or suspected coronavirus disease 2019, their family members, members of the general public and health professionals (including clinicians, policy makers, regulators, funders, researchers). INTERVENTIONS: None. MEASUREMENTS: None. MAIN RESULTS: Six themes were identified. "Responding to the critical and acute health crisis" reflected the immediate focus on saving lives and preventing life-threatening complications that underpinned the high prioritization of mortality, respiratory failure, and multiple organ failure. "Capturing different settings of care" highlighted the need to minimize the burden on hospitals and to acknowledge outcomes in community settings. "Encompassing the full trajectory and severity of disease" was addressing longer term impacts and the full spectrum of illness (e.g. shortness of breath and recovery). "Distinguishing overlap, correlation and collinearity" meant recognizing that symptoms such as shortness of breath had distinct value and minimizing overlap (e.g. lung function and pneumonia were on the continuum toward respiratory failure). "Recognizing adverse events" refers to the potential harms of new and evolving interventions. "Being cognizant of family and psychosocial wellbeing" reflected the pervasive impacts of coronavirus disease 2019. CONCLUSIONS: Mortality, respiratory failure, multiple organ failure, shortness of breath, and recovery are critically important outcomes to be consistently reported in coronavirus disease 2019 trials.

Patient Navigation: Addressing Social Challenges in Dialysis Patients.

Members of racial and ethnic minority groups make up nearly 50% of US patients with end-stage kidney disease and face a disproportionate burden of socioeconomic challenges (ie, low income, job insecurity, low educational attainment, housing instability, and communication challenges) compared with non-Hispanic whites. Patients with end-stage kidney disease who face social challenges often have poor patient-centered and clinical outcomes. These challenges may have a negative impact on quality-of-care performance measures for dialysis facilities caring for primarily minority and low-income patients. One path toward improving outcomes for this group is to develop culturally tailored interventions that provide individualized support, potentially improving patient-centered, clinical, and health system outcomes by addressing social challenges. One such approach is using community-based culturally and linguistically concordant patient navigators, who can serve as a bridge between the patient and the health care system. Evidence points to the effectiveness of patient navigators in the provision of cancer care and, to a lesser extent, caring for people with chronic kidney disease and those who have undergone kidney transplantation. However, little is known about the effectiveness of patient navigators in the care of patients with kidney failure receiving dialysis, who experience a number of remediable social challenges.

The Experience of Primary Caregivers of Undocumented Immigrants with End-Stage Kidney Disease that Rely on Emergency-Only Hemodialysis.

BACKGROUND: Undocumented immigrants with end-stage kidney disease (ESKD) who rely on emergency-only hemodialysis (dialysis only after an emergency department evaluation) face psychosocial distress. Emergency-only hemodialysis (EOHD) is likely burdensome for primary caregivers as well. OBJECTIVE: To understand the experience of primary caregivers of undocumented immigrants with ESKD who rely on emergency-only hemodialysis. DESIGN, SETTING, AND PARTICIPANTS: A qualitative, semi-structured interview study to assess the experiences of primary caregivers of undocumented immigrants with ESKD at a safety-net hospital in Denver, Colorado from June 28 to November 15, 2018. Applied thematic analysis was used to analyze interviews. MAIN OUTCOMES AND MEASURES: Themes and subthemes. RESULTS: Twenty primary caregiver participants had a mean (SD) age of 46 (17), 13 (65%) were female, 7 (35%) were in an adult child caregiver role, and 13 (65%) were spouses. Five themes and 17 subthemes (in parentheses) were identified: (1) Caregiver role (providing emotional, physical, and economic support, advocacy and care navigation), (2) Caregiver burden (anxiety related to patient and personal death, emotional exhaustion and personal illness, struggle with finances, self-care and redefining relationship), (3) Unpredictable EOHD (acute episodes of illness that trigger emergency, stress when patient is denied dialysis, impact on work and sleep, and emotional relief after a session of EOHD), (4) Effect on children (dropping out or missing school, psychosocial distress, children assuming caregiver responsibilities, and juggling multi-generational caregiving of children), (5) Faith and appreciation (comfort in God and appreciation of healthcare). CONCLUSIONS AND RELEVANCE: Caregivers of undocumented immigrants with ESKD who rely upon EOHD experience caregiver burden and distress. The impact of EOHD on caregivers should be considered when assessing the consequences of excluding undocumented immigrants from public insurance programs.

Disproportionate Incidence of COVID-19 Infection, Hospitalizations, and Deaths Among Persons Identifying as Hispanic or Latino - Denver, Colorado March-October 2020.

Persons identifying as Hispanic or Latino (Hispanic) represent the second largest racial/ethnic group in the United States (1), yet understanding of the impact of coronavirus disease 2019 (COVID-19) in this population is limited. To evaluate COVID-19 health disparities in the community and inform public health, health system, and community-based interventions, local public health authorities analyzed the sociodemographic characteristics of persons who were diagnosed, hospitalized, and who died with COVID-19 in Denver, Colorado. During the first 7 months of the COVID-19 epidemic in Denver (March 6-October 6, 2020) the majority of adult COVID-19 cases (54.8%), hospitalizations (62.1%), and deaths (51.2%) were among persons identifying as Hispanic, more than double the proportion of Hispanic adults in the Denver community (24.9%) (1). Systemic drivers that influence how Hispanic persons live and work increase their exposure risks: compared with non-Hispanic persons, Hispanic persons with COVID-19 in Denver reported larger household sizes and were more likely to report known exposures to household and close contacts with COVID-19, working in an essential industry, and working while ill. Reducing the disproportionate incidence of COVID-19 morbidity and mortality among Hispanic persons will require implementation of strategies that address upstream social and environmental factors that contribute to an increased risk for both infection and transmission and that facilitate improved access to culturally congruent care.

Immigration status and end-stage kidney disease: Role of policy and access to care.

Immigration status is an important mitigating factor in determining the provision of dialysis and kidney-related care. Immigrants make up the largest uninsured group in the country. For immigrants with end-stage kidney disease (ESKD), dialysis access varies by insurance type and by state, leading to great variability in the availability of kidney care. In some states, undocumented immigrants may only qualify for hemodialysis when critically ill (emergency hemodialysis), which is associated with higher mortality, hospital length of stay, and cost, in addition to an emotional burden on patients, their caregivers, and healthcare professionals. Barriers to effective care for immigrants with ESKD include immigration status, insurance access, and availability of pre-end stage kidney disease care, vascular access, and transplant. Effective strategies for improving dialysis care for immigrants include advocacy at the state and federal level, broadening definitions under Emergency Medicaid, and improving benefits for home therapies and transplantation options.

Barriers to providing optimal dialysis care for undocumented immigrants: Policy challenges and solutions.

Access to hemodialysis for undocumented immigrants with end stage renal disease (ESRD) is widely variable across the United States and highly dependent upon state policy. Some states have enacted policies to provide coverage for standard dialysis to undocumented immigrants, while other states do not provide coverage. Patients living in some states which do not provide coverage rely on emergency federal coverage through the Emergency Medical Treatment and Active Labor Act. However, this act requires that patients present with an acute, life-threatening condition in order to receive dialysis, which is then referred to as "emergency-only hemodialysis" (EoHD). Because EoHD requires patients to present in life-threatening condition, patients who rely on EoHD suffer from debilitating physical symptoms and psychosocial distress. Undocumented immigrants who receive EoHD also have staggeringly higher mortality rates than those who receive standard hemodialysis. Moreover, in comparison with standard dialysis, EoHD results in greater health care utilization and higher health care costs. Therefore, EoHD represents a very low value care practice, providing substandard care at a greater cost. Policy change is urgently needed to provide undocumented immigrants with ESRD access to the standard of care; that is, three-times weekly standard hemodialysis or peritoneal dialysis.