Addressing Housing Issues Among People with Kidney Disease: Importance, Challenges and Recommendations

Abstract

Kidney disease disproportionately impacts people with low socioeconomic status, and low socioeconomic status is associated with worse outcomes for people with kidney disease. Unstable housing, which includes housing insecurity and homelessness, is increasing due to rising housing costs. There is mounting evidence that unstable housing and other health-related social needs are partially driving worse outcomes for people with low socioeconomic status. In this perspective, we consider challenges to addressing housing for people with kidney disease, such as difficulty with identification of those with unstable housing, strict eligibility criteria for housing support, inadequate supply of affordable housing, and flaws in communities’ prioritization of affordable housing. We discuss ways to tailor management for people experiencing unstable housing with kidney disease, and the importance of addressing safety, trauma, and emotional concerns as a part of care. We identify opportunities for the nephrology community to surmount challenges through increased screening, investment in workforce dedicated to community resource navigation, advocacy for investment in affordable housing, restructuring of communities’ prioritization of affordable housing, and conducting needed research. Identifying and addressing housing needs among people with kidney disease is critical to eliminating kidney health disparities.

INTRODUCTION

The incidence of kidney failure is higher for Black, Hispanic/Latine, Native American and Asian/Pacific Island populations compared to White individuals, and people with kidney failure and low socioeconomic status experience increased risk of mortality.^{1 2} Unstable housing disproportionately impacts the same populations, and is increasing in the setting of rising housing costs.³ There is mounting evidence that health-related social needs contribute to kidney health disparities.⁴ Health-related social needs are factors that affect an individual’s ability to maintain their health and wellbeing, and unstable housing is perhaps the most difficult to address.⁵ The prevalence of unstable housing among people with kidney disease is unknown.

In the general population, homelessness is associated with higher mortality, hospitalizations and healthcare costs.^{4 6 7} Housing initiatives in the general population have been successful at reducing homelessness, healthcare costs, and acute care utilization (Box).^8–11 For people with kidney failure experiencing unstable housing, obtaining a home could theoretically increase uptake of home dialysis modalities and kidney transplantation.¹² There is impetus to address unstable housing for people with kidney disease, but barriers to effectively do so remain.¹³ We consider challenges to addressing unstable housing for individuals with kidney disease in the United States, and highlight potential solutions and necessary action from the nephrology community (Table 1).

Box:

Key Housing Terms and Definitions

Term	Definition
Homelessness26 27	• Lack of a fixed, adequate nighttime residence, or living in a place not designed for human habitation
Housing Insecurity3	• Variably defined, but refers to housing that is overcrowded, high cost (>30-50% of income) or unsafe
Continuum of Care30	• System of housing services designed to address homelessness in a community • Responsible for tracking homelessness and utilization of housing programs • Establishes “Coordinated Entry” protocol in a community
Homeless Management Information System60	• Local data system that contains person-level data on utilization of housing services
Permanent Supportive Housing61	• Provide indefinite rental assistance combined with supportive services
Housing choice voucher62	• Rental assistance for individuals/families considered very low-income, elderly and people with disabilities
Rapid rehousing49 50	• Time-limited financial assistance and targeted supportive services for individuals/families experiencing homelessness • Use a “housing first” approach with few eligibility restrictions
Emergency shelter	• Provide temporary shelter for people experiencing homelessness
Transitional housing63	• Provide time-limited shelter (longer than emergency shelters) and often include intensive support services and assistance establishing permanent housing
Medical respite care51 64 65	• Provide temporary shelter for people recently discharged from medical facilities who are too ill to return to unsheltered conditions

Table 1.

Challenges to addressing unstable housing for people with kidney disease and recommendations to consider.

Challenges	Recommendations
Challenge 1: Unstable housing is difficult to identify.	• Increase screening for past, current or imminent risk of housing issues at various contact points, and add housing questions to required clinical documentation • Discuss housing and other health-related social needs with all patients as components of treatment plans
Challenge 2: Unstable housing fragments care.	• Bundle lab and clinic visits, and consider use of telemedicine to increase consistency in contact • Simplify medication regimens, dose medications at dialysis, and avoid medications that require refrigeration or frequent dosing • Consider counseling on kidney replacement therapy and vascular access planning early due to anticipated gaps in care • Provide trauma-informed care and prioritize patients’ mental health and physical safety • Coordinate with social work to facilitate connection with community resources and frequent reassessment of changing housing needs
Challenge 3: There is inadequate supply of affordable housing.	• Advocate for development of more rapid rehousing vouchers and medical respite beds • Advocate to expand eligibility criteria of existing housing services to include people with high medical needs, such as those with kidney disease
Challenge 4: Housing services have strict eligibility criteria and are difficult to navigate.	• Invest in “bridge organizations” such as the AHC model57 to facilitate linkage with community resources • Invest in community health workers or multidisciplinary team members to facilitate navigation of community resources
Challenge 5: Community prioritization systems do not recognize disease severity.	• Advocate for coordinated entry systems to prioritize individuals who require stabilization in order to benefit from life-saving medical interventions (e.g. dialysis)
Challenge 6: Research is needed	• Assess the prevalence of unstable housing among people with kidney disease, and the impact of housing interventions on health outcomes and costs • Evaluate the potential impact and costs/savings of providing funds for patients to prevent homelessness or optimize housing to facilitate home dialysis or transplantation • Evaluate the utility of the AHC model for people with kidney disease

Abbreviations: CMS – Centers for Medicare & Medicaid Services, HUD – Department of Housing and Urban Development, AHC – Accountable Health Communities

Challenges to Addressing Unstable Housing

Challenge 1: Unstable housing is difficult to identify.

Unstable housing is often difficult for healthcare providers to recognize. Various screening questions have been developed to facilitate this.⁴ For example, the Veterans Health Administration began using the Homelessness Screening Clinical Reminder in 2012, which asks patients in outpatient clinics about their housing over the past two months and concern for housing issues in the upcoming two months.¹⁹ The Centers for Medicare & Medicaid Services (CMS) Accountable Health Communities (AHC) Health-related Social Needs Screening Tool housing question, which captures whether someone has a steady place to live in and whether they are worried about losing it in the future, has a sensitivity of 100% for detecting unstable housing among people on dialysis with low socioeconomic status.²⁰ However, how to best integrate screening into the medical setting is not clear. Questions remain about who should conduct screenings, how often, and what should be done with housing information.

Documentation of housing information is not uniform. An International Statistical Classification of Diseases (ICD) code for homelessness exists (Z59.0), although its use is not universal. Housing information in electronic medical records is often in free-text notes, and natural language processing systems that analyze free-text for housing status are being explored.²¹ However, ICD codes and natural language processing may miss nuanced housing issues (I.e. overcrowded or dangerous living conditions) that impact health, and their sensitivity and specificity have not been extensively studied.

Challenge 2: Unstable housing fragments care.

Unstable housing has the potential to impact nearly every aspect of medical care.^{12 15} Proper management of medications that require refrigeration (i.e. insulin) or frequent dosing (i.e. many antihypertensive agents and diuretics), may be difficult without available storage. Individuals might avoid taking diuretics due to inconsistent restroom access. Unstable housing is often accompanied by lack of access to food, which may prohibit adherence to sodium, potassium, phosphorus and fluid restrictions. Attendance of frequent appointments, dialysis sessions, or lab visits may not be possible due to frequent moves and inability to arrange transportation.¹⁶ Many individuals are lost to follow up, or inappropriately labeled “nonadherent.”⁴ These individuals may not receive counseling or vascular access planning when they transition to kidney replacement therapy due to inconsistent follow up.⁴ For people on dialysis, the requirement for regularity of treatment necessitates a stable home environment, and unstable housing often precludes use of home dialysis modalities or kidney transplantation.

Challenge 3: There is inadequate supply of affordable housing.

In a fundamental sense, the barrier to addressing housing needs is directly tied to the shortfall of affordable rental units available in the U.S. for those with extremely low income, by approximately 7.3 million units.²² The combination of unaffordability and instability of housing is a major driver, and addressing this problem is a critical facilitator to ending homelessness.²³ Less than a third (31%) of the extant affordable housing units are available to people who qualify for them.²⁴ Meanwhile 70% of the same low-income households spend more than half of their limited incomes on rent.²² An extensive survey by the U.S. Conference of Mayors showed that lack of affordable housing topped the list of causes of homelessness, ahead of: unemployment, poverty, low wages, and untreated mental illness and substance abuse.²⁵ Housing policies are largely developed outside the purview of the healthcare system, making it hard for healthcare providers to influence the increased funding needed to change this situation.

Challenge 4: Housing services have strict eligibility criteria and are difficult to navigate.

Many individuals do not qualify for housing programs despite experiencing unstable housing. Housing eligibility requirements are often narrowly defined by a diverse system of funding agencies and philanthropic organizations. The result is that people with kidney disease might not meet every or even any qualifications. For example, the largest provider of housing program funds, the Department of Housing and Urban Development, (HUD) does not recognize individuals who are doubled-up, or living with relatives or friends as formally homeless and eligible for the full range of services.²⁶ HUD does consider someone homeless if they are facing “imminent risk of homelessness,” but this requires verifiable documentation that a residence will be lost within 14 days with no subsequent residence identified or obtainable.²⁶ Permanent subsidies for housing, typically in the form of housing vouchers, are restricted to people who meet criteria for chronic homeless. Chronic homelessness is defined by HUD and involves a combination of documented disability (mental, behavioral, or physical), duration and frequency of homelessness.^{26 27}

Even if an individual qualifies for housing, they may not be able to obtain the supportive services (i.e. case management or mental health support) they need to transition from being homeless to stably housed. Existing housing programs provide rent or supportive services, but often not both in the same program. Applications for rental assistance programs are not always straightforward for renters in distress, and often require assistance or approval from landlords.²⁸ Existing housing services may not be able to meet the unique needs of people with kidney disease. For example, tiny homes communities with shared restroom facilities are a novel approach to affordable housing, but they often do not provide the requisite space for home dialysis supplies.²⁹

Challenge 5: Community prioritization systems do not recognize disease severity.

Every community in the United States has a coalition of agencies, known as a Continuum of Care (CoC), that is required to establish a system for assigning prioritization of housing resources in their community.³⁰ The prioritization system is known as “Coordinated Entry” or “Coordinated Assessment,” and there is minimal guidance on what should be considered in these systems.³⁰ Currently established prioritization algorithms often disadvantage people with the most severe or complex medical conditions, such as kidney disease, and may even exacerbate the historical and ongoing issues of inequity in housing placements.^{31 32} Many systems prioritize individuals based on the number of medical or mental health problems they report, and not the severity of disease or complexity within a single domain. Patients who engage in risk behaviors, demonstrate social vulnerabilities, victims of violence or other abuses, or experience mental health problems may accrue higher scores than a single disabling condition. Although many people with kidney disease have comorbidities, the distinction between physical ailments and major medical needs, like requiring dialysis, are not usually a consideration.

Challenge 6: Research is needed.

Evidence on the scope and nature of unstable housing among people with kidney disease is growing but remains limited (Table 2). Area deprivation has also been associated with risk of death and kidney disease progression.^33–35

Table 2.

Studies evaluating the influence of housing in the setting of kidney disease.

Study	Design	Participants and Setting	Exposure	Primary Outcome	Relevant Results
Hall17	Cohort	15,343 adults with CKD stages 3-5 who received ambulatory care during 1996-2005 from the Community Health Network of San Francisco	Housing for which a person had adequate resources and there were no time limits	Kidney failure or death	Homelessness was associated with increased risk of kidney failure or death. In subgroup analysis, this relationship was only evident in people without a history of substance abuse.
Maziarz66	Cohort	16,656 adults with CKD stages 3-5 who received ambulatory care during 1996-2005 from the Community Health Network of San Francisco	Housing for which a person had adequate resources and there were no time limits	Time to kidney failure	Incidence of kidney failure was higher for homeless adults. A prediction model that incorporated age, sex, race/ethnicity, eGFR, and dipstick proteinuria identified homeless individuals at highest risk for progression.
Novick67	Cohort	25,689 U.S. veterans with kidney failure who initiated dialysis between 2012 and 2018, attended a Veterans Health Administration outpatient clinic and completed a housing screen within 3-years before starting dialysis	Self-report of not having stable housing within the past 2-months, or having concerns about stable housing in the next 2-months	All-cause mortality	Unstable housing was associated with higher risk of all-cause mortality, and risks increased with age. In age-stratified analyses, unstable housing was associated with higher mortality among Veterans aged 75-85 years, but not other age groups.
Novick14	Cohort	1,262 adults with normal kidney function in the Healthy Aging in Neighborhoods of Diversity across the Life Span study	Self-report of inability to afford a suitable home	Incident albuminuria, reduced kidney function, and rapid kidney function decline	Unstable housing was associated with increased odds of albuminuria but not reduced kidney function or rapid kidney function decline.
Novick15	Cross-sectional	1,753 adults with normal kidney function in the Healthy Aging in Neighborhoods of Diversity across the Life Span study	Self-report of health-related social needs, defined as unstable housing (inability to afford a suitable home) and/or food insecurity	Achieving ≥4 kidney protective measures (blood pressure ≤130/80 mmHg, hemoglobin A1c level ≤ 7.5%, average 2-day salt intake <2,000 mg/d, BMI ≤ 25 kg/m2, self-report of physical activity during leisure time, and current nonsmoker)	Health-related social needs were associated with lower odds of achieving ≥4 kidney protective measures.
Novick16	Cross-sectional	355 adults with CKD stages 3-5 in the Healthy Aging in Neighborhoods of Diversity across the Life Span study	Self-report of inability to afford a suitable home or difficulty making rent/mortgage payments	Self-report of postponing needed medical care	Unstable housing was associated with increased risk of postponing needed medical care.
Sung68	Single-center case series	144 patients with kidney failure and unstable housing undergoing vascular access creation	Absence of a permanent residence or ≥3 addresses the year before vascular access operation	90-day readmission and mortality	Absence of a permanent residence was associated with increased odds of 90-day readmission, but unstable housing was not associated with mortality.
Taylor69	Cross sectional	305 adults receiving hemodialysis	Self-report of not having stable housing within the past 2-months, or having concerns about stable housing in the next 2-months	Individual and area-level sociodemographic characteristics	Eighteen percent reported unstable housing. Annual income <$25,000 and <high school education were associated with unstable housing, and unstable housing was not associated with substance use.
Crews70	Single-arm pilot	12 older adults with low socioeconomic status receiving hemodialysis with identified functional needs and home environmental barriers to social engagement	Intervention included 5-months of home visits with an occupational therapist, nurse, and a handyman to provide ≤$1,300 worth of repairs or home modifications	Feasibility and acceptability of the intervention, and change in disability (ADLs and IADLs), social support, and social network scores	The pilot demonstrated feasibility and acceptability, and all participants exhibited improvements in disability, social support and social network scores.
Walker45	Qualitative	25 adults with kidney failure receiving home dialysis	Community house hemodialysis	Semi-structured interviews on perspectives of the community house hemodialysis model	Community house hemodialysis reduced costs of home hemodialysis, and enabled use when home was not an option.

Abbreviations: CKD – chronic kidney disease, ADLs – activities of daily living, IADLs – instrumental activities of daily living, eGFR – estimated glomerular filtration rate.

Recommendations to Reduce Barriers to Housing

Recommendation 1: Improve identification through increased awareness and screening.

Awareness of housing stability as a contributor to health outcomes is critical, and discussing housing and other social determinants of health should be considered as part of treatment plans for all people with kidney disease.^{36 37} Increased screening for past, current, or imminent risk of homelessness and unstable housing at various contact points within the healthcare system would improve identification.⁴ For example, validated housing questions could be added to required documentation for all dialysis patients.²⁰ Screening for other markers of social risk, such as food insecurity or difficulty affording medications, could be considered alongside housing screening to identify co-occurring needs that impact care. In support of this, CMS is considering the establishment of an electronic clinical quality measure that captures hospitals’ social needs screening and referral practices as a quality metric.³⁸

Recommendation 2: Tailor care with consideration of housing related barriers.

There are no guidelines for the management of kidney disease in the setting of unstable housing, but several factors could be considered. Bundling of lab and clinic visits, and use of virtual or phone visits may improve consistency of contact, and promote trusting relationships with providers.⁴ Simplification of treatment regimens to prioritize long-acting medications, and avoidance of medications that require refrigeration or frequent dosing may improve adherence.⁴ Consider counseling about kidney replacement therapy or palliative care at every opportunity when patients attend visits, and plan vascular access earlier in the course of kidney disease due to anticipated gaps in care.⁴

Emotional distress, trauma, addiction, and violence are common among people experiencing unstable housing.^{4, 39} Inquiring about and prioritizing patients’ safety and mental health might improve care and relationships with providers. For patients with pain or addiction, counsel on the potential increased risk of overdose with opioids and gabapentinioids in the setting of kidney disease, and ensure access to naloxone.⁴⁰ Trauma informed care acknowledges patients’ past and present exposures to trauma, recognizes symptoms of trauma, avoids re-traumatization, and thereby enhances wellbeing and improves engagement.⁴¹ Trauma informed care could be considered with all people with kidney disease due to the prevalence of trauma in this population,^{42 43} but especially for those experiencing unstable housing. Close coordination with social work, case managers and community health workers to facilitate connection with housing, mental health, and other community resources is critical.⁴

For people on dialysis, dosing medications at dialysis may optimize adherence. Counseling patients on care of vascular access in the setting of extreme weather conditions, and providing patients with extra dressing supplies to ensure they are able to care for their access and prevent infection. For people receiving dialysis at home, close coordination with social work is critical to prevent unnecessarily transitioning to in-center dialysis in the event housing issues are temporary. If an individual’s living environment is not suitable for home dialysis, frequent reassessment of housing is needed, since unstable housing is sometimes transient, and they may be able to transition back to home dialysis or proceed with transplantation. Avoid stigmatizing language (i.e. “noncompliant”) that may prohibit future use of home dialysis modalities or kidney transplantation.⁴⁴ Nocturnal hemodialysis might be considered as a temporary place to sleep, but the dialysis facility is not a home, and therefore not a long-term solution to unstable housing.

The community house hemodialysis model in New Zealand provides a home where people who cannot perform dialysis in their own homes go to use home dialysis modalities.⁴⁵ This model could be considered to increase use of home dialysis among people with unstable housing.⁴⁶ What is considered an acceptable home environment for home dialysis may differ from country to country. Lessons can be learned from developing countries where housing issues may be more prominent, and yet the prevalence of peritoneal dialysis is increasing compared to a decrease in developed countries.⁴⁷

Recommendation 3: Advocate for more housing for people with high medical complexity.

Healthcare professionals have a powerful platform from which they can communicate to local, state, and federal policy makers, all of whom have a role in the funding, regulation, and/or approval of housing development in any given community. It is common for community objections to delay or derail affordable housing developments, particularly when hyperlocal groups protest (the so called “NIMBY” or “not in my back yard” effect).⁴⁸ The expert authority manifested by healthcare professionals, and clinicians in particular, could act as a counterbalance by helping local decision makers to consider the needs of more vulnerable members of a community in addition to the property owners.⁴⁸

Given the scarcity and extensive criteria required to receive a permanent supportive housing voucher,²⁷ advocates could focus their message on expanding rapid rehousing vouchers dedicated to those with the highest medical needs and which offer a transition to permanent subsidy programs.⁴⁹ Rapid rehousing programs help get people into housing programs faster while they wait for the more scarce units, giving them time to obtain documentation of disabilities and concurrently stabilize their medical conditions.^{49 50}

Advocating for the creation of more medical respite beds, and expanding eligibility of existing programs to include individuals with disabilities is critical to address unstable housing for people with high medical complexity (i.e. kidney failure).⁵¹ Medical respite is a relatively new model of care that reduces the need to discharge people who no longer need acute, tertiary-level care back into homelessness. Instead, eligible patients are discharged to temporary sub-acute care beds that, ideally, include wrap-around case management and housing services.⁵¹

Recommendation 4: Invest in community resource navigation.

Many healthcare settings have licensed social workers or case managers tasked with addressing patients’ social needs, but due to large caseloads, lack of time, and lack of available resources, they are often unable to do so.⁵² Increased investment in social work is needed. Alternative care models to facilitate community resource navigation outside the clinic are also being explored. For example, the Accountable Health Communities Model tested whether connecting CMS beneficiaries with community resources improved healthcare utilization outcomes and reduced costs.⁵³ This consisted of establishing 29 organizations that bridged healthcare and community service providers to simplify navigation.⁵³ Early findings were reductions in avoidable emergency department visits, but the bridge organizations were often unable to resolve social needs due to lack of transportation, ineligibility for services, long wait-lists and lack of resources.⁵³ Findings were more favorable for beneficiaries who were non-white and/or Hispanic/Latine and those with more than one social need.⁵³

Community health workers (CHW) are healthcare members that can work outside the clinic and address social needs by facilitating linkage with community resources and navigation of medical services.⁵⁴ CHW interventions in the general population have been shown to improve outpatient engagement, reduce hospitalizations and self-rated health.^{55 56} Among people with kidney disease, CHW interventions have been shown to facilitate navigation of transplant listing, and screening for living donor evaluation, but their ability to resolve social needs has not been studied.⁵⁴ For calendar year 2024, CMS is proposing to pay for Community Health Integration, Social Determinants of Health Risk Assessment, and Principal Illness Navigation services, which will cover community health workers, care navigators and peer support specialists. For people with kidney failure, investing in a CHW in dialysis facilities might improve the facility’s ability to track social needs and intervene as a part of care, as well as enable other staff members to focus on specialized patient tasks.⁵⁷

Recommendation 5: Advocate to restructure local housing prioritization systems.

Coordinated entry prioritization systems for housing support must be standardized and applied universally across an entire community.^{32 58} Beyond the requirement for standardization, there are very few stipulations on how a community prioritizes housing, with the caveat that they cannot violate federal laws like the Fair Housing Act (FHA).⁵⁹ While FHA prevents prioritization in any direction based on a protected class such as disability status, it can account for and raise the priority of specific medical conditions or specific healthcare needs.⁵⁹ Each community’s CoC likely has a forum where this conversation is taking place at the local level, in which interested agencies or community members can advocate for changes.⁵⁹

The nephrology community should involve themselves with the community-led processes put in place to establish or revise prioritization guidelines. There, they can propose a restructuring of these systems to account for medical needs. Clinicians who work with patients managing organ- or life-limiting disease, such as dialysis providers, might consider introducing a question to identify clients who require housing to acutely prevent a death associated with their exposure to homelessness. Alternatively, they might consider proposing the prioritization of people who require stabilization in order to successfully access and fully benefit from life-saving medical interventions (i.e. dialysis).

Recommendation 6: Conduct additional research.

Research is needed to determine the prevalence of unstable housing among people with kidney disease, tailor care for this population if they are experiencing unstable housing, and understand the impact of housing interventions on outcomes and healthcare costs. An economic evaluation is needed to determine the potential cost-saving benefit of providing funds for dialysis patients to prevent homelessness or optimize their living situations in preparation for home dialysis modalities and transplantation. Research is needed to understand the efficacy of the AHC model in addressing social needs for people with high medical complexity, such as those with kidney failure, and different racial and ethnic groups.

Conclusion

Housing is an important contributor to kidney health disparities. People with kidney failure may be disproportionately affected by decisions around housing prioritization under the current system in the United States. Addressing housing presents a number of challenges. However, the nephrology community must act by increasing screening for unstable housing, discussing patients’ living situations and adjusting care plans accordingly, and advocating for novel methods of resource navigation, investment in affordable housing and restructuring of housing prioritization systems. Identifying and addressing housing and other health-related social needs is critical to eliminating health disparities for people with kidney disease.