Race, Gender, and Socioeconomic Disparities in CKD in the United States
Keith Norris* and
Allen R. Nissenson
* Department of Medicine, Charles Drew University, and Department of Medicine, Geffen School of Medicine, University of California, Los Angeles, Los Angeles, California
Correspondence: Dr. Keith C. Norris, Charles Drew University of Medicine and Science, 1731 East 120th Street, Los Angeles, CA 90059. Phone: 323-323-5702; Fax: 323-357–3486; E-mail: keithnorris{at}cdrewu.edu
Chronic kidney disease (CKD) is a national public health problembeset by inequities in incidence, prevalence, and complicationsacross gender, race/ethnicity, and socioeconomic status. Ashealth care providers, we can directly address some factorscrucial for closing the disparities gap. Other factors are seeminglybeyond our reach, entrenched within the fabric of our society,such as social injustice and human indifference. Paradoxically,the existence of health inequities provides unique, unrecognizedopportunities for understanding biologic, environmental, sociocultural,and health care system factors that can lead to improved clinicaloutcomes. Several recent reports documented that structuredmedical care systems can reduce many CKD-related disparitiesand improve patient outcomes. Can the moral imperative to eliminateCKD inequities inspire the nephrology community not only toadvocate for but also to demand high-quality, structured healthcare delivery systems for all Americans in the context of socialreform that improves the ecology, health, and well-being ofour communities? If so, then perhaps we can eliminate the unacceptablepremature morbidity and mortality associated with CKD and thetragedy of health inequities. By so doing, we could become globalleaders not only in medical technology, as we currently are,but also in health promotion and disease prevention, truly leavingno patient behind.
"Of all of the forms of inequality, injustice in health is themost shocking and inhumane."
—Dr. Martin Luther King, Jr. (1929–1968)
Chronic kidney disease (CKD) has recently become recognizedas a global public health problem.1–3 CKD and, to a greaterextent, ESRD are characterized by marked differences in incidence,prevalence, and/or complications across gender, age, race/ethnicity,socioeconomic status, and geographic boundaries. These traitsmay confer either protection or increased risk for certain healthpractices and medical conditions, suggesting there is much tolearn beyond the traditional risk factors contributing to CKDand CKD-associated complications.4–7 ESRD is one of themost dramatic examples of health disparities, with rates forminorities ranging from 1.5 to 4.0 times those of age-adjustedwhite counterparts,6 despite similar rates for the early stagesof CKD.8 Although CKD is associated with increased rates ofpremature mortality,9,10 adjusted ESRD survival rates are paradoxicallybetter for minorities.11 The Institute of Medicine notes thatinequities in health outcomes can arise from within the healthcare system, such as the operation of health care systems, andthe legal and regulatory climate or from ecologic factors, suchas clinical appropriateness and need, and patient preferences,although significant overlap exists, for example, discrimination,biases and prejudice, stereotyping, and uncertainty. The Instituteof Medicine defines disparities in health care as differencesthat generally represent institutional or provider biases thatare unjust, even if unintentional (Figure 1).12,13 Unfortunately,the contribution of factors such as patient beliefs and preferencesare commonly overlooked when ascribing disparities to healthcare systems and/or providers.
Figure 1. Differences, disparities, and discrimination. Adapted from reference (12), with permission.
The term "health disparities," however, is frequently used todescribe the adverse health outcomes experienced by racial/ethnicminorities that occur in the context of broad historic and contemporarysocial and economic inequality,14–16 as well as healthcare system factors.12,17–19De facto racial segregationremains prevalent within US health care systems, while limitedrevenues and reduced capacity for health care delivery constrainorganizations dedicated to the care of poor and often largelyminority populations.20 Residential segregation, which was federalpolicy up to the civil rights movement21 and continues todayas mortgage discrimination, leads to racially divided communitiesthat may share low-income status but often differ in wealth,community assets, exposure to heavy metals or excess ambientair particulate matter, and other variables that may influenceCKD-related outcomes.22,23 Geographic analyses revealed community-levelpoverty was strongly associated with higher ESRD incidence butwas a more powerful predictor for black than for white individuals.24Dialysis facilities located in predominantly black communitieshave higher mortality rates and lesser compliance with recommendedperformance targets.25 As we refine our understanding of healthdisparities, we might be able to move beyond the racial andethnic background as the defining risk for CKD progression anddirectly target the underlying biologic and sociocultural factorsfor which race and ethnicity may be surrogates.
As the recognized world leader in health technology and medicalcare, the persistence of health inequities in the United Statesis an indictment of the institutionalization of moral apathyand likely contributes to our new ranking as last in preventabledeaths among developed nations.26 Dr. Steven Schroeder, formerpresident of the Robert Wood Johnson Foundation, presents acompelling case for concentrating strategies on the less fortunateto improve the health of the American people noting "that sinceall of the actionable determinants of health—personalbehavior, social factors, health care, and the environment—disproportionatelyaffect the poor, strategies to improve national health rankingsmust focus on this population."27
One challenge for the nephrology community as well as the broadermedical community is to rethink how we might improve each elementthat conspires to constrain the health outcomes we are tryingto achieve, not just those limited to a procedure or prescription.The focus of this review is to bring greater awareness of anddiscuss strategies to address some of the key social and environmentalfactors that contribute to CKD disparities and improve US healthcare systems to care effectively for an increasingly diverseCKD patient population.
CULTURAL, ENVIRONMENTAL, AND SOCIOECONOMIC INFLUENCES ON HEALTH OUTCOMES
"It is much more important to know what sort of a patient hasa disease, than what sort of disease a patient has."
—William Osler (1849–1919)
Further complicating strategies for effective health care deliveryare the multiple variations in health beliefs and practices,as well as distrust of the health care system, that extend acrossmany of the nation's socioeconomic and culturally diverse communities.28In addition, the health care milieu is under increasing pressureto provide more comprehensive quality care in shorter visittimes to more people and with more documentation while usingfewer resources. The likelihood of overt or subtle conflictsbetween patients and providers/health care systems is markedlyincreased under such settings. Addressing the constellationof factors that influence health outcomes seems an arduous taskfor health care providers, yet it is health care providers,most commonly physicians, to whom the general community looksfor leadership, not just for medical care, but for broader issuesthat affect health and well-being. For grasping more easilythe multidimensional nature of CKD disparities, a theoreticalframework can assist in understanding how the many socioculturaland environmental elements interact with biology to influencethe initiation and progression of CKD (Figures 2 and 3),23,29as well as understanding the context of patient-specific needs,values, and preferences (Tables 1 and 2).30
Table 2. Socioeconomic class and values of key determinants of healtha
Although understanding some of the broad differences in valuescan enhance our sensitivity and compassion for those we seeas different from ourselves, patient-centered care reminds usthat it is also important not to generalize and use a "one sizefits all" approach. Increased acculturation and integrationboth across and within racial/ethnic and socioeconomic boundarieshave led to diffusion and/or assimilation of the many valuescommonly attributed to a specific group. Nonetheless, the insightinto the origin and existence of such values is important inenabling a better understanding of "what sort of patient hasa disease."
Specific to CKD are marked variations in the prevalence of keyrisk factors such as diabetes, hypertension, and albuminuriaacross socioeconomic, gender, and racial/ethnic groups thatplay an important role in group differences in the prevalence,progression, and complications of CKD.31–36 Although theremay be biologic variations among racial and ethnic groups, theemerging data from the human genome project suggest that theseinterracial variations are modest at best and much smaller thanintraracial variations.37,38 Indeed, biologic variations aremore common across gender than race/ethnicity. Select biologicallybased factors may have both racial and nonracial contributions,such as hypovitaminosis D, which may be related to increasedmelanin and reduced ultraviolet conversion of previtamin D aswell as nutritional deficiency. Hypovitaminosis D is associatedwith increased rates of CKD initiation factors such as hypertensionand diabetes39 and progression factors such as inflammationand fibrosis,40 whereas vitamin D repletion may improve CKD-relatedmortality.7 Environmental influences modify gene and/or receptorexpression (gene–environmental) as supported by geneticlinkage studies describing susceptibility genes for CKD.41 Increasedrates of overexpression of TGF-β1 and/or a higher prevalenceof specific TGF-β1 polymorphisms in black individuals maycontribute to CKD progression and complications.41a Sickle celltrait (approximately 8% of black individuals), which has traditionallybeen described as causing renal microinfarction and hyposthenuria42but not CKD, may in fact be an important unrecognized factorfor CKD progression and complications.
Rates of hypertension incidence did not differ among middle-classblack and white individuals who had similar levels of baselineBP and body mass index and were followed for 7 yr.43 Racialvariation in BP response to antihypertensive therapy has beenreported,44 and this could affect disparities in CKD. Sehgal45assessed overlap between white and black individuals in responseto antihypertensive drugs in >12,000 individuals and foundthat 81 to 95% had similar response for diastolic BP and 83to 93% for systolic BP, reinforcing heterogeneity within raceas much as across race. Gender has been recognized as an importantfactor in the development of CKD.46 Gender-based genetic variabilityhas been linked to differences in BP in both black47 and whiteindividuals.48 In contrast to testosterone,49,50 estrogens mayattenuate CKD progression by lowering the cardiovascular stressresponse to adrenergic stimuli.51
HEALTH CARE SYSTEMS AND VARIATIONS IN HEALTH OUTCOMES
"You can always count on Americans to do the right thing, afterthey've tried everything else."
—Winston Churchill (1874–1965)
Despite the high level of national wealth in the United States,the lack of adequate health insurance for many of the nation'sindigent and working middle class is also disproportionatelycommon among racial and ethnic minorities31 and further contributesto the inability of such patients to receive adequate CKD andpre-ESRD care. Several recent studies4,12,13,52,53 but not all54,55have highlighted racial and ethnic disparities within the healthcare delivery system, ranging from reduced levels of qualityservices to poor outcomes. Several of these findings underscorethe institutionalization of biases within many health care deliverysystems, whereas others point to no insurance, underinsurance,lack of access to quality care, and/or multiple payer or nonuniformsystems of care as the major driving forces for disparitiesin health care outcomes.
Although many studies have demonstrated that improvements inaccess and standardization of care can reduce disparities inmany chronic health conditions, many CKD-related outcomes remainoutliers. Examining diabetes-related complications in an ethnicallydiverse population with standardized health care coverage, Karteret al.55 found similar or reduced rates of complications inminority enrollees in comparison with white enrollees, withthe exception of developing ESRD, which was significantly morecommon across all minority groups compared with white individuals.This unique finding that only CKD outcomes did not improve forminorities when care was standardized suggests that there maybe non–health care system factors that are important forkidney-related outcomes and/or that additional novel qualitycare indicators are important for patients with CKD. ESRD isunique, in that most patients are covered by Medicare, and isgenerally characterized by equity in access to care,56,57 exceptawaiting cadaveric-donor renal transplantation, for which standardizedhealth care reduces the black–white difference but significantdifferences still exist,58 most likely as a result of culturalhealth beliefs and practices. A recent report by Gao et al.59of >13,000 beneficiaries receiving care through the Departmentof Defense, a standardized health care delivery system, foundsimilar rates of provider compliance for black and white patientsfor stages 3 and 4 CKD targets. Follow-up on ESRD rates willhelp to provide insights into the effects of quality care onCKD progression across gender and racial/ethnic groups. Despiteseveral study limitations, these findings strongly support thepossibility for dramatic attenuation of socioeconomic, gender,and racial/ethnic disparities for patients who have CKD andare treated within a standardized or single-payer health caredelivery system.
THE WAY FORWARD: STRATEGIES FOR REDUCING DISPARITIES AND FUTURE RESEARCH DIRECTIONS
"When you have exhausted all possibilities, Remember this...youhaven't."
—Author Unknown
What can or should government, industry, and physicians do toaddress the racial/ethnic disparities in CKD care? The Departmentof Health and Human Services has created a strategy for value-drivenCKD health care initiatives that includes focusing on healthdisparities, developing and measuring CKD quality and efficiencymetrics at the dialysis facility and nephrologist level, reportingoutcomes including consumer/payer choice incentives, reformingreimbursement, supporting interoperable health information technology,and promoting evidence-based care and coordinated care.60
As a medical profession, we too frequently believe that manyhealth issues are beyond our impact, citing them as societalissues, not realizing that we are society,61–63 whileour apathy and inaction only perpetuate the current state ofaffairs. For a moment, let's imagine that we actually embracethe moral imperative of health equity: What might be implementedto improve our understanding and respect of our patientsdiverse cultural values, transform our institutions and socialstructures to promote health and well-being, and generate theadvocacy skills that will be needed to make universal accessand quality uniform health care a reality?
Effective Communication
Lack of effective communication, including issues such as limitedhealth literacy, is a pervasive and independent risk factorfor poor health outcomes.64,65 A renewed emphasis on currentprovider education and the education of future generations ofproviders that might include structured fellowship trainingfor sensitivity to cultural, socioeconomic, and gender diversity;leadership in health promotion and disease prevention; and actionableskill sets to engage in transforming health care systems andadvocating for relevant health and health care policies as partof a comprehensive approach to high-quality CKD and ESRD care.66,67Many of our health messages need to provide effective educationfor high-risk communities,68,69 such as easily readable andlinguistically appropriate CKD-related educational materials70,71and approaching patient encounters with a presumption of limitedhealth literacy.65 Specific suggestions for improving communicationat a health care system level include making cultural competencya core institutional value, ongoing training and evaluationon cultural competency issues, collecting demographic data toallow assessment of potential disparities in quality, collectingdata on patients primary language to help guide serviceprovision and translation services, and promoting providersand staff diversity in targeted communities and involving consumersand community leaders in the design of local programs and services.68
Medical Advocacy for Improved Health Care Systems
In 2003, a stakeholder group identified 19 key barriers to optimizingCKD care in the United States, such as the lack of adequatereimbursement, difficulty of providing care coordination andnonphysician services, and the lack of availability of bothprimary care and specialty physicians.72 A more recent seriesof in-depth discussions with a geographically diverse groupof nephrology practices throughout the country identified economicreality/reimbursement and the difficulty in delivering multidisciplinarycare as impeding attempts to improve quality for patients withCKD (R. Rettig, PhD, RAND Corporation, Washington, DC, personalcommunication, January 2008). A collaborative legislative agendato improve care for patients with CKD developed by the RenalPhysicians Association, American Society of Nephrology, NationalKidney Foundation, and American Society of Pediatric Nephrologyis focusing on appropriate funding for CKD care that is deliveredin a CKD clinic or office setting. This agenda includes advocacyfor Medicare coverage for educational efforts regarding CKD,including transplantation and dialysis options, as well as increasedbasic and health services research to advance knowledge aboutCKD and its treatment (A. Kliger, MD, Yale University Schoolof Medicine, New Haven, CT, personal communication, January2008). Additional approaches include advocacy for structuredcoordinated care systems and/or the use of disease managementapproaches to link economic incentives to improved clinicaloutcomes. Specific health care system approaches recently proposedby Dr. Jan Blustein include setting achievable performance targets(will help reduce "cherry picking"), providing targeted infusionsof expertise or technology and of infrastructure investmentin underresourced environments, and supplemental funding tothose caring for high volumes of low-revenue patients.20
One approach that has been shown effective in delivering high-qualitycare for those with chronic disease by integrating many of thesestrategies is the chronic care model, which fosters productiveinteractions between informed patients who take an active partin their care and providers with resources and expertise (Figure 4).73,74
Figure 4. The chronic care model. Reprinted from reference (74), with permission.
Research Approaches to Address Disparities
Dr. Claude Lenfant, former director of the National Institutesof Health National Heart, Lung, and Blood Institute, noted,"Enormous amounts of new knowledge are barreling down the informationhighway, but they are not arriving at the doorsteps of our patients,especially for a disproportionately high percentage of women,racial and ethnic minorities, and other high-risk groups inthe US health care system."75 He emphasized multidisciplinaryor translational research approaches, including rigorous research,to improve health care systems and provider–patient interfaces.For CKD, this translates into research investments in renalbiology and pathophysiology in the context of patient- and community-levelinfluences.76 Disparities in CKD have paved a unique roadmapfor promising opportunities for research investment, includingpromising naturally occurring cost-effective interventions suchas vitamin D77 or emerging novel peptides such as FT061452,a glutathione precursor with vitamin implications,78 which aremore likely to be highly embraced by low-resource and minoritycommunities.
"The secret of the care of the patient is caring for the patient."
—Francis Peabody (1881–1927)
Inequities in the incidence, prevalence, and treatment of CKD/ESRDare well documented and vary among different minority groups.Despite the progress made, many of the diverse factors thatinfluence the initiation and progression of CKD and the disparitiestherein are not fully understood. Although modifiable risk factors,such as culture, socioeconomic status, and access to medicalcare, contribute to a large proportion of CKD disparities, additionalrisk factors, from emerging biomarkers to providing structuredand coordinated health care delivery, remain to be defined moreclearly. To improve the care of diverse communities, medicalresearch alone is insufficient. Efforts to address lingeringsocial injustices that perpetuate limited educational opportunities,socioeconomic imbalances, and limited access to health careare needed to ensure that the contributions of advancing medicalcare will have a clinically relevant impact on improving patientoutcomes (Table 3).
The nephrology community has the opportunity to address notonly inequities within health care systems but also many ofthe sensitive issues that underlie the propagation of community-levelhealth disparities, including elimination of injustices embeddedwithin the social systems that influence health and health careand the promotion and inculcation of community-level and personalresponsibility for health- and health care–related behaviors.79–81In addition, the nephrology community can take a leadershiprole in a re-conceptualization of the medical community's understandingof health so that our society and health-related systems arefocused on well-being and true prevention, not just early detectionor reactive acute care. The word "health" is derived from theAnglo-Saxon root "hale," which means to be whole. Our presentfocus on medical care and creating a medical care workforcemust change to a broader focus on health, enabling us to recapturethe true calling of the physician, and the actualization ofa vision of insurance, medical, and related systems of "health"care that can provide uniform quality care based on the patientas a human being and truly considering care as holistic.
K.N. is supported in part by the National Center for ResearchResources, Research Centers in Minority Institutions (RR14616,RR11145, and RR019234), and the DREW/UCLA Project EXPORT, NationalInstitutes of Health, National Center on Minority Health andHealth Disparities (P20-MD00182). A.N. is supported in partby the National Center for Research Resources, Research Centersin Minority Institutions (U54 RR019234), and the Richard RosenthalDialysis Fund.
Presented in part as "Race, Gender, and Socioeconomic Disparitiesin CKD in the United States" at the American Society of NephrologySymposium for Health Disparities in Nephrology; October 31 throughNovember 5, 2007; San Francisco, CA.
Footnotes
Published online ahead of print. Publication date availableat www.jasn.org.
See related editorial, "Is the Ethnic Disparity in CKD a Symptomof Dysfunctional Primary Care in the US?" on pages 1249–1251.
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