Joanne M. Jordan|Reva C. Lawrence|Raynard Kington|Patricia A. Fraser|Elizabeth W. Karlson|Kate Lorig|Matthew H. Liang
Ethnic health disparities in arthritis and musculoskeletal diseases: Report of a scientific conference
University of North Carolina at Chapel Hill|National Institute of Arthritis and Musculoskeletal and Skin Diseases|Applied Behavioral Research (United States)|National Institutes of Health|Brigham and Women's Hospital|Harvard University|Brigham and Women's Hospital|Harvard University|Palo Alto University|Stanford University|Brigham and Women's Hospital|Harvard University
national institute arthritis musculoskeletal skin diseases niams national institutes health nih committed better understanding diagnosis treatment prevention diseases skin muscles bones joints many diseases affect women minority populations disproportionately increased numbers people affected well increased severity disease niams interests focused advancing medical research identify address underlying causes health disparities minority populations december 2000 niams joined number nih components office research minority health office research womens health office disease prevention office behavior social sciences research centers disease control prevention arthritis foundation american college rheumatology american academy orthopaedic surgeons american academy dermatology sponsoring scientific conference address many aspects health disparities within mission areas conference also served identify scientific opportunities knowledge gaps need filled order eliminate health disparities following article summarizes conference highlights relating arthritis musculoskeletal diseases stephen katz md phd director national institute arthritis musculoskeletal skin diseases bethesda md stephen katz md phd director national institute arthritis musculoskeletal skin diseases bethesda md arthritis musculoskeletal conditions among common health problems us 43 million adults currently affected projected 60 million adults affected 2020 1 marked differences incidence severity processes care outcome number arthritis musculoskeletal conditions exist among different racial ethnic groups 210 reasons disparities largely unknown span gamut possibilities genetic predisposition environmental exposures behavioral social etiologies recognizing gap multifactorial incompletely understood potentially difficult redress entirety number public private initiatives mounted address issues example new national center minority health health disparities established national institutes health nih healthy people 2010 11 set nations health objectives beginning 21st century included goals eliminate health disparities improve quality years healthy life first time arthritis musculoskeletal conditions identified distinct important public health concerns article summarizes conferencethe first kindorganized hosted december 2000 national institute arthritis musculoskeletal skin diseases cosponsored centers disease control prevention arthritis foundation nih office research minority health nih office research womens health nih office disease prevention nih office behavioral social sciences research american college rheumatology american academy orthopaedic surgeons american academy dermatology aim conference address ethnic disparities arthritis musculoskeletal skin diseases almost half diverse group conferees people color summary disparities skin diseases reported elsewhere 12 objectives conference follows 1 highlight current knowledge genetic environmental social behavioral factors related ethnic differences prevalence morbidity disability arthritis musculoskeletal skin conditions 2 identify strategies reduce disparities barriers dissemination strategies 3 identify research needs opportunities areas examine racial ethnic disparities arthritis musculoskeletal conditions must acknowledge attempt address basic methodologic difficulties surrounding measurement interpretation relevant variables variables include definitions race ethnicity disease criteria potential confounders socioeconomic status ses first race ethnicity inherently difficult concepts definitions racial ethnic groups may vary context different meanings ascribed according distinct purposes clinical practice medical research social science research even national surveillance vital health statistics definitions race ethnic groups also varied census census study study race ethnicity terms frequently used interchangeably represent related distinct constructs view race biologic concept grounded largely discredited notions phenotypic genetic biologic characteristics believed sort humans genetically biologically homogeneous groups instead race often used social construct varied time according context used contrast ethnicity accepted social construct defines groups according common language national origin customs culture rarely fully characterized medical epidemiologic research 13 race ethnicity obviously intertwined may measured different methods research purposes race ethnicity thought best measured selfidentification discourse surrounding recent changes federal guidelines census concerning selfidentified data race ethnicity allow citizens identify multiple races highlights continuing challenges measuring concepts us population becomes increasingly diverse concepts race ethnicity undoubtedly change perhaps rendering current definitions less meaningful second much work disparities standardized case definitions disease andor outcomes may exist uniformly applied making comparisons subjects across studies perilous instance cases identified populationbased sources administrative databases may utilize disease classification criteria however sources data frequently feasible affordable ones sufficient size base inferences given realities one must first reassured alleged ethnic disparities disease health outcome result bias confounding chance example us african american ethnicity associated overall indicators lower ses risk factor poor health outcome teasing effects ses genetic environmental factors explaining increased morbidity mortality observed african americans difficult ses variously defined years education income employment status occupational prestige health insurance source postal code combination factors likely result disease condition question risk factors disparities precede onset disease addition ses may confound potentially true relationship ethnicity disease associations ethnicity disease outcome also vary ses association ethnicity disease may evident certain ses groups seen radiographic hip osteoarthritis oa johnston county osteoarthritis project discussed thus ses evaluated independent risk factor potential confounder studies ethnicity disease outcome also potential interacting variable effect modifier even exposing ses factor responsible given ethnic association disease outcome little identify actionable interventions since ses may proxy environmental exposures lifestyle factors may influence disease outcome rheumatology ethnic differences disease susceptibility outcome extensively studied systemic lupus erythematosus sle 2 3 1418 african americans higher prevalence sle severe disease worse outcome compared caucasians 2 16 17 hispanics may also increased risk poor outcome sle 3 16 17 genetic factors long considered major determinants disease sle variations factors may explain differences lupus manifestations outcome among ethnic groups 16 17 similarly genetic differences also advanced potential explanation ethnic differences manifestations systemic sclerosis choctaw indians compared ethnic groups 4 recognition relative importance inherited factors including hla receptors immunoglobulins among various ethnic groups may provide insights clinical differences noted ethnic groups may enhance understanding mechanism disease importance genetics ethnic differences sle systemic autoimmune diseases cannot denied factors explain ethnic disparities observed diseases modifiable present time attention also increasingly focused identification potentially modifiable environmental socialbehavioral factors underlying ethnic disparities disease manifestations outcome interaction genetic factors environmental socialbehavioral factors also receiving recognition important avenue research example sle associated exposure multiple drugs 19 outbreak eosinophiliamyalgia syndrome caused ingestion contaminated ltryptophan 20 21 disease resembling systemic sclerosis induced ingestion contaminated rapeseed oil 21 similarly animal models lupus also shown influence environmental factors pristane modifying disease genetically susceptible mice 22 given complex relationships among factors studies disparities must deal broad comprehensive spectrum data including genetics ses environmental exposures social behavioral factors first study sle focused modifiable nutritional behavioral psychosocial factors 5center study caucasians african americans balanced ses race 18 23 examples include lumina lupus minority populations nature versus nurture study examined genetic environmental socialbehavioral factors sle caucasians african americans hispanics southeastern us 16 17 carolina lupus study focused environmental reproductive genetic factors sle african american caucasian women north carolina south carolina carolina lupus study found similar risk factors disease ethnic groups possibly protective effect breastfeeding potentially modifiable risk factor could explain ethnic differences sle 24 importantly studies demonstrated significance examining ethnic differences disease manifestations outcome utilizing uniform selection criteria methodologies across ethnic groups within study ethnic disparities also exist prevalence severity nonautoimmune musculoskeletal conditions oa african american women may 23 times likely caucasian women radiographic oa knee recently shown african american women also higher prevalence radiographic knee oa mexican american women 5 6 25 26 johnston county osteoarthritis project populationbased study oa rural north carolina county severe bilateral radiographic knee oa documented african american women african american men compared caucasians 27 28 addition african american men likely caucasian men radiographic hip oa bilateral hip oa result found lower ses group african american men fewer 12 years formal education 65 likely radiographic hip oa twice likely bilateral radiographic hip oa compared caucasian men similar educational attainment emphasizes importance controlling ses also examining interaction ethnic group ses outcomes johnston county osteoarthritis project also shown possible ethnic differences factors associated serum biomarkers oa 29 30 comparable comprehensive populationbased data oa ethnic groups us generally lacking although data radiographic knee oa older mexican american participants third national health nutrition examination survey recently released 26 studies systemic autoimmune diseases studies oa demonstrate importance assessing genetic environmental socialbehavioral data interactions study ethnic differences access utilization quality health care sources arthritis musculoskeletal conditions infancy judge findings diseases would fertile area future work studies done area analyzed data national medicare medical expenditure data sets difficulties inherent secondary data analysis regarding validation diagnoses missing data definitions relevant variables african americans hispanics asians appear 325 times less likely caucasians undergo total joint replacement oa hip also less likely primary oa reason hip replacement 9 31 32 studies possible reasons behind disparities ethnic differences prevalence disease access care insurance coverage care preferences quality care received needed studies attempting sort relative importance issues must include comprehensive assessment ses medical insurance status availability access care psychosocial factors likely associated outcomes one study total joint replacement knee hip oa african american caucasian male veterans presumed equality least factors related health care quality access found significant ethnic differences awareness understanding total joint replacement well perceptions risks benefits thereof 10 another study low back pain african americans caucasians 33 found ethnic differences careseeking african americans less likely seek medical care likely receive less intensive diagnostic evaluation therapeutic course differences use selfcare alternative complementary care traditional medical care arthritis musculoskeletal conditions also observed 7 34 35 african americans hispanics likely use prayer herbs ointments rubs less likely use traditional medical care arthritis symptoms caucasians 7 34 35 studies examining knowledge beliefs psychological factors explanations differences selfcare careseeking receipt care different populations needed 35 36 attention also recently focused characteristics health care provider doctorpatient interaction learn ethnic differences care recommended delivered certain conditions 37 studies may require use qualitative methods attempt unveil reasons behind observed disparities elimination ethnic disparities outcomes undoubtedly require multipronged approach aimed root cause causes attention factors operative across variety conditions largest impact health population broadest support social initiatives remediation factors potentially related ethnic disparities outcome limited access quality care medications surgery undoubtedly require interventions societal political levels several potentially important basic factors may amenable investigation andor intervention individual level include selfefficacy literacy racial stereotyping selfefficacy psychological trait whereby individuals develop competence ability monitor manage condition 38 increasing selfefficacy improves health outcomes across host conditions 39 40 arthritis selfhelp program intervention empowers patients improves selfefficacy improves health across number rheumatic conditions numerous ethnic groups costeffective 3941 despite program used small proportion people arthritis musculoskeletal conditions could potentially benefit 42 identification human social practical barriers dissemination known effective programs critical helping redress disparities research needs directed toward discovering basic mechanisms evaluating efficacious strategies modifying factors conference showcased examples successful programs targeted ethnic populations arthritis musculoskeletal disorders new york detroit los angeles speakers reported common challenges erratic funding frequently insufficient lack appropriate ethnic leadership health professionals provision health care populations weakened social deprivation lack supports racial stereotyping despite programs prevailed features identified invaluable programs included following 1 respectful meaningful culturally sensitive interactions based community model 2 multiple partnerships involving community institutions eg african american churches academia state public health departments etc 3 dedicated leaders another issue identified important underrecognized understudied redressing disparities literacy functional literacynot simply ability readis impaired sufficiently affect everyday life 4751 americans associated inferior health outcomes increased health care costs amenable clinical public health strategies 43 one nihfunded study functional literacy arthritis musculoskeletal conditions finally potential role racial bias neither defined addressed classic epidemiology health disparities led emotional discussion conferees disagreed importance racial bias explaining health disparities impeding dissemination strategies eliminate however racialethnic stereotyping regardless whether negative positive acknowledged everpresent dominant nondominant ethnic groups recognized multiple knowledge gaps concerning presence causes disparities means eliminating conference participants identified research opportunities research agenda proposed discussed according outline regarding measurement issues influence social genetic behavioral environmental issues disparities strategies eliminating disparities barriers dissemination strategies conditions ethnic groups sle african americans compared caucasians disparities incidence outcome well established conditions ethnic groups basic epidemiologic clinical data either collected analyzed therefore yet possible establish whether disparities exist situations data disparities available future research go beyond describing disparities identifying explanations disparities designing evaluating interventions would address potentially modifiable factors order eliminate disparities situations data disparities limited nonexistent oa hispanics asians native americans basic epidemiologic investigation needed existing data sets albeit limitations groups sampled could examined starting point indepth study etiology explanations disparities would almost certainly require accumulation comprehensive data cultural environmental socialbehavioral genetic factors interaction factors studies migrants could illuminate potential interactions genetics environment must recognized subgroups different national origins geographic locations us degrees acculturation languages cultures may comparable respect outcomes research basic biology genetic environmental social behavioral factors interactions related particular conditions outcomes major priority necessity involve multiple scientific disciplines genetics toxicology immunology epidemiology behavioral science exploratory hypothesisdriven order identify novel environmental exposures understand interactions host basic mechanisms perturb immune andor neuroendocrine systems genetic factors could important disease susceptibility severity illness disease subsets metabolism response pharmaceutical biologic agents andor psychobehavioral characteristics affect treatment confounding effect modification ses need addressed analysis interpretation study disparities potential explanations disparities stop ses however attempt understand factors related ses individual societal level amenable intervention research factors responsible ethnic differences processes care evaluation arthritis musculoskeletal conditions use selfcare complementary alternative care formal medical care patterns care access use therapies joint replacement examine individual societal factors including characteristics health care providers medical care delivery system potential interactions individual identification potentially modifiable factors associated disparities emphasized approaches redressing responsible factors generalized across conditions andor across ethnic groups likely public health impact receive special emphasis cultural barriers patient preferences resources implementing public health recommendations need identified finally factors limiting full implementation known effective interventions identified strategies overcome tested disparities incidence outcome arthritis musculoskeletal conditions noted ethnic groups known whether factors responsible disparities broadly relevant across spectrum conditions unique particular conditions future research needs move beyond description attempt understand mechanisms disparities genetic environmental cultural behavioral societal combination factors interventions need tested efficacy effectiveness costeffectiveness eliminating gap challenge move research practice forward next decade daunting stakes high recognition problem exists multiple research initiatives launched give cause optimism