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Distrust of the Health Care System and Self-Reported Health in the United States

Katrino Armstrong, MD, MSCE,'-^'^-"^'^ Abigaii Rose, MD, MPH,' Nikki Peters,BA,'Judith A, Long, MD,''^^ Suzanne McMurphy PhD,' Judy A, Shea, PhD^-"^-^' Deportment of Medicine, Universityof Pennsyivonia Schoo i ot Me dicin e. Pennsylvanio. PA, USA; Abramson Ca ncer Center. UniversityofPennsylvania Scho oi of Medicine, Pennsyivonio, PA, USA; Cen ter for Clinical Epidemioiogyond Biostatistics, U niversityot PennsyivaniaSchooi of Medicine. Pennsyivania, PA, USA; ''Leonard Davis instituteof Health Economics, Universityot Pennsyivania, Pennsyivania, PA,USA; Cen ter for Heaith Equity Research and Promotion, Phiiadeiphia VA Me dica l C enter, Pen nsyivanio. PA, USA

CONTEXT: Despite theoretical concerns that health care relateddls-liiist may lead lo poor heallh outcomes by interfering with effectivehealth care, liltleis currently known aboutthe prevalence or outcomesof distrus t of the health care system in the United States,

OBJECTIVE: To investigate the association between distrust of thelieaKii care system and self-reported health status amongthe generalpopulation In the United States.

DESIGJV: Random-digit-dialing telephone survey.

PARTiaPANTS: Nine hundred and slsty-one adult residentsof thernnlinental U,S,

PRIMARY MEASURES: Distrust ofthe health care systemand selt-re-[jorlecl liciilth status,

RESULTS." Distrust of the health care system is relatively high in theUnited States, with between20% and 80% of respondents reportingdis t rus t for each Item on the Health Ciu-e System Distrust scaleand amedian scale score of31 (potenUtil ran ge from 10lo 50), Distrust ofthehealth care system Is strongly associate d wilh self-reported fair/poo rheal th (odd s ratio [ORI1,40%. 95% confidence interval [CI) l, 12 to1.75for each standard deviaUon increasein distrust), even after adjustingfor sociodemographic characteristics, acce ssto health care and tru stinprimary physicians.In contrast, low trust in one's primary physicianIsmuch lower [only 10%to 20% of respondents reported distrustfor eachitem) anci la not assoclaled with health status,

CONCXJJSIONS: Distrust of the health care systemis relati\'ely high inthe general populationIn the United Sta tes and is strongly associatedwith worse self-reported health. Further studiesare needed to as se s sthe direction of this association and the mech anisms involved,

KE Y WORDS: dis t rus t : heal th s ta tus .DOI: 10,1111 /J, 1525-1497.2006 .00396,xJ GEN INTERN MED 2006: 21:292-297,

A l thoughthe inl luences of t rus t and distrust on many as-

pects of society are well described.'"* interest in healthcare related trustand distrust is comparatively recentand theeffects of these phenomena less well imderstood. Theoretical-ly, trust and distrust influence the frequency and "cost" oftransactions.^*^ In sett ings of high trust , t ransactions occurmore easily and fewer resources are needed for "tnonitoring.negotiating, litigating, and enforcing formal agreements."'Insett ings of high distrust , t ransactions are infrequent andt ransacUonal costs are higher. These concepts can be direct-ly extended to health care. Patientswho have higher levelsofhealth care related trustin shoul d he more Ukely to seek healthcare and accept health care recommendations. Health care

Tlie aulhors have no conjlicls of irifprcsi to report.Address correspondence and requests for repriiils lo Dr, Armstrong:

1204 Blockley Hall.423 Giifirdian Drive,Philadelphia, PA 19104-6021kannslro@nwiiL nied. upenn.edii}-

t ransactions should be more effective becauseof better infor-mation exchange and stronger relationships. Patients withhigh levels of health care-related distrust in should be morelikely to avoid healtli care, less likelyto maintain continuity ofcare, and mor e likely to need to monitor and verify ihelr healthcare decisions.

Despite this theoretical foundation, thereis relaUvely littleempirical evidence about the effects of health care trust anddistrust on the functioning and outcomes of the health caresystem,""" Most prior researchon health care related trusand d is t rus t has focused on t rus t ln physiciansa form of in -terpersonal trustwith the majority of efforts directed at un-derstanding the determinants rather thanthe outcomes ofthisphenomenon.' '^""^ Despite evidence from other disciplinsuggesting that broad forms of social Inist may have thestrongest effects on individual and group outcomes.^ studieexamining institutional trust have focused on speciflc seg-ments of the health care system, such as distrust of medicalresearch'*^ or health insurers^^""*or hospitals . '^ rather thanhroader forms of distrust such as dis t rus t of the health caresystem. Furthermore, it ha s only recently been recognized thadistrust may not be captured by instruments focusing solelon trust , as it is more negative than the absence of t rus t

In this paper, we reportthe resu l t s of a national survey toa s se s s the prevalence of distrust of the health care system inthe United States and to determine if health care systemdis-t rus t is associated with self reported health.We chose to ex-amine the association hetween distrust and health status inorder to demonst ra te the potential public health impact ofhealth care system distrustand to provide the framework fors tudies of the pathways by which distrust affects health.Weused the Health Care System Distrust Scale thatwe had pre-viously developed^" and compared the association betweeheal th s ta tus and health care system distrust withthe associat ion between health status and t rus t ln personal physicians.^^ ln addition, we examined sociodemographic and

health care access variables that correlated with health casystem distrust .

METHODS

Study Design an d Sample

We conducted a national random digit dialing telephonesur-vey hetween November 200i and J anua r y 2002 . The samplwas designed to generalize to the continental U.S. adult pop-ulat ion among household s with telephones. The study w asap-

Maiuiscript received March 1, 2005

Initial editorial decision August 1. 2005Final acceptance N oi^mbe-r 16, 2005

2 92

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IGIM Armstrong et at. Distrust and Health Staitis 293

Patientcharacteristics

Socio-demographics

Personalitycharacteristics

Culturaibackground

Priorexperiences

Health care systemcharacteristics

FiGURE 1. Conceptual model of heafth care distrust.

proved by the University of Pennsylvania InstituUonal ReviewBoard.

Data CollectianInterviews were conducted in English staggered over times ofday and days of the week. In each household, interviewersasked for the youngest adult male at home. If no male wasavailable, interviewers asked for the oldest female at home.This systematic respondent selection technique producessamples that closely mirror the population in terms of ageand gender.^'* We completed 96i interviews, with a contactrate (the proportion of working numbers where a request forinterview was made) nf72%. a cooperation rate (the proportionof requests where consent was obtained) of 60%, and a com-pletion rate of 99%.

MeasuresDistrust of the Health Care System. We used the 10-item HealthCare System Distj ust scale to ass ess d istrus t ofthe he alth ca resystem. The scale development has been published previous-ly,^^ In brief, the deveiopment process u sed focus groups of thegeneral public in Philadelphia to define the dimensions ofhealth care system distrust and develop an introductory def-inition ofthe health care syslem (hospitals, health insurancecompanies, and medical research). Potential items corre-sponding to these dimensions were generated from focusgroups and existing scales of physician trust. ' '^'^ Pilot test-Ing using thlnk-aloud exercises was used to refine the drafti tems. The final scale was determ ined throu gh a pilot survey of400 individuals in Phiiadeiphia, Four distrust dimensionswere identified (honestyitems a. d, e.J; confidentialityitemsb. f; comp etenc e items c. h: an d fidelity-items g. i). Final sc alescores had an internal consistency of0.75 . item-total correla-tions ranged between 0.27 and 0,57 and 1 general compo nentaccounted for 32% of the variance.^^ Scale scores correlatedpositively with higher education, age. and African-Americanrace.

Trust in Primary Physicians, We measured the respon dent 'strust in their primary physician using the 7 item trust sub-scale of the Primary Care Assessment Survey (PCAS) (Appen-dix A),^^ This scale has a Cronbach s a of 0,86. range of Item-

total correlations of 0.49 to 0.73. and no substantial fioor andceiling effects.^^

H&alth Status. Self-reported health was measured with theGeneral Health Perceptions question that asks participantsto characterize their health as excellent, very good. good, fairor poor. This Item is highly correlate d w ith longer m ea su re sof health status, morbidity, and mortality.^^"^^^

Health Care Access. Items from the Behavioral Risk FactorSurveillance Syslem 20 01 question naire (BRFSS) were used toassess access to health care in general , including insurancecoverage, usual source of health care, and existence of a pri-mary health care provider.^"

Sociodemographic Characteristics. Sociodemographic char-acteristics, including age, education, and household income,were measured using items from the 2001 BRFSS.' '" Items as-sessing race and ethnicity were based on the 2000 U.S. Cen-sus .^^

Statistical Analysis

Data analysis was performed using STATA 7.0. All P-values are2-sided. To as se ss the association between distru st and healths t a t u s , bivariate analyses were conducted to identify corre-lates of health status followed by logistic regression withhealth status (fair/poor vs good/very good/excellent) as the

dependent variable. In addition to distrust of the healtli caresystem, the potential correlates of health status included trustin physicians, sociodemographic characteristics (age. race,gender, educational attainment, and household income) andmea sures of access to health care (health Insuranc e coverage,source of health care, having a primary provider). Becausedistrust of lhe health care system and trust in physicians weremoderately correlated, we construe ted separate models to as-sess the association between each of these variables andhealth status. However, the coefficients for the trust and dis-trust measures were essential ly unchanged when both meas-ures were added to the same regression. Thus, we present themodel that includes both distrust of the health care systemand trust in physicians. Scale scores were standardized (mean10. sta nd ar d deviation 1) to allow comp aris on of the coeffi-cients for health care system distrust and trust ln physicians.

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294 Armsfrong et al. D istrust and Health Status JGIM

To evaluate potential correlates of distrust of the healthcare system, we used indepe nden t sample t tests and 1-wayanaly sis of varian ce followed by ordinary linear regression withdistrust of the health care system as tlie dependent variable.Potential correlates included the sociodemographic charac ter-istics and measures of access to care listed above. Variableswere retained in the model if they were correlated with d istr ust

(P< ,05) or chang ed the coefficient for anot her v ariable by 15%or more. Because distrust w as correlated with health statu s inthe models described above, we also assessed the effect onthese associations of adjusting for health status.

R E S U L T S

The 961 participants were predominantly Caucasian with amean age of 47 and a wide range of educational attainmentand household income (Table 1). Over 80% had health insu r-ance and over three-quarters had a primary physician. Seven-ty-three percent said their usual source of care was a privatedoctor's office. Self-reported healLh sta tus was vridely dlstrib -uteti a cross the sample with 16% of individuals reporting ex-cellent health. 38% reporting very good hea lth. 29% reportinggood health,14% reporttng fair health, and3% reporting poorhealth. The mean score for the Distrust of the Health CareSystem scale was 30.5 (range 10 to 50). Between 20 and 80percent of responses to individual items indicated distrust(Table 2). The mean score for the trust subscale of the PCASwas 28.8 (range 7 to 35). and less than 10% of responses toindividual items indicated d istrust. Distrust of the health caresystem was inversely correlated with trust in primary physi-cians (Pearson's correlation coefllcient -0 ,3 4 , P 7 0

Race /e thn id tyAfrican AmericanCaucasianHispanicOther

GenderFemaie

MaieEducationL.ess than high schoolHigli school onlySome coiiegeColiege or higher

RegionNortheastMidwestSouthWest

Annuai household incomeS60 .000

Heaith InsuranceNoneGovemmentPrivate

Personal health care providerYesNo

Source of health carePrivate clinicHospital-based ciiniePublic health clinicEmergency room

Self-reported healthExceiientVery goodGood

FairPoor

21.722.219.815.111.310.0

7 .8

80.75.95.6

52.347.7

10.534.024.031.5

15.626.039.0

19,4

18.030.023.128.9

13.820.965.3

78.621.4

72.610.0

9 .95 .3

16.137.629.014.0

3 .3

Distrust ot theHealth Care

System ScaleScore (Range 10 t

50)

Mean

28.731.431.131.429.629.5

30.330-430.032.3

30,3

30,730.430.230.930.2

30,929.930.6

30.8

30.530.130.530.8

31.730.429.6

30,531.0

30.531.029.629.5

29,430.430.0

32.434,5

P-Vatue

,001

, 6 8

,5 2

.7 7

,4 8

.9 4

,0 4

.8 1

. 4 6

.001

With age and health insurance coverage, and. pertiaps importantly, that it is strongly associated with worse selported health, even after adjusting ibr age. sex. race, edtion, income, and Insurance coverage. This ilndinimportant for several reasons. First, the high prevalencdistru st and the strength of its associationwith health suggethat health care system distrust may be an important phealth issue in the United States , Among our sample, the of an increase of1 standard deviation in distru st was of simmagnitude (OR 1.40) as the effect of aging by 10 years ratio |OR| 1.26). Although trust in physicians has genermore attention from health researchers to date, distrust

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JGIM Armstrong et al. Distrust and HeaUh Status 295

Table 2. Distrust of the Health Care System Scale Responses

Strongly Agree Not Sure Disogree StronglyAgree (%) {%) (%) {%> Disogree (%>

(a) Medical experim entscan he done on me wiihout my knowing aboul itIb) My medical rec ordsare kept private((') People die every day because of mistakes by the health care system

(d) When they take niy blood, they do tests they do not tell me about.(c) If a mistake were madeIn my health care, the health care system wouldtry to hide itfrom me

(f) ['eople can get access to my medical records withouimy approvalIf!) The health care system cares more about holding costs down thanit does about doing

what is needed Ibr my health(h( I receive high qualily medical care fromthe health care system,(i) The health care system putsmy med ic^ needs aboveall olher considerations when

treating my medical problems(1) Some medicin es have th ingsin them that they do not tell you about

(bj, (hi, and (i) are reverse scored io mectsitre distrust.Gray shading liidicales responses consistent with dtstrusl.Vie next questions are about your opinion ofthe health care system in general When we refer to the health care system, we niean hospitals, heallhinsurance companies, and niedicai researcli.

163 34 9

172 6

2 53 7

3 817

2 03 03 3

1 932

2 92 7

4 13 3

332

65

45

35

li t189

2 221

13l l j

922

\2157

3 517

2 816

92 4

3 9 14 13

health CEire system was both more prevalentand more stronglyassociated with heallh status thanlow trust in personal phy-sicians. Second, the association between health care syslemdistrust and health raises the possibility tha t hea lth caredis-trust may bean important mediator or confounder ofthe wide-ly publici/-ed rclallon.ship between social capitaland health.'*^"-^'^ Levels of social trust have been demonstratedto be associ-ated with several dilferent measuresof health, but the path-ways for this relationship are not well understood. We arecurrently conducting studiesto explore the contribution ofhealth care system distrust to this relationship. Third,dem-onstrating a strong association between health care systemdistrust and health stattis suggests that reducing health caresystem distrust may representa relatively unexplored avenuefor improving healthin the United S tates and provides both theimpetus and justification for studies to explore the mecha-nisms underlying this association.

Table 3. M ulfivaria te Analysisof Variables Associated with Poor/Fair Se lf-Reported Health Status

Odds Ratio 95% Cl />-Value

HealLh care system distrust*Trust in personal physician"''^

Sot;iodemographic characteristicsAge (each decade Increase)FemaleRace

Caucas ian 'African AmericanHispanicOther

College deg reeor hipherHousehold income >60K

Health care accessLack of insuranceED/p ublic clinicas source of care

'Odds ratio associated with each I point Uicrease in distrust lor tntstj onstandardized scale.

^Among individuals witha

personal doctor.^Reference category,Cl. confidence interval

1.400,92

1.261,37

1.002.232,210.940,420,20

0,861.61

1,12 10 1,750.74 to 1.12

1,11 to 1,430,90 to 2,10

1,11 to 4.481,01 to 4.880,36 to 2,470,27 to 0,650.09 to 0,44

0,42 to 1.730,84 to 3,07

,003. 4 0

70 2.04 (.10)

Race/EthnicityCaucasian* African American 0.53 (,62)Hispanic -0 .3 4 (.77)Other 2,10 (.09)

Health care accessHealth insurance

None* Govemment - 1,95 (.04)Pnvale -2, 04 (.031

Trust in personal physician^Each 1 point increase -0 .4 7 (,001)

Health statusFair/poor vs good/veiyGood/excel lent

2,13 (,02)2,70 (.002)2.28 (.01)1.91 (.0712.18 (.08)

0,33 (.76)0.59 (.62)2.02 (.10)

2.26 (.05)1,81 (.05)

0.46 (.OOt)

2,00 (.01)

'Reference category,'Among individuals witha personal doctor,^Adjusted for gender, educational attainment

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29 6 Armstrong et ai.. Distrust and Health Slatus JGIM

tors that are associated with health outcomes, but there maybe residual differences in socioeconomic status between highand low distrust indiWduals that conlribtite to differences inself-reported health. Furthermore, individual psychologicalfactors, such as cynicism, depression, and locus of controlwere not measured and may contribute to the association be-tween distrust and poor health status.

This sttidy does not prove causality. However, there arcseveral reaso ns to believe health care system distrus t m ay leadto poor health. Distrust has been demonstrated to interferewith tbe effective functioning of many different segments of

society, ' Similarly, health care related distrust may in-terfere with the effective functioning ofthe health care system.by leading to lower rates or delayed utilization of beneiicialhealth care services, such as preventive health care, as well asincreased u se of ttnnece ssary and potentially harmful healthcare services. Prior studies have demonstrated that otherforms of trust and distrust are associated with differences inhealth c are. '^ ' ^-^^ Further mo re, be caus e several studi es sug -gest that distrust may be greatest for research institutions.distrust may preferentially act as a barrier to certain types ofspecialized care, including the use of high volume hospitals orproviders, which may in turn result in lower qualitycare."*' '"^'" Given that distrust of the health care systemwas associated with poor health status even in ihe setting ofrelatively high levels of trust in personal physicians, it is likelythat some of these pathways aiTect bealth care without makingpatients distrust their personal physician.

In contrast io distrLisi ofthe health care system, low trustin one's primary physician was neither prevalent nor associ-ated with health status. The high level of trust in primary phy-sici ans is similar to th e findings of several prio r stu die s. '3- *2However, prior studies have documented modest associations

between trust in primary physicians and heaith behaviors,primari ly adherence to screening and treatment regimens.short-term symptom resolution and. in i study, physicalhealth , "'^'^^''The lack of associa tion between trus t in p er-sonal physicians and health status In this study may reflect aceiling effect in the trvist measure or tbe specific characteris-tics of the study population. It raises the possibility that dif-ferences in health behavior or short-term outcomes in priorstudies may not translate into long-term effects on health. Onepotential explanation for that patients with low trust in pbysi-cians can an d do change their physicia ns. '* th us limiting theduration of tbe "exposure."

We found tha t distru st of the healt h care system is higher

;miong individuals who do not have health insurance and in-dividuals between 31 and 60 years of age. Our clinical expe-rience suggests that patients without health insurance aremore likely to experience conilicts with the health care sys-tem, less continuity of care, and lower quality carefactorsthat may increase distrust. Alternatively, it is possible that in-dividuals who distrust the health care system are less likely toseek health insurance. Younger individuals may have lesshealth care contact and be less likely to have had negative ex-periences. Age differences may reflect generational effects withsome reports suggesting generally high levels of disaffectionamong the Baby Boom generation (individuais 40 to 60 yearsofage).*^

Despite tlie widespread anecd otal r epor ts of high levels ofhealth care related distrust in minority groups, distrust ofthehealth care system did not differ across racial /ethnic groups

in this study, al though ther e was a trend towards greater concerns about dishonesty among African Americans. This lack racial difference was also seen in a national survey of genertrust in physicians but differs from several other studies pbysician trust,'*'' '* our sam ple included relatively few minoity but provided over 90% power to detect a difference of 0standard deviations between African Americans and Cauc

s ians , often considered a relatively small effect size. Furthemore, in unadjusted analyses, the mean level of distrust wslightly lower among African Americans (30.2) and Hispani(30.3) than among Caucasians (30.5). Altbougb this suggesthere are unlikely to be large differences in tbe overall scoron the Health Care System Distrust Scale, significant racidifl^erences may still exist in specific dimensions of distru{e.g.. honesty) or other types of dist rus t. For example , distr uof medical research, may be particularly prevalent among Arican Americans. ''*^ One prior study demonstrated tbat truin hospitals was higher among Caucasians but tmst in insuers was higher among African Americans. ' 'In addition, we dnot create a Spanish version of the questionnaire and th

were unable to include indi\iduals who spoke only Spanish, these individuals are more likely to distrust the bealth casystem, we may have underestimated the prevalence of ditrust among Latinos,

This study ha s several limitations. We use d a single iteto measure health status. However, this item is highly predtive of both disability and mortality in multiple studies,^^'Although we used established scales, t rust and distrust acomplex concepts that are difficult to measure. The imperfnature of our measures may have contributed to the lack associat ion between trust in physicians and bealth s tatu s. Wwere only able to include individualswiih working telephonesIndividuals without telephones may differ from our sample

importani ways, including potentially higher levels of distruFurth erm ore, it is possible lhat non res pon der s differed froresp ond ers. If nonr espo nde rs have higher levels of distru st, may have unde restim ated the prevalence ol' dist rus t of thealth care system in the United States, Alternatively, if spon ders are more likely to have participated bec ause of griances about the beaith care system, we may haoverestimated the prevalence of distrust.

Despite these limitations, th is study provides the first epirical evidence that distrust of the health care system is borelatively common and associated with worse self-reporthealth. Further studies are needed to determine wbether tassociat ion between health care system distrust and health

causal and the pathways by whicb ii may occur. Ultimatethis informaiion Is only useful if distr ust of the health csystem can be modified and health improved.

Larry Hugick, Margie E ngle. and Jonathart Best of PrincetoSurvey Research Associates

Support: Dr, Armstrong is supported by an American Ccer Society Research Schoiar Grant, a Robert Wood JohnsoGeneralist Facuity Schoiar Award and ROI 2689-0) from thNationai Human G enome Research institute.

REFERENCES

1, Coleman J. Foundation o( Social ITieory. C ambrid ge. MA: HEirvard Uvprsity Press: 1990.

2, ZakP, Knack S. Tnial and groiwth. Econ J,2001; 111:295-321.

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JGIM Armstrong ef al..Distrust and Health Stattis 297

3, Tyler T. Why do people rely on others? Social jdentily a nd social aspectsof Lnist, In: Cook K. ed. Trus t in Soriety, Vol, II, New York: Russell SageFoundaUon; 2001:285-307,

4, Dunn J. Trust and polllical agenry, in: Gambetta D, ed. Trusl: Makingand Breaking Coroiigh M. Sharp RR. Restoring and preserving trust In biomedicaresearch, Acad Med, 2002:77:8-14,

41 , Birkmeyer J, Siewers A. Finlayson EV, et al. Hospitai volume andsurgical mortality in the United State s, N Engl J Med, 2002:34 61128-37.

42, Tbom D. Camphell B. Patient-physician trust: an exploratory study, JFam Pract. 1997:44:169-76,

43 , Robinson R. Jackson E. Is trust in others declining in America?An age-period cohort analysis. Soc Sci Res,200! :30:117^5,

44 , Hall MA. Camacbo F. Dugan E, Balkrishnan R. Trust in the medicalprofession: coricepliial and m casurfn icnl issu es. Health Serv Res2002;37:i4i9-3

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