AIDS and Behavior

, Volume 23, Issue 10, pp 2859–2869 | Cite as

Physician Mistrust, Medical System Mistrust, and Perceived Discrimination: Associations with HIV Care Engagement and Viral Load

  • Ahnalee M. BrincksEmail author
  • Karen Shiu-Yee
  • Lisa R. Metsch
  • Carlos del Rio
  • Robert P. Schwartz
  • Petra Jacobs
  • Georgina Osorio
  • James L. Sorensen
  • Daniel J. Feaster
Original Paper


Medical mistrust is an important risk factor for many health outcomes. For individuals with HIV and substance use co-morbidities, mistrust may influence engagement with health care, and affect overall health and transmission risk. Medical mistrust can be measured by an individual’s mistrust of his/her physician, or mistrust of the medical system. This study examined both types of mistrust among 801 substance-using individuals with uncontrolled HIV infection. The aims were to determine how physician mistrust, medical system mistrust, and discrimination experiences were associated with engagement in HIV primary care. Findings indicated higher levels of physician mistrust, but not medical system mistrust, were associated with a longer time since the last visit to an HIV provider. Longer time since seeing an HIV care provider was associated with higher viral load. This study refines our understanding of the relationship between mistrust and HIV care engagement for a large, diverse sample of substance-using individuals.


Medical mistrust HIV Discrimination Health care engagement 



This study was funded by the National Institute on Drug Abuse (U10DA013720, UG1DA013720, U10DA013035, UG1DA013035, U10DA013034, UG1DA013034, U10DA013727, UG1DA013727, U10DA020024, UG1DA020024, U10DA013732, UG1DA013732, U10DA015831, UG1DA015831, U10DA015815, UG1DA015815, U10DA020036, U10DA013043, U10DA013045, and T32-DA037801). We also acknowledge support from the Emory University CFAR (P30AI050409) and the University of Miami CFAR (P30A1073961).

Compliance with Ethical Standards

Conflict of interest

Dr. Schwartz provides consultation to Verily Life Sciences. All other authors declare that they have no conflicts of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.


  1. 1.
    White House Office of National AIDS Policy. National HIV/AIDS strategy for the United States: Updated to 2020
  2. 2.
    Centers for Disease Control and Prevention. Understanding the HIV care continuum. Centers for Disease Control and Prevention; 2016.Google Scholar
  3. 3.
    Benítez-Gutiérrez L, Soriano V, Requena S, Arias A, Barreiro P, de Mendoza C. Treatment and prevention of HIV infection with long-acting antiretrovirals. Expert Rev Clin Pharmacol. 2018;11(5):507–17.PubMedGoogle Scholar
  4. 4.
    Cohen MS, Chen YQ, McCauley M, Gamble T, Hosseinipour MC, Kumarasamy N, et al. Prevention of HIV-1 infection with early antiretroviral therapy. N Engl J Med. 2011;365(6):493–505.PubMedPubMedCentralGoogle Scholar
  5. 5.
    Ford N, Ball A, Baggaley R, Vitoria M, Low-Beer D, Penazzato M, et al. The WHO public health approach to HIV treatment and care: looking back and looking ahead. Lancet Infect Dis. 2018;18(3):e76–86.PubMedGoogle Scholar
  6. 6.
    Grinsztejn B, Hosseinipour MC, Ribaudo HJ, Swindells S, Eron J, Chen YQ, et al. Effects of early versus delayed initiation of antiretroviral treatment on clinical outcomes of HIV-1 infection: results from the phase 3 HPTN 052 randomised controlled trial. Lancet Infect Dis. 2014;14(4):281–90.PubMedPubMedCentralGoogle Scholar
  7. 7.
    Hoos D, El-Sadr WM, Dehne KL. Getting the balance right: scaling-up treatment and prevention. Glob Public Health. 2017;12(4):483–97.PubMedGoogle Scholar
  8. 8.
    Rodger A, et al. Risk of HIV transmission through condomless sex in gay couples with suppressive ART: The PARTNER2 study expanded results in gay men. In: 22nd International AIDS Conference, Amsterdam 2018.Google Scholar
  9. 9.
    Rodger AJ, Cambiano V, Bruun T, Vernazza P, Collins S, van Lunzen J, et al. Sexual activity without condoms and risk of HIV transmission in serodifferent couples when the HIV-positive partner is using suppressive antiretroviral therapy. JAMA. 2016;316(2):171–81.PubMedPubMedCentralGoogle Scholar
  10. 10.
    Rendina HJ, Parsons JT. Factors associated with perceived accuracy of the Undetectable = Untransmittable slogan among men who have sex with men: Implications for messaging scale-up and implementation. J Int AIDS Soc. 2018;21(1):e25055.PubMedCentralGoogle Scholar
  11. 11.
    Altice FL, Kamarulzaman A, Soriano VV, Schechter M, Friedland GH. Treatment of medical, psychiatric, and substance-use comorbidities in people infected with HIV who use drugs. Lancet. 2010;376(9738):367–87.PubMedPubMedCentralGoogle Scholar
  12. 12.
    Lucas GM. Substance abuse, adherence with antiretroviral therapy, and clinical outcomes among HIV-infected individuals. Life Sci. 2011;88(21–22):948–52.PubMedGoogle Scholar
  13. 13.
    Swan H. Different Patterns of Drug Use and Barriers to Continuous HIV Care Post-Incarceration. J Drug Issues. 2015;45(1):38–52.PubMedGoogle Scholar
  14. 14.
    Giordano TP, Visnegarwala F, White AC, Troisi CL, Frankowski RF, Hartman CM, et al. Patients referred to an urban HIV clinic frequently fail to establish care: factors predicting failure. AIDS Care. 2005;17(6):773–83.PubMedGoogle Scholar
  15. 15.
    Lourenço L, Colley G, Nosyk B, Shopin D, Montaner JS, Lima VD, et al. High levels of heterogeneity in the HIV cascade of care across different population subgroups in British Columbia, Canada. PLoS ONE. 2014;9(12):e115277.PubMedPubMedCentralGoogle Scholar
  16. 16.
    Rebeiro PF, Abraham AG, Horberg MA, Althoff KN, Yehia BR, Buchacz K, et al. Sex, race, and HIV risk disparities in discontinuity of HIV care after antiretroviral therapy initiation in the United States and Canada. AIDS Patient Care STDS. 2017;31(3):129–44.PubMedPubMedCentralGoogle Scholar
  17. 17.
    Sohler NL, Wong MD, Cunningham WE, Cabral H, Drainoni ML, Cunningham CO. Type and pattern of illicit drug use and access to health care services for HIV-infected people. AIDS Patient Care STDS. 2007;21(Suppl 1):S68–76.PubMedGoogle Scholar
  18. 18.
    Gómez CA, Tat SA, Allen D, Gordon D, Browe D. What will it take to end the HIV/AIDS epidemic? Linking the most disenfranchised into care through outreach. AIDS Patient Care STDS. 2017;31(3):122–8.PubMedGoogle Scholar
  19. 19.
    Tobias CR, Cunningham W, Cabral HD, Cunningham CO, Eldred L, Naar-King S, et al. Living with HIV but without medical care: barriers to engagement. AIDS Patient Care STDS. 2007;21(6):426–34.PubMedGoogle Scholar
  20. 20.
    Rachlis B, Burchell AN, Gardner S, Light L, Raboud J, Antoniou T, et al. Social determinants of health and retention in HIV care in a clinical cohort in Ontario, Canada. AIDS Care. 2017;29(7):828–37.PubMedGoogle Scholar
  21. 21.
    Remien RH, Bauman LJ, Mantell JE, Tsoi B, Lopez-Rios J, Chhabra R, et al. Barriers and facilitators to engagement of vulnerable populations in HIV primary care in New York City. J Acquir Immune Defic Syndr. 2015;69(Suppl 1):S16–24.PubMedPubMedCentralGoogle Scholar
  22. 22.
    Ulett KB, Willig JH, Lin HY, Routman JS, Abroms S, Allison J, et al. The therapeutic implications of timely linkage and early retention in HIV care. AIDS Patient Care STDS. 2009;23(1):41–9.PubMedPubMedCentralGoogle Scholar
  23. 23.
    Gardner LI, Marks G, Strathdee SA, Loughlin AM, Del Rio C, Kerndt P, et al. Faster entry into HIV care among HIV-infected drug users who had been in drug-use treatment programs. Drug Alcohol Depend. 2016;165:15–21.PubMedGoogle Scholar
  24. 24.
    Ostertag S, Wright BRE, Broadhead RS, Altice FL. Trust and other characteristics associated with health care utilization by injection drug users. J Drug Issues. 2006;36(4):953–74.Google Scholar
  25. 25.
    McKnight C, Shumway M, Masson CL, Pouget ER, Jordan AE, Des Jarlais DC, et al. Perceived discrimination among racial and ethnic minority drug users and the association with health care utilization. J Ethn Subst Abuse. 2017;16(4):404–19.PubMedPubMedCentralGoogle Scholar
  26. 26.
    Fairchild AL, Bayer R. Uses and abuses of Tuskegee. Science. 1999;284(5416):919–21.PubMedGoogle Scholar
  27. 27.
    Corbie-Smith G, Thomas SB, St George DM. Distrust, race, and research. Arch Intern Med. 2002;162(21):2458–63.PubMedGoogle Scholar
  28. 28.
    Gamble VN. A legacy of distrust: African Americans and medical research. Am J Prev Med. 1993;9(6 Suppl):35–8.PubMedGoogle Scholar
  29. 29.
    Gamble VN. Under the shadow of Tuskegee: African Americans and health care. Am J Public Health. 1997;87(11):1773–8.PubMedPubMedCentralGoogle Scholar
  30. 30.
    Ozawa S, Sripad P. How do you measure trust in the health system? A systematic review of the literature. Soc Sci Med. 2013;91:10–4.PubMedGoogle Scholar
  31. 31.
    Earl TR, Beach MC, Lombe M, Korthuis PT, Sharp VL, Cohn JA, et al. Race, relationships and trust in providers among Black patients with HIV/AIDS. Soc Work Res. 2013;37(3):219–26.PubMedPubMedCentralGoogle Scholar
  32. 32.
    Beer L, Fagan JL, Garland P, Valverde EE, Bolden B, Brady KA, et al. Medication-related barriers to entering HIV care. AIDS Patient Care STDS. 2012;26(4):214–21.PubMedPubMedCentralGoogle Scholar
  33. 33.
    Gwadz M, Applegate E, Cleland C, Leonard NR, Wolfe H, Salomon N, et al. HIV-infected individuals who delay, decline, or discontinue antiretroviral therapy: comparing clinic- and peer-recruited cohorts. Front Public Health. 2014;2:81.PubMedPubMedCentralGoogle Scholar
  34. 34.
    Kalichman SC, Eaton L, Kalichman MO, Cherry C. Medication beliefs mediate the association between medical mistrust and antiretroviral adherence among African Americans living with HIV/AIDS. J Health Psychol. 2017;22(3):269–79.PubMedGoogle Scholar
  35. 35.
    Schneider J, Kaplan SH, Greenfield S, Li W, Wilson IB. Better physician–patient relationships are associated with higher reported adherence to antiretroviral therapy in patients with HIV infection. J Gen Intern Med. 2004;19(11):1096–103.PubMedPubMedCentralGoogle Scholar
  36. 36.
    Thrasher AD, Earp JA, Golin CE, Zimmer CR. Discrimination, distrust, and racial/ethnic disparities in antiretroviral therapy adherence among a national sample of HIV-infected patients. J Acquir Immune Defic Syndr. 2008;49(1):84–93.PubMedPubMedCentralGoogle Scholar
  37. 37.
    Mizuno Y, Wilkinson JD, Santibanez S, Dawson Rose C, Knowlton A, Handley K, et al. Correlates of health care utilization among HIV-seropositive injection drug users. AIDS Care. 2006;18(5):417–25.PubMedGoogle Scholar
  38. 38.
    Holtzman CW, Shea JA, Glanz K, Jacobs LM, Gross R, Hines J, et al. Mapping patient-identified barriers and facilitators to retention in HIV care and antiretroviral therapy adherence to Andersen’s Behavioral Model. AIDS Care. 2015;27(7):817–28.PubMedPubMedCentralGoogle Scholar
  39. 39.
    LaVeist TA, Nickerson KJ, Bowie JV. Attitudes about racism, medical mistrust, and satisfaction with care among African American and white cardiac patients. Med Care Res Rev. 2000;57(Suppl 1):146–61.PubMedGoogle Scholar
  40. 40.
    LaVeist TA, Isaac LA, Williams KP. Mistrust of health care organizations is associated with underutilization of health services. Health Serv Res. 2009;44(6):2093–105.PubMedPubMedCentralGoogle Scholar
  41. 41.
    Dale SK, Bogart LM, Wagner GJ, Galvan FH, Klein DJ. Medical mistrust is related to lower longitudinal medication adherence among African-American males with HIV. J Health Psychol. 2016;21(7):1311–21.PubMedGoogle Scholar
  42. 42.
    Pellowski JA, Price DM, Allen AM, Eaton LA, Kalichman SC. The differences between medical trust and mistrust and their respective influences on medication beliefs and ART adherence among African-Americans living with HIV. Psychol Health. 2017;32(9):1127–39.PubMedGoogle Scholar
  43. 43.
    Galvan FH, Bogart LM, Klein DJ, Wagner GJ, Chen YT. Medical mistrust as a key mediator in the association between perceived discrimination and adherence to antiretroviral therapy among HIV-positive Latino men. J Behav Med. 2017;40(5):784–93.PubMedPubMedCentralGoogle Scholar
  44. 44.
    Eaton LA, Driffin DD, Kegler C, Smith H, Conway-Washington C, White D, et al. The role of stigma and medical mistrust in the routine health care engagement of black men who have sex with men. Am J Public Health. 2015;105(2):e75–82.PubMedPubMedCentralGoogle Scholar
  45. 45.
    Cunningham CO, Sohler NL, Korin L, Gao W, Anastos K. HIV status, trust in health care providers, and distrust in the health care system among Bronx women. AIDS Care. 2007;19(2):226–34.PubMedGoogle Scholar
  46. 46.
    Krause DD, May WL. Is it a trust issue? Factors that influence trust for persons living with HIV/AIDS. Health Promot Pract. 2016;17(5):711–21.PubMedGoogle Scholar
  47. 47.
    Graham JL, Shahani L, Grimes RM, Hartman C, Giordano TP. The influence of trust in physicians and trust in the healthcare system on linkage, retention, and adherence to HIV care. AIDS Patient Care STDS. 2015;29(12):661–7.PubMedPubMedCentralGoogle Scholar
  48. 48.
    Metsch LR, Feaster DJ, Gooden L, Matheson T, Stitzer M, Das M, et al. Effect of patient navigation with or without financial incentives on viral suppression among hospitalized patients with HIV infection and substance use: a randomized clinical trial. JAMA. 2016;316(2):156–70.PubMedPubMedCentralGoogle Scholar
  49. 49.
    Thompson HS, Valdimarsdottir HB, Winkel G, Jandorf L, Redd W. The Group-Based Medical Mistrust Scale: psychometric properties and association with breast cancer screening. Prev Med. 2004;38(2):209–18.PubMedGoogle Scholar
  50. 50.
    Bush K, Kivlahan DR, McDonell MB, Fihn SD, Bradley KA. The AUDIT alcohol consumption questions (AUDIT-C): an effective brief screening test for problem drinking. Ambulatory Care Quality Improvement Project (ACQUIP). alcohol use disorders identification test. Arch Intern Med. 1998;158(16):1789–95.PubMedGoogle Scholar
  51. 51.
    Conigrave KM, Hall WD, Saunders JB. The AUDIT questionnaire: choosing a cut-off score. Alcohol use disorder identification test. Addiction. 1995;90(10):1349–56.PubMedGoogle Scholar
  52. 52.
    Skinner HA. The drug abuse screening test. Addict Behav. 1982;7(4):363–71.PubMedGoogle Scholar
  53. 53.
    Haun J, Noland-Dodd V, Varnes J, Graham-Pole J, Rienzo B, Donaldson P. Testing the BRIEF health literacy screening tool. Federal Pract. 2009;26(12):24–31.Google Scholar
  54. 54.
    Cunningham WE, Hays RD, Williams KW, Beck KC, Dixon WJ, Shapiro MF. Access to medical care and health-related quality of life for low-income persons with symptomatic human immunodeficiency virus. Med Care. 1995;33(7):739–54.PubMedGoogle Scholar
  55. 55.
    Hu L, Bentler PM. Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives. Struct Equ Model. 1999;6(1):1–55.Google Scholar
  56. 56.
    Brown TA. Confirmatory factor analysis for applied research. New York: Guilford Press; 2006. p. 475.Google Scholar
  57. 57.
    Enders CK, Bandalos DL. The relative performance of full information maximum likelihood estimation for missing data in structural equation models. Struct Equ Model. 2001;8(3):430–57.Google Scholar
  58. 58.
    Muthén LK, Muthén BO. 1998–2012. Mplus user’s guide. Los Angeles, CA: Muthén & Muthén; 1998.Google Scholar
  59. 59.
    Schuster MA, Collins R, Cunningham WE, Morton SC, Zierler S, Wong M, et al. Perceived discrimination in clinical care in a nationally representative sample of HIV-infected adults receiving health care. J Gen Intern Med. 2005;20(9):807–13.PubMedPubMedCentralGoogle Scholar
  60. 60.
    Wingood GM, DiClemente RJ, Mikhail I, McCree DH, Davies SL, Hardin JW, Peterson SH, Hook EW, Saag M. HIV discrimination and the health of women living with HIV. Women Health. 2007;46(2–3):99–112.PubMedGoogle Scholar
  61. 61.
    Bird ST, Bogart LM, Delahanty DL. Health-related correlates of perceived discrimination in HIV care. AIDS Patient care and STDs. 2004;18(1):19–26.PubMedGoogle Scholar
  62. 62.
    Mayrl D, Saperstein A. When white people report racial discrimination: the role of region, religion, and politics. Soc Sci Res. 2013;42(3):742–54.PubMedGoogle Scholar
  63. 63.
    Stainback K, Irvin M. Workplace racial composition, perceived discrimination, and organizational attachment. Soc Sci Res. 2012;41(3):657–70.PubMedGoogle Scholar
  64. 64.
    Crawford TN, Sanderson WT, Thornton A. Impact of poor retention in HIV medical care on time to viral load suppression. J Int Assoc Provid AIDS Care. 2014;13(3):242–9.PubMedGoogle Scholar
  65. 65.
    Walburn A, Swindells S, Fisher C, High R, Islam KM. Missed visits and decline in CD4 cell count among HIV-infected patients: a mixed method study. Int J Infect Dis. 2012;16(11):e779–85.PubMedGoogle Scholar
  66. 66.
    Dawson-Rose C, Cuca YP, Webel AR, Solís Báez SS, Holzemer WL, Rivero-Méndez M, et al. Building trust and relationships between patients and providers: an essential complement to health literacy in HIV care. J Assoc Nurses AIDS Care. 2016;27(5):574–84.PubMedPubMedCentralGoogle Scholar
  67. 67.
    Sohler NL, Fitzpatrick LK, Lindsay RG, Anastos K, Cunningham CO. Does patient–provider racial/ethnic concordance influence ratings of trust in people with HIV infection? AIDS Behav. 2007;11(6):884–96.PubMedGoogle Scholar
  68. 68.
    Murray B, McCrone S. An integrative review of promoting trust in the patient-primary care provider relationship. J Adv Nurs. 2015;71(1):3–23.PubMedGoogle Scholar
  69. 69.
    Epstein RM, Duberstein PR, Fenton JJ, Fiscella K, Hoerger M, Tancredi DJ, et al. Effect of a patient-centered communication intervention on oncologist-patient communication, quality of life, and health care utilization in advanced cancer: the VOICE randomized clinical trial. JAMA Oncol. 2017;3(1):92–100.PubMedPubMedCentralGoogle Scholar
  70. 70.
    Thom DH, Hessler D, Willard-Grace R, Bodenheimer T, Najmabadi A, Araujo C, et al. Does health coaching change patients’ trust in their primary care provider? Patient Educ Couns. 2014;96(1):135–8.PubMedGoogle Scholar
  71. 71.
    Gordon HS, Pugach O, Berbaum ML, Ford ME. Examining patients’ trust in physicians and the VA healthcare system in a prospective cohort followed for six-months after an exacerbation of heart failure. Patient Educ Couns. 2014;97(2):173–9.PubMedGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • Ahnalee M. Brincks
    • 1
    Email author
  • Karen Shiu-Yee
    • 2
  • Lisa R. Metsch
    • 2
  • Carlos del Rio
    • 3
  • Robert P. Schwartz
    • 4
  • Petra Jacobs
    • 5
  • Georgina Osorio
    • 6
  • James L. Sorensen
    • 7
  • Daniel J. Feaster
    • 8
  1. 1.Department of Epidemiology and BiostatisticsMichigan State UniversityEast LansingUSA
  2. 2.Department of Sociomedical SciencesColumbia UniversityNew YorkUSA
  3. 3.Department of Global HealthEmory UniversityAtlantaUSA
  4. 4.Friends Research InstituteBaltimoreUSA
  5. 5.National Institute on Drug AbuseBethesdaUSA
  6. 6.Icahn School of Medicine at Mount SinaiNew YorkUSA
  7. 7.Department of Psychiatry at the University of California San FranciscoSan FranciscoUSA
  8. 8.Department of Public Health SciencesUniversity of Miami Miller School of MedicineMiamiUSA

Personalised recommendations