Journal of General Internal Medicine

, Volume 29, Issue 12, pp 1657–1662 | Cite as

Perceived Discrimination, Patient Trust, and Adherence to Medical Recommendations Among Persons with Sickle Cell Disease

  • Carlton HaywoodJr.Email author
  • Sophie Lanzkron
  • Shawn Bediako
  • John J. Strouse
  • Jennifer Haythornthwaite
  • C. Patrick Carroll
  • Marie Diener-West
  • Gladys Onojobi
  • Mary Catherine Beach
  • for the IMPORT Investigators
Original Research



Adults with sickle cell disease (SCD) report experiencing discriminatory behavior from some healthcare providers. The impact of discrimination on health outcomes in SCD, including adherence to physician recommendations, is not known.


Our aim was to evaluate the association between perceived discrimination from healthcare providers and nonadherence to physician recommendations among persons with SCD, and to test the potentially mediating role of patient trust.


Patients with SCD (age 15 years and older) participating in the Improving Patient Outcomes with Respect and Trust (IMPORT) Study.


Perceived discrimination from healthcare providers and reported adherence to physician recommendations were assessed by patient self-report using items from the 2001 Commonwealth Fund Health Survey. Interpersonal trust in medical professionals was assessed using the short form of the Wake Forest Trust in Medical Professionals instrument.


We used a cross-sectional analysis of IMPORT participant data. Multivariable Poisson regression models were used to test the independent association of discrimination with adherence and to test patient trust as a potential mediator.


Among 273 SCD patients with complete data on all variables of interest, patients reporting experiences of discrimination in the healthcare system were 53 % more likely to also report being nonadherent to physician recommendations. Trust in medical professionals appeared to mediate the discrimination/nonadherence relationship, accounting for 50 % of the excess prevalence of nonadherence among those experiencing discrimination.


SCD patient perceptions of discriminatory experiences from healthcare providers are associated with greater nonadherence to physician recommendations, and may be a potential factor contributing to disparities in health and health quality among this patient population. Perceived discrimination appears to affect adherence behaviors through the pathway of patient trust. Improving relationships between healthcare providers and SCD patients may improve the trust that SCD patients have in medical professionals, which in turn may improve other outcomes among this underserved patient population.


sickle cell disease discrimination trust adherence 



The authors thank all members and participants of the IMPORT study for their contributions. The full list of IMPORT investigators includes the authors, as well as the following individuals—Johns Hopkins Investigators: Tanita Woodson, Jordan Wilks, Benjamin Ajiboye, Nina Shah. Howard University Investigators: Abiodun Akintilo; Margaret Fadojutimi-Akinsiku; Patricia O’Neal, MD; Adriana Medina; Seyed- Mehdi Nouraie; John Kwagyan; Kemi Owoyemi; and Ronke Ajala.

Study data were collected and managed using REDCap electronic data capture tools hosted at Johns Hopkins University. REDCap (Research Electronic Data Capture) is a secure, web-based application designed to support data capture for research studies, providing: 1) an intuitive interface for validated data entry; 2) audit trails for tracking data manipulation and export procedures; 3) automated export procedures for seamless data downloads to common statistical packages; and 4) procedures for importing data from external sources.


This study was funded by a grant from the National, Heart, Lung and Blood Institute (NHLBI) (#1R01HL088511-01). Dr. Haywood’s effort was funded by a Career Development Award from the NHLBI (#1K01HL108832-01). Dr. Lanzkron’s effort was funded by a Career Development Award from the NHLBI (#K23HL083089). The funders played no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; or preparation, review, or approval of the manuscript. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Prior Presentations


Conflict of Interest

The authors declare that they do not have a conflict of interest.


  1. 1.
    Brousseau DC, Panepinto JA, Nimmer M, Hoffmann RG. The number of people with sickle-cell disease in the united states: national and state estimates. Am J Hematol. 2010;85(1):77–8.PubMedGoogle Scholar
  2. 2.
    Hassell KL. Population estimates of sickle cell disease in the U.S. Am J Prev Med. 2010;38(4 Suppl):S512–21.PubMedCrossRefGoogle Scholar
  3. 3.
    Kaye CI, Committee on Genetics, Accurso F, et al. Newborn screening fact sheets. Pediatrics. 2006;118(3):e934–63.PubMedCrossRefGoogle Scholar
  4. 4.
    Steinberg MH. Disorders of Hemoglobin: genetics, Pathophysiology, and Clinical Management. 2nd ed. New York: Cambridge University Press; 2009:826.CrossRefGoogle Scholar
  5. 5.
    Lanzkron S, Haywood C Jr, Fagan PJ, Rand CS. Examining the effectiveness of hydroxyurea in people with sickle cell disease. J Health Care Poor Underserved. 2010;21(1):277–86.PubMedCrossRefGoogle Scholar
  6. 6.
    Candrilli SD, O’Brien SH, Ware RE, Nahata MC, Seiber EE, Balkrishnan R. Hydroxyurea adherence and associated outcomes among medicaid enrollees with sickle cell disease. Am J Hematol. 2011;86(3):273–7.PubMedCrossRefGoogle Scholar
  7. 7.
    Osterberg L, Blaschke T. Adherence to medication. N Engl J Med. 2005;353(5):487–97.PubMedCrossRefGoogle Scholar
  8. 8.
    Maxwell K, Streetly A, Bevan D. Experiences of hospital care and treatment seeking for pain from sickle cell disease: qualitative study. BMJ. 1999;318(7198):1585–90.PubMedCentralPubMedCrossRefGoogle Scholar
  9. 9.
    Alleyne J, Thomas VJ. The management of sickle cell crisis pain as experienced by patients and their carers. J Adv Nurs. 1994;19(4):725–32.PubMedCrossRefGoogle Scholar
  10. 10.
    Lattimer L, Haywood C Jr, Lanzkron S, Ratanawongsa N, Bediako SM, Beach MC. Problematic hospital experiences among adult patients with sickle cell disease. J Health Care Poor Underserved. 2010;21(4):1114–23.PubMedCentralPubMedGoogle Scholar
  11. 11.
    Haywood C Jr, Beach MC, Lanzkron S, et al. A systematic review of barriers and interventions to improve appropriate use of therapies for sickle cell disease. J Natl Med Assoc. 2009;101(10):1022–33.PubMedGoogle Scholar
  12. 12.
    Haywood C Jr, Lanzkron S, Ratanawongsa N, et al. The association of provider communication with trust among adults with sickle cell disease. J Gen Intern Med. 2010;25(6):543–8.PubMedCentralPubMedCrossRefGoogle Scholar
  13. 13.
    Haywood C Jr, Lanzkron S, Ratanawongsa N, Bediako SM, Lattimer-Nelson L, Beach MC. Hospital self-discharge among adults with sickle-cell disease (SCD): associations with trust and interpersonal experiences with care. J Hosp Med. 2010;5(5):289–94.PubMedCentralPubMedCrossRefGoogle Scholar
  14. 14.
    Collins KS, Hughes DL, Doty MM, et al. Diverse Communities, Common Concerns: assessing Health Care Quality for Minority Americans. New York: The Commonwealth Fund; 2002.Google Scholar
  15. 15.
    Johnson RL, Saha S, Arbelaez JJ, Beach MC, Cooper LA. Racial and ethnic differences in patient perceptions of bias and cultural competence in health care. J Gen Intern Med. 2004;19(2):101–10.PubMedCentralPubMedCrossRefGoogle Scholar
  16. 16.
    Dugan E, Trachtenberg F, Hall MA. Development of abbreviated measures to assess patient trust in a physician, a health insurer, and the medical profession. BMC Health Serv Res. 2005;5:64.PubMedCentralPubMedCrossRefGoogle Scholar
  17. 17.
    Behrens T, Taeger D, Wellmann J, Keil U. Different methods to calculate effect estimates in cross-sectional studies. A comparison between prevalence odds ratio and prevalence ratio. Methods Inf Med. 2004;43(5):505–9.PubMedGoogle Scholar
  18. 18.
    Cummings P. Methods for estimating adjusted risk ratios. Stata J. 2009;9(2):175–96.Google Scholar
  19. 19.
    Coutinho LM, Scazufca M, Menezes PR. Methods for estimating prevalence ratios in cross-sectional studies. Rev Saude Publica. 2008;42(6):992–8.PubMedCrossRefGoogle Scholar
  20. 20.
    Cummings P. The relative merits of risk ratios and odds ratios. Arch Pediatr Adolesc Med. 2009;163(5):438–45.PubMedCrossRefGoogle Scholar
  21. 21.
    Baron RM, Kenny DA. The moderator-mediator variable distinction in social psychological research: conceptual, strategic, and statistical considerations. J Pers Soc Psychol. 1986;51(6):1173–82.PubMedCrossRefGoogle Scholar
  22. 22.
    StataCorp. Stata Statistical Software: release 13. College Station: StataCorp LP; 2013.Google Scholar
  23. 23.
    Cuffee YL, Hargraves JL, Rosal M, et al. Reported racial discrimination, trust in physicians, and medication adherence among inner-city African Americans with hypertension. Am J Public Health. 2013;103:e55–62.PubMedCentralPubMedCrossRefGoogle Scholar
  24. 24.
    Elder K, Ramamonjiarivelo Z, Wiltshire J, et al. Trust, medication adherence, and hypertension control in southern African American men. Am J Public Health. 2012;102(12):2242–5.PubMedCrossRefGoogle Scholar
  25. 25.
    Saha S, Jacobs EA, Moore RD, Beach MC. Trust in physicians and racial disparities in HIV care. AIDS Patient Care STDS. 2010;24(7):415–20.PubMedCentralPubMedCrossRefGoogle Scholar
  26. 26.
    McClish DK, Penberthy LT, Bovbjerg VE, et al. Health related quality of life in sickle cell patients: the PiSCES project. Health Qual Life Outcomes. 2005;3:50.PubMedCentralPubMedCrossRefGoogle Scholar
  27. 27.
    Rand CS, Wise RA, Nides M, et al. Metered-dose inhaler adherence in a clinical trial. Am Rev Respir Dis. 1992;146(6):1559–64.PubMedCrossRefGoogle Scholar
  28. 28.
    Rand CS, Wise RA. Measuring adherence to asthma medication regimens. Am J Respir Crit Care Med. 1994;149(2 Pt 2):S69–76. discussion S77-8.PubMedCrossRefGoogle Scholar
  29. 29.
    Julius RJ, Novitsky MA Jr, Dubin WR. Medication adherence: a review of the literature and implications for clinical practice. J Psychiatr Pract. 2009;15(1):34–44.PubMedCrossRefGoogle Scholar
  30. 30.
    Balkrishnan R, Jayawant SS. Medication adherence research in populations: measurement issues and other challenges. Clin Ther. 2007;29(6):1180–3.PubMedCrossRefGoogle Scholar
  31. 31.
    Haynes RB, Taylor DW, Sackett DL, Gibson ES, Bernholz CD, Mukherjee J. Can simple clinical measurements detect patient noncompliance? Hypertension. 1980;2(6):757–64.PubMedCrossRefGoogle Scholar
  32. 32.
    Farmer KC. Methods for measuring and monitoring medication regimen adherence in clinical trials and clinical practice. Clin Ther. 1999;21(6):1074,90. discussion 1073.CrossRefGoogle Scholar
  33. 33.
    Zempsky WT. Treatment of sickle cell pain: fostering trust and justice. JAMA. 2009;302(22):2479–80.PubMedCrossRefGoogle Scholar
  34. 34.
    Elander J, Beach MC, Haywood C. Respect, trust, and the management of sickle cell disease pain in hospital: comparative analysis of concern-raising behaviors, preliminary model, and agenda for international collaborative research to inform practice. Ethn Health. 2011;16(4–5):405–21.PubMedCentralPubMedCrossRefGoogle Scholar

Copyright information

© Society of General Internal Medicine 2014

Authors and Affiliations

  • Carlton HaywoodJr.
    • 1
    • 5
    Email author
  • Sophie Lanzkron
    • 1
  • Shawn Bediako
    • 2
  • John J. Strouse
    • 1
  • Jennifer Haythornthwaite
    • 1
  • C. Patrick Carroll
    • 1
  • Marie Diener-West
    • 3
  • Gladys Onojobi
    • 4
  • Mary Catherine Beach
    • 1
    • 5
  • for the IMPORT Investigators
  1. 1.The Johns Hopkins School of MedicineBaltimoreUSA
  2. 2.The University of Maryland, Baltimore CountyBaltimore CountyUSA
  3. 3.The Johns Hopkins Bloomberg School of Public HealthBaltimoreUSA
  4. 4.Howard University HospitalWashingtonUSA
  5. 5.The Welch Center for Prevention, Epidemiology, and Clinical ResearchThe Johns Hopkins Berman Institute of BioethicsBaltimoreUSA

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