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

Journal of General Internal Medicine volume 29, pages 1657–1662 (2014)Cite this article

ABSTRACT

BACKGROUND

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.

OBJECTIVE

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.

PARTICIPANTS

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

MAIN MEASURES

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.

DESIGN

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.

KEY RESULTS

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.

CONCLUSION

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.

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Contributors

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.

Funders

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

None.

Conflict of Interest

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

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Authors and Affiliations

  1. The Johns Hopkins School of Medicine, Baltimore, MD, USA

    Carlton Haywood Jr. PhD, Sophie Lanzkron MD, John J. Strouse MD, Jennifer Haythornthwaite PhD, C. Patrick Carroll MD & Mary Catherine Beach MD

  2. The University of Maryland, Baltimore County, Baltimore County, MD, USA

    Shawn Bediako PhD

  3. The Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

    Marie Diener-West PhD

  4. Howard University Hospital, Washington, DC, USA

    Gladys Onojobi MD

  5. The Welch Center for Prevention, Epidemiology, and Clinical Research, The Johns Hopkins Berman Institute of Bioethics, 1809 Ashland Avenue Deering Hall, Room 210, Baltimore, MD, 21205, USA

    Carlton Haywood Jr. PhD & Mary Catherine Beach MD

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  1. Carlton Haywood Jr. PhD
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  2. Sophie Lanzkron MD
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  3. Shawn Bediako PhD
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  4. John J. Strouse MD
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  5. Jennifer Haythornthwaite PhD
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  6. C. Patrick Carroll MD
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  7. Marie Diener-West PhD
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  8. Gladys Onojobi MD
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  9. Mary Catherine Beach MD
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for the IMPORT Investigators

Corresponding author

Correspondence to Carlton Haywood Jr. PhD.

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Haywood, C., Lanzkron, S., Bediako, S. et al. Perceived Discrimination, Patient Trust, and Adherence to Medical Recommendations Among Persons with Sickle Cell Disease. J GEN INTERN MED 29, 1657–1662 (2014). https://doi.org/10.1007/s11606-014-2986-7

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  • DOI: https://doi.org/10.1007/s11606-014-2986-7

KEY WORDS

  • sickle cell disease
  • discrimination
  • trust
  • adherence