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



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.

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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.

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

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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).

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  • sickle cell disease
  • discrimination
  • trust
  • adherence