Sickle Cell Disease (SCD) is the most common genetic condition detected by newborn screening in the United States – a physically devastating and painful illness affecting an estimated 100,000 individuals currently nationwide. Problems of a lack of a universal cure and few treatment options are compounded by the fact that many patients don’t take available medications correctly, says Carlton Haywood Jr., lead author of a new study looking at the root of this vexing issue.


Among the first studies to quantitatively examine SCD patient non-adherence to physician recommendations, the results show that of 273 adult SCD patients, those reporting experiences of discrimination in the healthcare system were 53% more likely to also report not following physician recommendations. The results are published in the Journal of General Internal Medicine (JGIM), published by Springer.


“This study provides real evidence that, in addition to research into new treatments for Sickle Cell Disease, it is crucial to develop methods for improving trust and interpersonal relationships between patients and healthcare professionals,” says Haywood, a faculty member at the Berman Institute of Bioethics and Division of Hematology at Johns Hopkins, who both studies and suffers from SCD.


Haywood explains that the unfortunate combination of SCD’s predominance in people of African descent, the necessity of strong pain medications to treat the disease, and the history of race relations in the United States complicate and in some cases inhibit the physician-patient relationship that is essential to effective management of the illness. The study notes that even among patients who did adhere to physician recommendations, over 40% reported having at least one experience of discrimination in the prior 2-year period, which Haywood and his colleagues conclude “suggests a high underlying magnitude of perceived discrimination among SCD patients overall.”


“There are complex factors that inhibit effective management of Sickle Cell Disease, including patients’ trust in their physicians and taking medication properly,” Haywood says. “Studying the root of these issues and working to resolve them will help to make the best use of the tools we do have to combat Sickle Cell Disease, relieving suffering and saving lives.”
The study was a collaboration between scholars at the Berman Institute, School of Medicine and Bloomberg School of Public Health at Johns Hopkins, as well as Howard University Hospital and the University of Maryland, Baltimore County.


In summing up their study, Haywood and his colleagues conclude, “The interpersonal problems in healthcare interactions experienced by persons with SCD are of significant, intrinsic concern given the implications of what it means to treat patients with respect and trust, as well as what it means to adhere to principles of justice in the healthcare system… In order to improve SCD patient trust, it is important for the healthcare system and healthcare providers to demonstrate that they are worthy of the SCD patient’s trust.”


The study was funded by a grant from the National, Heart, Lung and Blood Institute (NHLBI) of the National Institutes of Health (#1R01HL088511-01), and two Career Development Awards from the NHLBI (#1K01HL108832-01 and K23HL083089). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.


The Journal of General Internal Medicine is the official publication of the Society of General Internal Medicine.


Perceived Discrimination, Patient Trust, and Adherence to Medical Recommendations Among Persons with Sickle Cell Disease,”
Carlton Haywood Jr. PhD, Sophie Lanzkron MD, Shawn Bediako PhD, John J. Strouse MD, Jennifer Haythornthwaite PhD, C. Patrick Carroll MD, Marie Diener-West PhD, Gladys Onojobi MD, Mary Catherine Beach MD. Journal of General Internal Medicine, Published Online, September 10, 2014.


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About the Johns Hopkins Berman Institute of Bioethics
One of the largest bioethics centers in the world, the Johns Hopkins Berman Institute of Bioethics is the home for collaborative scholarship and teaching on the ethics of clinical practice, public health and biomedical science at Johns Hopkins University. Since 1995, the Institute has worked with governmental agencies, nongovernmental and private sector organizations to address and resolve ethical issues. Institute faculty members represent diverse disciplines including medicine, nursing, law, philosophy, public health and the social sciences.

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Carlton Haywood Jr.
Leah Ramsay

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