Study: Patients With SCD Report Discrimination Based on Race, Pain, and Other Factors

People with sickle cell disease (SCD) say a lack of understanding, poor communication, and stigma all act as barriers between themselves and their health care providers, according to a new qualitative, thematic analysis.

The report, based on 6 focus groups and 18 participants, includes recommendations to help remove those barriers.¹ Among the most important, the study’s authors said, is better ongoing training for providers who care for patients with SCD. The study was published in the Journal of Racial and Ethnic Disparities.

Patients with SCD have reportedly felt stigmatized due to their race, pain, and more | image credit: Andrey Popov - stock.adobe.com

An estimated 100,000 people in the United States have SCD. And while the disease can affect people of all ethnic groups, about 90% of the people in the US with SCD are Black, wrote corresponding author Ariadna Forray, MD, of the Yale School of Medicine, and colleagues.

They noted that newer gene therapies may soon change the standard of care for SCD. In the meantime, though, they said management of SCD typically “requires pharmacological pain treatment, frequent hospitalizations, and the use of the emergency department.”

Yet, when patients seek medication to deal with recurrent episodes of severe pain, they often report feeling stigmatized. Forray and colleagues said patients experiencing acute pain are sometimes labeled as “drug-seeking.”

“This often leads to health-related stigma and persists despite research showing opiate overdose is less common in individuals with SCD compared with other chronic pain syndromes,” Forray and colleagues wrote.²

That stigma is one reason people with SCD are at risk of depression. One study found people with SCD had higher levels of depressive symptoms than the overall population, and that many patients with SCD are likely to go undiagnosed or untreated.³

In an attempt to better understand how people with SCD perceive their healthcare experiences, the investigators conducted 6 focus groups between October 2018 and March 2019.¹ The focus groups were composed of people who received care at a specialized SCD clinic at a single US teaching hospital. A total of 18 patients participated, including 10 males and 8 females. Most (83%) identified as Black/African American. Their ages ranged from 20-68 years.

Forray and colleagues found a number of themes and subthemes. When asked about discrimination, patients said they perceived discrimination for a variety of reasons. In addition to the perception that they were treated as “drug-seeking,” participants also said they felt discriminated against on the basis of SCD being associated with Black patients or people of color, and based on the perception that SCD is a costly disease.

In terms of the physician/patient relationships, the authors found that patients had variable levels of trust with their providers. Open, straightforward discussions boosted trust levels; but perceptions of disrespect, feeling unheard, and being the subject of assumptions made patients less likely to trust their providers, the authors found.

Overall satisfaction with care likewise varied from patient to patient, though Forray and colleagues found that patients were more satisfied when providers acknowledged their pain, let patients speak for themselves, and listened with understanding.

The focus groups told investigators they believed one way to solve the problem would be to increase educational opportunities for providers treating patients with SCD, including opportunities for physicians to intentionally hear feedback from patients and insights from SCD specialists.

“Providers should acknowledge patients’ frustrations, including with personal factors such as bias and frequent transitions of care as well as environmental factors such as overcrowding and noise, and their individual concerns should be addressed,” Forray and colleagues wrote. “Patients’ pain should be treated in a timely manner, through the use of medications, IV fluids, oxygen, and heated blankets.”

They added that hospitals should ensure their emergency departments follow management recommendations, such as those from the National Heart, Lung, and Blood Institute regarding recommended timelines between arrival and the first administration of pain medication. Social workers can also be helpful with issues such as insurance, employment, and community connections, the authors said.

The investigators noted that their study was based on the perceptions of a small number of patients from a single clinic and health system. Still, they said the feedback received in the focus groups are consistent with previous research and can inform the way clinics and providers interact with patients.

References:

1. Crusto CA, Kaufman JS, Harvanek ZM, Nelson C, Forray A. Perceptions of care and perceived discrimination: a qualitative assessment of adults living with sickle cell disease. J Racial Ethn Health Disparities. Published online September 3, 2024. doi:10.1007/s40615-024-02153-3
2. Ballas SK, Kanter J, Agodoa I, et al. Opioid utilization patterns in United States individuals with sickle cell disease. Am J Hematol. 2018;93(10):E345-E347. doi:10.1002/ajh.25233
3. Jenerette C, Funk M, Murdaugh C. Sickle cell disease: a stigmatizing condition that may lead to depression. Issues Ment Health Nurs. 2005;26(10):1081-1101. doi:10.1080/01612840500280745