Physician Mistrust and Discrimination in Sarcoidosis: It’s Real and It’s Prevalent

Sarcoidosis is heterogeneous in presentation (1). However, the risk for developing the disease, severity of disease, and outcomes for patients have been strongly tied to socioeconomic status and income (2–4). In addition, Black individuals in the United States experience worse sarcoidosis outcomes than other groups (2, 3, 5, 6). ACCESS (A Case-Control Etiologic Study of Sarcoidosis) was the first study to demonstrate that low-income (total household income <$20,000) cases were more likely to be Black and female and encounter barriers to medical care. Individuals who were low-income were also less likely to have normal spirometric values and more likely to have multiorgan involvement (4). The connection between income, race, and outcomes was also examined using the Sarcoidosis Advanced Registry for Cures, a patient-reported data set from over 2,000 patients with sarcoidosis. Patients with incomes below $35,000 and African Americans had a higher risk of corticosteroid-related comorbidity (3). How exactly income impacts the disease is not clear (7).

In this issue of AnnalsATS, Harper and colleagues (pp. 1832–1838) used a focus group approach to elucidate patients’ perspectives on their disease and sought to determine whether their needs differed based on income (8). They did this by focusing on a sarcoidosis cohort that required systemic therapy. Focus groups were divided between those who lived in low-income and high-income zip codes. As expected, low-income patients were predominately Black and the high-income patients were predominantly White; both had significant disease burden as defined by extrapulmonary manifestations and the need for treatment. Despite differences in income and race makeup, both groups of patients expressed a high burden of sarcoidosis, significant barriers to care, and similar self-empowerment strategies. Most disheartening was the fact that both groups broadly expressed mistrust in their healthcare providers and the medical community. Mistrust in their doctor crossed divides of income and race and impeded their care.

The role of the doctor is changing. In the past, the doctor was the patient’s source of medical knowledge, the diagnostic approach, and the treatment plan. All of these roles now face competition from developments in communication, social media, big data manipulation, and artificial intelligence. For now, one function of the doctor seems impervious to attack: to function as an advocate for the patient. It is the doctor who can assess a patient’s wishes and align them with a treatment plan. This function requires clear communication between the patient and the doctor, which is interdependent with trust. Harper and colleagues identified several issues leading to physician mistrust, including that their providers were not adequately knowledgeable about sarcoidosis or failed to appreciate the importance of functional impairment and psychosocial issues and, in the case of living in low-income areas, a belief that their physicians were displaying race and income discrimination.

Coping mechanisms included nonadherence to treatment recommendations. Other studies have also confirmed the connection between lack of confidence in the care they are receiving and adherence to medications and follow-up (9).

As mentioned, the only difference found in this study between the high- and low-income groups was that the low-income cohort, composed mostly of Black individuals, expressed increased rates of perceived discrimination from the healthcare system. These results confirm that discrimination based on race is pervasive in medicine (10). In diseases like sarcoidosis where the incidence in the United States is highest in Black individuals, addressing systemic racial biases is imperative (11, 12).

For patients with sarcoidosis, feelings of mistrust in doctors and the healthcare system are commonly expressed. Patients frequently voice difficulties in finding a knowledgeable specialist. They often complain that physicians appear unconcerned about the poor quality of life from nonorgan-related manifestations, the high cost of treatment, and medication side effects.

To steer patients to expert, multidisciplinary care, The World Association of Sarcoidosis and Other Granulomatous Diseases and The Foundation for Sarcoidosis Research have jointly started to designate Sarcoidosis Centers of Excellence and Sarcoidosis Clinics. The aim is to provide patients with a resource they can use to receive “whole-person,” evidence-based care that presumably engenders trust. Nonetheless, this study demonstrates that at a large Sarcoidosis Center of Excellence with extensive experience in caring for patients with sarcoidosis, patients in both low- and high-income groups had similar perceptions about the care they were receiving.

Solving these problems will be no quick fix. Improvements will need to be made in physician education about sarcoidosis, improving education of and communication with patients with sarcoidosis, and effectively dealing with racial discrimination in patient care. Complicating these efforts is that despite our best intentions to provide unbiased, evidence-based, and compassionate care, the experience of the patient with sarcoidosis can be completely different (2, 13).

One major limitation of the current study is that the focus groups included patients who were on systemic therapy. Given the fact that only patients with more severe disease and patients who experience the adverse effects of systemic therapy were included, the findings in this qualitative study are not generalizable to the entire population. Although the format of a focus group allows for delving deeply into the concerns of patients, this study involves only 26 patients from one center, so the small sample size may not reflect patients in other communities.

Harper and colleagues have clearly outlined crucial patient issues that require the sarcoidosis community to self-reflect and commit to restoring the trust needed to develop meaningful doctor–patient relationships. Success will require input from clinicians, researchers, patient advocacy groups in sarcoidosis, and community health advocates to expand access to care, improve sarcoidosis education to healthcare providers, establish multidisciplinary models of efficient patient care, and focus on patient-centered outcomes (14).