Black sarcoidosis patients wait longer for multidisciplinary care
Recognizing delays may help address outcome differences in race, sex, ethnicity
Black people with sarcoidosis have longer delays in referrals to multidisciplinary care, according to a recent study.
Treatment of sarcoidosis changed in 78% of patients after a referral, with no significant differences in race, sex, or ethnicity between those who underwent a change to clinical management and those who didn’t.
“Recognition of referral delay may offer insight and opportunity to address disparities in clinical outcomes observed in Black individuals with sarcoidosis,” the researchers wrote. The study, “Black Individuals with Sarcoidosis Have Significant Delay in Referral to Multidisciplinary Care After Diagnosis,” was published by Chest Pulmonary last month.
In sarcoidosis, small clumps of inflammatory cells called granulomas form in different tissues and organs, impairing their function. Sarcoidosis can affect any organ, or multiple organs at the same time, causing an array of symptoms.
Depending on the complexity of the condition, and whether multiple organs are affected, sarcoidosis may require a multidisciplinary medical team to manage. In the U.S., 73 sarcoidosis clinics have been recognized by the World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG), of which, 33 have been distinguished as centers of excellence for their distinction in sarcoidosis care and ability to provide multidisciplinary expertise in managing the disease.
“Referral to WASOG-recognized clinics may be appropriate for individuals with sarcoidosis who have complex or multiorgan disease,” the researchers wrote.
While sarcoidosis can affect people of any race, ethnicity, or sex, Black Americans are 2.5 times more likely to have sarcoidosis than white Americans, and Black women in the U.S. have the highest sarcoidosis prevalence across all groups. Black people with sarcoidosis generally develop the disease earlier and have worse outcomes, including higher rates of hospitalization, mortality, and severe disease.
“Racial minoritized individuals face multifaceted barriers to receiving high-quality care, including those related to socioeconomic status, insurance type, geographic access, and implicit bias of providers,” the researchers wrote. “Racial disparities in access to care for sarcoidosis are poorly understood and not widely studied.”
Referral delays may contribute to differences in outcomes
Here, researchers examined the referral times for 207 patients who were referred in 2021 to the John Hopkins Sarcoidosis Center of Excellence. Ninety-nine were women, and 55% were white and 40% were Black.
At the time of the referral, 59% of patients had two to four organs involved. An additional 35% had only one organ involved and 6% had five or more organs involved.
The overall median time to referral was six years for all the participants. There were statistically significant racial disparities in the referral delays, however. While white patients waited a median of five years for a referral, Black patients waited a median of nine years.
The time to referral was shorter for white patients than Black patients regardless of the sociodemographic and disease factors, an additional analysis found.
“The striking racial difference in referral time may contribute to the disparities in disease characteristics and clinical outcomes observed in Black individuals with sarcoidosis,” the researchers wrote.
At the time of a referral, 62% weren’t receiving treatment, while 25% were receiving corticosteroid therapy alone to manage their condition. A combination of corticosteroids and corticosteroid-sparing therapy were used in 10% of participants and corticosteroid-sparing therapy alone was used in the remaining 3%.
After being referred to the John Hopkins Sarcoidosis Center of Excellence, 161 patients had changes in their treatment regimens. Race, sex, and ethnicity didn’t differ between the patients who had changes compared with those who didn’t. Specifically, 82% had a change in their corticosteroid dose, while 19% had their corticosteroid stopped. A corticosteroid-sparing drug was initiated or changed in 61% and 10% had their corticosteroid-sparing drug stopped.
After referral, 47% of patients had additional organ involvement evaluated by doctors, with clinicians finding sarcoidosis-related heart involvement in 59 patients.
The John Hopkins Sarcoidosis Center of Excellence provided multidisciplinary care to 29% of the 207 patients.
Of the referred patients, seven received an alternative diagnosis.
“Our findings thus suggest that receiving care at a WASOG Sarcoidosis Center of Excellence improves care patients with sarcoidosis by confirming the diagnosis, possibly reducing medication toxicities through corticosteroid dose reduction and steroid-sparing agent initiation, evaluating additional sarcoidosis organ involvement, and providing multidisciplinary care in cases of clinical complexity,” the researchers wrote. “Future prospective studies are needed to assess the impact of tertiary referral on disease outcomes and identify individuals that would benefit most from prioritized referral.”
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