The impact of demographic disparities in the presentation of sarcoidosis: A multicenter prospective study

Zhou, Ying; Gerke, Alicia K.; Lower, Elyse E.; Визель, А. А.; Talwar, Deepak; Strâmbu, Irina; Francesqui, Joel; Sellarés, Jacobo; Sawahata, Michiru; Ndili, Ogugua; Nagai, Sonoko; Tanizawa, Kiminobu; Judson, Marc A.; Jeny, Florence; Valeyre, Dominique; Castro, Marina Dornfeld Cunha; Pereira, Carlos A.C.; Balter, Meyer; Baughman, Robert P.

doi:10.1016/j.rmed.2021.106564

Cited by 34 publications

(28 citation statements)

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“…The likelihood of treatment in sarcoidosis has been associated with race, gender, and geolocation [8 ▪▪ ,24]. Zhou et al [8 ▪▪ ] found that Black patients were 2.3 times more likely to receive treatment than other races. Only 4% of Black patients had never been treated versus 35% of Japanese patients [8 ▪▪ ].…”

Section: Diversity and Disparity In The Treatment Clinical Course And...mentioning

confidence: 99%

Diversity and disparity in the treatment and care of sarcoidosis

Ndili

2023

Current Opinion in Pulmonary Medicine

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Purpose of review Clinical presentation and outcomes in patients with sarcoidosis vary by race, gender, ethnicity, and geolocation. African Americans and female individuals have the highest incidence of disease. They are also more likely to present with advanced and more severe forms of disease, and to die from sarcoidosis. African American female individuals have the highest disease-associated mortality, yet this varies by geolocation. The diverse presentation and outcomes in sarcoidosis have often been attributed to genetics and biology, yet this may not be entirely so. Recent findings Several studies have shown that African Americans and female individuals are more likely to earn less and be more socioeconomically disadvantaged in society. Patients with sarcoidosis earning in the lowest income strata presented with the most severe disease and reported more barriers to care. It is plausible that the racial, gender, and geospatial differences in sarcoidosis are more reflective of healthcare disparities than genetics or biology alone. Summary Preventable differences in the burden of disease and in the opportunities to achieve optimal health outcomes that are differentially experienced by groups of people disadvantaged by race, gender, ethnicity, or socioeconomic background should be identified and addressed.

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Section: Diversity and Disparity In The Treatment Clinical Course And...mentioning

confidence: 99%

Diversity and disparity in the treatment and care of sarcoidosis

Ndili

2023

Current Opinion in Pulmonary Medicine

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“…Studies focused on non-pulmonary manifestations of sarcoidosis face the unique challenge that very few patients (< 2% in one large cohort) ( 3 ) will have isolated non-pulmonary manifestations of sarcoidosis. Consequently, trial designs in pulmonary sarcoidosis may need to be adapted to enrich for other organ manifestations of disease without detracting from pulmonary endpoints, or conversely, to focus on a very small subset of patients with very clear-cut endpoints—such as focusing on chronic cutaneous sarcoidosis and using the sarcoidosis activity and severity index (SASI) ( 114 , 115 ) as an endpoint or focusing on optic neuritis rather than all neurosarcoidosis.…”

Section: Challenges Affecting Drug Trials and Drug Development In Sar...mentioning

confidence: 99%

“…Sarcoidosis is a systemic inflammatory disease of unknown etiology characterized by the presence of non-caseating granulomas in affected organs ( 1 ). The lungs are affected in over 90% of patients yet extra-pulmonary and multi-organ involvement occurs commonly ( 2 , 3 ). The clinical presentation, disease course, and severity of sarcoidosis is highly variable, impacting treatment, prognosis, and patient outcomes ( 1 , 4 , 5 ).…”

Section: Introductionmentioning

confidence: 99%

“…The reasons for this are many. First, sarcoidosis is considered a rare disease with relatively few people affected and even fewer (50–80% of those affected) potentially needing treatment ( 3 , 8 , 20 ). This impacts disease awareness, research funding and severely strains the pool of patients eligible for clinical trials especially in non-pulmonary disease manifestations.…”

Section: Introductionmentioning

confidence: 99%

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Sarcoidosis: Updates on therapeutic drug trials and novel treatment approaches

et al. 2022

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Sarcoidosis is a systemic granulomatous inflammatory disease of unknown etiology. It affects the lungs in over 90% of patients yet extra-pulmonary and multi-organ involvement is common. Spontaneous remission of disease occurs commonly, nonetheless, over 50% of patients will require treatment and up to 30% of patients will develop a chronic progressive non-remitting disease with marked pulmonary fibrosis leading to significant morbidity and death. Guidelines outlining an immunosuppressive treatment approach to sarcoidosis were recently published, however, the strength of evidence behind many of the guideline recommended drugs is weak. None of the drugs currently used for the treatment of sarcoidosis have been rigorously studied and prescription of these drugs is often based on off-label” indications informed by experience with other diseases. Indeed, only two medications [prednisone and repository corticotropin (RCI) injection] currently used in the treatment of sarcoidosis are approved by the United States Food and Drug Administration. This situation results in significant reimbursement challenges especially for the more advanced (and often more effective) drugs that are favored for severe and refractory forms of disease causing an over-reliance on corticosteroids known to be associated with significant dose and duration dependent toxicities. This past decade has seen a renewed interest in developing new drugs and exploring novel therapeutic pathways for the treatment of sarcoidosis. Several of these trials are active randomized controlled trials (RCTs) designed to recruit relatively large numbers of patients with a goal to determine the safety, efficacy, and tolerability of these new molecules and therapeutic approaches. While it is an exciting time, it is also necessary to exercise caution. Resources including research dollars and most importantly, patient populations available for trials are limited and thus necessitate that several of the challenges facing drug trials and drug development in sarcoidosis are addressed. This will ensure that currently available resources are judiciously utilized. Our paper reviews the ongoing and anticipated drug trials in sarcoidosis and addresses the challenges facing these and future trials. We also review several recently completed trials and draw lessons that should be applied in future.

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“…Sarcoidosis is an inflammatory disease characterized by multisystem non-caseating granulomas with unknown causes, which most commonly affects the lungs and its surrounding lymph nodes but can also involve other organs, including the liver, kidneys, brain, heart, eyes, skin, and sinuses ( 1 ). The prevalence of sarcoidosis and its clinical presentation vary greatly according to patient sex, age group, ethnicity, and geographical region ( 2 , 3 ). Consistently, the incidence of sarcoidosis is the highest among African Americans and lowest among Asians ( 4 ).…”

Section: Introductionmentioning

confidence: 99%

Prevalence of Sarcoidosis-Associated Pulmonary Hypertension: A Systematic Review and Meta-Analysis

Zhang

Xiang

Zhang

et al. 2022

Front. Cardiovasc. Med.

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BackgroundSarcoidosis-associated pulmonary hypertension (SAPH) is associated with poor prognosis, conferring up to a 10-fold increase in mortality in patients with sarcoidosis, but the actual prevalence of SAPH is unknown.MethodsThe PubMed, Embase, and Cochrane Library databases were systematically searched for epidemiological studies reporting the prevalence of SAPH up to July 2021. Two reviewers independently performed the study selection, data extraction, and quality assessment. Studies were pooled using random-effects meta-analysis.ResultsThis meta-analysis included 25 high-quality studies from 12 countries, with a pooled sample of 632,368 patients with sarcoidosis. The prevalence of SAPH by transthoracic echocardiography in Europe, the United States and Asia was 18.8% [95% confidence interval (CI): 11.1–26.5%], 13.9% (95% CI: 5.4–22.4%) and 16.2% (95% CI: 7.1–25.4%) separately, and the overall pooled prevalence was 16.4% (95%CI: 12.2–20.5%). By right heart catheterization (RHC), the pooled prevalence of SAPH was 6.4% (95% CI: 3.6–9.1%) in general sarcoidosis population, and subgroup analyses showed that the prevalence of SAPH was 6.7% (95% CI: 2.4–11.0%) in Europe and 8.6% (95% CI: −4.1 to 21.3%) in the United States. Further, the prevalence of pre-capillary PH was 6.5% (95% CI: 2.9–10.2%). For the population with advanced sarcoidosis, the pooled prevalence of SAPH and pre-capillary PH by RHC was as high as 62.3% (95% CI: 46.9–77.6%) and 55.9% (95% CI: 20.1–91.7%), respectively. Finally, the pooled prevalence of SAPH in large databases with documented diagnoses (6.1%, 95% CI: 2.6–9.5%) was similar to that of RHC. Substantial heterogeneity across studies was observed for all analyses (I2 > 80%, P < 0.001).ConclusionsThe sarcoidosis population has a relatively low burden of PH, mainly pre-capillary PH. However, as the disease progresses to advanced sarcoidosis, the prevalence of SAPH increases significantly.

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The impact of demographic disparities in the presentation of sarcoidosis: A multicenter prospective study

Cited by 34 publications

References 31 publications

Diversity and disparity in the treatment and care of sarcoidosis

Diversity and disparity in the treatment and care of sarcoidosis

Sarcoidosis: Updates on therapeutic drug trials and novel treatment approaches

Prevalence of Sarcoidosis-Associated Pulmonary Hypertension: A Systematic Review and Meta-Analysis

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