Delays in Referral to Multidisciplinary Care for Black Individuals With Sarcoidosis

Abstract

BACKGROUND:

Sarcoidosis is a complex granulomatous disease that benefits from multidisciplinary subspecialty expertise. Inequitable access to care contributes to racial disparities in many diseases; however, to our knowledge, no studies have examined racial differences in referral times to Sarcoidosis Centers of Excellence.

RESEARCH QUESTION:

Is there an association between race and time from sarcoidosis diagnosis to referral to an independently certified, peer-reviewed World Association of Sarcoidosis and Other Granulomatous Disorders Center of Excellence? Does a referral result in a change in sarcoidosis management?

STUDY DESIGN AND METHODS:

We retrospectively reviewed all 2021 referrals to the Johns Hopkins Sarcoidosis Center of Excellence. Multivariable Cox regression evaluated the association between race and time to referral, adjusting for covariates of sex, ethnicity, referral type, referral provider, insurance provider, employment status, organ involvement, and sarcoidosis medications. Changes in sarcoidosis management including treatment changes, additional organ evaluation, and/or additional subspecialty expertise were ascertained 1 year after establishing care.

RESULTS:

At total of 207 individuals were analyzed (40% Black, 55% White, and 5% Asian and other race). Black individuals experienced longer referral delay than White individuals, with a median of 9 vs 5 years, respectively (P < .05). In multivariable analysis, the hazard of referral for White individuals was higher than for Black individuals (hazard ratio, 2.04; 95% CI, 1.48–2.82; P < .001), independent of the covariates. Sarcoidosis management changed in 78% of individuals after referral.

INTERPRETATION:

Black patients experienced significant delays in referral to a multidisciplinary subspecialty Sarcoidosis Center of Excellence compared with other racial groups. Recognition of referral delay may offer insight and opportunity to address disparities in clinical outcomes observed in Black individuals with sarcoidosis. Future multicenter studies must quantify the impact of care received through World Association of Sarcoidosis and Other Granulomatous Disorders Sarcoidosis Centers of Excellence, define patient phenotypes in need of urgent referral, and develop targeted patient and provider outreach.

Sarcoidosis is a complex multiorgan granulomatous disease with high morbidity and increasing mortality.^1,2 Although early recognition and treatment of active disease prevent irreversible organ damage, delays in care are common in sarcoidosis, with some individuals seeing up to 14 providers before receiving a diagnosis.^3–5 Factors that may influence these delays include heterogeneous disease manifestations, limited diagnostic modalities and biomarkers, and social determinants of health that impact access to care.^6,7

Expertise in sarcoidosis is scarce. The publication of diagnostic and treatment guidelines is notable; however, the evidence base for guideline recommendations remains low quality.^8,9 After receiving a diagnosis, individuals can be referred to clinics recognized by the World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG). There are currently 73 WASOG Sarcoidosis Clinics in the United States. Of these, 33 are additionally designated as WASOG Sarcoidosis Centers of Excellence for their distinction in sarcoidosis care and ability to provide multidisciplinary expertise to individuals with the disease.^10,11 Referral to WASOG-recognized clinics may be appropriate for individuals with sarcoidosis who have complex or multiorgan disease.

Extensive health disparities exist within sarcoidosis by race. In the United States, the disease disproportionately affects Black individuals compared with non-Hispanic White individuals.¹² Additionally, Black individuals with sarcoidosis generally develop disease earlier and have higher rates of hospitalization, severe disease, and mortality.^13–16 Furthermore, Black individuals with sarcoidosis are more likely to fall below the poverty line, which in turn has been significantly associated with higher rates of hospitalizations in these patients.¹⁷

Access to care is a significant contributor to health disparities in various disease states.^18,19 Individuals from minoritized racial groups face multifaceted barriers to receiving high-quality care including those related to socioeconomic status, insurance type, geographic access, and implicit bias of providers.^20,21 Racial disparities in access to care for sarcoidosis are poorly understood and not widely studied. With respect to diagnosis of sarcoidosis, 2 prior studies evaluated the association between race and time to diagnosis and found no differences in diagnosis time by race. Notably, both study populations were limited in racial diversity.^3,22

To our knowledge, no published studies have evaluated racial disparities in access to tertiary care in sarcoidosis. We therefore sought to evaluate the association between race and time to referral to a WASOG designated Sarcoidosis Center of Excellence after diagnosis of sarcoidosis. We hypothesized that Black race would be associated with a longer time between diagnosis and referral. As a secondary aim, we sought to better understand how referral changed sarcoidosis management.

Study Design and Methods

Study Design

This was a retrospective observational study of individuals referred to the Johns Hopkins Sarcoidosis Center (JHSC) between January 1, 2021, and December 31, 2021. Clinical data were extracted from institutional electronic medical records (EMRs) by study authors (K. R. M., O. A., M. S.). Individuals were ineligible if they had not been diagnosed with sarcoidosis by any provider before referral, if they had previously been seen in any WASOG clinic, or if they were referred to JHSC, but never seen. Individuals were excluded from analyses if they had missing demographic or clinical data due to their diagnosis of sarcoidosis not being confirmed by JHSC. Diagnosis of sarcoidosis is confirmed at JHSC based on the 2020 diagnostic criteria by the American Thoracic Society.⁹ Confirmation or rejection of diagnosis is subsequently documented in clinical encounters. For all patients in our study seen at JHSC, data extraction from EMRs were performed to determine if the diagnosis of sarcoidosis was confirmed and any alternate diagnoses given if the diagnosis was not confirmed.

For the individuals included in study analyses, race (White, Black, or Asian and other [defined as other in the EMR]), age, sex (male or female), ethnicity (non-Hispanic or Hispanic), diagnosis date, referral date, date of first clinic visit, referral type (external or internal from provider affiliated with JHSC), referral provider (self-referral, primary care, specialist, or hospitalist), insurance provider (no insurance, any private insurance, or public insurance, which included Medicare, Medicaid, and Military insurance), employment status (employed or unemployed), sarcoidosis organ involvement (1, 2 to 4, or ≥ 5 organs), and sarcoidosis medications (corticosteroids and/or corticosteroid-sparing agents including hydroxychloroquine, methotrexate, azathioprine, mycophenolate mofetil, tumor necrosis factor-alpha inhibitors, and tocilizumab) were extracted from the EMRs. Sarcoidosis organ involvement was defined based on the organ assessment tool developed in the Genomic Research in Alpha-1 Antitrypsin Deficiency and Sarcoidosis (GRADS) study.²³ Demographic characteristics (race, age, sex, and ethnicity) of individuals referred to JHSC but not seen were additionally evaluated.

Changes in clinical management of sarcoidosis within 1 year of first JHSC clinic visit were collected via EMR review. Changes that were assessed included modification of sarcoidosis treatment regimen, additional organ evaluation, and utilization of multidisciplinary care. Modification of sarcoidosis treatment regimen was defined as changes made in sarcoidosis medication dose and/or class (including addition or removal of corticosteroid and/or corticosteroid-sparing agents). Additional organ evaluation was defined as additional laboratory studies, imaging, and/or subspecialty referrals ordered to investigate the possibility of a new organ manifestation of sarcoidosis. Multidisciplinary care was defined as occurring if the individual had been discussed at the weekly JHSC multidisciplinary conference or received a referral to specialists in the JHSC multidisciplinary program, which includes specialists in cardiac sarcoidosis, neurosarcoidosis, cutaneous sarcoidosis, musculoskeletal sarcoidosis, and ocular sarcoidosis.

Data collection for this study was approved by the Johns Hopkins Medicine institutional review board (IRB00318580).

Primary Outcome and Exposure

The primary outcome was time in years from date of sarcoidosis diagnosis by the referring provider to date at which referral was placed to JHSC. Time of diagnosis was defined as the date a medical provider outside JHSC documented the individual had sarcoidosis based on clinical evidence of disease and/or pathology consistent with granulomatous inflammation. These data were obtained via comprehensive review of medical records of patients before referral. Time of referral was defined as the date JHSC received a referral for the individual. The primary exposure of interest was race, defined as White, Black, or Asian and other race.

Statistical Analysis

Demographic and clinical characteristics were summarized and compared among racial groups using Kruskal-Wallis tests for continuous variables and χ² or Fisher exact tests for categorical variables. Unadjusted and multivariable Cox proportional hazards regression was used to evaluate association between race and time to referral. Adjusted models included sex, ethnicity, referral type, referral provider, insurance provider, employment status, organ involvement, and sarcoidosis medications (none, corticosteroid monotherapy, corticosteroid and corticosteroid-sparing therapy, or corticosteroid-sparing monotherapy). Individuals entered risk sets at time of diagnosis; no individuals were censored because the study population included all individuals referred to JHSC. Results of this model are presented as hazard ratios (HRs) with corresponding 95% CIs, with an HR > 1 indicating a shorter time to referral. Proportional hazards assumption was verified.²⁴ Finally, characteristics of individuals were compared between those who had changes in clinical management and those that did not have changes using Student t tests and χ² or Fisher exact tests for continuous and categorical variables, respectively. P < .05 was considered statistically significant. All analyses were performed using STATA Version 15 (StataCorp).

Results

Study Population

In total, 532 individuals were referred to JHSC between January 1, 2021, and December 31, 2021. Of this group, 309 individuals were ineligible due to not having a diagnosis of sarcoidosis at time of referral (n = 55), previous evaluation at another WASOG center (n = 112), and scheduling or insurance issues that impeded evaluation in clinic (n = 142). Of the 142 individuals who were referred but not seen in our center, there were no significant differences in race, sex, and ethnicity compared with those seen. Of the 223 individuals eligible for the study, 14 had missing clinical data because their diagnosis of sarcoidosis was not confirmed and 2 had missing demographic data. The remaining 207 individuals comprised the analytical population (Fig 1).

Figure 1 –

Flow diagram detailing eligibility criteria and ultimate selection of study participants. JHSC = Johns Hopkins Sarcoidosis Center; WASOG = World Association of Sarcoidosis and Other Granulomatous Disorders.

Characteristics of the Study Population

Of the 207 individuals included in analysis, 48% (n = 99) were female, 55% (n = 113) were White, 40% (n = 82) were Black, and 5% (n = 12) were Asian or other race. Non-Hispanic individuals comprised 98% of the study population (n = 203). At the time of first clinic visit, 68% (n = 140) of individuals were employed, 80% of individuals (n = 166) had any private insurance, 19% (n = 39) had public insurance, and 1% (n = 2) had no insurance. With respect to disease characteristics at time of referral, 35% of individuals (n = 72) had 1 organ involved, 59% (n = 122) had 2 to 4 organs involved, and 6% (n = 13) had ≥ 5 organs involved. Regarding treatment, 62% of patients (n = 128) were not on treatment, 25% (n = 52) were on corticosteroid monotherapy, 10% (n = 20) were on corticosteroid and corticosteroid-sparing combined therapy, and 3% (n = 7) were on corticosteroid-sparing monotherapy (Table 1).

TABLE 1 ].

Demographic and Clinical Characteristics of Participants, Overall and by Race

Characteristics	All (N = 207)	White (n = 113)	Black (n = 82)	Asian and Other (n = 12)	P Value
Age, y	53 (45–60)	53 (45–62)	53 (47–60)	45 (37–52)	.06
Female sex	99 (48)	56 (50)	38 (46)	5 (42)	.82
Ethnicity					.24
Non-Hispanic	203 (98)	111 (98)	81 (99)	11 (92)
Hispanic	4 (2)	2 (2)	1 (1)	1 (8)
Time to Referral, y	6 (0–8)	5 (0–5)	9 (0–14)	1 (0–1)	< .05
Referral type					.10
External	124 (60)	75 (66)	42 (41)	7 (58)
Internal	83 (40)	38 (34)	40 (49)	5 (42)
Referral provider					.19
Self	62 (30)	42 (37)	18 (22)	2 (17)
Primary care	26 (13)	11 (10)	12 (15)	3 (25)
Specialist	115 (56)	58 (51)	50 (61)	7 (58)
Hospitalist	4 (2)	2 (2)	2 (2)	0 (0)
Insurance provider					< .05
None	2 (1)	1 (1)	0 (0)	1 (8)
Private	166 (80)	93 (82)	64 (78)	9 (75)
Public	39 (19)	19 (17)	18 (22)	2 (17)
Employment status					.54
Unemployed	67 (32)	34 (30)	30 (37)	3 (25)
Employed	140 (68)	79 (70)	52 (63)	9 (75)
Organ involvement					.46
1 organ	72 (35)	43 (38)	24 (29)	5 (42)
2–4 organs	122 (59)	65 (58)	51 (62)	6 (50)
> 4 organs	13 (6)	5 (4)	7 (9)	1 (8)
Sarcoidosis medication(s)					.37
None	128 (62)	68 (60)	50 (61)	10 (83)
Corticosteroid monotherapy	52 (25)	26 (23)	25 (30)	1 (8)
Corticosteroid + corticosteroid-sparing therapy	20 (10)	13 (12)	6 (7)	1 (8)
Corticosteroid-sparing monotherapy	7 (3)	6 (5)	1 (1)	0 (0)

Values are No. (%), median (25th-75th percentile), or as otherwise indicated. P values based on Kruskal-Wallis tests for continuous variables and χ² or Fisher exact tests for categorical variables.

Time to Referral

The overall median time to referral for included individuals was 6 years (25th-75th percentile, 0–8 years). For White, Black, and Asian and other race individuals, there was a statistically significant difference in time to referral with median times to referral of 5 (25th-75th percentile, 0–5), 9 (25th-75th percentile, 0–14), and 1 (25th-75th percentile, 0–1) years, respectively (e-Fig 1). Most referrals were external (n = 124) and made by specialists (n = 115).

In multivariable Cox proportional hazards, White individuals had a higher hazard for referral compared with Black individuals (HR, 2.04; 95% CI, 1.48–2.82; P < .001), and Asian and other race individuals had a higher hazard for referral compared with Black individuals (HR, 3.57; 95% CI, 1.79–7.14; P < .001) (Table 2; e-Fig 2).

TABLE 2 ].

Multivariate Cox Regression Results of Time to Referral by Demographic and Clinical Characteristics

Characteristic	Unadjusted Hazard Ratio (95% CI)	P Value	Adjusteda Hazard Ratio (95% CI)	P Value
Race
Black	Reference		Reference
White	1.63 (1.23–2.15)	< .05	2.04 (1.48–2.82)	< .05b
Asian and other	3.33 (1.93–5.78)	< .05b	3.57 (1.78–7.14)	< .05b
Sex
Male	Reference		Reference
Female	1.03 (0.79–1.35)	.826	1.07 (0.79–1.44)	.68
Ethnicity
Non-Hispanic	Reference		Reference
Hispanic	1.47 (0.65–3.33)	.35	0.97 (0.35–2.73)	.96
Referral type
External	Reference		Reference
Internal	1.33 (1.02–1.75)	< .05	1.16 (0.83–1.63)	.38
Referral provider
Self	Reference		Reference
Primary care	1.38 (0.88–2.16)	.16	1.61 (0.94–2.77)	.08
Specialist	1.46 (1.07–1.97)	< .05	1.84 (1.25–2.70)	< .05
Hospitalist	14.21 (4.97–40.70)	< .05	22.84 (7.11–73.37)	< .05b
Insurance provider
None	Reference		Reference
Private	0.18 (0.04–0.73)	< .05	0.34 (0.07–1.55)	.16
Public	0.14 (0.03–0.60)	< .05	0.33 (0.07–1.59)	.17
Employment status
Unemployed	Reference		Reference
Employed	1.26 (0.95–1.68)	.11	1.34 (0.94–1.91)	.11
Organ involvement
1 organ	Reference		Reference
2–4 organs	1.17 (0.87–1.56)	.31	1.17 (0.86–1.60)	.32
≥ 5 organs	1.62 (0.89–2.96)	.11	2.06 (1.08–3.93)	.03
Medication(s)
None	Reference		Reference
CS monotherapy	1.08 (0.78–1.48)	.65	1.18 (0.83–1.68)	.35
CS + CSS therapy	1.23 (0.77–1.98)	.39	1.08 (0.64–1.81)	.77
CSS monotherapy	0.72 (0.33–1.53)	.39	0.47 (0.21–1.06)	.07

CS = corticosteroid; CSS = corticosteroid sparing.

^aAdjusted for sex, ethnicity, referral type, referral provider, insurance provider, employment status, organ involvement, and sarcoidosis medications.

^bP < .001.

Clinical Management Changes After Referral

Of the 207 individuals included in analysis, 78% (n = 161) had changes in clinical management of sarcoidosis. There were no significant differences in race, sex, and ethnicity between individuals who had any change in clinical management compared with those that did not have a change to clinical management. Changes in treatment of sarcoidosis were made for 53% (n = 110) of individuals (Fig 2). Specifically, 82% (n = 90) had a change in their corticosteroid dose, 19% (n = 21) had their corticosteroid stopped, 61% (n = 67) had corticosteroid-sparing agent initiated or changed, and 10% (n = 11) had corticosteroid-sparing agent stopped (e-Fig 3).

Figure 2 –

Summary of changes in clinical management made for 207 individuals after first year of visit.

Additional organ involvement was evaluated in 47% of individuals (n = 97) after referral to JHSC. Among these individuals, 61% (n = 59) had cardiac involvement; 36% (n = 35) had neurologic involvement; 8% (n = 8) had skin involvement; 8% (n = 8) had liver involvement; and 7% (n = 7) had either ocular, musculoskeletal, kidney, or colon involvement (e-Fig 4).

Multidisciplinary care was provided for 29% of the 207 individuals (n = 61).

In the 14 individuals whose diagnosis of sarcoidosis was not confirmed after being seen at JHSC, 7 of them received alternate diagnoses, 2 were diagnosed with histoplasmosis, 1 was diagnosed with antisynthetase syndrome, 1 was diagnosed with Hodgkin lymphoma, 1 was diagnosed with IgG4-related disease, 1 was diagnosed with paraneoplastic sarcoid reaction, and 1 was diagnosed with Rosai-Dorfman disease.

Discussion

In this retrospective study of 207 individuals with sarcoidosis referred to a WASOG Center of Excellence, the time to referral after diagnosis of sarcoidosis for Black individuals was significantly longer than White individuals, with a median of 9 years between diagnosis and referral, compared with a median of 5 years in White individuals and 1 year in Asian and other race individuals. In multivariable analysis, time to referral was shorter for White individuals than Black individuals independent of sociodemographic and disease factors. These results suggest that the racial disparities seen in sarcoidosis may be in part driven by delayed access to multidisciplinary care. Additionally, our study is the first to our knowledge to demonstrate substantial changes in management of sarcoidosis after evaluation at any WASOG center.

Racial disparities in sarcoidosis are well established. Compared with White individuals, Black individuals with sarcoidosis more frequently have multiorgan involvement and worse lung function, with more advanced chest radiographic disease and higher rates of pulmonary hypertension.^16,25,26 Additionally, Black individuals with sarcoidosis more commonly require medications for sarcoidosis; have lower rates of clinical recovery; and experience higher rates of hospitalizations, mortality, and earlier death than White individuals.^15,25–27 The drivers of these health disparities extend beyond genetic ancestry and intersect with social determinants of health including socioeconomic status, stress, environmental exposures, and implicit bias of health care providers.^20,28,29

Access to care is a key mediator between social factors and health outcomes. Black individuals have been previously shown to receive inequitable referrals to subspecialty care by primary care physicians compared with White individuals.³⁰ Additionally, access to tertiary care in other complex diseases has been shown to differ by race.^31,32 To our knowledge, racial differences in access to multidisciplinary care have not been previously explored in sarcoidosis. Early detection and treatment of granulomatous inflammation in sarcoidosis can preserve organ function before progression to end-stage organ damage occurs.^4,5 Consequently, delays in care or referral to specialty centers among Black individuals may contribute to the worse outcomes observed in this patient population. This may be particularly relevant when considering race-based differences in advanced pulmonary disease, hospitalizations, and mortality, which could possibly be attenuated if the pathologies are detected earlier and treated when appropriate. Additionally, clinical trials of novel therapeutics in sarcoidosis are often conducted at tertiary care centers. Racial differences in referral to these centers may contribute to the racial disparities in clinical trial participation observed in the disease.^33–35

Management of sarcoidosis is complex, and individuals with sarcoidosis have self-reported difficulties receiving high-quality care due to provider knowledge gaps about their disease.^6,8,36 For individuals with complex or multiorgan disease, WASOG Sarcoidosis Centers of Excellence can provide access to high-quality multidisciplinary expertise.¹¹ In our study, Black individuals referred to our WASOG Sarcoidosis Center of Excellence experienced particularly significant delays from the time of diagnosis of sarcoidosis; however, the overall median time between diagnosis and referral for all individuals referred to our clinic was still prolonged with a median time to referral of 6 years. We suspect this delay may in part be driven by the small number of WASOG Clinics and Centers of Excellence. Sarcoidosis has an estimated prevalence of 60 per 100,000 individuals in the United States; however, only 73 WASOG Sarcoidosis Clinics, 33 of which are Centers of Excellence, exist in the United States.^10,37 This scarcity of tertiary centers may further drive referral delays.¹¹

Our study found significant changes in sarcoidosis management after being seen at our WASOG Sarcoidosis Center of Excellence, including 6% of individuals receiving alternative diagnoses (eg, infection, connective tissue disease, malignancy). With respect to treatment after referral, 19% of individuals whose treatment was changed stopped corticosteroids, a class of medications associated with multiorgan toxicities, lower health-related quality of life, and increased health care utilization in sarcoidosis.^38–41 Additionally, 61% of patients whose treatment was changed had initiation or change in dosing of a steroid-sparing agent, which can help lower cumulative corticosteroid exposure.^42–44 Multidisciplinary expertise, which has previously been recommended for patients with complex and multiorgan disease, was provided for 29% of individuals after their initial evaluation at JHSC.^45,46 The most common organ involvement that was evaluated after referral was cardiac followed by neurologic involvement, both of which can dramatically alter treatment course and prognosis of disease.^47,48 Our findings thus suggest that receiving care at a WASOG Sarcoidosis Center of Excellence improves care for 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. Future work is needed to understand the long-term consequences of delays in care.

Our work highlights multiple areas of future study and targets for improvement of care in sarcoidosis. Our results show that multiple changes in sarcoidosis management occur after referral to a WASOG Sarcoidosis Center of Excellence. Contextualization of this finding by investigating management of patients who do not receive care at a WASOG Sarcoidosis Center of Excellence and confirming our results across multiple WASOG Sarcoidosis Centers of Excellence is necessary. Beyond clinical management, clinical outcomes and patient-reported outcomes associated with referral must be ascertained. If referral is associated with significant improvements in clinical and patient-reported metrics, a qualitative analysis of provider and patient perspectives on factors influencing delays in referrals to tertiary centers could help provide further understanding and inform possible interventions. An examination of implicit biases of providers making referrals may also enhance our understanding of the racial disparities in referral times and be an area for intervention. Finally, given the paucity of WASOG clinics in the United States, it is essential to determine which patients would benefit the most from referral and the health care costs and utilization associated with referral. An increase in the number of clinics, Centers of Excellence, and sarcoidosis providers is likely needed, as is a system to ensure referrals are received equitably. It is additionally important to consider ways in which knowledge about sarcoidosis and its management can be disseminated from WASOG clinics and Centers of Excellence to promote high-quality care of individuals with sarcoidosis in community and rural health care settings.

There are several limitations to our study. Our study population was composed of patients treated at a single, urban tertiary referral center which may limit generalizability of findings. The Asian and other race subgroup was composed of a small number of individuals, precluding meaningful inferences that can be drawn about this group; however, it is notable that this group had the shortest referral times. Additionally, because data were obtained via retrospective chart review, we were unable to assess patient-reported outcomes after referral, and evaluation of change in disease activity after referral was similarly limited. Similarly, demographic and clinical data were limited for the 142 individuals referred to but not seen at our center. These individuals represent an important population of individuals with delays in multidisciplinary care that warrant further study; however, we are reassured that there were no significant differences in race, sex, and ethnicity between these individuals and our study population. Finally, the study population was composed of individuals who were referred to our center over the course of 1 year and may not represent the experiences of all individuals who were diagnosed with sarcoidosis. Despite these limitations, the study population was a demographically and clinically diverse patient population seen at a major referral center for sarcoidosis. To our knowledge, our study is the first to look at the association between race and referral to tertiary care in sarcoidosis. Our results thus signify an important first step in better understanding racial disparities in access to care in sarcoidosis. Future prospective studies that are multicenter, comprise diverse participants, and follow individuals from diagnosis of sarcoidosis to referral to tertiary care will improve inclusivity and provide further insight regarding delays in tertiary care referral and the impact of referral on disease activity and patient outcomes.

Interpretation

Our study is the first to our knowledge to demonstrate significant racial differences in time to referral to a WASOG Sarcoidosis Center of Excellence after diagnosis of sarcoidosis. The striking racial difference in referral time may contribute to the disparities in disease characteristics and clinical outcomes observed in Black individuals with sarcoidosis. Additionally, our study is the first to our knowledge to demonstrate changes in clinical management—including immunosuppression modification, additional organ involvement evaluation, and multispecialty care—after referral and management at a WASOG Sarcoidosis Center of Excellence. Expedited referral should be considered in the appropriate clinical context. 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.

Take-Home Points

Study Question:

Is there an association between race and time from sarcoidosis diagnosis to referral to an independently certified, peer-reviewed World Association of Sarcoidosis and Other Granulomatous Disorders Center of Excellence?

Results:

Compared with White individuals, Black individuals experienced significantly longer referral delay (median, 5 vs 9 years; P < .05) and had longer time to referral independent of other sociodemographic and disease factors.

Interpretation:

Recognizing and understanding referral delay could present an opportunity to address disparities in clinical outcomes observed in Black individuals with sarcoidosis.

ABBREVIATIONS:

EMR

electronic medical record

HR

hazard ratio

JHSC

Johns Hopkins Sarcoidosis Center

WASOG

World Association of Sarcoidosis and Other Granulomatous Disorders