CO7 - Impact of Early Diagnosis and Early Initiation of Infliximab on Long-Term Disability in Neurosarcoidosis
Brandon P. Moss, MD (United States)1 2; Scott Husak (United States)3; Manuel L. Ribeiro Neto, MD (United States)1 4; Daniel A. Culver, DO (United States)1 4; Julia O'Mahony, PhD (United States)2;
1 - Cleveland Clinic, Sarcoidosis Center; 2 - Cleveland Clinic, Mellen Center for Multiple Sclerosis; 3 - Cleveland Clinic, Quantitative Health Sciences; 4 - Cleveland Clinic, Department of Pulmonary and Critical Care Medicine;
Keywords: Neurosarcoidosis; Long-term disability; Diagnostic delay;
Select the theme: Special Topics in Extrathoracic Sarcoidosis
Type: Original Papers
Presentation: Oral Communication

Introduction: Neurologic complications occur in 5-15% of sarcoidosis but more often result in persistent disability. Little is known about modifiable risk factors for disability in this population.

Objectives: To examine the relationship between diagnostic delay and time to initiation of infliximab on the risk for long-term disability (LTD).

Materials and Methods: Demographics, disease characteristics, and LTD were assessed for all neurosarcoidosis patients who had biopsy-proven sarcoidosis and were treated with infliximab at our center between 2005 and 2026. P values <0.05 were considered statistically significant. We used Chi-square, Fisher’s exact tests for univariable analyses and logistic regression for multivariable analyses. Diagnostic delay (DD) was defined as ≥ 6 months from neurologic symptom onset to diagnosis of neurosarcoidosis.

Results: For 156 participants (median age 49 years [IQR 40–58], 50.6% female, 35.5% Black), after median 4.77 years follow-up (IQR 2.60–8.69), 7 (5%) died, 10 (6%) were non-ambulatory, and 28 (20%) used assistive mobility devices. 112 (73%) had neurologic presentations (NPs).

NPs had a higher rate of DD (61%) compared to those with pre-existing sarcoidosis diagnoses (38%, p=0.012). Among NPs, all cases of severe disability (non-ambulatory or death) occurred in those with DD (14.7% vs 0%, p=0.008). At our center, for undiagnosed NPs, diagnosis was confirmed after a median of 15 days (IQR 7–67); and NPs diagnosed on site were treated with infliximab on average 300 days sooner (p=0.04) than those diagnosed in the community.

Conclusions: These findings suggest that earlier diagnosis reduces LTD in neurosarcoidosis and highlight potential disparities in diagnosis and management between sarcoidosis centers and community practice. Since there was no significant difference between time to initiation of infliximab after diagnosis and LTD, these data suggest that delayed recognition in the community setting is a major contributor to LTD. Further efforts to connect patients and providers to frictionless care at expert centers are needed.