Blockades in the Pathway of Speciality Care in Systemic Lupus Erythematosus: A Report Based on Indian Rheumatology Association Database

Aim: The lack of knowledge among primary care physicians about autoimmune rheumatic diseases can contribute to referral delays by impeding early recognition, accurate diagnosis and timely referral to specialists. The present study is aimed at analysing the factors influencing the diagnostic and referral delay in patients with systemic lupus erythematosus (SLE) to the rheumatology speciality in India. Materials and methods: The independent, multi-centre, database-based, cross-sectional study collected data from seven centres across India through the Indian Rheumatology Association database. The patient-related factors and the referral factors were determined based on the patient narration. Based on the patient’s income, a modified version of the Prasad scale was employed to classify them according to socioeconomic status. The analysis also included the clinical presentation and system involvement. Logistic regression analysis was used to identify significant predictors of early referral based on initial symptoms. Results: The study considered 786 out of 833 patients fulfilling the Systemic Lupus International Collaborating Clinics criteria. The median delay in referral to a specialist was 1 month, with an interquartile range of 11 months, but the delay ranged from 1 to 192 months. The major causes of referral delay were the management of SLE by other specialists instead of rheumatologists (93%) and a lack of awareness of speciality care (89%). Additionally, more than 25% of primary care practitioners were unaware of rheumatology as a speciality, and a similar percentage of patients received incorrect diagnoses from their general care physician. Early referral within 6 months was associated with a lower prevalence of systemic complications, including pulmonary, gastrointestinal, peripheral vascular, central nervous system and ophthalmic involvement. Significant predictors for early referral included joint pain (49.51% vs. 19.64%; P = .013; odds ratio [OR] = 0.655), hair loss (12.76% vs. 4.76%; P = .279; OR = 0.789) and weight loss (5.05% vs. 1.12%; P = .053; OR = 0.469). Conversely, symptoms such as lung involvement (0.56% vs. 0.98%; P = .042; OR = 3.938), Raynaud’s phenomenon (0.14% vs. 0.98%; P = .002; OR = 15.847) and thrombocytopenia (0.84% vs. 1.12%; P = .035; OR = 3.002) were more likely to lead to referrals to other specialities. Conclusion: The delay in patient referral to the rheumatology speciality is primarily attributed to referrals to other specialities and a lack of knowledge about rheumatology. Educating primary care physicians and facilitating direct referrals to specialists could significantly contribute to reducing these delays.