Blockades in the Pathway of Specialty Care in Sjogren’s and Systemic Sclerosis: A Report Based on Indian Rheumatology Association Database

Abstract

Aim: The present study aimed to evaluate the factors influencing the referral delay in patients with primary Sjogren’s syndrome (Sjogren’s) and systemic sclerosis (SSc). Materials and Methods: The independent, multicentre, cross-sectional study collected data from seven centres across India through the Indian Rheumatology Association (IRA) database. The patient-related factors and referral factors were determined based on the patient narrations. Based on the patient’s income, a modified version of the Prasad scale was employed to classify them according to socioeconomic status. Results: The study included 118 patients with Sjogren’s and 166 patients with SSc. Approximately 60% of patients with SSc and Sjogren’s received rheumatology specialty care more than 6 months after symptom onset. The primary reasons for this delay were identified as a lack of awareness of rheumatology specialty care among patients (Sjogren’s: 61%; SSc: 74%) and disease management by other specialists (Sjogren’s: 75%; SSc: 62%) rather than rheumatologists. Additionally, over 25% of primary care practitioners were unaware of rheumatology specialty services, and a similar percentage of patients were not diagnosed with rheumatic diseases by their primary care physicians. Patients with delayed referrals for Sjogren’s exhibited higher rates of haematologic, oral, and non-articular pain. Similarly, in SSc patients, delayed referral was associated with a significantly higher prevalence of skin involvement ( P < .01). Conclusion: Patient referrals to other specialties and a lack of knowledge about rheumatology were the primary causes of referral delays. Educating primary care physicians and facilitating direct referrals to rheumatology specialists could help reduce these delays. The study findings may help in stratifying interventions to improve early referral and access to rheumatology specialty care for patients with Sjogren’s and SSc.