Work

Psychometric validation of the Bengali Lupus-QoL and its correlation with disease activity, damage and low disease activity state: a two-centre cross-sectional study

Year: 2026

Type: article

Abstract: Background SLE is a complex autoimmune condition requiring evaluation across disease activity, permanent damage and health-related quality of life (HRQoL). This study aimed to validate the Bengali version of the 34-item Lupus Quality of Life (Lupus-QoL) and perform a correlation analysis with global disease activity (SLE Disease Activity Index 2000 (SLEDAI-2K), SLE Disease Activity Score (SLE-DAS)), organ-specific involvement (British Isles Lupus Assessment Group (BILAG)), permanent damage (Systemic Lupus International Collaborating Clinics/American College of Rheumatology (ACR) Damage Index (SDI)) and clinical targets like the Low Lupus Disease Activity State (LLDAS).Method A multicentre cohort study was conducted with 240 Bengali patients with SLE. Clinical status was concurrently assessed using physician-reported indices (SLEDAI-2K, SLE-DAS, BILAG, SDI) alongside the Bengali Lupus-QoL. Internal consistency was determined by Cronbach’s alpha while associations were evaluated using Spearman’s correlation and discriminant validity via independent t-tests.Result The tool demonstrated excellent internal consistency (Cronbach’s alpha 0.86–0.97). SLEDAI-2K showed a strong negative correlation with all quality-of-life domains (p<0.01). While SLE-DAS correlated with physical and functional domains, it failed to capture fatigue, body image or intimacy. Musculoskeletal and cardiorespiratory involvements were the primary drivers of reduced HRQoL. Achieving LLDAS significantly improved physical health and planning (p=0.03) but not psychosocial domains. Permanent damage (SDI ≥1) significantly restricted physical capabilities and functional planning (p<0.01).Conclusion The Bengali Lupus-QoL is a highly reliable instrument that bridges the gap between medical data and patient experience. Standard clinical metrics like SLE-DAS and LLDAS are insufficient to capture the full psychosocial burden, highlighting the necessity of this tool for the comprehensive management of Bengali patients with SLE.

Source: Lupus Science & Medicine

DOI: 10.1136/lupus-2026-002213

Authors: Ritasman Baisya, Jyotisubhra Das, Vikas Dagar, Sourav Garai, Parasar Ghosh

Institutions: All India Institute of Medical Sciences, Kalyani, Institute of Post Graduate Medical Education and Research

Language: English

Topic: Systemic Lupus Erythematosus Research

Subfield: Rheumatology

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: gold

Estimated APC paid: $2,391