BURDEN OF SJOGREN'S DISEASE BY SEVERITY: A REAL-WORLD ANALYSIS OF THE ADELPHI DISEASE SPECIFIC PROGRAM
Author(s)
Amie Devlin, MPH, PhD1, Femke De Ruyck, MSc1, Jack Robert Boyd Milligan, BA, MA2, James Mullen, BSc2.
1Argenx, Ghent, Belgium, 2Adelphi Real World, Bollington, United Kingdom.
1Argenx, Ghent, Belgium, 2Adelphi Real World, Bollington, United Kingdom.
OBJECTIVES: Sjögren’s disease (SjD) is a chronic, progressive, autoimmune disease associated with substantial burden. Real-world evidence describing burden by disease severity and manifestation remains limited. This study describes employment, humanistic burden, and healthcare resource utilization (HCRU) by SjD severity, including a subgroup with moderate-to-severe disease and peripheral nervous system (PNS) involvement.
METHODS: This secondary analysis used data from the Adelphi Real World SjD Disease Specific Programme™, a cross-sectional survey of rheumatologists and consulting adult patients with confirmed SjD in France, Germany, Italy, Spain, and the United States (July-October 2018). Data were collected via physician record forms (n=1,879) and voluntary patient self-completion forms (n=880). Disease-severity subgroups were defined using proxy Clinical EULAR Sjögren’s Syndrome Disease Activity Index (ClinESSDAI) scores, a physician-reported measure of systemic disease activity, derived from organ involvement: mild (<6), moderate-to-severe (≥6). Moderate-to-severe patients with PNS involvement (ms-PNS) were evaluated as a subgroup. Descriptive analyses assessed employment status, patient-reported pain (1-10 scale; 1=mild pain, 10=worst imaginable pain), fatigue, Work Productivity and Activity Impairment (WPAI), and physician-reported HCRU.
RESULTS: Among 1,879 patients with SjD (89% female, mean age 53.2 years [SD 12.2]); 43% had mild disease, 57% had moderate-to-severe, and 8% of the overall population had ms-PNS. Full-time employment was 47% in mild disease, 36% in moderate-to-severe, and 32% in ms-PNS. Retirement rates were 16%, 17%, and 26% for mild, moderate-to-severe, and ms-PNS, respectively, and long-term sick leave rates were 1%, 3%, and 3%. WPAI activity impairment was 31%, 42%, and 46%, respectively. Severe pain (≥7) was reported by 14%, 18%, and 26%, and mean FACIT-Fatigue scores were 34.0, 29.5, and 27.8, respectively. Mean consultations over 12 months were 6.4, 8.3, and 9.1, and hospitalization rates were 3%, 13%, and 19%.
CONCLUSIONS: In this multinational real-world cohort, patients with moderate-to-severe SjD (particularly those with PNS involvement) showed high employment-related, symptomatic, functional, and healthcare burden.
METHODS: This secondary analysis used data from the Adelphi Real World SjD Disease Specific Programme™, a cross-sectional survey of rheumatologists and consulting adult patients with confirmed SjD in France, Germany, Italy, Spain, and the United States (July-October 2018). Data were collected via physician record forms (n=1,879) and voluntary patient self-completion forms (n=880). Disease-severity subgroups were defined using proxy Clinical EULAR Sjögren’s Syndrome Disease Activity Index (ClinESSDAI) scores, a physician-reported measure of systemic disease activity, derived from organ involvement: mild (<6), moderate-to-severe (≥6). Moderate-to-severe patients with PNS involvement (ms-PNS) were evaluated as a subgroup. Descriptive analyses assessed employment status, patient-reported pain (1-10 scale; 1=mild pain, 10=worst imaginable pain), fatigue, Work Productivity and Activity Impairment (WPAI), and physician-reported HCRU.
RESULTS: Among 1,879 patients with SjD (89% female, mean age 53.2 years [SD 12.2]); 43% had mild disease, 57% had moderate-to-severe, and 8% of the overall population had ms-PNS. Full-time employment was 47% in mild disease, 36% in moderate-to-severe, and 32% in ms-PNS. Retirement rates were 16%, 17%, and 26% for mild, moderate-to-severe, and ms-PNS, respectively, and long-term sick leave rates were 1%, 3%, and 3%. WPAI activity impairment was 31%, 42%, and 46%, respectively. Severe pain (≥7) was reported by 14%, 18%, and 26%, and mean FACIT-Fatigue scores were 34.0, 29.5, and 27.8, respectively. Mean consultations over 12 months were 6.4, 8.3, and 9.1, and hospitalization rates were 3%, 13%, and 19%.
CONCLUSIONS: In this multinational real-world cohort, patients with moderate-to-severe SjD (particularly those with PNS involvement) showed high employment-related, symptomatic, functional, and healthcare burden.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR39
Topic
Clinical Outcomes, Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic), Pain)