UNDERSTANDING THE HUMANISTIC BURDEN OF SJÖGREN’S DISEASE (SJD): A SYSTEMATIC LITERATURE REVIEW (SLR)
Author(s)
Thomas Grader-Beck, MD1, Dana DiRenzo, MD, MHS2, Anjana Lalla, MS3, Shweta Takyar, MPharm4, Vinay Pandey, MPharm5, Cindy Chan, PharmD3, Antton Egana, MD3;
1Johns Hopkins School of Medicine, Baltimore, MD, USA, 2University of Pennsylvania, Division of Rheumatology, Philadelphia, PA, USA, 3Novartis Pharmaceuticals Corporation, East Hanover, NJ, USA, 4Novartis Healthcare Private Ltd, Hyderabad, India, 5Novartis Healthcare Private Ltd., Hyderabad, India
1Johns Hopkins School of Medicine, Baltimore, MD, USA, 2University of Pennsylvania, Division of Rheumatology, Philadelphia, PA, USA, 3Novartis Pharmaceuticals Corporation, East Hanover, NJ, USA, 4Novartis Healthcare Private Ltd, Hyderabad, India, 5Novartis Healthcare Private Ltd., Hyderabad, India
OBJECTIVES: SjD is a systemic, heterogeneous, autoimmune disease affecting multiple organs and is associated with debilitating fatigue, pain, and social impairment impacting health-related quality of life (HRQoL). This SLR summarizes published evidence on the global humanistic burden associated with SjD.
METHODS: Using established guidelines (NICE and PRISMA), studies were identified using Embase and MEDLINE from January 2012 to January 2025, supplemented by conference proceedings (last 3 years) and bibliographic searches.
RESULTS: Of 101 studies, most were conducted in UK (n=12), South Korea (n=11), China (n=9), Italy (n=9), Turkey (n=8), and United States (n=8). Common disease-specific outcome measures included: EULAR Sjögren’s Syndrome Patient Reported Index (ESSPRI; n=60), EULAR Sicca Score (EULAR-SS, n=8) and Profile of Fatigue and Discomfort (PROFAD; n=5). Generic HRQoL scales were VAS (dryness, pain, or fatigue; n=24), Hospital Anxiety and Depression Scale (HADS; n=22), and the 36-Item Short Form Health Survey (SF-36; n=15). Compared with healthy controls, patients with SjD experienced worse fatigue and dryness (ESSPRI), higher anxiety and depression (HADS-Anxiety: 6.1-7.4 vs 3.3-5.4; HADS-Depression: 6.4-6.7 vs 4.0-5.1), lower functionality (EuroQoL-5 dimension: 0.77 vs 0.94), poorer physical and social functioning (SF-36: 55.3-78.7 vs 82.4-93.0), decreased ability to participate in activities of daily living, and higher mental fatigue (Multidimensional Fatigue Inventory: 11.0 vs 8.4). Poor sleep (duration and quality) was highly prevalent (Pittsburgh Sleep Quality Index: 6.6-10.9 vs 4.9-5.9). Work productivity and sexual function were also negatively affected. Risk factors associated with worse HRQoL impact were higher disease activity, immunological status (high IgG level), symptom burden, and specific disease manifestations including interstitial lung disease.
CONCLUSIONS: This SLR underscores the multidimensional and complex burden of SjD, creating physical and socioemotional impairments and contributing to significant reductions in HRQoL. Treatment options addressing this multifaceted humanistic burden are urgently needed.
METHODS: Using established guidelines (NICE and PRISMA), studies were identified using Embase and MEDLINE from January 2012 to January 2025, supplemented by conference proceedings (last 3 years) and bibliographic searches.
RESULTS: Of 101 studies, most were conducted in UK (n=12), South Korea (n=11), China (n=9), Italy (n=9), Turkey (n=8), and United States (n=8). Common disease-specific outcome measures included: EULAR Sjögren’s Syndrome Patient Reported Index (ESSPRI; n=60), EULAR Sicca Score (EULAR-SS, n=8) and Profile of Fatigue and Discomfort (PROFAD; n=5). Generic HRQoL scales were VAS (dryness, pain, or fatigue; n=24), Hospital Anxiety and Depression Scale (HADS; n=22), and the 36-Item Short Form Health Survey (SF-36; n=15). Compared with healthy controls, patients with SjD experienced worse fatigue and dryness (ESSPRI), higher anxiety and depression (HADS-Anxiety: 6.1-7.4 vs 3.3-5.4; HADS-Depression: 6.4-6.7 vs 4.0-5.1), lower functionality (EuroQoL-5 dimension: 0.77 vs 0.94), poorer physical and social functioning (SF-36: 55.3-78.7 vs 82.4-93.0), decreased ability to participate in activities of daily living, and higher mental fatigue (Multidimensional Fatigue Inventory: 11.0 vs 8.4). Poor sleep (duration and quality) was highly prevalent (Pittsburgh Sleep Quality Index: 6.6-10.9 vs 4.9-5.9). Work productivity and sexual function were also negatively affected. Risk factors associated with worse HRQoL impact were higher disease activity, immunological status (high IgG level), symptom burden, and specific disease manifestations including interstitial lung disease.
CONCLUSIONS: This SLR underscores the multidimensional and complex burden of SjD, creating physical and socioemotional impairments and contributing to significant reductions in HRQoL. Treatment options addressing this multifaceted humanistic burden are urgently needed.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR110
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic), Pain)