SPOTLIGHT ON SJOGREN'S: DISEASE BURDEN AND UNMET NEEDS FOR PATIENTS IN THE UNITED KINGDOM (UK)
Author(s)
Monica Gupta, MD1, Louise Mountford, n/a2, Pat Wolstenholme, BA2, Paul O'Reilly, PhD3, Luke Dunham, MSc3, Carl Bewick, n/a3, Shweta Takyar, MPharm4, Gavin Harper, BA Hons5, Thomas Dewar, PhD5.
1Department of Rheumatology, Gartnavel General Hospital, Glasgow, United Kingdom, 2Sjögren’s UK, Birmingham, United Kingdom, 3Novartis Pharmaceuticals UK Ltd., London, United Kingdom, 4Novartis Healthcare Private Limited, Hyderabad, India, 5Adelphi Real World, Bollington, United Kingdom.
1Department of Rheumatology, Gartnavel General Hospital, Glasgow, United Kingdom, 2Sjögren’s UK, Birmingham, United Kingdom, 3Novartis Pharmaceuticals UK Ltd., London, United Kingdom, 4Novartis Healthcare Private Limited, Hyderabad, India, 5Adelphi Real World, Bollington, United Kingdom.
OBJECTIVES: To describe the burden, treatment satisfaction and unmet needs reported by adults with Sjögren’s in the UK.
METHODS: Cross-sectional online survey of UK adults (≥18 years) reporting a Sjögren’s diagnosis, recruited through Sjögren’s UK (July-September 2024). Structured survey questions collected self-reported symptom burden, emotional wellbeing, work and financial impacts, and treatment expectations. All analyses were descriptive.
RESULTS: 102 UK adults completed the survey (92% female; median age 66 years [IQR 59, 74]; median age at diagnosis 58 years [IQR 49, 64]). Symptoms: Dry or itchy eyes (99%), dry mouth or lips (95%), and tiredness (84%) were the most common reported symptoms in the past month. Treatment unmet need: 72% of participants were currently receiving prescription treatments and 89% reported current treatment dissatisfaction and/or believed better disease control was possible. Top patient-reported treatment goal priorities were preventing disease worsening (60%), improving quality of life (42%), and reducing fatigue (35%). Patients perceived fatigue and sleep quality as under-prioritised in care. 70% rated sleep quality as bad in the past month, with 64% reporting high impact on quality of life (score 5-7 on a 7-point scale, where 7 was a ‘significant impact’). Economic / work burden: Mean monthly out-of-pocket expenses declared by respondents were £166 with greatest spending on dental fees and assistance with household tasks. 19% reported some level of difficulty living on their current household income due to medical expenses; 18% reported some level of ongoing financial concerns due to Sjögren’s. 28% were in paid employment. 38% of patients had considered reducing working hours (even if they did not), 33% had already done so, and 26% had taken early retirement.
CONCLUSIONS: Adults with Sjögren’s in the UK reported substantial symptom burden, treatment dissatisfaction and notable financial and employment impacts. More effective therapies and holistic management approaches are needed to address unmet patient needs.
METHODS: Cross-sectional online survey of UK adults (≥18 years) reporting a Sjögren’s diagnosis, recruited through Sjögren’s UK (July-September 2024). Structured survey questions collected self-reported symptom burden, emotional wellbeing, work and financial impacts, and treatment expectations. All analyses were descriptive.
RESULTS: 102 UK adults completed the survey (92% female; median age 66 years [IQR 59, 74]; median age at diagnosis 58 years [IQR 49, 64]). Symptoms: Dry or itchy eyes (99%), dry mouth or lips (95%), and tiredness (84%) were the most common reported symptoms in the past month. Treatment unmet need: 72% of participants were currently receiving prescription treatments and 89% reported current treatment dissatisfaction and/or believed better disease control was possible. Top patient-reported treatment goal priorities were preventing disease worsening (60%), improving quality of life (42%), and reducing fatigue (35%). Patients perceived fatigue and sleep quality as under-prioritised in care. 70% rated sleep quality as bad in the past month, with 64% reporting high impact on quality of life (score 5-7 on a 7-point scale, where 7 was a ‘significant impact’). Economic / work burden: Mean monthly out-of-pocket expenses declared by respondents were £166 with greatest spending on dental fees and assistance with household tasks. 19% reported some level of difficulty living on their current household income due to medical expenses; 18% reported some level of ongoing financial concerns due to Sjögren’s. 28% were in paid employment. 38% of patients had considered reducing working hours (even if they did not), 33% had already done so, and 26% had taken early retirement.
CONCLUSIONS: Adults with Sjögren’s in the UK reported substantial symptom burden, treatment dissatisfaction and notable financial and employment impacts. More effective therapies and holistic management approaches are needed to address unmet patient needs.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR94
Topic
Patient-Centered Research
Topic Subcategory
Patient Behavior and Incentives, Patient-reported Outcomes & Quality of Life Outcomes
Disease
Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic), Pain)