SPOTLIGHT ON SJOGREN'S: DISEASE BURDEN AND UNMET NEEDS FOR PATIENTS IN SPAIN
Author(s)
Carlos Guillén, Prof. Phd. MD.1, Miguel Galindo, PhD2, Maria Jose Portero, MSc2, CARLES BLANCH MUR, PhD2, Shweta Takyar, MPharm3, Gavin Harper, BA Hons4, Thomas Dewar, PhD4.
1Department of Rheumatology, Ramón y Cajal University Hospital, Madrid, Spain, 2Novartis Farmacéutica, Barcelona, Spain, 3Novartis Healthcare Private Limited, Hyderabad, India, 4Adelphi Real World, Bollington, United Kingdom.
1Department of Rheumatology, Ramón y Cajal University Hospital, Madrid, Spain, 2Novartis Farmacéutica, Barcelona, Spain, 3Novartis Healthcare Private Limited, Hyderabad, India, 4Adelphi Real World, Bollington, United Kingdom.
OBJECTIVES: To describe the burden, treatment satisfaction and unmet needs reported by adults with Sjögren’s disease (SjD) in Spain.
METHODS: Cross-sectional online survey of Spanish adults (≥18 years) reporting a SjD diagnosis, recruited through the Asociación Española de Sjögren (AES; 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: 127 Spanish adults completed the survey (94% female; median age 51 years [IQR 45, 59]; median age at diagnosis 43 years [IQR 35, 49]). Symptoms: Dry mouth or lips (87%), dry or itchy eyes (87%) and tiredness (87%) were the most common reported symptoms in the past month. Treatment unmet needs: 62% of participants were currently receiving prescription treatments and 93% reported current treatment dissatisfaction and/or believed better disease control was possible. Top patient-reported treatment goals were preventing disease worsening (57%), improving quality of life (42%), and improving overall symptoms (39%). Patients perceived fatigue and sleep quality as under-prioritised in care. 76% rated sleep quality as bad in the past month, with 73% reporting high impact on quality of life (score 5-7 on a 7-point scale, where 7 was ‘significant impact’). Economic / work burden: Mean monthly out-of-pocket expenses declared by respondents were €367 with greatest spending on assistance with household tasks and medical fees. 19% reported some level of difficulty living on their current household income due to medical expenses; 26% reported some level of ongoing financial concerns due to Sjögren’s. 68% were in paid-employment. 61% had considered terminating their employment (even if they did not), with 11% having already done so. 26% had declined a promotion.
CONCLUSIONS: Adults with SjD in Spain 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 Spanish adults (≥18 years) reporting a SjD diagnosis, recruited through the Asociación Española de Sjögren (AES; 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: 127 Spanish adults completed the survey (94% female; median age 51 years [IQR 45, 59]; median age at diagnosis 43 years [IQR 35, 49]). Symptoms: Dry mouth or lips (87%), dry or itchy eyes (87%) and tiredness (87%) were the most common reported symptoms in the past month. Treatment unmet needs: 62% of participants were currently receiving prescription treatments and 93% reported current treatment dissatisfaction and/or believed better disease control was possible. Top patient-reported treatment goals were preventing disease worsening (57%), improving quality of life (42%), and improving overall symptoms (39%). Patients perceived fatigue and sleep quality as under-prioritised in care. 76% rated sleep quality as bad in the past month, with 73% reporting high impact on quality of life (score 5-7 on a 7-point scale, where 7 was ‘significant impact’). Economic / work burden: Mean monthly out-of-pocket expenses declared by respondents were €367 with greatest spending on assistance with household tasks and medical fees. 19% reported some level of difficulty living on their current household income due to medical expenses; 26% reported some level of ongoing financial concerns due to Sjögren’s. 68% were in paid-employment. 61% had considered terminating their employment (even if they did not), with 11% having already done so. 26% had declined a promotion.
CONCLUSIONS: Adults with SjD in Spain 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
PCR205
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)