DISCONNECTION BETWEEN SYMPTOM FREQUENCY, BURDEN, AND PATIENT PRIORITIES FOR DELAYING MULTIPLE SCLEROSIS PROGRESSION: A MULTINATIONAL QUALITATIVE STUDY
Author(s)
Dorsa Khazaei, MSc1, Katja Rudell, PhD2, Cécile Gousset, PhD3, Lita Araujo, BSc, MSc, PhD4, Nele Von Horsten, PhD5, Lisa Emrich, PhD6, Tommi Tervonen, PhD7, Guillaume Montagu, MSc3.
1Kielo Research, London, United Kingdom, 2Kielo Research, Cambridge, United Kingdom, 3Sanofi, Gentilly, France, 4Sanofi, Cambridge, MA, USA, 5Patient advocate, Pirna, Germany, 6Patient advocate, Accelerated Cure Project, Waltham, MA, USA, 7Kielo Research, Zug, Switzerland.
1Kielo Research, London, United Kingdom, 2Kielo Research, Cambridge, United Kingdom, 3Sanofi, Gentilly, France, 4Sanofi, Cambridge, MA, USA, 5Patient advocate, Pirna, Germany, 6Patient advocate, Accelerated Cure Project, Waltham, MA, USA, 7Kielo Research, Zug, Switzerland.
OBJECTIVES: While motor impairment dominates MS clinical assessments, its alignment with patients’ priorities remains poorly characterized. This qualitative study aimed to map the MS patient experience across relapsing-remitting MS (RRMS), non-relapsing secondary progressive MS (nrSPMS), and primary progressive MS (PPMS) to establish patient perspectives on delaying disease progression.
METHODS: Semi-structured interviews (50-90 minutes) were conducted remotely with N=45 adults across the US, UK, and Germany (15 RRMS, 15 nrSPMS, 15 PPMS; 5 per subtype per country). Participants reported symptoms and impacts (spontaneously then probed), ranked their most bothersome symptoms and impacts, and identified the functions to preserve to prevent disease progression. Transcripts were coded deductively and inductively in Atlas.ti; symptom-to-impact causal relationships represented with Sankey diagrams (generated in R). Patient-Determined Disease Steps (PDDS) captured disability severity.
RESULTS: Participants median age: 50 years (range 30-76); 29/45 female. Mean PDDS scores: 2.9 (RRMS), 5.3 (PPMS), 5.7 (nrSPMS). A disconnect between symptom frequency, bothersomeness, and priority to delay progression emerged across all phenotypes. Limbs weakness/heaviness was the most frequently reported (44/45) but ranked second in bothersomeness (20/45 in top 3) then ranked first domain to delay MS worsening. Fatigue was the third most frequent symptom (42/45) but first by bothersomeness (21/45 in top 3) and second to delay MS worsening. Sankey diagrams showed that motor symptoms drove impacts on physical impacts, social functions and work productivity respectively, whereas fatigue mapped first to work productivity social functioning and physical impact.
CONCLUSIONS: While fatigue was most bothersome day-to-day, patients prioritized preventing motor decline and walking limitations when considering long-term disease progression. It suggests a disconnection between symptoms patients find most bothersome and functions they wish to preserve. These findings support patient-grounded relevance of motor impairment assessment while highlighting the need to incorporate cerebral function and sensory endpoints to better integrate patients' everyday experience.
METHODS: Semi-structured interviews (50-90 minutes) were conducted remotely with N=45 adults across the US, UK, and Germany (15 RRMS, 15 nrSPMS, 15 PPMS; 5 per subtype per country). Participants reported symptoms and impacts (spontaneously then probed), ranked their most bothersome symptoms and impacts, and identified the functions to preserve to prevent disease progression. Transcripts were coded deductively and inductively in Atlas.ti; symptom-to-impact causal relationships represented with Sankey diagrams (generated in R). Patient-Determined Disease Steps (PDDS) captured disability severity.
RESULTS: Participants median age: 50 years (range 30-76); 29/45 female. Mean PDDS scores: 2.9 (RRMS), 5.3 (PPMS), 5.7 (nrSPMS). A disconnect between symptom frequency, bothersomeness, and priority to delay progression emerged across all phenotypes. Limbs weakness/heaviness was the most frequently reported (44/45) but ranked second in bothersomeness (20/45 in top 3) then ranked first domain to delay MS worsening. Fatigue was the third most frequent symptom (42/45) but first by bothersomeness (21/45 in top 3) and second to delay MS worsening. Sankey diagrams showed that motor symptoms drove impacts on physical impacts, social functions and work productivity respectively, whereas fatigue mapped first to work productivity social functioning and physical impact.
CONCLUSIONS: While fatigue was most bothersome day-to-day, patients prioritized preventing motor decline and walking limitations when considering long-term disease progression. It suggests a disconnection between symptoms patients find most bothersome and functions they wish to preserve. These findings support patient-grounded relevance of motor impairment assessment while highlighting the need to incorporate cerebral function and sensory endpoints to better integrate patients' everyday experience.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR19
Topic
Patient-Centered Research
Disease
Neurological Disorders