Related Experiment Video
Updated: Feb 3, 2026
10:46
A Method of Trigonometric Modelling of Seasonal Variation Demonstrated with Multiple Sclerosis Relapse Data
Published on: December 9, 2015
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Patient Experiences with Relapsing-Remitting and Primary Progressive Multiple Sclerosis: Development of a Conceptual
Ekin Seçinti1, Louise Barrett2, Laure Delbecque3
1Eli Lilly and Company, Indianapolis, IN, 46285, USA. secinti_ekin@lilly.com.
Neurology and Therapy
|February 1, 2026
Summary
Living with multiple sclerosis (MS) involves significant patient-reported impacts on daily life, including fatigue and mobility issues. Understanding these experiences is crucial for developing better clinical outcome assessments (COAs) in multiple sclerosis (MS) research.
Area of Science:
- Neurology
- Patient-Reported Outcomes
- Clinical Trial Methodology
Background:
- Multiple sclerosis (MS) is a neurodegenerative autoimmune disorder impacting patients' quality of life.
- Clinical outcome assessments (COAs) are vital for measuring patient-centered outcomes in clinical trials.
- Validating COAs requires understanding the patient experience through conceptual models.
Purpose of the Study:
- To explore and document the patient experience of signs, symptoms, and health-related quality of life impacts in relapsing-remitting MS (RRMS) and primary progressive MS (PPMS).
- To inform future COA validation research by developing a conceptual model of patient experiences.
Main Methods:
- A targeted literature review (TLR) of 10 publications was conducted.
- Qualitative semi-structured interviews were performed with 16 patients (7 RRMS, 9 PPMS) in the USA.
- Data from the TLR and interviews were synthesized to create a conceptual model.
Main Results:
- Commonly reported symptoms include fatigue, muscle weakness, difficulty walking, sleep disturbances, and bladder issues.
- Patients experience significant negative emotional, physical, and social impacts.
- Symptom management involves rest, activity planning, and family support.
Conclusions:
- Living with RRMS and PPMS presents a multidimensional burden.
- A conceptual model was developed, integrating TLR and interview findings.
- This model can enhance understanding of patient experiences and aid COA content validity evaluation for new MS treatments.
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