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Patient-reported outcomes in multiple sclerosis: a prospective registry cohort study
Annalaura Lerede1, Jeff Rodgers2, Rod M Middleton2
1Department of Brain Sciences, Imperial College London, London W120BZ, UK.
Brain Communications
|August 22, 2023
Summary
Patient-reported outcomes effectively track physical disability in multiple sclerosis (MS) over time and across subtypes. These measures can predict transitions to progressive MS years before clinical diagnosis, revealing a potential MS prodrome.
Area of Science:
- Neurology
- Epidemiology
- Health Informatics
Background:
- Multiple sclerosis (MS) registries face challenges in long-term impact assessment.
- Online patient-reported outcomes (PROs) offer scalable, cost-effective data collection but their sensitivity is unclear.
- Leveraging registry data requires understanding PROs' validity relative to clinical measures.
Purpose of the Study:
- To validate patient-reported outcomes (PROs) for measuring physical disability in multiple sclerosis (MS).
- To assess the sensitivity of PROs to MS subtypes and disease duration.
- To explore insights into MS subtype progression using PRO data.
Main Methods:
- Retrospective and prospective cohort study of 15,976 MS patients over 11 years.
- Utilized Multiple Sclerosis Impact Scale (MSIS-29) motor component and Multiple Sclerosis Walking Scale (MSWS-12) PROs.
- Employed Monte Carlo permutation analysis on sparse registry data (91,351 MSIS-29, 68,092 MSWS-12 records) to assess validity.
Main Results:
- PROs showed significant effects of MS subtype and duration (P < 0.0001).
- PROs worsened with duration in most subtypes, except benign MS.
- PROs differed significantly between subtypes, predicting future transitions to progressive forms years before clinical detection (P < 0.0001).
Conclusions:
- Patient-reported outcomes are valid, sensitive, and cost-effective tools for long-term MS physical impact assessment.
- PROs reveal distinct worsening patterns across MS subtypes and durations.
- Advanced physical disability may precede clinical diagnosis of progressive MS, suggesting a prodromal phase.
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