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Validation of self-reported neurological disability in multiple sclerosis
M H Verdier-Taillefer1, E Roullet, P Cesaro
1INSERM U 360, Villejuif, France.
International Journal of Epidemiology
|February 1, 1994
Summary
Multiple sclerosis (MS) patients can accurately self-assess their disability using questionnaires. This method reliably predicts neurologist ratings, offering a valuable tool for large-scale studies.
Area of Science:
- Neurology
- Rehabilitation Medicine
- Patient-Reported Outcomes
Background:
- Assessing disability in multiple sclerosis (MS) is crucial for patient management.
- Traditional methods rely on clinician-administered scales like the Expanded Disability Status Scale (EDSS).
- Patient self-assessment tools can enhance data collection efficiency and patient engagement.
Purpose of the Study:
- To evaluate the reliability of patient self-assessed disability scores compared to neurologist ratings in multiple sclerosis.
- To determine if a validated auto-questionnaire can predict EDSS scores accurately.
Main Methods:
- 129 unselected multiple sclerosis patients completed a 25-item disability auto-questionnaire.
- Neurologists, blinded to patient responses, assigned EDSS scores.
- Correlation and linear regression analyses were used to compare self-assessment scores with EDSS ratings.
Main Results:
- High correlation (r > 0.50) was found between patient self-assessments and neurologist ratings for five of eight functional system scores.
- A linear regression model predicted neurologist-assigned EDSS scores from patient responses in 73% of cases.
- Model performance was consistent across different patient demographics and disease courses.
Conclusions:
- Patients can reliably self-assess most aspects of multiple sclerosis disability.
- Validated auto-questionnaires offer a practical approach for disability assessment in large or community-based studies.
- Further collaborative efforts are recommended to develop and validate such patient-reported outcome measures.