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Abstract
Objective: To develop a patient-based, linearly weighted scale that captures activity and social participation limitations in patients with Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), and gammopathy-related polyneuropathy (MGUSP).
Methods: A preliminary Rasch-built Overall Disability Scale (R-ODS) containing 146 activity and participation items was constructed, based on the WHO International Classification of Functioning, Disability and Health, literature search, and patient interviews. The preliminary R-ODS was assessed twice (interval: 2–4 weeks; test-retest reliability studies) in 294 patients who experienced GBS in the past (n = 174) or currently have stable CIDP (n = 80) or MGUSP (n = 40). Data were analyzed using the Rasch unidimensional measurement model (RUMM2020).
Results: The preliminary R-ODS did not meet the Rasch model expectations. Based on disordered thresholds, misfit statistics, item bias, and local dependency, items were systematically removed to improve the model fit, regularly controlling the class intervals and model statistics. Finally, we succeeded in constructing a 24-item scale that fulfilled all Rasch requirements. “Reading a newspaper/book” and “eating” were the 2 easiest items; “standing for hours” and “running” were the most difficult ones. Good validity and reliability were obtained.
Conclusion: The R-ODS is a linearly weighted scale that specifically captures activity and social participation limitations in patients with GBS, CIDP, and MGUSP. Compared to the Overall Disability Sum Score, the R-ODS represents a wider range of item difficulties, thereby better targeting patients with different ability levels. If responsive, the R-ODS will be valuable for future clinical trials and follow-up studies in these conditions.
Footnotes
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Study funding: GBS-CIDP Foundation International and Talecris Talents program.
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Supplemental data at www.neurology.org
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- ALDS
- AMC Linear Disability Score
- CI
- confidence interval
- CIDP
- chronic inflammatory demyelinating polyradiculoneuropathy
- CTT
- classic test theory
- DIF
- differential item functioning
- GBS
- Guillain-Barré syndrome
- ICF
- International Classification of Functioning, Disability and Health
- IRT
- item response theory
- MGUSP
- gammopathy-related polyneuropathy
- MMN
- multifocal motor neuropathy
- ODSS
- Overall Disability Sum Score
- PSI
- Person Separation Index
- R-ODS
- Rasch-built Overall Disability Scale
- RUMM2020
- Rasch unidimensional measurement model
- VSN
- Vereniging Spierziekten Nederland
- Received April 27, 2010.
- Accepted September 24, 2010.
- Copyright © 2011 by AAN Enterprises, Inc.
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