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Reconstructing the Rasch-Built Myotonic Dystrophy Type 1 Activity and Participation Scale
Mieke C E Hermans1, Janneke G J Hoeijmakers1, Catharina G Faber1
1Department of Neurology, Maastricht University Medical Center, Maastricht, the Netherlands.
Plos One
|October 21, 2015
Summary
A new Rasch-built scale for myotonic dystrophy type 1 (DM1) activity and participation (DM1-ActivC) was reconstructed with 25 items. This validated scale meets clinimetric standards for improved clinical use in DM1 patients.
Area of Science:
- Clinical assessment and psychometrics
- Neuromuscular disease research
Background:
- Previous Rasch-built scale for DM1 activity and participation faced criticism for small cohort size and item phrasing.
- Limitations hampered the clinical utility of the prior scale for myotonic dystrophy type 1 patients.
Purpose of the Study:
- To reconstruct and validate a Rasch-built activity and participation scale for clinical use in myotonic dystrophy type 1 (DM1).
- To improve the psychometric properties and clinical applicability of a DM1-specific assessment tool.
Main Methods:
- Rasch analyses were performed on an expanded questionnaire with 146 items.
- Data from 340 patients with DM1 were used for the reconstruction process.
- Rigorous data quality control, model fit assessment, and item bias analysis were conducted.
Main Results:
- The reconstructed DM1-ActivC scale comprises 25 items.
- The scale demonstrated good Rasch model fit, including construct convergent validity.
- Reliability of item weights and person locations, along with unidimensionality, were confirmed.
Conclusions:
- The reconstructed DM1-ActivC scale now meets modern clinimetric requirements.
- The study recommends the use of DM1-ActivC in future longitudinal trials for myotonic dystrophy type 1.
- Further research is needed to determine the responsiveness of the DM1-ActivC scale.

