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Development and validation of a muscular dystrophy-specific functional rating scale

Faculty of Physical Therapy, College of Health Science, Kaohsiung Medical University, Kaohsiung, yijilu{at}cc.kmu.edu.tw

Chwen-Yng Su

Faculty of Occupational Therapy, College of Health Science, Kaohsiung Medical University, Kaohsiung

Rei-Cheng Yang

Faculty of Sport Medicine, College of Medical Science, Kaohsiung Medical University, Kaohsiung

Wei-Lieh Su

Faculty of Occupational Therapy, College of Health Science, Kaohsiung Medical University, Kaohsiung

Yen-Mou Lu

Department of Orthopaedic Surgery, Kaohsiung Medical University Hospital, Kaohsiung

Rong-Fong Lin

Faculty of Physical Therapy, College of Health Science, Kaohsiung Medical University, Kaohsiung

Shun-Sheng Chen

Department of Neurology, Kaohsiung Chang Gung Memorial Hospital, Kaohsiung County, Taiwan

Objective: To develop a reliable and valid new rating scale for measuring the functional impact of muscular dystrophy.

Design: Prospective and longitudinal investigation.

Setting: Three academic medical centres in Taiwan and the Muscular Dystrophy Association of Taiwan.

Measures: The Brooke Scale, the Vignos Scale, the Barthel Index, muscular strength, contracture severity, and predicted forced vital capacity (FVC%).

Methods: Scale development was in three stages. In stage I, a preliminary pool of 53 items was generated from patient interviews (n-/25), literature review, existing functional rating scales and expert opinion. In stage II, these items were administered to 85 patients with muscular dystrophy. The resulting data were analysed to construct a rating scale (the Muscular Dystrophy Functional Rating Scale, MDFRS) that encompassed four unidimensional constructs: mobility, basic activities of daily living, arm function and impairment. In stage III, the measurement properties of this rating scale were assessed in 121 muscular dystrophy patients different from those examined with the preliminary instrument.

Results: Internal consistency reliability was excellent for all domains of the final 33-item scale, with values of Cronbach’s alpha ranging from 0.84 to 0.97. Intraclass correlation coefficients for test-retest and inter-rater reliability were 0.99 for all domains of the MDFRS. The MDFRS showed moderate to high correlations with a range of functional rating scales measuring similar aspects and impairment parameters (Spearman’s rho=0.65-0.91; P<0.001, each). Confirmatory factor analysis supported a unitary construct of the four-dimensional MDFRS. The MDFRS had small floor and ceiling effects in the study samples. Sensitivity to change was confirmed by large standardized response means for the MDFRS total score.

Conclusions: The MDFRS is a reliable and valid disease-specific measure of functional status for patients with muscular dystrophy.

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