Outcome measures in muscular dystrophy rehabilitation: an ICF content comparison approach to the most commonly used MD scales.
Mihaela Taranu, Raquel Sebio-García, José C Milisenda and 3 others
PMID 39886857WHAT IT FOUND
The 116 included studies used 142 outcome measures, mostly covering activity, participation and body functions.
Speech, swallowing, cognitive and environmental domains were not common.
Key findings
01116 studies were included, and 142 measurement instruments or tests were identified.
02Most linked concepts fell in activity and participation, followed by body functions, with only 4 environmental factor categories.
03MD-specific scales, speech and swallowing assessments, and cognitive assessments did not meet the 5% threshold.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
Only English and Spanish studies were included. The search covered 2012 to 2022, so earlier outcome measures may be missing. The review excluded infantile populations and discarded most Duchenne muscular dystrophy studies because it required at least half of participants over 18. Diagnostic techniques and equipment studies were excluded, which may have removed environmental factors such as technology. The included studies had many different designs, including 47 cross-sectional studies and 44 case series, so the findings describe measurement use rather than treatment effects. The paper reports 116 included studies but not a total participant count.
Declared interests
The authors disclosed receipt of financial support for the research. The work was supported by the Spanish Society of Physical Medicine and Rehabilitation through the SERMEF Annual Grant 2022.
The easy way to misread this
Do not read the 142 instruments as a recommended assessment battery for muscular dystrophy. The review identified what studies used and linked concepts to ICF domains. It did not compare instruments or show that any improves patient care.