Development of a proxy-reported scale to assess motor function in infants and young children with early-onset neuromuscular disorders.
Carlos Capella-Peris, Magalie Emile-Backer, Monique O Shelton and 4 others
PMID 33270262WHAT IT FOUND
Parents and experts shaped a 43-item scale for parents and guardians to report motor function in infants and young children with early-onset neuromuscular disorders.
It is not ready for clinical use, so clinicians should not use it to judge treatment benefit.
Key findings
01The final version of the proxy-reported PMOM scale had 43 items.
02Proxy interviews produced nine themes and 32 subthemes, and the expert focus group identified five domains, including motor function and communication.
03The authors state the scale still needs a future field test before it can be recommended for use.
STILL TO COME
How it was doneWhat they foundWhat it means for PTs
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What it does not show
The scale has not been tested to show it gives consistent results, measures what it is meant to measure, or detects change. The planned future field test has not been done, so the paper does not show that the scale measures what it is intended to measure. Participants were all from the USA and most were Caucasian female proxies. This limits generalisability. Proxies in the initial interviews had children aged 1.6 to 5.8 years, so newborn and infant responses were not directly tested. The sample was small: 16 proxies, 11 experts, 10 experts in the Delphi survey and 5 different proxies in cognitive interviews.
The easy way to misread this
Do not read the 43-item PMOM as a ready-to-use measure of motor function or as proof that an intervention helps. The paper reports scale development only and states that the scale still needs a future field test before it can be recommended for use.