Content validity of mobility measures in arthrogryposis multiplex congenita: engaging clinicians and people with lived experience.
Ahlam Zidan, Laurie Snider, Jaclyn Sions and 4 others
PMID 40831880WHAT IT FOUND
Standard mobility tools for children with arthrogryposis miss key aspects like pain, fatigue, and compensatory strategies such as scooting.
They do not fully capture real-world mobility challenges, so clinicians should supplement these measures with assessments of assistive device use and environmental barriers.
Key findings
01Experts identified that common mobility measures fail to capture critical aspects of mobility for children with arthrogryposis, including pain, fatigue, orthosis use, and compensatory strategies like scooting or rolling.
02While most items had high relevance scores, the Patient-Reported Outcomes Measurement Information System (PROMIS) Young Adult version scored lower on content validity, and several items in other tools were deemed irrelevant to the specific mobility construct in this population.
03The WeeFIM and PROMIS tools covered transfers and wheelchair mobility more comprehensively than the Functional Mobility Scale and Gillette FAQ, which focused primarily on walking.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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What it does not show
The expert panel was small (seven people), which may limit the generalizability of the findings. The study only assessed content validity; it did not test the reliability or construct validity of these measures in the AMC population. Some items in the PROMIS Young Adult version had lower relevance scores, suggesting the tool may not be suitable for this specific age group in AMC without modification.
Declared interests
The study was supported by a clinical research scholar award from the Fonds de recherche du Québec- Santé, a Rising Star Award from the American Society for Bone and Mineral Research, the Islamic Developmental Bank doctoral scholarship, and the Centre for Interdisciplinary Research in Rehabilitation.
The easy way to misread this
Do not assume these tools are invalid for measuring walking distance or basic transfers, as they showed high relevance for those specific constructs. The issue is that they are incomplete for the broader picture of mobility in AMC, missing critical elements like pain, fatigue, and compensatory strategies, so they should not be used as the sole measure of functional mobility.