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Development of a proxy-reported scale to assess motor function in infants and young children with early-onset
Carlos Capella-Peris1, Magalie Emile-Backer1, Monique O Shelton1
1Neuromuscular Symptoms Unit, National Institute of Nursing Research, National Institutes of Health, Bethesda, MD, USA.
Insights
Researchers developed the Proxy Motor Outcome Measure (PMOM), a new tool for assessing motor function in young children with early-onset neuromuscular disorders (NMD). This proxy-reported scale aims to capture crucial developmental insights from caregivers.
Area of Science:
- Pediatric Neurology
- Rehabilitation Medicine
- Biomedical Engineering
Background:
- Early-onset neuromuscular disorders (NMD) significantly impact motor function development in infants and young children.
- Existing motor function assessments may not fully capture the nuances observed by proxies (caregivers) in this population.
- There is a need for a validated, proxy-reported measure to complement clinical evaluations.
Purpose of the Study:
- To develop and create a novel proxy-reported scale, the Proxy Motor Outcome Measure (PMOM).
- To evaluate motor function specifically in infants and young children diagnosed with early-onset NMD.
Main Methods:
- A mixed-methods design incorporating qualitative and quantitative research approaches.
- Development guided by a framework technique and sensitivity analyses, drawing from 30 NMD instruments.
- Data collection involved semi-structured interviews with proxies, expert focus groups, Delphi surveys, and cognitive interviews.
Main Results:
- Initial development yielded 121 items, refined through expert consensus via a two-round Delphi method to 43 items.
- Qualitative data from interviews and focus groups identified key themes and domains relevant to motor function.
- Cognitive interviews with proxies led to further refinement, resulting in the final 43-item PMOM scale.
Conclusions:
- A preliminary proxy-reported instrument, the PMOM, has been successfully developed for assessing motor function in young children with early-onset NMD.
- The PMOM has the potential to integrate proxy observations, offering valuable complementary data to clinical assessments.
- Future research will focus on establishing the reliability, validity, and responsiveness of the PMOM for clinical application.
Aim:
To develop a novel proxy-reported scale of motor function in infants and young children with early-onset neuromuscular disorders (NMD), entitled the Proxy Motor Outcome Measure (PMOM).
Design:
A mixed method design was employed, applying both qualitative and quantitative research.
Methods:
A framework technique using sensitivity analyses guided the development of the most appropriate and relevant subset of items, modelled after 30 neuromuscular disease instruments/scales. The PMOM was designed based on semi-structured interviews with 16 proxies; a focus group of 11 experts in neuromuscular diseases and scale development, 10 of whom also gave quantitative data using a two-round Delphi method survey; and cognitive interviews with five proxies. These processes were conducted between January 2014-March 2019.
Results:
Nine themes and 32 subthemes were derived from the semi-structured interviews. Five domains and three subdomains of potential items were identified by the focus group. An initial version of the PMOM scale was created with 121 items. Using the two-round Delphi method, 43 items met agreement on pre-defined requirements. The second version of the PMOM scale included these 43 and two additional items based on expert feedback. Proxies gave 114 suggestions on cognitive interviews, 99 of which were successfully addressed by the research team. The final version of the PMOM scale included 43 items.
Conclusion:
We developed a preliminary proxy-reported instrument, the PMOM, to evaluate motor function in infants and young children with early-onset NMD.
Impact:
Proxies hold a wealth of knowledge on their child's motor function during early development, which may complement clinic-based motor function testing. However, there is no validated measure of motor function that incorporates the observation of proxies of infants and young children with NMD. Future work will be focused on assessing the reliability, validity and responsiveness of the PMOM scale and implementing this tool in clinical studies.
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