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Updated: Aug 19, 2026
Measuring the Functional Abilities of Children Aged 3-6 Years Old with Observational Methods and Computer Tools
Published on: June 20, 2020
Development of a functional ability scale for children and young people with myalgic encephalopathy (ME)/chronic
1Association of Young People with ME, Milton Keynes MK2 2XD, UK. jill@ayme.org.uk
Insights
A new functional ability scale was developed for children with myalgic encephalopathy (ME) by young people with the condition. This scale, designed by patients, accurately measures their daily functional abilities, empowering them in their own care.
Area of Science:
- Pediatrics
- Chronic Illness Management
- Patient-Reported Outcomes
Background:
- Myalgic encephalopathy (ME) presents complex symptoms and unpredictable patterns, making it challenging to assess functional ability in children.
- Caregivers often struggle to accurately estimate a child's daily functional capacity, leading to potential over or underestimations.
Purpose of the Study:
- To develop a functional ability scale specifically for children and young people with ME.
- To ensure the scale is designed by the target users to accurately reflect their lived experience and abilities.
Main Methods:
- A new scale was developed, adapting the Moss Ability Scale.
- Critiques and validity assessments (face and content) were gathered from 251 children and young people through the Association of Young People with ME (AYME).
Main Results:
- The developed scale measures functional ability from 0 to 100 percent.
- 99% of participating young people agreed the final scale was 'workable' or better, indicating high user acceptance and perceived validity.
Conclusions:
- A patient-designed functional ability scale can effectively measure the capabilities of children and young people with ME.
- This approach supports patient-centered care by empowering young individuals in managing their health and communicating their needs.
Abstract:
The numerous symptoms and unpredictable pattern of myalgic encephalopathy (ME) make it difficult to describe, especially for children. It was left to carers to guess what the child could achieve each day, often leading to over/underestimates. A functional ability scale was needed, which measured from 0 to 100 percent able and that children and young people themselves designed. A new scale was developed from the Moss Ability Scale using the critique of 251 children and young people from the Association of Young People with ME (AYME). Responding to the shift in emphasis towards patients taking an active role in their own care, it was felt these young people would know whether the scale measured what it had set out to measure, and were asked questions on the face and content validity of the scale. There was a 99 percent agreement between the young people that the final scale was 'workable' or better.
