A team of researchers, including Uta Behrends who has previously worked on an ME Research UK-funded project, have developed new tools to measure levels of activity and participation in children and young people (CYP)with ‘post-acute infection and vaccination syndromes and/or ME/CFS’.
In their paper, the authors state that the development of these tools is essential as:
“Young people frequently withdraw from school, reduce activities, and require assistance at home. In severe cases, even basic activities such as personal hygiene or eating must be carefully paced to avoid PEM. A structured and systematic documentation of functional loss is essential for clinical decision making, disease monitoring, and evaluation interventions”
It is important to note, that while there are existing tools for measuring levels of daily activity, and participation, for example the Bell score — according to the researchers this is probably the most commonly used scale to assess activity level — these are limited for use in CYP as they combine different types of activity level together and assess levels of activity based on expectations of the roles adults do. It is also noted that exiting tools are long and therefore inaccessible for people with ‘post-acute infection and vaccination syndromes and/or ME/CFS’.
What did the researchers do?
In their study, the researchers document five key requirements for tools used in CYP with ‘post-acute infection and vaccination syndromes and/or ME/CFS’. These are:
- The tool should be age-appropriate with content that reflects typical daily activities of CYP.
- Different life domains, such as participation in school, social life, and self care, should be adequately separated to allow the assessor to see which areas of life are most affected by ‘post-acute infection and vaccination syndromes and/or ME/CFS’.
- There should be inclusion of content that captures disease severity.
- Importantly, the tool should capture activity levels before and after disease onset to enable a comparison of activity levels within the same individual.
- The tool should be short and easy to complete to ensure accessibility.
Having recognised that existing tools do not meet these requirements, the team developed two of their own:
The Munich Chronic Fatigue Centre (MCFC) Activity Scale: Assesses activity across five areas: self care. physical activity, mental activity, social contacts, and ‘school/training/studies/work
The MCFC Participation scale: Evaluates how restricted a persons participation is due to ‘post-acute infection and vaccination syndromes and/or ME/CFS’ in six areas of life: participation at home, participation outside the home, access to education or work, participation in school/work, self-care, and independence in daily life.
How well these two tools worked was then assessed in a population of 91 CYP who had been referred to the MCFC for Young People. It is important to note that, despite the referral, not all participants had either ME/CFS or PCC:
- 19 (21%) participants did not have either ME/CFS (ICD-10 GM G93.3) or PCC (ICD-10 GM U09.9!).
- 13 (14%) participants had a PCC diagnosis but ME/CFS was excluded.
- 59 (65%) participants had either an ME/CFS diagnosis or ‘probable’ ME/CFS but they did not have PCC.
Of the 91 participants, 9 (10%) were aged 10 to12 years, 61 (67%) were aged 13 to 17 years, and 21 (23%) were aged 18 to 25 years.
What did the team find?
Findings indicated that the scales developed to assess activity levels and participation in CYP were both consistent and repeatable (reliable), and accurate. Results also indicated that the score derived from the questionnaires provided ‘solid and clinically usable tools to improve patient care.’
Additionally, although the sample size was small, the research team were able to use the scores from the questionnaires to look at differences between the groups of participants based on ME/CFS and PCC diagnoses. Results showed that CYP with ME/CFS showed significantly worse activity scores compared to both groups without ME/CFS.
In the discussion section of their paper, the researchers explained that although the two tools may appear similar, they are designed to be relevant for slightly different purposes:
- The MCFC Activity scale is designed for medical and rehabilitative purposes, such as preventing post exertional malaise (PEM), and for evaluation disease progression.
- The MCFC Participation scale focuses on social care and medical assistance by providing information to support the selection and evaluation of different types of support available.
Were there any limitations of the study?
As the authors recognise, the study had several limitations, meaning that the findings should be interpreted with caution, these were:
- The participants were only recruited from one referral centre, meaning that the findings may not be generalisable to other people with ‘post-acute infection and vaccination syndromes and/or ME/CFS’.
- No healthy control group was included meaning the researchers were not able to establish what activity and participation levels would look like in this group.
- The group who did not have ME/CFS was relatively small meaning that the statistical power required to detect significant results was limited.
What do the findings mean?
Results from this small exploratory suggest that the two tools developed by the research team were reliable and accurate for measuring activity levels and participation in CYP with ‘post-acute infection and vaccination syndromes and/or ME/CFS’. However, before any firm conclusions can be drawn, more research is needed to assess the tools in more diverse cohorts of CYP, and using a healthy control group.
