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Children with neurodevelopmental disorders and disabilities are increasingly evaluated according to participation and quality of life. These children are often recruited from clinical populations and results are directed towards supporting clinicians in their work. The Canadian study by Mâsse et al.[1] introduces a new perspective by including children with varying neurodevelopmental disorders from a large Canadian population-based survey. This has two notable implications.

First, the Canadian study of children with neurodevelopmental disorders and disabilities is based on a population-based study. It raises the possibility of studying the life of children with disabilities in the same context as other minority groups of children. Large surveys of children traditionally analyse consequences of ethnic minority background, single-parent families, or low socio-economic position, while children with disabilities are seldom identified as a group at risk from a public health perspective.[2]

Second, this Canadian study groups the diagnoses according to functional areas, in accordance with the WHO Internal Classification of Functioning, Disability and Health.[3] Focusing on function increases the awareness of the child's specific needs at home, in school, and leisure time. This is an advantage in guiding and planning interventions, especially outside the health care system.

Mâsse et al. found participation in school-based activities varied across type and severity of neurodevelopmental disorder. The authors importantly underline how this calls for interventions towards specific groups in various school settings. For example, Mâsse et al. show how children with social interaction problems consistently have low participation in school-based activities. And the study emphasizes a need of improving participation in educational activities for children with psychological impairments; while children with motor impairments especially need to improve their participation in physical activities.

According to the study by Mâsse et al., participation in out-of-school activities did vary with socio-economic factors, but not with type and severity of neurodevelopmental disability. However, other factors might affect participation in leisure time activities such as the physical, social, and attitudinal environment.

Participation in the study by Mâsse et al. is parent-reported, although most children would be able to self-report.[4] But parent report might prove problematic, especially with school-based activities. Do parents of 14-year-old children know whether their children play with other children during the lunch break at school? A future challenge would be to conduct self-reported surveys among representative samples of children with disabilities and include measures of quality of life as well.

Documentation on the validity of items used in large national surveys is seldom published, as opposed to clinical measures of function or participation. But clinical measures are often too extensive and unsuitable for self-reports. Consequently, validated measures of function, participation, and quality of life applicable in large surveys with a public health perspective are called for. For example, validity of items defining a study population is important. Screening items might be based on functional limitations, service needs, and/or diagnoses. However, not all children with a diagnosis will experience limitations and the most mildly affected children might not be identified.

Mâsse et al. found no differences in participation according to specialized education. But national studies on how the type and characteristics of education modifies the effect of impairment on participation are needed, especially in the view of the current focus on mainstreaming.

The varying results on school-based activities and out-of-school activities emphasize the need for clinicians to evaluate participation in children with disabilities. In collaboration with schools and parents this might optimize planning of support for the individual child with a disability.

This paper inspires a public health perspective in research on children with disabilities. Studying the aetiology of illnesses demands a disease-specific approach, but outcomes like participation and quality of life can additionally be studied across diagnoses. Mâsse et al. successfully analyse participation across varying types of neurodevelopmental disabilities grouped by function. In the future an even broader view might be applied, including the voice of children with and without functional limitations irrespective of diagnoses.

References

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  2. References
  • 1
    Mâsse LC, Miller AR, Shen J, Schiariti V, Roxborough L. Patterns of participation across a range of activities among Canadian children with neurodevelopmental disorders and disabilities. Dev Med Child Neurol. 2013; doi: 10.1111/dmcn.12167.
  • 2
    Currie C, Nic Gabhainn S, Godeau E. The Health Behaviour in School-aged Children: WHO Collaborative Cross-National (HBSC) study: origins, concept, history and development 1982–2008. Int J Public Health 2009; 54 (Suppl. 2): 1319.
  • 3
    World Health Organization. International Classification of Functioning, Disability and Health, Children and Youth Version (ICF-CY). Switzerland: WHO, 2007.
  • 4
    Varni JW, Limbers CA, Burwinkle TM. How young can children reliably and validly self-report their health-related quality of life?: an analysis of 8,591 children across age subgroups with the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 2007; 5: 1.