Diagnostic status, functional status and complexity among Canadian children with neurodevelopmental disorders and disabilities: a population-based study

Abstract

Purpose: To identify and describe selected key characteristics of children with neurodevelopmental disorders and disabilities (NDD/D) in a national disability survey database. Method: Secondary analysis of data on children aged 5–14 years in the Canadian Participation and Activity Limitation Survey (PALS). Children with NDD/D were ascertained from ICD-10 diagnoses “fine-tuned” with functional limitation information, and classified into six predetermined NDD/D subtypes by independent expert evaluators. Results: Children with NDD/D accounted for 73.5% of children with disabilities. Amongst children with a single NDD/D type, 28.8% were in the Cognition-Learning subgroup, 22.2% Psychological, 19.9% Social interactive, 13.3% Sensory, 10.6% Motor and 5.2% Speech-Language disorders/disabilities. Complexity, both diagnostic (more than one ICD-10 diagnosis) and functional (more than one parent-identified functional limitation), was encountered frequently though variably across NDD/D subtypes. In aligning parent-identified functional limitation information with researcher-ascertained assignment of children to NDD/D subgroups, matching with additional limitations (61.3% of children) occurred far more commonly than simple 1:1 matches (14.0%) or non-matching (24.7%). Conclusions: Conceptual, definitional and terminology issues affect population-based research on children with NDD/D. Ascertainment methods can use diagnostic as well as functional information. Diagnostic information alone is likely to under-represent the complexity and needs of children with NDD/D and their families.

Implications for Rehabilitation

• Identification of children with neurodevelopmental disorders and disabilities (NDD/D) in population-based studies can include diagnostic and functional information.

• Diagnostic and functional complexity are both common amongst children with NDD/D.

• Diagnostic information alone tends to under-describe the functional complexity of children with NDD/D; comprehensive rehabilitation planning needs to consider functional complexity.

Keywords::

• Children
• complexity
• developmental disabilities
• functional limitation
• ICF
• population surveys

Acknowledgments

We wish to thank all staff at British Columbia Inter-university Research Data Centre at the University of British Columbia for their support for data access.

Declaration of Interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this paper. This study was funded by the Social Sciences and Humanities Research Council of Canada. Dr. Mâsse was supported by Michael Smith Foundation for Health Research, the Child and Family Research Institute, and the Sunny Hill Foundation. Dr. Miller’s work was supported by the Sunny Hill Foundation. Dr. Schiariti received a doctoral award from the Canadian Institutes of Health for Research, and is the recipient of salary support from the Sunny Hill Foundation for Children through a grant from the British Columbia Ministry of Education.