Quantifying Disability in Children Challenged by Communicative and Cognitive Disorders Using the ICF-CY-Checklist: Results of a Cross-Sectional Study of a Retrospectively Assembled Cohort

BACKGROUND: The International Classification of Functioning, Disability, and Health-Children and Youth Version (ICF-CY)-check list, is a free tool, used to quantify disability. World Health Organization Disability Assessment Schedule-Children and Youth version [WHODAS 2-Children and Youth (WHODAS-Child)] is a less time-consuming tool, to quantify disability, based on the ICF-frame work. We aimed to quantify the disability of a group of cognitively disabled children using ICF-CY-checklist, WHODAS-Child and Vineland Social Maturity Scale (VSMS) score. We compared scores obtained using ICF-CY and WHODAS-Child, with VSMS taken as reference and also compared ICF-CY and WHODAS-Child scores. We ascertained factors associated with greater disability. METHODS: A hospital based cross-sectional study with diagnostic test evaluation. RESULTS: Hundred cognitively disabled children were recruited (median age 6 years, 73% male). ICF-CY median 'b,' 'd,' and total scores were 8.8 (interquartile range [IQR]: 5.95, 15.4), 23.7 (IQR: 14.9, 36.7) and 16.8 (IQR: 10.7, 27.4). On multivariable-regression-analysis, age-at-first-concern below one-year, diagnosis of autism-spectrum-disorder, family history of developmental-cognitive-disability, prematurity, low-birth-weight, motor deficits and higher-maternal-age were associated with worse cognitive ability. There was a significant negative correlation (rho = -0.50, P < 0.001) on comparison of ICF-CY with VSMS, and WHODAS-Child in relation to VSMS (rho = -0.42, P < 0.001). A positive correlation was found between ICF-CY-d-score and WHODAS-Child score (rho = 0.79, P < 0.001). CONCLUSIONS: The impairment and disability of a group of children can be captured using ICF-CY-checklist. The easier to administer, WHODAS-Child, matches well with ICF-CY 'd' scores and VSMS, and can be used for quantification of disability. This quantification can help to assess burden-of-illness, in a geographic area or due to a particular etiology and would serve to assess the effect of an intervention on these children, uniformly across the globe.