1 - Pediatric Neurodevelopment Unit, Hospital Dona Estefânia, Centro Hospitalar de Lisboa Central, Lisbon, Portugal;
2 - Woman, Children and Adolescent's Medicine Teaching and Research Area, NOVA Medical School of Lisbon, Universidade Nova de Lisboa, Lisbon, Portugal;
3 - Early Intervention Program Regional Lisbon Area, Ministry of Social Security and Solidarity, Portugal. Infancy and Youth Unit, Institute of Social Security, Ministry of Labor and Social Solidarity, Portugal;
4 - Department of Special Education, Ministry of Education and Science, Portugal;
5 - Department of Exact Science, Lisbon School of Health Technology, Lisbon, Portugal;
6 - Department of Pediatrics, Faculty of Medicine, Universidade de Lisboa, Lisbon, Portugal;
7 - Special Education Department, School of Education, Porto Polytechnic, Porto, Portugal
8 - School of Education, University of North Carolina, Chapel Hill, NC, USA;
9 - C.H.I.L.D., Jonkoping University, Jonkoping, Sweden
- Journal of Policy and Practice in Intellectual Disabilities, in press
Aims: To evaluate the utility of the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY): a) to classify functional characteristics of children with intellectual disabilities with ICF-CY codes and qualifiers; and b) to demonstrate the reliability of coding with inter-observer agreement data.
Methods: Observational cross-sectional study carried out in a pediatric neurodevelopment unit of a tertiary-care hospital. A sample of 355 children with median (min-max) age of 3.9 (1.0-17.3) years with intellectual disability (30.4% borderline, 43.1% mild, 19.7% moderate, 5.1% severe and 1.7% profound disability) was seen over a period of three years. Based on clinical observation and psychological evaluation, a neurodevelopmental pediatrician selected ICF-CY body functions codes, and respective qualifiers, to effectively describe functioning of children. Based on evaluation reports, a psychologist and a special educator assigned the previously chosen ICF-CY body functions codes to 139 and 67 children respectively. Inter-rater agreement was estimated using simple and weighted Cohen’s kappa coefficients and Gwet’s AC1 statistic and Gwen’s weighted kappa coefficient statistic.
Findings: A set of eight ICF-CY codes was identified as an efficient method for describing impairments of body functions of children with intellectual disability: global mental functions b117 and b122; specific mental functions b147, b163, b164 and b167; and voice and speech functions b320 and b330. Results indicate a correspondence between the level of severity of qualifiers assigned to ICF-CY codes and the level of intellectual disability. Inter-rater agreement was variable among raters, with the best agreements found for qualifying intellectual functions (b117) and psychomotor functions (b122).
Conclusion: A profile of eight ICF-CY codes was found to effectively describe functioning of children with intellectual disability, providing an alternative to medically-based classification of children on the basis diagnoses with functionally-based classification based on their characteristics. The findings have implications for further research to define a comprehensive set of codes to reliably record individual differences of functioning in this population.
Palavras-chave: International Classification of Functioning; Disability and Health for Children and Youth (ICF-CY); intellectual disabilities; inter-observer agreement