Parents’ Assessment of Disability in Their Children With Down Syndrome

AIM: To describe a population of children with Down syndrome and evaluate their parents’ assessment of disability. METHODS: Medical records of a population of 80 children with Down syndrome aged 5 to 17 years were analyzed for genetic background and associated diagnoses. And 27 parents to their children agreed to assess disability by employing a set of 26 International Classification of Functioning, Disability and Health body function (b) codes and activity and participation (d) codes. Clinical data were gathered and analysis of parents’ assessment of disability using psychometric and Rasch analysis was performed. RESULTS: Clinical data on 27 children assessed by their parents and 53 children not assessed had identical associated diagnoses. The 26 International Classification of Functioning, Disability and Health codes and qualifiers had a mean score of 2.67 (range 1.26-4.11) and corrected code-total correlations mean of 0.55 (range −1.17 to 0.82). Rasch analysis showed proper code MNSQ infit and outfit values with mean 1.03 and 1.06. CONCLUSION: Clinical data on 27 children assessed were similar to 53 children that were not evaluated. Parents’ assessment of the 27 children showed good psychometric and Rasch analysis properties. Similar results might be expected in the total population of 80 children.