The performance of the screener to identify children with special health care needs in a European sample of children with chronic conditions

In the field of paediatric health care, measures based on consequences of health conditions have been recently developed to screen for children with special health care needs. These tools have been primarily used in survey research. The aim of this cross-sectional clinical study is to test the performance of a screener for identifying children with special health care needs (CSHCN) in a population of children with chronic conditions diagnosed and treated in different European paediatric hospitals. In the current study, the screener was employed in a sample of children with different chronic conditions (asthma, arthritis, dermatitis, epilepsy, cystic fibrosis, diabetes and cerebral palsy) across seven European countries; 456 parents of children, aged 4-7, 8-12, and 13-16 years, responded to the screener items. The study included a range of clinical measures to assess the severity of the conditions as well measures on functional health status. The prevalence of children identified positively with the CSHCN screener was 80%, which was higher than in survey estimates in the United States. Considerable variation in the screener classification was found between chronic conditions with cystic fibrosis and epilepsy showing higher rates, and skin conditions lower rates. There was no significant relationship between the screener classification and functional limitation. Findings of this study support in general the validity of the children with special health care needs screener, which shows, however, a differential validity across specific conditions. Several clinical and theoretical explanations for the lack of identifying some children with chronic conditions and the considerable variation between the conditions are discussed.