Do Self- and Proxy Reports of Cognitive Problems Reflect Intellectual Functioning in Children and Adolescents with Congenital Heart Defects?

Sandra Buratti, Carmen Ryberg, Malin Broberg, Jan Sunnegårdh

Children with congenital heart defects (CHD) who suffer from cognitive impairments and school difficulties need to be identified as early as possible in order to set appropriate interventions in place that may enhance the school situation and quality of life for these children. Identifying children and adolescents at risk for cognitive difficulties requires specific screening tools. This study assessed such a tool - Pediatric Quality of Life Inventory Cardiac Module subscale: Cognitive Problems - to investigate whether proxy reported and self-reported cognitive problems were associated with measured intellectual functioning in children and adolescents with CHD treated with surgery or by catheter interventions. The sample consisted of 184 children/adolescents aged 3, 5, 9, and 15 years. The severity of the CHD diagnoses was categorized into three groups (mild, moderate, or severe) for all age groups. For all the age groups, we collected proxy ratings of cognitive problems, and for the 5-, 9-, and 15-year-olds, we also collected self-reported cognitive problems. Intellectual functioning was measured with the Wechsler intelligence scales. The control variables were socioeconomic status and severity of diagnosis. A strong association was found between the parent's ratings of cognitive problems and the children's and adolescents' results on the Wechsler scales. This association was present for all ages, including the 3-year-olds. As for the self-reports, an association was only found between the 15-year-olds self-report of cognitive problems and their results on the Wechsler scales. To identify children with cognitive problems as early as at the age of 3 years, parent-rated Pediatrics Quality of Life subscale: Cognitive Problems can be used as a screening tool. For 15-year-olds, the self-report ratings can be used as a screening tool. We also suggest a cutoff score of 80 for both the 15-year olds as well as the proxy reports. If the score falls below 80 the child should be formally evaluated using standardized cognitive test.