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

Abstract

AimChildren 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.MethodThe 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.ResultsA 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.ConclusionTo 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.

Health-related quality of life in congenital heart disease surgery in children and young adults: a systematic review and meta-analysis

“…The effects can be lifelong with early cognitive dysfunction predictive of functional dependency in later life. A cognitive functioning score of ≤80 indicates a high risk for neurological/cognitive deficits in patients with CHD and a need for thorough cognitive evaluation41 and several studies in this review had such high-risk participants 20 26 31 34. It is therefore crucial that assessment of cardiac-related HRQOL, such as use of the PedsQL 3.0 Cardiac Module, be a part of regular clinical screening as PedsQL 3.0 Cardiac Module and cognitive assessment scale (Wechsler scales) were found to be highly correlated 41.…”

“…A cognitive functioning score of ≤80 indicates a high risk for neurological/cognitive deficits in patients with CHD and a need for thorough cognitive evaluation41 and several studies in this review had such high-risk participants 20 26 31 34. It is therefore crucial that assessment of cardiac-related HRQOL, such as use of the PedsQL 3.0 Cardiac Module, be a part of regular clinical screening as PedsQL 3.0 Cardiac Module and cognitive assessment scale (Wechsler scales) were found to be highly correlated 41. Screening for such patients can allow for early referral of these patients for full neurocognitive assessment41 as well as proper management of the late-onset morbidities affecting HRQOL.…”

“…It is therefore crucial that assessment of cardiac-related HRQOL, such as use of the PedsQL 3.0 Cardiac Module, be a part of regular clinical screening as PedsQL 3.0 Cardiac Module and cognitive assessment scale (Wechsler scales) were found to be highly correlated 41. Screening for such patients can allow for early referral of these patients for full neurocognitive assessment41 as well as proper management of the late-onset morbidities affecting HRQOL. In addition to cognitive screening, international peak bodies highly recommend symptom management, regular follow-up and academic/career counselling to address HRQOL issues for this population 42…”

Health-related Quality of Life of Children Treated for Non-syndromic Craniosynostosis

“…In a clinical setting, HRQoL could be used to screen patients in need of further psychological assessment. 30 Patient-reported outcomes can offer information regarding patient perspective through self-or proxy reports.…”

Health-related quality of life in congenital heart disease surgery patients in Pakistan: protocol for a mixed-methods study

“…As a research tool, HRQOL assessments in CHD provide validated measures of functional data that correlate with findings from standardised clinical assessment tools. 5 In addition, HRQOL provides a good benchmark for assessing the benefit of surgical and other therapeutic interventions and reveals where the best patient-sensitive gains can be made.…”