A psychometric investigation of health‐related quality of life measures for paediatric neurodevelopment assessment: Reliability and concurrent validity of the PEDS‐QL, CHU‐9D, and the EQ‐5D‐Y

• Published in: Autism research 2024-05, Vol.17 (5), p.972-988
• Main Authors: Perry, N., Boulton, K. A., Hodge, A., Ong, N., Phillips, N., Howard, K., Raghunandan, R., Silove, N., Guastella, A. J.
• Format: Article
• Language: English
• Subjects: Adolescent; Autism; Autism Spectrum Disorder - diagnosis; Child; Child, Preschool; Children; development; Female; functioning; health services; Humans; Male; Neurodevelopment; Neurodevelopmental Disorders - diagnosis; Pediatrics; Psychometrics; Quality of life; Quality of Life - psychology; Quantitative psychology; Reliability analysis; Reproducibility of Results; school; Surveys and Questionnaires - standards; wellbeing
• ISSN: 1939-3792; 1939-3806; 1939-3806
• DOI: 10.1002/aur.3127

There is a need for tools that can provide a brief assessment of functioning for children with neurodevelopmental conditions, including health‐related quality of life (HR‐QoL). This study evaluated the psychometric properties of three commonly used and well known HR‐QoL measures in a cohort of children presenting to clinical developmental assessment services. The most common diagnoses received in these assessment services were autism spectrum disorders. Findings showed good internal consistency for the PedsQL and the CHU‐9D, but not the EQ‐5D‐Y. This research also found that the CHU‐9D, EQ‐5D‐Y, and PedsQL correlated with relevant functioning domains assessed by the VABS‐III. Overall, the measures showed that children with neurodevelopmental conditions experienced poor HR‐QoL. The majority of children (>86%) met cut‐off criteria for significant health concerns on the PedsQL. On the EQ‐5D‐Y and CHU‐9D, they showed reduced HR‐QoL particularly on domains relating to school and homework, being able to join in activities, looking after self, and doing usual activities. This study supports the use of the CHU‐9D and PedsQL in this population to assess and potentially track HR‐QoL in a broad neurodevelopment paediatric population. Lay Summary There is a need for brief assessments of health‐related quality of life (HR‐QoL) for children with neurodevelopmental conditions. This study evaluated the psychometric properties of three commonly used and well‐known HR‐QoL measures in a cohort of children presenting for clinical developmental assessment. The most common diagnoses received in these assessment services were autism spectrum disorders. Findings supported the reliability of the PedsQL and the CHU‐9D, but not the EQ‐5D‐Y. This research found that the CHU‐9D, EQ‐5D‐Y, and PedsQL correlated with relevant functioning domains on the VABS‐III, another commonly used functioning measure. Measures showed that children with neurodevelopmental conditions experienced poor HR‐QoL. The majority of children (>86%) met cut‐off criteria for significant health concerns on the PedsQL. On the EQ‐5D‐Y and CHU‐9D, they showed reduced HR‐QoL particularly on domains relating to school and homework, being able to join in activities, looking after self, and doing usual activities. This study supports the continued use of the CHU‐9D and PedsQL in this population to assess and potentially track HR‐QoL in a broad neurodevelopmental paediatric population.