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Robson, Victoria

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Robson, Victoria

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    Determinants of Health-Related Quality of Life in Adolescents With Repaired D-Transposition of the Great Arteries
    (2018-05-15) Robson, Victoria
    Objective: Understanding the determinants of health-related quality of life in adolescents after infant congenital heart surgery is essential to providing life-long care to this patient population. The Boston Circulatory Arrest Study (BCAS) is a randomized clinical trial involving a cohort of patients with dextro-transposition of the great arteries (D-TGA) who underwent the arterial switch operation, and who have since been followed prospectively from infancy through adolescence with in-depth health status and neurodevelopmental evaluations. The objectives of this thesis are to report on 16-year health status in this cohort of patients with repaired D-TGA, to evaluate how health status tracks over time from age 8 to 16, and to examine associations between serial measurements of neurodevelopment and health status at age 8 and 16 years. Methods: In the 16-year follow-up of the BCAS cohort, 137 parents completed the Child Health Questionnaire – Parent Form-50 (CHQ-PF50), of whom 135 had also completed the CHQ-PF50 when their child was aged 8 years. Comparisons were made between 16-year D-TGA patient scores and health status measures from both locally recruited healthy adolescents and a US population-based normative sample. Adolescents also completed the CHQ – Child Form-87 (CHQ-CF87) at 16 years for comparison with parent-reported data. Psychosocial and physical summary (PsS and PhS, respectively) scores from the CHQ-PF50 were utilized to examine associations between 16-year health status and cohort demographic and medical variables. PsS and PhS scores were used to assess tracking in health status from age 8 to 16 years. A comprehensive battery of neurodevelopmental testing was performed at both ages 8 and 16 in order to examine associations with concurrent and future parent-reported health status. Results: At age 16 years, PsS and PhS scores for patients with D-TGA were similar to the normative sample but each was significantly worse than the local healthy referents (P<0.001 and P=0.01, respectively). Parents rated the overall health status of their adolescent children as higher than the patients themselves. PsS and PhS scores tracked from ages 8 to 16 years (r=0.44 and 0.47, respectively, both Ps<0.001). Although few demographic or medical variables were associated with health status, lower PsS scores of D-TGA patients at 16 years were highly associated with numerous concurrent domains of neurodevelopmental function, most notably with higher (worse) scores on the Conners’ ADHD/DSM-IV Scales (parent: r=−0.62, P<0.001; adolescent: r=−0.43, P<0.001) and the Behavior Rating Inventory of Executive Function Global Executive Composite (parent: r=−0.66, P<0.001; adolescent: r=−0.39, P<0.001). Higher (worse) scores of multiple attention indices measured at age 8 years strongly predicted worse PsS scores at 16 years. Conclusions: In this first study to report on longitudinal relationships between neurodevelopment and psychosocial health-related quality of life in congenital heart disease, impairments in attention were highly associated with both concurrent and future psychosocial health status. This study provides further evidence to support efforts to identify and treat ADHD in children with D-TGA and other forms of CHD in order to improve their long-term psychological well-being.