Prevalence of Post-Intensive Care Syndrome in Paediatrics in children with CHD and association with health-related quality of life outcomes

Abstract Introduction: Children with CHD require ICU admissions, putting them at risk for Post-intensive Care Syndrome in Paediatrics defined as physical, cognitive, social, and emotional health impairments following ICU discharge. There are few studies assessing Post-intensive Care Syndrome in Paediatrics in the CHD population. This study assessed the presence of Post-intensive Care Syndrome in Paediatrics in the CHD community and its relationship with health-related quality of life. Methods: CHD patients 5–18 years having 1 or more cardiac ICU admissions were evaluated in the Newborn ICU-Cardiac Neurodevelopmental Program from 9/2017 to 9/2020. Physical, cognitive, social, and emotional questionnaires measured each domain. Patients were considered impaired if 2 or more domain questionnaires were abnormal. If any domain showed impairment, Post-intensive Care Syndrome in Paediatrics was present. Predictors included demographic, disease severity, and ICU variables. Health-related quality of life was measured using the Paediatric Cardiac Quality of Life Inventory. Models were created using logistic and linear regression. Results: Of the 117 CHD patients, 50% were male having a mean age of 8.4 and a 5 year median time since last ICU admission. Post-Intensive Care syndrome in Pediatrics was found in 80% of the cohort: 36% physical, 70% cognitive, 26% social, and 33% emotional impairment. Patients with a longer time since last ICU admission showed less physical and emotional impairment ( p < 0.05) with emotional impairment associated with worse health-related quality of life ( p < 0.001). Conclusions: Post-intensive Care Syndrome in Paediatrics was present in most CHD patients. Worse emotional health was associated with lower health-related quality of life.