Factors associated with health-related quality of life 6 years after ICU discharge in a Finnish paediatric population: a cohort study

Elina Kyösti, Tero I. Ala-Kokko, Pasi Ohtonen, Outi Peltoniemi, Paula Rautiainen, Janne Kataja, Hanna Ebeling, Janne H. Liisanantti

Long-term data are urgently needed in children after intensive care. The aim of this study was to measure health-related quality of life 6 years after intensive care in a paediatric intensive care population. This national, multicentre study enrolled all children and young people admitted to intensive care units (ICUs) in Finland in 2009 and 2010. The data concerning ICU stay were collected retrospectively from the ICU data registries and combined with prospective data from Paediatric Quality of Life Inventory (PedsQL 4.0) questionnaires, the generic 15D, 16D or 17D instrument, and data regarding children's chronic diagnoses and need for healthcare support. The questionnaires were answered by 1109 of 3682 living children and adolescents admitted to an ICU, response rate was 30.1%. Among the responders, 90 children (8.4%) had poor (under - 2 SD) PedsQL scores. Children with low scores had a higher rate of chronic diagnoses (94.4% vs. 47.6%), medication on a daily basis (78.7% vs. 29.4%) and a greater need for healthcare services (97.7% vs. 82.2%) than those with normal scores. Diagnoses associated with poor quality of life were asthma, epilepsy, cerebral palsy and other neurological diseases, chromosomal alterations, cancer and long-term pain. These children were mostly admitted electively, and less frequently on an emergency basis, but no other significant differences were found during the intensive care stay. The long-term quality of life after paediatric intensive care is good for the majority of children and young people, and it is dependent on the number of chronic diagnoses and the burden of the chronic disease, especially neurological diseases.