• Marlous J Madderom, Saskia J Gischler, Hugo Duivenvoorden, Dick Tibboel, and Hanneke Ijsselstijn.
• Intensive Care and Department of Pediatric Surgery, Erasmus Medical Center-Sophia Children's Hospital, Rotterdam, The Netherlands.
• Pediatr Crit Care Me. 2013 Feb 1;14(2):183-93.

ObjectiveChildren treated with neonatal extracorporeal membrane oxygenation may show physical and mental morbidity at a later age. We compared the health-related quality of life of these children with normative data.DesignProspective longitudinal follow-up study.SettingOutpatient clinic of a level III university hospital.PatientsNinety-five 5-yr-old children who had received neonatal extracorporeal membrane oxygenation support between January 1999 and December 2005.InterventionsNone.Measurements And Main ResultsThe pediatric quality of life inventory was administered at 5 yrs of age. The mothers (n = 74) as proxy-reporters assigned significantly lower health-related quality of life scores for their children than did the parents in the healthy reference group for the total functioning scale of the pediatric quality of life inventory (mean difference: 8.1; p < 0.001). Mothers' scores for 31 children (42%) were indicative of impaired health-related quality of life (≥-1 SD below the reference norm). The children (n = 78) themselves scored significantly lower than did their healthy peers on total functioning (mean difference: 11.0; p < 0.001). Thirty-two children (41%) indicated an impaired health-related quality of life themselves. For the mother proxy- reports, the duration of extracorporeal membrane oxygenation support (R = 0.009; p = 0.010) and the presence of chronic lung disease (R = 0.133; p = 0.002) were negatively related to total functioning. Children with a disabled health status for neuromotor functioning, maximum exercise capacity, behavior, and cognitive functioning at 5 yrs of age had a higher odds ratio of also having a lower health-related quality of life. Health status had no influence on reported emotional functioning.ConclusionsOverall, children treated with extracorporeal membrane oxygenation in the neonatal period reported low health-related quality of life at 5 yrs of age. Because only emotional health-related quality of life was not associated with health status, the pediatric quality of life inventory might be a measure of health status rather than of health-related quality of life. In contrast with conclusions from others, we found that 5-yr-old children might be too young to rate their own health-related quality of life.

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