title: Neonatal extracorporeal membrane oxygenation:  impaired health at 5 years of age.
abstract: OBJECTIVE
  Children 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.
  
  
  METHODS
  Prospective longitudinal follow-up study.
  
  
  METHODS
  Outpatient clinic of a level III university hospital.
  
  
  METHODS
  Ninety-five 5-yr-old children who had received neonatal extracorporeal membrane oxygenation support between January 1999 and December 2005.
  
  
  METHODS
  None.
  
  
  RESULTS
  The 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.
  
  
  CONCLUSIONS
  Overall, 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.
authors.affiliation: Intensive Care and Department of Pediatric Surgery, Erasmus Medical Center-Sophia Children's Hospital, Rotterdam, The Netherlands.
authors.forename: Marlous J
authors.initials: MJ
authors.lastname: Madderom
authors.forename: Saskia J
authors.initials: SJ
authors.lastname: Gischler
authors.forename: Hugo
authors.initials: H
authors.lastname: Duivenvoorden
authors.forename: Dick
authors.initials: D
authors.lastname: Tibboel
authors.forename: Hanneke
authors.initials: H
authors.lastname: Ijsselstijn
mesh_terms: D002652:Child Behavior; D002657:Child Development; D002675:Child, Preschool; D002908:Chronic Disease; D004522:Educational Status; D004644:Emotions; D017079:Exercise Tolerance; D015199:Extracorporeal Membrane Oxygenation / Q000009:adverse effects*; D005260:Female; D005500:Follow-Up Studies; D006304:Health Status; D006801:Humans; D007231:Infant, Newborn; D007360:Intelligence; D008171:Lung Diseases / Q000150:complications; D008297:Male; D009048:Motor Skills; D010290:Parents; D011446:Prospective Studies; D011788:Quality of Life; D057566:Self Report; D058992:Social Participation; D011795:Surveys and Questionnaires