Neonatal Extra Corporeal Membrane Oxygenation: Impaired health at five years of age

Objective: Children treated with neonatal Extra Corporeal Membrane Oxygenation (ECMO) may show physical and mental morbidity at later age. We compared the health-related quality of life (HRQOL) of these children with normative data. Design: Prospective longitudinal follow-up study. Setting: Outpatient clinic of a III level university hospital. Patients: 95 five-year-olds who had received neonatal ECMO support between January 1999 and December 2005. Interventions: None. Measurements: The Pediatric Quality of Life Inventory (PedsQL) was administered at 5 years of age. Main results: The mothers (n=74) as proxy-reporters assigned significantly lower HRQOL scores for their children than did the parents in the healthy reference group for the total functioning scale of the PedsQL (mean difference:8.1, p<0.001). Mothers’ scores for 31 children (42%) were indicative of impaired HRQOL (≥-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 HRQOL themselves. For the mother proxy-reports, duration of ECMO support (R2=0.009, p=0.010) and the presence of chronic lung disease (R2=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 five years of age had a higher odds ratio of also having a lower HRQOL. Health status had no influence on reported emotional functioning. Conclusions: Overall, children treated with ECMO in the neonatal period reported low HRQOL at 5 years of age. Because only emotional HRQOL was not associated with health status, the PedsQL might be a measure of health status rather than of HRQOL. In contrast with conclusions from others we found that 5-year-old children might be too young to rate their own HRQOL.