RESUMEN
BACKGROUND: After neonatal lung failure and especially after ECMO therapy long-term morbidities are common. The follow-up of these seriously ill neonates is an indispensable quality criterion for an ECMO centre and beyond that follow-up data are important for counselling parents. Yet, ECMO-centres often cover a large service area and follow-up is difficult due to long travel distances for parents. In this study, we therefor evaluated the applicability of questionnaires sent out to parents. METHODS: We performed a follow-up examination and development screening for long-term morbidities in a cohort of former newborns with severe lung failure (n=31/41) using a questionnaire. In addition, doctor's letters and telephone interviews were evaluated by a systematic, partly computer-assisted approach RESULTS: Questionnaires were sent out to 28 families of the 31 surviving children. Of those, 23 were returned (82% response). Four children had conspicuous questionnaire results, i. e. they were below the 90th percentile of the age-related values and thus had a risk of developmental delay. Of these, 3 children were 2 years old and did not need ECMO at birth due to respiratory failure. Another child (6 years) who was on ECMO after birth had abnormal findings on the questionnaire. CONCLUSION: In this study specific questionnaires were used for the first time in children with severe neonatal lung failure allowing the detection of abnormal development. This pilot trial shows that application of structured questionnaires seems feasible and should be further evaluated in a large cohort, controlled by established developmental tests.