title: [State-wide follow-up of extremely preterm infants: a model of cross-sectoral quality analysis].
abstract: A long-term outcome project for the special high-risk group of extremely preterm (ELBW) infants has been established in the federal state of Lower Saxony, which is unique in Germany. All departments of neonatology and all divisions of paediatric neurology are participating. Since October 2004 children who were born at <28 weeks gestation are examined using a standardised concept at defined follow-up intervals (at the age of 6 months, 2, 5 and 10 years). The aim is to achieve a cross-sectoral improvement of quality in healthcare on the basis of neurodevelopmental outcome parameters (the right therapy for the right child, at the right time). So far 739 extremely preterm infants (81% of the survivors) were examined at the age of six months, 513 ELBW infants (74% of the survivors) at the age of two years, and 99 children (59% of the survivors) at the age of five years. The comparison of the follow-up intervals has demonstrated an increase of children with minor and major impairment, which indicates the importance of the long-term scheme. At the age of five years 27% of the children exhibit normal development, 49% minor impairment and 24% major impairment. Many ELBW infants need therapy. The model of the project can be transferred to other federal states or regions and other high-risk groups.
authors.affiliation: Zentrum für Qualität und Management im Gesundheitswesen, Hannover. gabriele.damm@zq-aekn.de
authors.forename: Gabriele
authors.initials: G
authors.lastname: Damm
authors.forename: Brigitte
authors.initials: B
authors.lastname: Sens
authors.forename: Karsten
authors.initials: K
authors.lastname: Harms
authors.forename: Wolfgang
authors.initials: W
authors.lastname: Voss
authors.forename: Paul
authors.initials: P
authors.lastname: Wenzlaff
mesh_terms: D002648:Child; D002675:Child, Preschool; D002658:Developmental Disabilities / Q000453:epidemiology / Q000209:etiology*; D004185:Disability Evaluation; D005858:Germany; D006301:Health Services Needs and Demand; D006801:Humans; D007223:Infant; D052577:Infant, Extremely Low Birth Weight; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal; D008137:Longitudinal Studies; D009313:National Health Programs; D009725:Nurseries, Hospital; D017063:Outcome Assessment, Health Care; D058996:Quality Improvement; D011788:Quality of Life; D040841:Resource Allocation