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Updated: May 26, 2026
Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
[State-wide follow-up of extremely preterm infants: a model of cross-sectoral quality analysis]
Gabriele Damm1, Brigitte Sens, Karsten Harms
1Zentrum für Qualität und Management im Gesundheitswesen, Hannover. gabriele.damm@zq-aekn.de
Insights
A unique German study tracked extremely preterm infants (ELBW) from birth. Results show increasing developmental impairments over time, highlighting the need for long-term neurodevelopmental follow-up and timely therapy.
Area of Science:
- Neonatology
- Pediatric Neurology
- Developmental Pediatrics
Background:
- Extremely preterm infants (ELBW) represent a high-risk group requiring specialized, long-term care.
- Early identification of neurodevelopmental outcomes is crucial for timely intervention in ELBW infants.
- A unique, collaborative project in Lower Saxony, Germany, addresses this need.
Purpose of the Study:
- To establish a long-term outcome project for extremely preterm infants (<28 weeks gestation).
- To improve cross-sectoral healthcare quality based on neurodevelopmental outcomes.
- To provide the right therapy for the right child at the right time.
Main Methods:
- Standardized follow-up examinations at 6 months, 2, 5, and 10 years of age.
- Inclusion of all neonatology and pediatric neurology departments in Lower Saxony.
- Systematic assessment of neurodevelopmental parameters in a high-risk infant cohort.
Main Results:
- High participation rates: 81% at 6 months, 74% at 2 years, 59% at 5 years.
- Increasing rates of minor and major neurodevelopmental impairments observed over time.
- At 5 years: 27% normal development, 49% minor impairment, 24% major impairment.
Conclusions:
- Long-term follow-up is essential for identifying developmental trajectories in extremely preterm infants.
- A significant proportion of ELBW infants require ongoing therapeutic interventions.
- The project model is transferable to other regions and high-risk populations.
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.
