Research on Early Developmental Care for Extremely Premature Babies in Neonatal Intensive Care Units (EDC)

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Outcome of preterm infants

Improvements in perinatal care have led preterm infant mortality rates to fall significantly during the last decade, but there has not been a corresponding improvement in the long term developmental outcome for those VLBW (very low birth weight) infants that do survive. Mortality rates through respiratory failure have been reduced as a result, but the incidence of neurological damage sustained during the vital early weeks of preterm infants has remained about the same.

For example it is estimated that among children born weighing less than 1500 g, the prevalence of cerebral palsy has remained steady at 5-10%, and between 10-25% of  the children have cognitive deficits.

The majority of VLBW children are not severely handicapped but many  have significant developmental or behavioural problems that need to be addressed. Less than half of VLBW children perform within the expected range of their age group in school, and all are at risk of lagging behind their peers in every domain of learning, including word decoding, reading, comprehension, arithmetic, and written work.  Moreover there is growing evidence of impairment among VLBW children in other domains of psychological or neurological development, including ability to interact socially with peers and to form friendships. There are also indications that VLBW children are more prone to hyperactivity-attention deficit.

The cumulative effect of all these problems is that VLBW children are 3 to 10 times more likely than the average non-VLBW child to require special help during their primary education.

Risk factors. Role of early environment

The following biological factors have been consistently found to be related to mortality and morbidity: gestational age, birth weight, gender, premature rupture of membranous, maternal sepsis, brain white matter injury.

The impact of environmental factors on neurodevelopmental outcome has been pointed out. Most studies have focused on family educational and economical conditions. The neonatal intensive care unit environment and early practices need more attention than previously granted.

This Network has been conceived to address the wider multidisciplinary developmental issues that need to be resolved to improve the short and long term neuro-behavioural prospects of surviving preterm infants. The Network’s research will focus on the effects of “Developmental care” .

Developmental care

The goals of developmental care are:

  • To decrease environmental stressors,
  • To promote neurobehavioural maturation by specific procedures ,
  • To support parents understanding their infants’ behaviour, in order to facilitate parents-infant relationship during the hospital admission and after discharge.

A number of recommendations for changes in the environment in the neonatal care unit have already been made, for example to reduce noise levels and exposure bright light, and to encourage sleep patterns. Such recommendations, plus additional guidelines for care in posture, physical handling of the infant, and interaction with the mother while in the NICU, have been incorporated in programs such as the Neonatal Individualized Developmental Care and Assessment Program (NIDCAP).

The positive impact of developmental care on development is not well documented. A recent systematic review from the Cochrane Review Group concluded that developmental care demonstrate some benefit with respect to: growth and behavioural outcome, decreased respiratory support, length and cost of hospitalisation. More high quality randomised trials are required with short and long-term evaluation including neurodevelopment with consistent timing and method of measurement.

Need for multidisciplinary research

A range of studies about developmental care have been published by neonatal healthcare professionals or neurobehavioral specialists. Unfortunately, there is no systematic review about practices in neonatal units (NICU) across Europe and NICU policies regarding developmental care practices.

It is unknown whether differences between units and between units in different countries about developmental care policies are linked to different medical philosophies, cultural  backgrounds or to organisational factors.

Moreover, there are poor scientific links between researchers from different disciplines (neonatologists, psychologists, neurodevelopmental specialists, nurses and other allied professions) studying early developmental care.

Because of rapid progress in perinatal medicine, clinical trials on ELBW and VLBW infants need to be conducted in a multisite way in order to decrease the length of study while recruiting sufficiently large cohorts of infants for meaningful statistical analysis.

Goals of the ESF network

The overall study requires an inter-disciplinary approach that has so far been lacking, bringing together neonatal specialists, neurologists, educational psychologists, and childcare professionals. This Network, running from January 2002 until December 2004, will also establish a sound framework for further research by distilling all its findings and best practices into online material that will prove invaluable for future projects and clinical trials both in Europe and elsewhere.

The first Coordination Committee meeting of the EDC Network took place in Strasbourg on 12 March 2002.

Activities

  • Workshops:

    -
    First Workshop on "Clinical Methods for Assessing Perinatal and Child Development" on 30 November 2002, Brussels (Belgium)  

    - Second Workshop on "Research in Early Developmental Care", on 15 March 2003, London (UK)  

    - Third  Workshop on "Research in Early Developmental Care", on 3-4 March 2005, London (UK) 

  • Meetings:  the Steering Committee met twice in Strasbourg (2002) and Stockholm (2004)

  • Training Conference

    -
    The Network supported and took active part in the IDNIC Conference (Infant Development in Neonatal Intensive Care) on 13-14 March 2003  in London 

    - The Network supported and took active part in the  IDNIC Conference (Infant Development in Neonatal Intensive Care) on 3-4 March 2005  

  • Review Article:  the Network has published a review article in a medical journal (Early developmental care for preterm babies:  a call for more research.  ArchDis Child Fetal Ed, 2004)