Name | Location | Year of birth | Age at follow-up | Definition of severe disability | Survival to follow-up* | Severe disability at follow-up* | Severe disability at follow-up† |
---|---|---|---|---|---|---|---|
TNS | Trent, United Kingdom | 1991–1993 | 24 months | Audit commission standards | 59/249 (23.6%) | 19/249 (8%) | 19/59 (32%) |
EPICure | United Kingdom and Ireland | 1995 | 30 months | One that was likely to put the child in need of physical assistance to perform daily activities | 308/808 (38%) | 73/808 (9 %) | 73/308 (24%) |
The Leiden follow-up project | Three health regions in The Netherlands | 1996–1997 | 24 months | Either of abnormal muscle tone and reflex or MDI <68 or PDI <68 | 11/23 (48%) | 6/23 (26%) | 6/11 (54%) |
Victoria Infant Collaborative Study Group | Victoria, Australia | 1997 | 24 months | Cerebral palsy (unlikely ever to walk), blindness and development quotient <−3 SD on MDI of Bayley scales of infant development | 62/90 (69%) | 11/90 (12%) | 11/62 (18%) |
EPIBEL | Flanders, Belgium | 1999–2001 | 36 months | Either of neurologic abnormality (neuromotor, sensory and communicative functioning and non-febrile seizures) or MDI or PDI <70 | 41/84 (49%) | 13/84 (15.4%) | 13/41 (32%) |
TNS | Trent, United Kingdom | 2001–2003 | Oxford minimum dataset standards | 103/230 (45%) | 48/230 (21%) | 48/103 (47%) | |
Victoria Infant Collaborative Study Group | Victoria, Australia | 2005 | 24 months | Severe developmental delay was characterised by a score on either scale <−3 SD of Bayley Scales of Infant and Toddler Development | Concludes that level of disability has improved as compared to 1997 cohort in babies born at less that 28 weeks' gestation‡. |
↵* Out of babies admitted for neonatal intensive care.
↵† Out of survivors to follow-up.
↵‡ Number of live born babies offered intensive care and gestation-specific disability outcomes not available in paper.
EPIBEL, extremely preterm infants in Belgium study group; MDI, mental development index; PDI, psychomotor development index.