title: Challenges of neurodevelopmental follow-up for extremely preterm infants at two years.
abstract: OBJECTIVE
  This study examined the rates of follow-up for a cohort of extremely preterm (EP -<28weeks gestation) and/or extremely low birthweight (ELBW -<1000g) children at two years with related perinatal and geographical factors. The secondary aim was to determine the rates of developmental delay and disability.
  
  
  METHODS
  A retrospective review of two year follow-up data for all EP and/or ELBW infants born in a large tertiary neonatal hospital over a two year period was undertaken. Neurodevelopmental outcome was assessed using the Bayley Scales of Infant and Toddler Development Scale - 3rd edition (Bayley-III) and neurosensory disability was assessed by a paediatrician using a standard proforma. Rates of delay (composite score≥1SD below mean) were determined using the Bayley-III test norms and a local cohort normative group. Attrition rates and reasons for loss to follow-up were determined.
  
  
  RESULTS
  Only 50% (109/219) of eligible children participated in the follow-up. The follow-up rate for children engaged in an ongoing research project was excellent at 98% (58/59), however it was only 32% (51/160) for children following the clinical pathway. The main reason for not attending the follow-up was loss of contact. Factors associated with attendance included a lower gestation, sepsis and living in the metropolitan areas. The rates of delay in this cohort were greater with reference to local cohort normative data compared to Bayley-III test norms with an overall rate of delay of 72% (95%CI, 63% to 81%) compared to 38% (95%CI, 29% to 50%).
  
  
  CONCLUSIONS
  Follow-up of EP/ELBW infants to two years is an important part of clinical care, however the high rate of attrition in routine clinical follow-up and consequent difficulty in accurately determining rates of delay highlight challenges for centres providing ongoing care.
authors.affiliation: Neonatal Services, Royal Women's Hospital, Locked Bag 300, Parkville 3052, Australia.
authors.forename: Jane
authors.initials: J
authors.lastname: L Orton
authors.affiliation: Department of Physiotherapy, School of Health Sciences, University of Melbourne, Carlton, Australia.
authors.forename: Jennifer L
authors.initials: JL
authors.lastname: McGinley
authors.affiliation: Neonatal Services, Royal Women's Hospital, Locked Bag 300, Parkville 3052, Australia.
authors.forename: Lisa M
authors.initials: LM
authors.lastname: Fox
authors.affiliation: Neonatal Services, Royal Women's Hospital, Locked Bag 300, Parkville 3052, Australia; Victorian Infant Brain Studies, Murdoch Childrens Research Institute, 4th Floor, Flemington Road, Parkville, VIC 3052, Australia; Department of Physiotherapy, School of Health Sciences, University of Melbourne, Carlton, Australia.
authors.forename: Alicia Jane
authors.initials: AJ
authors.lastname: Spittle
mesh_terms: D002657:Child Development / Q000502:physiology*; D002658:Developmental Disabilities / Q000175:diagnosis* / Q000503:physiopathology; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D062071:Infant, Extremely Premature; D007231:Infant, Newborn; D008297:Male; D011247:Pregnancy; D012189:Retrospective Studies
keywords: Child development; Developmental assessment; Developmental surveillance; Early intervention; Follow-up; Preterm infant