Jane L Orton1, Jennifer L McGinley2, Lisa M Fox1, Alicia Jane Spittle3. 1. Neonatal Services, Royal Women's Hospital, Locked Bag 300, Parkville 3052, Australia. 2. Department of Physiotherapy, School of Health Sciences, University of Melbourne, Carlton, Australia. 3. 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.
Abstract
AIM: 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. Crown
AIM: 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. Crown