Challenges of neurodevelopmental follow-up for extremely preterm infants at two years

•Challenges for clinical follow-up programmes for preterm infants include attrition and accurate classification of delay.•Factors associated with loss to follow-up included living in rural areas, lower socioeconomic status and higher gestation.•The main reason for loss to follow-up in the clinical setting was loss of contact with families.•The Bayley-III Assessment of Infant and Toddler Development underestimated the rates of delay in a clinical setting.•Accurately determining delay in clinical follow-up programmes is important and requires local normative data for comparison.

AimThis study examined the rates of follow-up for a cohort of extremely preterm (EP —< 28 weeks gestation) and/or extremely low birthweight (ELBW —< 1000 g) children at two years with related perinatal and geographical factors. The secondary aim was to determine the rates of developmental delay and disability.MethodsA 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.ResultsOnly 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%).ConclusionsFollow-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.