Beyond crystal balls: Long-term outcomes in understudied, high-risk populations of neonatal intensive care; an analysis of professionals’ attitudes, tools and children’s outcomes

Abstract

Background

Increased survival rates for children with understudied conditions, such as those with congenital anomalies requiring early major surgery, or other severe conditions such as Human Parechovirus type 3 (HPeV-3), have resulted in neonatal intensive care units needing to help families to identify and manage children’s longer-term disability and poor neurodevelopmental outcomes. Undiagnosed and untreated disability following neonatal surgery and HPeV-3 infection exists. With no formal longer term follow-up services routinely in place, families are unsure where to seek support and what they can do to assist their children.

Methods

Two longitudinal follow-up studies with multiple timepoint and statistical analyses were undertaken to complete this thesis: 1) 1, 3 and 8 and 9 year follow-ups were conducted for children who survived either cardiac or non-cardiac surgery (DAISy study); 2) 3 and 8 year follow-ups were conducted for survivors of HPeV-3 infection (ELPIN Study).

Results

Children who had cardiac surgery, non-cardiac surgery and HPeV-3 had poorer motor outcomes, with higher rates of motor impairment and higher risk of Developmental Coordination Disorder (DCD), when compared to healthy controls and the reported population prevalence respectively. Boys had poorer outcomes at 8 years in both the surgical and HPeV-3 infection populations.

Conclusion

In Australia, current routine long-term follow-up clinics at 8 years are non-existent for the HPeV-3 infection populations and are only short term for the surgical populations. This impacts the ability to identify DCD, motor impairments and other long-term sequelae, and therefore the ability to engage in early intervention to maximise neurodevelopmental outcomes. Children who require early surgery and who are admitted with HPeV-3 infection should be considered high-risk populations for longer-term neurodevelopmental sequelae, and their development should be systematically followed up until at least 8 years of age.