The healthcare needs of preterm and extremely premature babies in Australia—assessing the long-term health service use and costs with a data linkage cohort study

The health conditions associated with extreme prematurity will likely require life-long treatment and management. As such, planning for the provision of healthcare services is essential in order to maximise their long-term well-being. We sought to quantify the use of healthcare services and the associated costs for extremely premature babies compared to preterm and term babies in Australia using a whole-of-population linked administrative dataset. In the first year of life, extremely premature babies had an average of 3.4 hospital admissions, and 2 emergency department presentations. They also had an average of 16 specialist attendances, 33 pathology tests and 6 diagnostic imaging tests performed. This was more than that utilised by preterm and full-term babies. The mean annual cost of hospitalisations was $182,312 for extremely premature babies in the first year and $9958 in the second year. The mean annual out-of-pocket fees for these services were $2212 and $121 in the first and second years respectively. Conclusion: Understanding the long-term healthcare needs of extremely premature babies in order to provide both an adequate number of services and also connection between services should be a central part of health system planning as the survival rates of extremely premature babies improve over time.What is Known:• The health service use of extremely premature babies is higher at the time of birth.• Health conditions and disabilities associated with extreme prematurity require life-long care.What is New:• Extremely premature babies have more diverse and frequent access to services than premature and term babies until at least age 2.• This comes at higher cost to families through out-of-pocket payments.