Gaps to fill in follow-up care of preterm babies

Australian-first guidelines aimed at improving the long-term health outcomes of premature babies have been released.
 
Published by the Murdoch Children’s Research Institute (MCRI) in collaboration with universities and healthcare bodies, the clinical practice guidelines focus on the follow-up care of babies born before 32 weeks’ gestation from the time they leave hospital up until six years of age. 
 
According to MCRI lead and author, neonatologist Professor Jeanie Cheong, the follow-up care of very preterm babies ‘lacks uniformity’. The guidelines were developed to provide ‘structured and specific’ post-discharge care for these babies who are at an increased risk of growth, health and developmental issues. 
 
‘Children born very preterm require intensive medical care to survive,’ Professor Cheong said.
 
‘Some difficulties present early in life and others during the preschool years.
 
‘Very preterm birth is distressing for caregivers and families and along with the additional carer burden, can have consequences for family wellbeing, mental health and quality of life.’
 
In Australia, most babies (92%) are born at term (37–41 weeks), with 32% at early term (37 or 38 weeks) and 60% at full term (39–41 weeks). In 2022, almost one in 10 babies (8.2%) were born pre-term, and of these, the majority were born between 32 and 36 completed weeks.
 
Around 3500 babies (1.1%) are born very preterm – less than 32 weeks’ gestation. Of these babies, more than half (60%) will experience difficulties.
 
While treatment for premature babies has advanced over time and survival rates have significantly improved, they are still at increased risk of long-term health setbacks compared with babies born at term. These include delayed growth, hearing loss, elevated blood pressure, neurodevelopmental and sleep problems, language delay and autism spectrum disorders.
 
But inadequate systematic follow-up at hospitals and general practice clinics, an unawareness of the health challenges and development faced by very preterm children, and where to seek assistance are all disrupting care, according to MCRI.
 
‘A lack of consistency in follow-up care at hospitals and other medical and community services has led to many children missing out on important assessments for identifying health issues and access to timely referrals,’ Professor Cheong said.
 
‘It’s critically important that difficulties are identified early to ensure children receive appropriate, early intervention.’
 
Approved by the National Health and Medical Research Council, the guidelines highlight that every family with a child born very preterm should be guided by a coordinated and multidisciplinary team to ensure health concerns are identified and treated early.
 
The MCRI notes ‘considerable variability’ in the timing and type of follow-up programs for babies born premature, with those born less than 28 weeks’ gestation in Australia usually offered a review until age 2–3 years by follow-up clinics associated with Neonatal Intensive Care Units (NICUs).
 
Follow-up extends beyond the ages of 2–3 years across several jurisdictions.
 
Dr Jamie Owen manages MCRI’s collaborative research program, High Risk Infants Flagship. She said the new guidelines outline the importance of coordinated care between general practice clinics, hospitals, and other healthcare centres.
 
‘[They] can work together to ensure all children have access to transformative, ongoing care and any health concerns are identified and treated early,’ she said.
 
‘Follow-up care needs to be tailored to each child and initiated by each hospital’s NICU team.
 
‘Post-discharge care may involve many healthcare professionals and services, making coordination between these teams essential to maximise efficiency, reduce duplication and lessen the burden on families.’
 
The guidelines also identify ‘a major opportunity’ for follow-up care to become more family centred, by tailoring more accessible information and supports to the needs of individual children and their families to promote health, development and wellbeing.
 
The MCRI says that further funding would also help extend follow-up care for babies born preterm throughout their schooling years and into adulthood.
 
The guidelines are set to be reviewed in five years and updated with any additional evidence-based recommendations.
 
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