36 CLINICAL FOCUS
36 CLINICAL FOCUS
12 DECEMBER 2025 ausdoc. com. au
Therapy Update
Follow up after preterm birth
Paediatrics
Professor Jeanie Cheong is a neonatologist with expertise in long-term outcomes of infants born preterm. She was the chair of the steering committee which launched the NHMRC-approved Guideline for Growth, Health and Developmental Follow-up for Children Born Very Preterm in 2024, an initiative of the Centre of Research Excellence in Newborn Medicine.
Almost 3000 infants are born very preterm every year in Australia, which may be associated with a wide range of potential long-term challenges.
PRETERM birth, that is birth prior to 37 completed weeks’ gestation, is associated with more challenges to health, growth and child development compared with birth at term( ≥37 weeks’ gestation). Increasingly, there is evidence pointing towards the negative impact on parents, in particular parental mental health. Advances in perinatal care have seen a dramatic rise in the survival of infants born preterm. For the most immature babies born extremely preterm(< 28 weeks’ gestation), survival to two years has risen by more than one-third in Victoria; from 53 %( births in 1991-92) to 74 %( births in 2016-17). 1 Ninety-one per cent of babies born very preterm(< 32 weeks’ gestation) in Australia and New Zealand survive to school age and older. 2 However, these children are at increased risk of a range of longterm problems affecting their health, growth and development. These long-term challenges potentially affect almost 3000 very preterm live births per year in Australia( 2022 data). 3
Long-term impact of preterm birth
Physical health In the childhood years, children born very preterm have poorer physical health than children born at term. The very preterm group have up to 14 times the odds of hospital admissions between birth and nine months of age, and up to three times the odds of having asthma and wheezing illnesses at five years of age, than children born at term. 4 Those born extremely preterm have poorer growth in childhood, and show few signs of catching up in weight and height up to school age. 5
Developmental outcomes Children born very preterm experience poorer developmental outcomes compared with children born at term. Cognitive delays affect around 17 % children born very preterm, and 21 % experience motor developmental delays. 6 The rates of cerebral palsy in children born very preterm are around 20 times higher than in term-born children; 19.6 per 1000 live births compared with one per 1000 term-born live births in Australia. 7 Furthermore, children born
Box 1. Guiding principles of the guideline
• Follow-up care should be family-centred, flexible, resource efficient and consistent.
• Follow-up should be equitable, culturally safe, and appropriate to each individual child and family’ s needs, preferences and values.
• Co-ordination of care is critical.
• Acknowledgement of groups who are at risk of experiencing inequitable care and outcomes, who may need additional resources.
• Specific issues relevant to Aboriginal and Torres Strait Islander peoples are addressed through engagement of representatives from the communities as members of the guideline development group. very preterm are more likely to have difficulties with social, emotional and behavioural functioning than term-born peers. These problems include hyperactivity / inattention, internalising( eg, symptoms of anxiety or depression) and challenges with peer interactions as well as clinical diagnoses of ADHD, anxiety disorders and autism spectrum disorder. 8, 9
Quality of life Health-related quality of life encompasses an individual’ s perception of their physical and mental health. To assess quality of life, validated questionnaires are filled in by parents or caregivers on behalf of the child. Quality of life for children born very preterm is on average lower than that of children born at term, with
10, 11 the disparities persisting into adulthood.
Parental mental health Parents of children born very preterm experience more symptoms of depression and anxiety compared with parents of children born at term, with rates estimated as high as 40-50 %. 12 This is an area that has historically been overlooked, but highlighted by parents with lived experience as an important outcome to consider at follow-up appointments for their children. 13
Gaps in care for children born very preterm
Substantial resources have been directed at acute care following very preterm birth. Infants receive care in the neonatal intensive and special care nurseries, which often include high technology equipment and treatments, and extensive investigations. The period of initial hospitalisation after birth is long, in the order
Children born very preterm are more likely to have difficulties with social, emotional and behavioural functioning than term-born peers.
Table 1. Follow-up schedule recommendations
Priorities |
7-10d PD |
6w PD |
3-4mo |
|
|
|
CA |
Physical health of 2-4 months, as children born very preterm remain in hospital until close to their due date, on average. However, following discharge after the initial hospital stay, the intensity of care drops off substantially. This was highlighted by families with lived experience of preterm birth in a recent Delphi study exploring parent perceptions of priorities for research in newborn medicine. Parents reported a“ Lack of information on what to expect long term in the preschool years. Felt that there was focus on leaving NICU and nothing after this.” 13
6mo CA #@
8-9mo CA
12mo CA
NEED TO KNOW
Children born very preterm, that is 2-4 months prior to their due date, have a higher chance of health and developmental challenges compared with children born at term.
With advances in care, survival of infants born very preterm has risen substantially, and thus more children born very preterm will be presenting to health professionals for long-term care.
There is a lack of universal guidelines for post-discharge follow-up care. Similarly lacking is awareness and education about the challenges faced by these children and their families.
The Centre of Research Excellence in Newborn Medicine has developed the first national guideline for follow-up care for children born very preterm, to provide an evidence-based framework for clinical care and advocacy.
Structured, preterm-specific postdischarge follow-up care should be offered to children born very preterm and their caregivers, regardless of risk and / or resilience factors.
Multidisciplinary follow-up, ranging from primary to tertiary care, is recommended, with a focus on communication and care co-ordination to maximise efficiency, reduce duplication of effort, and minimise family burden.
Follow-up care is jurisdiction-dependent and there is substantial variability across Australia. There were previously no national guidelines to guide clinicians and families as to what constitutes best evidence-based care. Access to the latest evidence on long-term outcomes of individuals born very preterm was often limited to scientific journals and specialist conferences. Thus, those involved in the care of children and adults born very preterm, including primary care and adult specialist
18mo |
24mo CA |
2.5y |
CA @ |
|
CA # |
General health + + + + + + + +
Growth + + + + + + + + Sensory( vision, hearing) + + + + + + +
Developmental
Feeding +
Sleep +
Behaviour, developmental progress and support
Quality of life
+ |
+ |
+ |
+ |
+ |
+ |
+ |
|
|
|
|
|
|
In-person formal |
|
|
|
|
|
|
assessment |
4-5y CA
+ In-person formal assessment
For child and family + + Family Wellbeing, mental health + + + + + + + + Resources / information + + + + + + + +
Abbreviations: PD— post-discharge, CA— corrected age( for prematurity), d— days, w— weeks, mo— months, y— years
#
Review if parental concerns or clinical need.
@
Consider telehealth.