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When a very preterm infant is first discharged from hospital the intensity of care drops off dramatically, compared with their initial, often extended, intensive and special care nursery stay. physicians, may not have easily been able to keep abreast with the latest evidence to guide practice. With increasing numbers who are surviving to adulthood, this has been a critical gap to address.
Early identification of the health and developmental needs of children born very preterm has the potential to optimise their outcomes, through early intervention and healthy lifestyle choices. Thus, it has been vital to develop a high-quality guideline for follow-up care to identify problems early.
Guideline for Growth, Health and Developmental Follow-Up for Children Born Very Preterm
The Centre of Research Excellence in Newborn Medicine is an NHMRC-funded grant scheme that aims to improve health outcomes and promote and improve translation of research outcomes into policy and / or practice. In 2022, a major translational initiative of the centre was to develop the first nationwide guideline for follow-up of children born very preterm. The guideline drew on multidisciplinary representatives from all states and territories in Australia, including primary care and consumers with lived experience. The guideline was endorsed and formally launched in mid-2024.
The purpose is to provide evidence-based guidance prior to the child commencing fulltime formal schooling to ensure that problems are identified early and intervention is offered in a timely manner. The guideline is aimed at a broad audience that includes healthcare professionals and parents / caregivers. The goal of the guideline is to help strengthen families who have experienced very preterm birth through promoting optimal growth, health and developmental outcomes for children, and mental health of their caregivers. The period of recommendations only extends to school entry because of feasibility and the time frame for the guideline delivery. A similar guideline for
follow-up care from school age to adulthood is underway.
There are important guiding principles of the guideline that are specific to the Australian context. These are outlined in box 1.
In summary, there are two consensus-based recommendations. Firstly, that structured, preterm-specific post-discharge follow-up care should be offered to children born very preterm and their caregivers. Secondly, that this follow-up care should be offered to all children born very preterm and their caregivers, regardless of the presence of risk and / or resilience factors.
The follow-up schedule( see table 1) recommends a minimum set of contacts and priorities. There are also recommended measurement tools for the different priorities to be assessed( see table 2). Although the recommendations may appear extensive, many
Table 2. Recommended measurement tools and time points of assessment Outcome
Discharge to 3mo CA
6-12mo CA
Multiple domains +
• Bayley Scales of Infant and Toddler Development, 4th edition
• Ages and Stages Questionnaires( ASQ) Cognition
• Wechsler Preschool and Primary Scales of Intelligence( WPPSI-IV)
• Behaviour, developmental progress and support Motor
• General movements assessment +
• Hammersmith Infant Neurological Examination +
• Movement Assessment Battery for Children, 2nd edition( ABC-2)
Behaviour
• Infant – Toddler Social and Emotional Assessment( ITSEA) +
2-2.5y CA
• Strengths and Difficulties Questionnaire( SDQ) +
Abbreviations: Q— Questionnaire, CA— corrected age( for prematurity), mo— months, y— years
+
4-5y CA
+
+ of the time points of contact are not‘ new’. In fact, a proportion of the recommended follow-up schedule is already in place in many jurisdictions( eg, maternal and child health nurse visits at day 7-10 and six weeks). In addition, not all follow-up time points need to be completed in person. Flexibility is key and alternative approaches to in-person follow-up care, such as telehealth, are increasingly being utilised and may be less resource intensive. Also acknowledged is the importance of education of health providers involved in follow-up care for children born very preterm. Increasing training and upskilling opportunities will empower the follow-up workforce with the skills and knowledge of preterm-specific health and developmental challenges.
Conclusions
There are increasing numbers of children born very preterm who are surviving to adulthood. As they are at risk of problems in multiple areas including growth, health and development, it is important to identify problems early so that the children and their families can benefit from interventions to optimise outcomes. The launch of the first national guideline for follow-up care of children born very preterm is an important milestone to reaching this goal. It is critical to raise the awareness of the availability of this invaluable resource to all levels of health professionals involved in their longterm care.
References on request from kate. kelso @ adg. com. au
Online resource
Centre of Research Excellence in Newborn Medicine crenewbornmedicine. org. au
• Guideline: bit. ly / 4gZpfgp