Developmental Follow-up of Children and Young People Born Preterm

Overview

This Guidelines summary covers the developmental follow-up of babies, children, and young people under 18 years who were born preterm (before 37⁺⁰ weeks of pregnancy). It explains the risk of different developmental problems and disorders, and specifies what extra assessments and support children born preterm might need during their growth and development.

Information and Support for Parents and Carers of All Preterm Babies

Providing Information and Support

• Be aware that the majority of children and young people born preterm have a good developmental outcome and good quality of life
• Provide information about the risk and prevalence of developmental problems and disorders in babies born preterm (see the section, Risk and prevalence of developmental problems and disorders) to parents or carers, and offer to discuss this with them
• Provide information to parents or carers of preterm babies that is tailored to their individual circumstances, taking into account:
  • their child’s potential developmental needs
  • their level of education
  • any social care needs they have
  • any cultural, spiritual or religious beliefs
  • the need for consistency in information sharing among healthcare professionals
• Follow the principles in the NICE guideline on patient experience in NHS services in relation to communication (including different formats and languages), information, shared decision-making and continuity of care
• Provide emotional and psychological support to parents or carers of preterm babies as needed, recognising the significant potential impact of having a preterm baby on all the family. Times when support may be particularly valuable include:
  • when the baby is transferred between units or hospitals
  • leading up to and on discharge home
• Provide information to parents or carers of preterm babies about opportunities for peer support.

Information and Support Leading up to and on Discharge Home

Discharge Planning and Support

• Help parents or carers to gain the knowledge, skills and confidence they need to look after their baby at home and to support the baby’s developmental needs, taking into account that they are likely to be anxious about caring for their baby after discharge. This may relate to:
  • interaction with the baby
  • managing feeding
  • patterns of sleeping
  • physical positioning of the baby, including safe sleeping
  • impact on day-to-day living, such as social isolation because of fear of infection
• Involve the social support networks (which may include partners, grandparents or other family members) of parents or carers of a baby born preterm when planning discharge and during follow-up.

Care, Support, and Follow-up after Discharge

• Healthcare professionals providing postnatal care and support in the community for babies born preterm should have the skills and knowledge to recognise and manage problems in these babies, including:
  • providing feeding support
  • addressing concerns about sleeping
  • helping parents or carers to interact with their baby.

Risk and Prevalence of Developmental Problems and Disorders

Cerebral Palsy

• Be aware that children born preterm are at increased risk of cerebral palsy, and that:
  • the following are independent risk factors:
    • grade 3 or 4 intraventricular haemorrhage
    • cystic periventricular leukomalacia
    • neonatal sepsis
    • bronchopulmonary dysplasia for which mechanical ventilation was still needed at 36 weeks’ postmenstrual age
    • antenatal steroids not given
    • postnatal steroids given to babies born before 32⁺⁰ weeks’ gestation
  • prevalence increases with decreasing gestational age
• See also the NICE guideline on cerebral palsy in under 25s: assessment and management.

Motor Function Problems

• Be aware that children born preterm are at increased risk of motor function problems, and that the following are independent risk factors:
  • brain lesions (for example, grade 3 or 4 intraventricular haemorrhage, periventricular leukomalacia, infarct)
  • necrotising enterocolitis that needed surgery
  • neonatal sepsis
  • severe retinopathy of prematurity
• Be aware that there is an increased prevalence of developmental coordination disorder in children born preterm compared with the general population.

Learning Disability (Intellectual Disability)

• Be aware that children born preterm are at increased risk of learning disability (intellectual disability), and that:
  • the following are independent risk factors:
    • grade 3 or 4 intraventricular haemorrhage
    • cystic periventricular leukomalacia
    • neonatal sepsis in babies born before 28⁺⁰ weeks’ gestation
    • necrotising enterocolitis that needed surgery in babies born before 33⁺⁰ weeks’ gestation
    • bronchopulmonary dysplasia for which mechanical ventilation was still needed at 36 weeks’ postmenstrual age in babies born before 28⁺⁰ weeks’ gestation
    • severe retinopathy of prematurity in babies born before 28⁺⁰ weeks’ gestation
    • small for gestational age
    • postnatal steroids given to babies born before 33⁺⁰ weeks’ gestation
    • mother from a low-income or disadvantaged background
  • prevalence increases with decreasing gestational age.

Special Educational Needs and Educational Attainment

• Be aware that children born preterm are at increased risk of having special educational needs, and that the following are independent risk factors:
  • brain lesions detected by ultrasound
  • male sex
• Be aware that children born preterm are at increased risk of low educational attainment at the end of the Early Years Foundation stage and at key stage 1 (age up to 7 years), and that:
  • prevalence of low educational attainment increases with decreasing gestational age
  • children born preterm are at increased risk of low attainment for reading and maths, and this risk is greater in children born before 26⁺⁰ weeks’ gestation
  • the following are independent risk factors for low attainment in maths in children born before 32⁺⁰ weeks’ gestation:
    • intraventricular haemorrhage
    • bronchopulmonary dysplasia for which mechanical ventilation was still needed at 36 weeks’ postmenstrual age.

Executive Function Problems

• Be aware that children born before 32⁺⁰ weeks’ gestation are at increased risk of executive function problems at preschool and school ages, and that prevalence increases with decreasing gestational age.

Speech, Language and Communication

• Be aware that children born preterm are at increased risk of speech, language and communication problems and disorders, and that the following are independent risk factors for language disorder:
  • grade 3 or 4 intraventricular haemorrhage
  • cystic periventricular leukomalacia
  • male sex.

Attention, Impulsivity and Hyperactivity

• Be aware that children born before 33⁺⁰ weeks’ gestation are at increased risk of symptoms of hyperactivity, impulsivity and particularly inattention at preschool and school ages
• Be aware that children born before 28⁺⁰ weeks’ gestation are at increased risk of attention deficit hyperactivity disorder (ADHD), and that male sex is an independent risk factor.

Autism Spectrum Disorder

• Be aware that children born before 28⁺⁰ weeks’ gestation are at increased risk of symptoms of social communication impairment, which may suggest a problem in the autism spectrum
• Be aware that children born preterm are at increased risk of autism spectrum disorder, and that the following are independent risk factors:
  • intraventricular haemorrhage in babies born before 34⁺⁰ weeks’ gestation
  • male sex.

Emotional and Behavioural Problems

• Be aware that children born preterm are at increased risk of emotional and behavioural problems, particularly internalising behaviours and passivity, at preschool and school ages, and that the following are independent risk factors:
  • major brain lesions (for example, periventricular leukomalacia, parenchymal lesions)
  • mother with mental health problems
  • mother younger than 25 years
  • mother from a low-income or disadvantaged background.

Feeding Problems

• Be aware that children born preterm are at increased risk of oro-motor feeding problems (for example, problems with sucking and chewing), and that this increased risk persists until at least 6 years of age in children born before 26⁺⁰ weeks’ gestation.

Sleep Problems

• Be aware that children born preterm are at increased risk of sleep apnoea up to 6 years of age.

Visual Impairment

• Be aware that the prevalence of visual impairment increases with decreasing gestational age in children born preterm, and that the following are independent risk factors:
  • grade 3 or 4 intraventricular haemorrhage with a shunt
  • neonatal sepsis in babies born before 33⁺⁰ weeks’ gestation
  • retinopathy of prematurity needing treatment.

Hearing Impairment

• Be aware that the prevalence of hearing impairment increases with decreasing gestational age in children born preterm, and that neonatal sepsis is an independent risk factor in babies born before 28⁺⁰ weeks’ gestation.

Developmental Delay

• Be aware that children born preterm are at increased risk of developmental delay (identified using a range of tools), and that the following are independent risk factors:
  • small for gestational age
  • male sex
  • mother from a low-income or disadvantaged background
  • black, Asian or other minority ethnic group
  • multiple pregnancy.

Enhanced Developmental Support and Surveillance

Criteria for Enhanced Developmental Support and Surveillance up to 2 Years (Corrected Age)

• Provide enhanced developmental support and surveillance by a multidisciplinary team up to 2 years (corrected age) for children born preterm who:
  • have a developmental problem or disorder or
  • are at increased risk of developmental problems or disorders, based on the following criteria:
    • born before 30⁺⁰ weeks’ gestation or
    • born between 30⁺⁰ and 36⁺⁶ weeks’ gestation and has or had 1 or more of the following risk factors:
      • a brain lesion on neuroimaging likely to be associated with developmental problems or disorders (for example, grade 3 or 4 intraventricular haemorrhage or cystic periventricular leukomalacia)
      • grade 2 or 3 hypoxic ischaemic encephalopathy in the neonatal period
      • neonatal bacterial meningitis
      • herpes simplex encephalitis in the neonatal period
• Consider enhanced developmental support and surveillance by a multidisciplinary team up to 2 years (corrected age) for children born preterm who do not meet the criteria in recommendation but are suspected of being at increased risk of developmental problems or disorders, taking into account the presence and severity of risk factors.

Information Sharing and Referral

• If findings at any stage of developmental surveillance, including the assessments at 2 years (corrected age) and 4 years (uncorrected age), suggest any developmental problems or disorders:
  • share information with:
    • parents or carers
    • primary and secondary healthcare teams
  • refer the child to an appropriate local pathway for further assessment
  • ask parents or carers for permission to share the information with:
    • education services
    • social care services as appropriate.

Later Presentation of Learning or Behavioural Problems

• Primary and secondary education professionals should be aware that:
  • preterm birth may be a factor in learning or behavioural problems
  • these problems can emerge at any point during a child or young person’s education
  • prompt referral to educational support services may be needed.