Developmental follow-up of children and young people born preterm

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 section 1.2) 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 guidelines on patient experience in NHS services and babies, children and young people's experience of healthcare in relation to communication (including different formats and languages), information and continuity of care. Also see NICE's guideline on shared decision making.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

Provide enhanced developmental support and surveillance by a multidisciplinary team (see section 1.4) 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 1.3.1 but are suspected of being at increased risk of developmental problems or disorders, taking into account the presence and severity of risk factors (see recommendations 1.2.3 to 1.2.20).

Provide a face-to-face developmental assessment at 4 years (uncorrected age) for all children born before 28⁺⁰ weeks' gestation (see recommendation 1.3.13).

Provide parents or carers of a preterm baby having enhanced developmental support with a single point of contact within the neonatal service for outreach care after discharge.

Use a range of approaches when providing enhanced developmental support and tailor the support to take account of individual preferences and needs. Approaches may include:

• face-to-face meetings, in clinics or in the home

• a telephone helpline

• text messages, emails or similar.

For all children born preterm who are having enhanced developmental surveillance, provide as a minimum:

• 2 face-to-face follow-up visits in the first year that focus on development, at the following corrected ages:

  • between 3 and 5 months and

  • by 12 months
    
    and

• a detailed face-to-face developmental assessment at 2 years (corrected age) (see recommendation 1.3.11).

At each face-to-face follow-up visit and developmental assessment (see recommendations 1.3.6, 1.3.11 and 1.3.13) for a child born preterm who is having enhanced developmental surveillance, professionals with appropriate skills (see section 1.4) should:

• discuss with parents or carers whether they have any concerns about their child's development

• include checks for developmental problems and disorders (see recommendation 1.3.8)

• measure length or height, weight and head circumference

• carefully evaluate and review any developmental concerns reported by parents or carers or noted during the visit or assessment

• correct for gestational age up to 2 years when assessing development

• consider further investigation or referral if a developmental problem or disorder is suspected or present

• refer the child to the appropriate local pathway if needed.

At each face-to-face follow-up visit and developmental assessment for a child born preterm who is having enhanced developmental surveillance, check for signs and symptoms of developmental problems and disorders as appropriate, such as:

• cerebral palsy (see recommendation 1.3.9)

• global developmental delay and learning disability (intellectual disability)

• autism spectrum disorder (see recommendation 1.3.10)

• visual impairment

• hearing impairment

• feeding problems

• sleep problems, including sleep apnoea

• speech, language and communication problems

• motor problems

• problems with inattention, impulsivity or hyperactivity

• emotional and behavioural problems

• executive function problems

• potential special educational needs.

Recognise the following as possible early motor signs of cerebral palsy:

• delayed motor milestones, such as late sitting, crawling or walking (correcting for gestational age)

• unusual (abnormal or absent) fidgety movements or other abnormalities of movement, including asymmetry or paucity of movement

• abnormalities of tone, including hypotonia (floppiness) or spasticity (stiffness)

• persisting feeding difficulties.

For guidance on recognising signs and symptoms of possible autism spectrum disorder, see the NICE guideline on autism spectrum disorder in under 19s: recognition, referral and diagnosis.

Provide a face-to-face developmental assessment at 2 years (corrected age) for children born preterm who are having enhanced developmental surveillance. This assessment should include as a minimum:

• all aspects listed in recommendation 1.3.7

• using the Parent Report of Children's Abilities – Revised (PARCA-R) to identify if the child is at risk of global developmental delay, learning disability (intellectual disability) or language problems:

  • if the PARCA-R is not suitable (for example, because of poor English language comprehension or the child being outside the validated age range of 22 to 26 months), use a suitable alternative parent questionnaire

• Gross Motor Function Classification System (GMFCS) score if cerebral palsy has been diagnosed

• ensuring that checks of vision and hearing have been carried out in line with national recommendations.

After the developmental assessment at 2 years (corrected age):

• advise parents or carers of all children that their child should continue to be followed up by universal screening and surveillance services for all children and young people and

• advise parents or carers of children born before 28⁺⁰ weeks' gestation that their child will also be offered a further developmental assessment at 4 years (uncorrected age).
  
  For more information on universal screening and surveillance services in England, see the Healthy Child Programme.

Provide a face-to-face developmental assessment at 4 years (uncorrected age) for all children born before 28⁺⁰ weeks' gestation that includes as a minimum:

• all aspects listed in recommendation 1.3.7

• using the following parent questionnaires, to be completed by parents or carers beforehand and the results discussed during the assessment:

  • the Strengths and Difficulties Questionnaire (SDQ), to check for social, attentional, emotional and behavioural problems

  • the Ages and Stages Questionnaire (ASQ) 48-month questionnaire, to check for various aspects of development

• reviewing previous assessments and information from all other relevant sources

• using a standardised test to assess IQ, such as the Wechsler Preschool and Primary Scales of Intelligence 4th Edition (WPPSI) test

• GMFCS score if cerebral palsy has been diagnosed

• ensuring that the child has been offered orthoptic vision screening as recommended by the National Screening Committee.

After the 4-year assessment, provide a comprehensive summary of the child's strengths and difficulties, including any developmental problems and disorders, that:

• is in a format that is accessible to parents and carers

• if needed, informs the development of a plan for intervention and support, including educational support

• should be shared with the neonatal consultant.

If findings at any stage of developmental surveillance, including the assessments at 2 years (corrected age) and 4 years (uncorrected age) (see recommendations 1.3.11 and 1.3.13), 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.

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.