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Developmental follow-up of children and young people born preterm

By - Hina Zahid
Published On 2018-12-03 13:30 GMT   |   Update On 2018-12-03 13:30 GMT

NICE has released guidelines on Developmental follow-up of children and young people born preterm.


Following are the major recommendations:





A. 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 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:




  1. their child's potential developmental needs

  2. their level of education

  3. any social care needs they have

  4. any cultural, spiritual or religious beliefs

  5. 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, recognizing the significant potential impact of having a preterm baby on all the family. Times when support may be particularly valuable include:




  1. when the baby is transferred between units or hospitals

  2. 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




  • Start discharge planning as soon as possible after the birth of a preterm baby, and involve parents or carers at all stages.

  • Before discharging a preterm baby:




  1. agree a discharge plan with the parents or carers

  2. ensure that the discharge plan includes clear information about any antenatal and perinatal risk factors for developmental problems and disorders

  3. share the written discharge plan with parents or carers and with primary and secondary healthcare teams.




  • 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:




  1. interaction with the baby

  2. managing feeding

  3. patterns of sleeping

  4. physical positioning of the baby, including safe sleeping

  5. 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.




Information before discharge about ongoing support and follow-up




  • Inform parents or carers of all preterm babies about the routine postnatal care and support available, as described in the NICE guideline on postnatal care up to 8 weeks after birth.

  • Explain to parents and carers of preterm babies about:




  1. universal services and national recommendations for assessing the development of all children through screening (for example, newborn hearing screening) and surveillance (including social, emotional, behavioural and language development) and

  2. whether their baby will also be offered enhanced developmental support and surveillance and plans for follow-up.




  • Explain to parents or carers that their child's developmental (corrected) age, which is calculated from their original due date (and not the date they were born), will be used for the first 2 years when assessing their functional and developmental skills (such as walking and talking).

  • Advise parents or carers to talk to their health visitor or GP if they have any concerns about their child's development at any stage of childhood or adolescence.




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 recognize and manage problems in these babies, including:




  1. providing feeding support

  2. addressing concerns about sleeping

  3. helping parents or carers to interact with their baby.







B. Risk and prevalence of developmental problems and disorders




  • Be aware that children and young people born preterm are at increased risk of developmental problems and disorders.

  • Be aware that for recommendations in this section:




  1. for some developmental problems and disorders there was an absence of evidence about overall risk and prevalence in children born preterm

  2. there was limited evidence about developmental problems and disorders in 11–18-year-olds

  3. for some developmental problems and disorders the evidence was underpowered to detect an effect

  4. some studies described specific gestational ages at birth, from which the committee was unable to extrapolate to other gestational ages

  5. other gestational ages and other factors not listed here might also be associated with increased risk of developmental problems and disorders.




Cerebral palsy




  • Be aware that children born preterm are at increased risk of cerebral palsy, and that:




  1. 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



  2. 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:




  1. brain lesions (for example, grade 3 or 4 intraventricular haemorrhage, periventricular leukomalacia, infarct)

  2. necrotising enterocolitis that needed surgery

  3. neonatal sepsis

  4. 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:




  1. 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



  2. 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:




  1. brain lesions detected by ultrasound

  2. 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+0weeks' gestation:


    1. intraventricular haemorrhage

    2. 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:




  1. grade 3 or 4 intraventricular haemorrhage

  2. cystic periventricular leukomalacia

  3. 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:




  1. intraventricular haemorrhage in babies born before 34+0 weeks' gestation

  2. 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:




  1. major brain lesions (for example, periventricular leukomalacia, parenchymal lesions)

  2. mother with mental health problems

  3. mother younger than 25 years

  4. 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:





  1. grade 3 or 4 intraventricular haemorrhage with a shunt

  2. neonatal sepsis in babies born before 33+0 weeks' gestation

  3. 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:




  1. small for gestational age

  2. male sex

  3. mother from a low-income or disadvantaged background

  4. black, Asian or other minority ethnic group

  5. multiple pregnancy.






C. 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:




  1. have a developmental problem or disorder or

  2. 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 hemorrhage 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.




Criteria for enhanced developmental support and surveillance at 4 years (uncorrected age)




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




Providing enhanced developmental support




  • 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:




  1. face-to-face meetings, in clinics or in the home

  2. a telephone helpline

  3. text messages, emails or similar.





Providing enhanced developmental surveillance up to 2 years (corrected age)




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




  1. 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 monthsand



  2. a detailed face-to-face developmental assessment at 2 years (corrected age).





Checks at each developmental visit and assessment




  • At each face-to-face follow-up visit and developmental assessment for a child born preterm who is having enhanced developmental surveillance, professionals with appropriate skills should:




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

  2. include checks for developmental problems and disorders

  3. measure length or height, weight and head circumference

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

  5. correct for gestational age up to 2 years when assessing development

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

  7. 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:




  1. cerebral palsy

  2. global developmental delay and learning disability (intellectual disability)

  3. autism spectrum disorder

  4. visual impairment

  5. hearing impairment

  6. feeding problems

  7. sleep problems, including sleep apnoea

  8. speech, language and communication problems

  9. motor problems

  10. problems with inattention, impulsivity or hyperactivity

  11. emotional and behavioural problems

  12. executive function problems

  13. potential special educational needs.




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




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

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

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

  4. persisting feeding difficulties.



See also the NICE guideline on cerebral palsy in under 25s: assessment and management.

  • 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.




Developmental assessment at 2 years (corrected age)




  • 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:




  1. all aspects listed in recommendation 1.3.7

  2. 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



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

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





Follow-up and assessment after 2 years (corrected age)




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




  1. 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

  2. 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).





Further developmental assessment at 4 years (uncorrected age) for children born before 28+0weeks' gestation




  • 1.3.13Provide 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:




  1. all aspects listed in recommendation 1.3.7

  2. 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



  3. reviewing previous assessments and information from all other relevant sources

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

  5. GMFCS score if cerebral palsy has been diagnosed

  6. 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:




  1. is in a format that is accessible to parents and carers

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

  3. should be shared with the neonatal consultant.





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:




  1. share information with:


    • parents or carers

    • primary and secondary healthcare teams



  2. refer the child to an appropriate local pathway for further assessment

  3. 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:




  1. preterm birth may be a factor in learning or behavioural problems

  2. these problems can emerge at any point during a child or young person's education

  3. prompt referral to educational support services may be needed.






D. Delivering enhanced developmental support and surveillance




  • Enhanced developmental support and surveillance for children born preterm who meet the defined criteria should:




  1. be provided as an integral part of a neonatal service working together with local health services

  2. empower parents and carers to be involved in decisions about their child's care

  3. be delivered by a multidisciplinary team with the necessary skills

  4. record outcomes at specified time points for national audit

  5. be monitored by checking adherence to the recommendations in this guideline, including follow-up rates and outcomes, as part of the routine provision of neonatal care by neonatal operational delivery networks and commissioners.




  • Multidisciplinary teams delivering enhanced developmental support and surveillance for children born preterm should include professionals with knowledge and expertise in the following areas:




  1. neonatal care

  2. development of children born preterm, including developmental problems and disorders

  3. providing support in the community, for example for feeding problems

  4. administering and interpreting results from questionnaires and standardised tests (for example, the PARCA-R, SDQ, ASQ and IQ tests such as the WPPSI)

  5. collating information from a range of sources to facilitate decision-making and writing reports

  6. local care pathways, including Early Years education.




  • Multidisciplinary teams delivering enhanced developmental support and surveillance for children born preterm should include the following professionals:




  1. for enhanced developmental support:


    • neonatologist or paediatrician with an understanding of neonatal care and child development

    • outreach nurse or nurse with expertise in the development of babies born preterm



  2. for the surveillance assessments up to and including 2 years (corrected age):


    • neonatologist or paediatrician with an understanding of neonatal care and child development

    • at least one of occupational therapist, physiotherapist and speech and language therapist



  3. for the surveillance assessment at 4 years (uncorrected age):


    • educational or clinical psychologist

    • paediatrician with expertise in neurodevelopment.






  • Multidisciplinary teams delivering enhanced developmental support and surveillance for children born preterm should have access to the following professionals:




  1. community nurse or health visitor

  2. occupational therapist

  3. physiotherapist

  4. speech and language therapist

  5. paediatric neurologist

  6. dietitian.





E. Neonatal audit




  • Record the following information, as applicable, in the National Neonatal Research Database for every child born preterm who has enhanced developmental surveillance:




  1. whether the child had specialist neonatal care and if so, relevant details

  2. the reasons for enhanced surveillance

  3. at the assessment at 2 years (corrected age):


    • diagnosis of cerebral palsy

    • GMFCS score if cerebral palsy is present

    • PARCA-R score

    • epilepsy that is currently being treated

    • impairments of hearing, vision, speech and language, and motor skills[2]



  4. at the assessment at 4 years (uncorrected age):


    • diagnosis of cerebral palsy

    • GMFCS score if cerebral palsy is present

    • full scale IQ score

    • SDQ total difficulty score, subscale scores and impact score

    • any formal clinical diagnoses of a developmental disorder (for example, autism spectrum disorder)

    • epilepsy that is currently being treated

    • the presence of a hearing impairment, defined as profound deafness or impairment severe enough to need hearing aids or cochlear implant

    • results of national orthoptic vision screening.






  • Record routine educational measures at Key Stage 2 (including special educational needs and disability [SEND]) on an operational delivery network-wide basis, to allow educational outcomes at 11 years to be linked to neonatal information.


To read the complete guidelines, Click on the following link:

www.nice.org.uk/guidance/ng72

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Article Source : With inputs from NICE

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