Quality statement 3: Enhanced developmental surveillance | Developmental follow-up of children and young people born preterm | Quality standards

Quality statement

Children born preterm who are eligible for enhanced developmental surveillance have at least 2 follow-up appointments in the first year and an assessment at 2 years that focus on development.

Rationale

Children who are born preterm are at increased risk of a range of developmental problems and disorders that may have an adverse impact on their health and well-being. Face-to-face follow-up appointments and a developmental assessment during the first 2 years (corrected ages) allow for early identification of problems and disorders and monitoring of progress. This means that appropriate support and intervention can be provided to improve a child's outcomes.

Quality measures

Structure

a) Evidence of local systems, such as the BadgerNet electronic record system, to record data on children born preterm and identify who needs enhanced developmental surveillance.

Data source: Local data collection, for example, service specifications.

b) Evidence of local systems to arrange 2 face-to-face follow-up appointments in the first year and an assessment at 2 years (corrected ages) that focus on development with children born preterm who are eligible for enhanced developmental surveillance.

Data source: Local data collection, for example, service protocols.

Process

a) Proportion of children born preterm who are eligible for enhanced developmental surveillance who have a follow-up appointment between 3 and 5 months (corrected age) that focuses on development.

Numerator – the number in the denominator who have a follow-up appointment between 3 and 5 months (corrected age) that focuses on development.

Denominator – the number of children born preterm who are eligible for enhanced developmental surveillance.

Data source: Local data collection, such as the Royal College of Paediatrics and Child Health personal child health record ('red book') or a patient record system, such as BadgerNet.

b) Proportion of children born preterm who are eligible for enhanced developmental surveillance who have a further follow-up appointment by 12 months (corrected age) that focuses on development.

Numerator – the number in the denominator who have a further follow-up appointment by 12 months (corrected age) that focuses on development.

Denominator – the number of children born preterm who are eligible for enhanced developmental surveillance.

Data source: Local data collection, such as the Royal College of Paediatrics and Child Health personal child health record ('red book') or a patient record system, such as BadgerNet.

c) Proportion of children born preterm who are eligible for enhanced developmental surveillance who have a face-to-face developmental assessment at 2 years (corrected age).

Numerator – the number in the denominator who have a face-to-face developmental assessment at 2 years (corrected age).

Denominator – the number of children born preterm who are eligible for enhanced developmental surveillance.

Data source: Local data collection, such as the Royal College of Paediatrics and Child Health personal child health record ('red book') or a patient record system, such as BadgerNet. The National Neonatal Audit Programme includes data on clinical follow-up at age 2 years for babies born before 30⁺⁰ weeks' gestation.

Outcome

a) Proportion of children born preterm who are eligible for enhanced developmental surveillance who have a face-to-face developmental assessment at 2 years (corrected age) with a developmental outcome category recorded.

Data source: Local data collection, such as the Royal College of Paediatrics and Child Health personal child health record ('red book') or a patient record system, such as BadgerNet. The National Neonatal Audit Programme includes data on neurodevelopmental outcomes recorded at clinical follow-up at age 2 years for babies born before 30 weeks' gestation.

b) Proportion of children born preterm with developmental problems and disorders identified at the appointments in the first 2 years (corrected ages) who have support provided.

Data source: Local data collection, such as the Royal College of Paediatrics and Child Health personal child health record ('red book') or a patient record system, such as BadgerNet.

What the quality statement means for different audiences

Service providers (neonatal services) ensure that systems are in place to identify children born preterm who are eligible for enhanced developmental surveillance and to arrange at least 2 face-to-face follow-up appointments in the first year and a face-to-face assessment at 2 years (corrected ages) that focus on development.

Healthcare professionals (neonatologists, paediatricians, occupational therapists, physiotherapists, and speech and language therapists) are either present at the 2 face-to-face follow-up appointments in the first year (corrected age), or are available through referral for children born preterm who are eligible for enhanced developmental surveillance. A neonatologist or paediatrician and at least 1 of occupational therapist, physiotherapist and speech and language therapist should be present at the assessment at 2 years (corrected age). At the appointments they discuss with parents or carers whether they have any concerns and check for developmental problems and disorders. At the 2-year (corrected age) assessment they use screening tools to check for developmental problems and disorders and also ensure that vision and hearing checks have been carried out. If there are any suspected problems, they investigate further or refer to the appropriate local pathway.

Commissioners (NHS England) ensure that they commission services that have the capacity and expertise to provide children born preterm who are eligible for enhanced developmental surveillance with the required follow-up appointments and assessments that focus on development. They undertake contract monitoring and seek evidence that service providers have this in place.

Children born preterm having extra support have at least 2 face-to-face follow-up appointments in their first year and an assessment at 2 years (corrected ages). These are with a doctor and another health professional, such as a physiotherapist, occupational therapist or speech and language therapist. The purpose is to check their development and see if they have any problems. Their parents or carers will have a chance to talk about any concerns. If there are any suspected problems, the healthcare professionals will investigate further or refer them to local services.

Source guidance

Developmental follow-up of children and young people born preterm. NICE guideline NG72 (2017), recommendations 1.3.6 and 1.3.11

Definitions of terms used in this quality statement

Children born preterm eligible for enhanced developmental surveillance

Children born before 37⁺⁰ weeks of pregnancy 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.

[NICE's guideline on developmental follow-up of children and young people born preterm, recommendation 1.3.1]

Enhanced developmental surveillance

Surveillance that includes active monitoring of a child's development, at set times and using specific tools, to detect developmental problems and disorders.

[NICE's guideline on developmental follow-up of children and young people born preterm]

Follow-up appointments in the first year and an assessment at 2 years that focus on development

Face-to-face follow-up assessments that should involve the following professionals:

neonatologist or paediatrician with an understanding of neonatal care and child development
at least 1 of occupational therapist, physiotherapist and speech and language therapist.

At each appointment professionals should:

discuss with parents or carers whether they have any concerns about their child's development
include checks for developmental problems and disorders
measure length or height, weight and head circumference
carefully evaluate and review any developmental concerns reported by parents or carers or noted during the appointment 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.

The assessment at 2 years (corrected age) should also include:

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), a suitable alternative assessment should be used
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.

[NICE's guideline on developmental follow-up of children and young people born preterm, recommendations 1.3.6, 1.3.7, 1.3.11 and 1.4.3]

Equality and diversity considerations

The assessments used at the 2-year review might not be suitable for people with poor English language comprehension. In these circumstances a suitable alternative assessment should be provided, depending on the needs of the child.