Quality statement 1: Follow-up for children with major risk factors for cerebral palsy

Quality statement

Children with any major risk factor for cerebral palsy have enhanced clinical and developmental follow-up from birth to 2 years.

Rationale

The signs of cerebral palsy might not be apparent at birth. Following up children with any major risk factor for cerebral palsy for the first 2 years of life will help to identify and diagnose cerebral palsy as early as possible. Early diagnosis can guide interventions, inform prognosis and let family members know what to expect.

Quality measures

Structure

Evidence of local arrangements to provide enhanced clinical and developmental follow-up from birth to 2 years for children with any major risk factor for cerebral palsy.

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

Process

a) Proportion of children with any major risk factor for cerebral palsy attending a routine appointment up to 3 months of age who had movement and development checked.

Numerator – the number in the denominator who had movement and development checked.

Denominator – the number of children with any major risk factor for cerebral palsy attending a routine appointment up to 3 months of age.

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

b) Proportion of children with any major risk factor for cerebral palsy and older than 3 months who have a planned schedule of developmental follow-ups.

Numerator – the number in the denominator who have a planned schedule of developmental follow-ups.

Denominator – the number of children with any major risk factor for cerebral palsy and older than 3 months.

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

Outcome

Number of children and young people with cerebral palsy who were diagnosed by age 2 years.

Data source: Local data collection.

What the quality statement means for different audiences

Service providers (such as secondary care services) work together to ensure the provision of enhanced clinical and developmental follow‑up for children from birth to 2 years (corrected for gestational age) who have any major risk factor for cerebral palsy.

Healthcare professionals (such as midwives and neonatologists) identify major risk factors for cerebral palsy and refer children who have a risk factor for cerebral palsy for enhanced clinical and developmental follow‑up from birth to 2 years (corrected for gestational age).

Commissioners (such as clinical commissioning groups) ensure that they commission services that support children with any major risk factor for cerebral palsy by providing enhanced clinical and developmental follow-up from birth to 2 years.

Babies who have problems that might cause cerebral palsy have their movement and development closely checked until they are 2 years old, because cerebral palsy is not always obvious at birth. Some common causes of cerebral palsy are problems in the way the baby's brain develops before birth, an infection in the baby before or shortly after birth, or a difficult or early (preterm) birth.

Source guidance

Cerebral palsy in under 25s: assessment and management (2017) NICE guideline NG62, recommendations 1.1.2 and 1.3.1

Definitions of terms used in this quality statement

Major risk factors for developing cerebral palsy

The following are major risk factors for developing cerebral palsy:

  • birth before 28 weeks

  • neonatal encephalopathy

  • neonatal sepsis (particularly with a birth weight below 1.5 kg).

[NICE's guideline on cerebral palsy in under 25s, recommendation 1.1.1 and expert consensus]

Enhanced clinical and developmental follow-up

Enhanced clinical and developmental follow-up ensures that a child has their movement and development closely checked. This should happen at their routine appointments up to age 3 months. They should then have extra follow‑up appointments to check for problems until they are 2 years old. However, these should be tailored to the needs of the child or young person. Follow-up should be provided by an expert who can draw on the following expertise from a multidisciplinary team:

  • paediatric medicine

  • nursing care

  • physiotherapy

  • occupational therapy

  • speech and language therapy

  • dietetics

  • psychology.

[Adapted from NICE's guideline on cerebral palsy in under 25s, recommendation 1.5.3 and expert opinion]