Quality statement 8: Review

Quality statement

Children and young people with epilepsy have a structured review with a paediatric epilepsy specialist at least annually.

Rationale

Reviews are important in ensuring that ongoing interventions are effective in meeting the needs of children and young people and to identify any changes in how their epilepsy is being controlled. They also ensure that epilepsy care plans remain relevant and up-to-date.

Quality measure

Structure: Evidence of local arrangements for children and young people with epilepsy to have a structured review with a paediatric epilepsy specialist at least annually.

Process: Proportion of children and young people with epilepsy whose most recent structured review with a paediatric epilepsy specialist was no later than 1 year (or individually agreed interval) after their previous review.

Numerator – the number of people in the denominator whose most recent structured review with a paediatric epilepsy specialist was no later than 1 year (or individually agreed interval) after their previous review.

Denominator – the number of children and young people with epilepsy.

Outcome:

a) Patient or parent/carer satisfaction with review content.

b) Patient or parent/carer satisfaction with the frequency of the review.

What the quality statement means for each audience

Service providers ensure systems are in place for children and young people with epilepsy to have a structured review with a paediatric epilepsy specialist at least annually.

Health and social care professionals ensure that children and young people with epilepsy have a structured review with a paediatric epilepsy specialist at least annually.

Commissioners ensure they commission services for children and young people with epilepsy to have a structured review with a paediatric epilepsy specialist at least annually.

Children and young people with epilepsy meet with a paediatric epilepsy specialist (a doctor who treats and cares for children and who has also had special training in diagnosing and treating epilepsy) at least once every year to talk about their treatment and any other problems they might be having with their epilepsy.

Source guidance

NICE clinical guideline 137 recommendations 1.20.3 and 1.20.5.

Data source

Structure: Local data collection.

Process: Local data collection.

Outcome: a) and b) Local data collection.

Definitions

A structured review should cover all aspects of the child's or young person's epilepsy care plan. The physical, psychological and social needs of children and young people with epilepsy should always be considered by healthcare professionals. Attention should be paid to their relationships with family and friends, and at school.

For children and young people, the maximum interval between reviews should be 1 year, but the frequency of reviews should be determined by the child's or young person's epilepsy, their wishes and the wishes of their family and/or carers. The interval between reviews should be agreed between the child or young person, their family and/or carers as appropriate, and the paediatric epilepsy specialist, but is likely to be between 3 and 12 months.

A paediatric epilepsy specialist in the management of the epilepsies is a paediatrician with training and expertise in epilepsy who has, for example, completed the specialist training module on epilepsy developed by the Royal College of Paediatrics and Child Health or worked for a minimum of 6 months in a tertiary centre for epilepsy in children and attended appropriate paediatric epilepsy training courses. The care of the specialist's patients with epilepsy should be part of an ongoing peer review process related to epilepsy care.