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Epilepsies: diagnosis and management [CG137]

Measuring the use of this guidance

Recommendation: 1.3.1

Children, young people and adults with epilepsy and their families and/or carers should be given, and have access to sources of, information about (where appropriate): epilepsy in general diagnosis and treatment options medication and side effects seizure type(s), triggers and seizure control management and self-care risk management first aid, safety and injury prevention at home and at school or work psychological issues social security benefits and social services insurance issues education and healthcare at school employment and independent living for adults importance of disclosing epilepsy at work, if relevant (if further information or clarification is needed, voluntary organisations should be contacted) road safety and driving prognosis sudden death in epilepsy (SUDEP) status epilepticus lifestyle, leisure and social issues (including recreational drugs, alcohol, sexual activity and sleep deprivation) family planning and pregnancy voluntary organisations, such as support groups and charitable organisations, and how to contact them

What was measured: Proportion of children with epilepsy and their parents/carers who reported that they were provided with information on lifestyle including water safety
Data collection end: May 2014
70%
Number that met the criteria: 25 / 34
Area covered: Local
Source: Ghazavi MG (2015) Audit of information provided to parents of children with epilepsy. Archives of Disease in Childhood. var.pagings April


Recommendation: 1.3.11

Information on SUDEP should be included in literature on epilepsy to show why preventing seizures is important. Tailored information on the person's relative risk of SUDEP should be part of the counselling checklist for children, young people and adults with epilepsy and their families and/or carers

What was measured: Proportion of children with epilepsy and their parents/carers who reported that they were provided with information on sudden unexpected death in epilepsy (SUDEP)
Data collection end: May 2014
32%
Number that met the criteria: 11 / 34
Area covered: Local
Source: Ghazavi MG (2015) Audit of information provided to parents of children with epilepsy. Archives of Disease in Childhood. var.pagings April

What was measured: Proportion of children and young people who have been informed about risk of SUDEP.
Data collection end: January 2015
5%
Number that met the criteria: 1 / 19
Area covered: Local
Source: Shahin, A.M. (2015) Audit of epilepsy care in children with epilepsy attending special schools. Developmental Medicine and Child Neurology, Conference (var.pagings): January.


Recommendation: 1.7.1

Epileptic seizures and epilepsy syndromes in children, young people and adults should be classified using a multi-axial diagnostic scheme. The axes that should be considered are: description of seizure (ictal phenomenology); seizure type; syndrome and aetiology. [2004]

What was measured: Proportion of children and young people who have epilepsy syndrome classification.
Data collection end: January 2015
26%
Number that met the criteria: 5 / 19
Area covered: Local
Source: Shahin, A.M. (2015) Audit of epilepsy care in children with epilepsy attending special schools. Developmental Medicine and Child Neurology, Conference (var.pagings): January.

What was measured: Proportion of children and young people who have epilepsy seizure classification.
Data collection end: January 2015
100%
Number that met the criteria: 19 / 19
Area covered: Local
Source: Shahin, A.M. (2015) Audit of epilepsy care in children with epilepsy attending special schools. Developmental Medicine and Child Neurology, Conference (var.pagings): January.


Recommendation: 1.15.1.2

Information about contraception, conception, pregnancy, or menopause should be given to women and girls in advance of sexual activity, pregnancy or menopause, and the information should be tailored to their individual needs. This information should also be given, as needed, to people who are closely involved with women and girls with epilepsy. These may include her family and/or carers. [2004]

What was measured: Proportion of women with epilepsy who died during or after pregnancy who received pre-conception counselling.
Data collection end: December 2012
14%
Number that met the criteria: 2 / 14
Area covered: UK
Source: Saving Lives, Improving Mothers’ Care Lessons learned to inform future maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2009-2012


Recommendation: 1.15.11

In order to enable informed decisions and choice, and to reduce misunderstandings, women and girls with epilepsy and their partners, as appropriate, must be given accurate information and counselling about contraception, conception, pregnancy, caring for children and breastfeeding, and menopause.

What was measured: Proportion of women aged 18 or over and who have not attained the age of 55 who are taking antiepileptic drugs who have a record of information and counselling about contraception, conception and pregnancy in the preceding 12 months.
Data collection end: March 2018
1.3%
Number that met the criteria: 981 / 75007
Area covered: England
Source: Indicators no longer in QOF (INLIQ)



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