Epilepsy Guidelines Working group

The ‘Guidelines for the diagnosis and treatment of epilepsy’ of the Epilepsy Guidelines Working Group (please see the revised version, January 2006, 40-41) with representatives of the Dutch Society of Neurology, the Dutch League against Epilepsy and the National Epilepsy Fund examine when referral to a specialised epilepsy centre is required.

Kempenhaeghe supports the provisions of the guidelines:

“If there is doubt about the diagnosis epilepsy referral for additional diagnosis shall be taken into consideration.
If there are additional problems such as psychiatric disorders, learning disabilities and behavioural or social problems, referral to a tertiary facility should be considered.
When there is a high chance of psycho-social problems arising, early referral to psycho-social counselling can be advisable.
If the additional problem consists of a mental disability it is an option to request long-term admission through the Central Indication Care Body (CIZ) or through an epilepsy centre. The epilepsy treatment is then combined with the residential function.
When a patient is not free of seizures within two years or when three anticonvulsives have failed, referral to a tertiary facility should be considered.”

The guidelines further state:

“For 20-30% of the patients the epilepsy is difficult to control [Class III (153)]. With all these patients it is the question whether the diagnosis epilepsy was correct, whether the classification of the seizures or the epilepsy syndrome was correct, whether the patient was treated optimally with medication and whether he/she is eligible for epilepsy surgery [Class III (213, 215, 333)]. About 5% of the pharmacoresistent patients are eligible for epilepsy surgery. For a part of the patients referred for epilepsy surgery however is after evaluation found that they can be treated with medication [Class III (334)].

Epilepsy is strongly associated with other cerebral disorders. Epilepsy as a chronic disorder is found with 9-32% of the mentally handicapped, with about 30% of the children with infantile encephalophathy, in 50% of the children with both conditions and with 11-25% of the children with an autistic disorder (Class II, 335, 336)]. The children with multiple handicaps are also the most therapy-resistant group. These groups benefit from a multidisciplinary treatment of the epilepsy and the epilepsy-related problems. Sometimes longer admission is required.”

Finally, the guidelines state the following on the subject of referral to a specialised epilepsy centre:

“With referral to a tertiary facility the nature of the referral has to be clearly discussed: for instance consultative, diagnostics, inventory of problems or taking over the treatment.
Of course it is possible to refer patients for a specific care need such as a video/EEG seizure registration or a combined neuropsychological EEG examination.
The patient may of course also indicate that he/she wants to be referred.”

With respect tot he last item Kempenhaeghe has found that in everyday practice more and more patients (or their parents or family members) at their own initiative find their way to the specialised epilepsy care. These are often people who recently have received the (possible) diagnosis epilepsy. Kempenhaeghe supports these patients and is devoted to helping the patients with their problems. In principle Kempenhaeghe refers back the patients for who after the diagnostic phase has been found that care providers in the first or second facility can start or take over the treatment and counselling. It is a matter of fact that this is done in consultation with the patient.