Abstracts

RATIONALE: Owing to the length of stay, the necessary confinement and lack of privacy, long term video EEG monitoring has the potential to be distressing and unpleasant. To date, the patients[scquote] experience of long term EEG monitoring has not been assessed. The aim of the current study was to carry out a survey to assess patients[scquote] experience of long term video monitoring.
METHODS: 80 consecutive patients who were admitted to a two-bedded epilepsy monitoring unit were administered a custom designed questionnaire to assess their experience of Video EEG monitoring. Patients with learning disability were excluded. The questionnaire consisted of 50 questions covering eight key areas identified by a pilot group of 8 patients. The areas were 1. Confidentiality/Privacy 2. Isolation 3. Information about monitoring 4. Anti-epileptic Drug (AED) changes 5. Personal hygiene 6. Sleep deprivation 7. Seizure Experiences (i.e. unexpected secondary generalisation, postictal experiences) 8. Restrictions on smoking.
RESULTS: The response rate was 66%. 72% found boredom and isolation to be the most difficult aspect of monitoring. Confidentiality was identified as a concern for 60% of patients. This was particularly the case where clinical interviews (i.e. psychiatric evaluation) were conducted while monitoring was in progress. 85% of females and 40% of males found the restriction on showering due to electrode placement to be unpleasant. All patients who witnessed a secondary generalised or tonic clonic seizure found this the most distressing aspect of undergoing monitoring. Eighty per cent viewed EEG monitoring as beneficial to the overall assessment and management of their epilepsy, while 20% considered that monitoring was a negative experience.
CONCLUSIONS: This questionnaire identifies key potential problems in this area, the attention to which could make epilepsy monitoring a better experience for patients.