Abstracts

Rationale: Providing information is an important aspect of healthcare provision. This is particularly so in chronic disease. Individuals with epilepsy and their carers should be given or have access to information in a number of areas related to diagnosis, treatment and lifestyle. The giving of this information is typically documented in patients’ medical records, and this information giving can be audited. However this does not give an indication of the patients’ perception or satisfaction with this information giving process. The purpose of this study was to evaluate patient satisfaction with epilepsy information and its source in a specialist tertiary care setting in the UK. Methods: Patients with a definite diagnosis of epilepsy who attended a tertiary epilepsy clinic during 2007 were identified from an internal clinical database. A structured questionnaire for anonymous return was sent to a total of 573 patients. The level of satisfaction with information given was assessed for the following domains: general information regarding epilepsy; advice on medication, its benefits and side effects; driving; factors that might trigger seizures, social services and benefits; lifestyle; and pregnancy. Patients were asked to indicate their level of satisfaction, using a forced choice scale, with information they had been given. They were also asked to indicate the source(s) they found most useful from one or more of: the epilepsy consultant, specialist nurse, general practitioner, information leaflet, internet or other. Patients were asked to give their age, age at seizure onset, number of years attending the epilepsy unit, and their epilepsy diagnosis if known. Results: Two hundred and four (36%) questionnaires were returned, f107, m82. The average age was 43 (range 16 - 81). Patients had been under hospital follow up for a median of 9 years (range 0-50). The percentage of patients who indicated they were very satisfied or satisfied (S), unsure (U) and dissatisfied or very dissatisfied (D) with the information they had been given for each domain were as follows. General: S 80% U 14% D 6%; Medication administration: S 84% U 7% D6%; Medication side effects: S 58% U 22% D 16%; Seizure triggers S 59% U 24% D 5%; Driving: S 68% U 11% D 7%; Social services and benefits: S 11% U 25% D 40%; Lifestyle: S 55% U 25% D 15%; Pregnancy (where applicable) S 52% U 13% D 12%. Table 1 shows the perceived best source of information for each domain for those who indicated a preference. Conclusions: The majority of patients who returned their questionnaires were satisfied with the level of information they had been given regarding their epilepsy. A notable exception was satisfaction with information given regarding social care and benefits. Specialist healthcare professionals were deemed the best source of information in the domains tested aside from social care and benefits, although this study could not account for non-responder bias. A comprehensive epilepsy service needs to consider the information needs of its patient groups and how this is best assessed and delivered, both in the specialist centre and in the community.