Abstracts

Rationale: There is evidence that people with chronic epilepsy lack knowledge in key areas, and desire more information about epilepsy. Little, however, is known about peoples’ knowledge and information needs at diagnosis. There are no studies on the extent to which self-management practices are adopted following new diagnosis. We aimed to; 1) Measure the general knowledge that people have about epilepsy at time of diagnosis, and on retest six months later; 2) Measure the extent to which self-management behaviours are adopted at six-months. Methods: A descriptive, exploratory study was used to collect data from people with a new diagnosis of epilepsy (PNDE) at a First Seizure clinic. Fifty PNDE aged 16 – 86 were recruited immediately following diagnosis. They completed the 55-item Epilepsy Knowledge Profile – General (EKP-G) questionnaire (Jarvie, S., et al., Seizure 1993; 2: 179-185) which contained 34 medical and 21 social questions. A second questionnaire containing the EKP-G and the 38-item Epilepsy Self-Management scale (DiIorio, C. & Henry, M., J Neurosci Nurs 1995:27(6): 338-343) was mailed six-months later. The EKP-G was scored using a true/false/unsure format (unsure responses scored as incorrect), the ESMS on a scale of one (never) to five (always).Results: Thirty-seven (74%) PNDE returned the six-month questionnaire. The majority were females (70%), median age of 33 (range 18 – 86). They were well educated, 54% having completed higher education. Almost half were fully employed. Most (92%) had two or more seizures prior to diagnosis, 54% primarily generalised and 30 % secondarily. Seventy percent were prescribed anti-epileptic medications (AEMs). At diagnosis EKP-G scores varied widely (median 31, range 48), by six-months the median EKP-G score had improved to 34 (p < 0.023), with a reduction in the range to 33. Participants consistently scored more highly on medical than social knowledge items. At diagnosis about 2/3 of participants didn’t understand that AEMs need to be taken regularly to be effective, and that they should be continued, even if seizures stop (33%). ESMS scores were divided into quartile ranges 98-129 (n=9), 130 – 135 (n=8), 136 - 144 (n=8) and 146 – 152 (n=8), the highest quartile reflecting self-management strategies practised ‘most of the time’. ESM items with the highest mean score include; two items on medication adherence (4.84, SD .62) and the use of power tools with automatic shutoff (4.84, SD 1.06). Items with the lowest mean include; participation in a support group (1.33, SD 1.02) and seizure first aid practice with family and friends (1.54, SD1.02). There was no association (Pearson r = .126) between knowledge and self-management scores at six-months Conclusions: A well-educated, mainly female, group of PNDE were found to have knowledge deficits after diagnosis at a FSC. Six-months later their knowledge levels had improved, but this was not associated with higher self-management scores. These findings will guide the development of an educational intervention to improve information giving at time of diagnosis.