Patients' perspectives on services for epilepsy: a survey of patient satisfaction, preferences and information provision in 2394 people with epilepsy

The objectives of this study were to provide a comprehensive survey of sati sfaction with care, care preferences and information provision for patients with epilepsy, and to formulate recommendations for the development of epi lepsy services based on the findings. A questionnaire was distributed to 4620 patients who were currently receivi ng antiepileptic drugs for epilepsy, regardless of aetiology, duration or s everity. Two different samples of patients with epilepsy were questioned: t he first an unselected sample drawn from primary care, and the second consi sting of consecutive patients drawn from hospital clinics. There were 2394 responses to the questionnaire. Satisfaction with primary a nd hospital care was high, both overall and for specific aspects. However, two major shortcomings were identified. First, few respondents felt that th eir care was shared between hospital and GP. Secondly, provision of informa tion about epilepsy was perceived to be poor, particularly by the elderly. Younger patients and patients with severe Epilepsy had a higher satisfactio n with and preference for hospital care, whereas older age groups were more satisfied with and preferred primary care. Patients' main reasons for pref erring primary care were that it was more personal and the CP was more fami liar with them, and secondary care was preferred because the hospital docto r knew more about epilepsy. In conclusion, we have conducted the largest representative UK survey of pa tients' perceptions and views of the care available for epilepsy. Although patient satisfaction was high, information provision is poor and the shared care model is not operating effectively. We recommend that an emphasis be placed on methods for improving the interface between primary and secondary care. The setting up of hospital epilepsy centres, as recommended by the r ecently published Clinical Standards Advisory Group report on epilepsy(I), would provide a focus for these efforts and for information provision. (C) 2000 BEA Trading Ltd.