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

Poole, Kingsley and Moran, Nicholas and Bell, Gail and Solomon, Juliet and Kendall, Sally and McCarthy, Mark I and McCormick, David C. and Nashef, Lina and Johnson, Anthony and Sander, Josemir and Shorvon, Simon (2000) Patients' perspectives on services for epilepsy: a survey of patient satisfaction, preferences and information provision in 2394 people with epilepsy. Seizure-European Journal of Epilepsy, 9 (8). pp. 551-558. ISSN 1059-1311. (The full text of this publication is not currently available from this repository. You may be able to access a copy if URLs are provided)

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The objectives of this study were to provide a comprehensive survey of satisfaction with care, care preferences and information provision for patients with epilepsy, and to formulate recommendations for the development of epilepsy services based on the findings. A questionnaire was distributed to 4620 patients who were currently receiving antiepileptic drugs for epilepsy, regardless of aetiology, duration or severity. Two different samples of patients with epilepsy were questioned: the first an unselected sample drawn from primary care, and the second consisting of consecutive patients drawn from hospital clinics. There were 2394 responses to the questionnaire. Satisfaction with primary and hospital care was high, both overall and for specific aspects. However, two major shortcomings were identified. First, few respondents felt that their care was shared between hospital and GP. Secondly, provision of information about epilepsy was perceived to be poor, particularly by the elderly. Younger patients and patients with severe Epilepsy had a higher satisfaction with and preference for hospital care, whereas older age groups were more satisfied with and preferred primary care. Patients' main reasons for preferring primary care were that it was more personal and the CP was more familiar with them, and secondary care was preferred because the hospital doctor knew more about epilepsy. In conclusion, we have conducted the largest representative UK survey of patients' 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 recently 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.

Item Type: Article
Uncontrolled keywords: epilepsy; health care quality, access, and evaluation; health services research; patient satisfaction; questionnaire; health services needs and demand; primary care; secondary care; UK
Subjects: R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
Divisions: Faculties > Social Sciences > School of Social Policy Sociology and Social Research
Depositing User: A. Xie
Date Deposited: 06 Aug 2009 14:13
Last Modified: 30 May 2014 14:03
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