Patients' perspectives on services for epilepsy: a survey of patient satisfaction, preferences and information provision in 2394 people with epilepsy
Author
Poole, K
Moran, N
Bell, G
Solomon, J
Kendall, S.
McCarthy, M
McCormick, D
Nashef, L
Johnson, A
Sander, J
Shorvon, S
Attention
2299/7456
Abstract
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 GP 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, would provide a focus for these efforts and for information provision.
Publication date
2000Published in
SeizurePublished version
https://doi.org/10.1053/seiz.2000.0450Other links
http://hdl.handle.net/2299/7456Metadata
Show full item recordRelated items
Showing items related by title, author, creator and subject.
-
Participatory co-design and normalisation process theory with staff and patients to implement digital ways of working into routine care : the example of electronic patient-reported outcomes in UK renal services
Knowles, Sarah; Ercia, A; Caskey, F; Rees, M; Farrington, K; Van der Veer, S N (2021-07-18)BACKGROUND: Successful implementation of digital health systems requires contextually sensitive solutions. Working directly with system users and drawing on implementation science frameworks are both recommended. We sought ... -
Predicted estimates of resting energy expenditure have limited clinical utility in patients with cirrhosis: an individual patient data analysis
Limon-Miro, Ana Teresa; Jackson, Clive Douglas; Eslamparast, Tannaz; Yamanaka-Okumura, Hisami; Plank, Lindsay Dudley; Henry, Christiani Jeyakumar; Madden, Angela; Ferreira, Livia Garcia; Kalaitzakis, Evangelos; Prieto de Frías, César; Knudsen, Anne Wilkens; Gramlich, Leah; Raman, Maitreyi; Alberda, Cathy; Belland, Dawn; Den Heyer, Vanessa; Tandon, Puneeta; Morgan, Marsha Yvonne (2022-01-26)Background & Aim: Malnutrition is associated with adverse clinical outcomes in patients with cirrhosis. Accurate assessment of energy requirements is needed to optimize dietary intake. Resting energy expenditure (REE), the ... -
The Expert Patients Programme: a paradox of patient empowerment and medical dominance
Wilson, P.M.; Kendall, S.; Brooks, F. (2007)Self-care is seen as a key element in managing resource demand in chronic disease and is also perceived as an empowering right for patients. The Chronic Disease Self-Management Programme developed in the USA has been adopted ...