Patient views on primary care services for epilepsy and areas where additional professional knowledge would be welcome

Abstract

In the past decade there has been increasing interest in the part that general practice can play in the care of people with epilepsy. Primary care services for epilepsy vary from practice to practice. Some studies have suggested that people with epilepsy prefer secondary care services and are not keen for their epilepsy to be managed in general practice, but much of the data were collected in secondary care. This study collected data from various sources about present provision of services, patient satisfaction with services, views about service development, areas where GP knowledge may be improved and whether the site of data collection influenced the results. A questionnaire was piloted, then distributed and collected through branches of the British Epilepsy Association, general practice and secondary care clinics. Data collected were both quantitative and qualitative. One hundred and seventy-eight questionnaires were collected from three sources. The responders were a severe seizure group. Structured care in general practice was uncommon with 54% being seen only when needed. Dose and type of antiepileptic medication was rarely altered in general practice. Information about their condition was given to 44% of the responders by their GP. Sixty-one percent would prefer their epilepsy care to be 'shared' between primary and secondary services. The majority of patients were satisfied with GP services, felt they could easily discuss their epilepsy, but 58% felt they 'rarely' or 'never' received enough information about their condition in general practice. Satisfaction with GP care varied, dependent on where the data were collected. Patients would value more information and more time to discuss the effects of their epilepsy. In conclusion general practice care for epilepsy is still reactive. Patients value more information and more time to discuss implications. The data collection point affects the results; any conclusions about the organisation of epilepsy care should draw data from community patient samples.

Characteristics of patients with epilepsy who use a website providing healthcare information about epilepsy in South Korea

“…We enrolled only epilepsy patients who volunteered to complete the survey on the 'Epilia' website and who attended epilepsy clinics at tertiary centers. One previous study cautioned that any conclusions about the organization of epilepsy care should draw data from a community patient sample [53]. However, our results seem to be in line with those of previous studies of patients with similar socio-demographic characteristics.…”

Pacientes com epilepsia: satisfação com os serviços de atenção à saúde?

“…Os PCE estão satisfeitos com atendimento como demonstrado na Tabela 1. 1,3,4,14,15,18,19,24,32,41 Essa afirmação torna-se discutível quando confrontadas às avaliações negativas a certas perguntas específicas desenvolvidas nos mesmos estudos. Existe uma grande insatisfação dos PCE com as informações recebidas pelos médicos, na maioria dos estudos os pacientes desejavam explicações sobre a causa da doença, fatores desencadeantes, tratamento, licença para dirigir e trabalho.…”

“…Dez artigos quantificaram as crises epilépticas. 1,3,4,8,10,13,14,24,26,38 Por questões metodoló-gicas, não é possível comparar a freqüência das crises entre os estudos. Cabe ressaltar que na maioria dos estudos, o grupo mais representativo de PCE apresentava uma ou mais crises por ano.…”

“…Os PCE consideram que seu tratamento poderia ser mais eficaz em clínicas especializadas em epilepsia, 1,6,8,41 compartilhado no setor primário e hospitalar, 2,4,32 e em outros artigos verifica-se uma preferência pelo atendimento pelos médicos generalistas. 27,38 As principais razões pela escolha do atendimento no setor primário: tratamento personalizado e mais familiar.…”

Early pathological changes in the parkinsonian brain

“…While people with controlled epilepsy may be cared for in primary care, it has been found that primary care services vary from practice to practice, and care is often reactive rather than proactive. 24 The new GP contract includes additional income for standards reached in epilepsy, and this may help to improve care.…”