08-05-2015 | Study finds high levels of satisfaction with hospital and primary care for epilepsy

08 May 2015
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A new study by the Department of Nursing at Waterford Institute of Technology reporting the views of people with epilepsy with regards to health service delivery in Ireland has been published in the online version of the journal Epilepsy Research.

The study, involving 102 adults with epilepsy attending an epilepsy specialist centre, found high levels of satisfaction with hospital and primary care, but offered several suggestions to improve healthcare delivery.

  • 95% of participants were overall satisfied with hospital care and 91% with primary care.
  • 93% said they found it easy to talk to their hospital doctor and 91& to their GP
  • 55% were satisfied in relation to continuity of care (seeing the same doctor on different visits).
  • Hospital doctors were regarded as the preferred source of care by 76% of respondents
  • 82% have regular appointments with their hospital doctor and 59% have seen a specialist nurse. However, very few people had seen a Counsellor social worker or psychologist as part of their epilepsy care.

Participants were asked to suggest ways to improve epilepsy healthcare provision. Suggestions included a reduction in delays in accessing specialist care and hospital appointments; improved communication skills by service providers; greater societal awareness of epilepsy; improved access to investigations; better continuity of care at and between clinic and hospital appointments; better information provision and access to free transport and disability allowances.

The study also identified the need for improved information provision. For example, more than 25% of patients were not aware of key issues such as what kind of epilepsy they had; medication side effects, the existence of voluntary groups like Epilepsy Ireland and how to access social services/ allowances. There were particular deficits in relation to epilepsy in women, with less than half of the women being informed about contraception and pregnancy.

The authors state that "Chronic disease management strategies recommend that patients be empowered to self-manage their health care, however, participants in this study appear largely to play a passive role... This indicates a need for a more collaborative approach between people with epilepsy and service providers so that shared expectations can be established and decisions jointly made in striving to achieve realistic and desired outcomes."

Data for the study was gathered in 2013. Since then, Epilepsy Ireland has introduced new services such as the Living Well With Epilepsy Programme and the STEPS programme to tackle these issues and improve self-management of epilepsy.

The study concludes that "This study highlights improvement in epilepsy care insofar as the majority of participants indicated a high satisfaction with both primary and secondary care. This study has provided a basis for an evaluation of current practice and offer indicators to epilepsy services on how epilepsy care can be further improved. It highlights the need to fully understand the social, psychological, structural and educational difficulties of people with epilepsy and to ensure that these issues are taken into account in any plans for service transformation".

Reference: Epilepsy services in Ireland: 'A survey of people with epilepsy in relation to satisfaction, preferences and information provision. http://dx.doi.org/10.1016/j.eplepsyres.2015.03.006


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