Determining the role and responsibilities of the community epilepsy nurse in the management of epilepsy.

AIMS AND OBJECTIVES: The aim of this study is to enhance the understanding of the core elements and influencing factors on the community-based epilepsy nurse's role and responsibilities. BACKGROUND: Internationally, epilepsy nurse specialists play a key role in providing person-centred care and management of epilepsy but there is a gap in understanding of their role in the community. DESIGN: A national three-stage, mixed-method study was conducted. METHODS: One-on-one, in-depth semi-structured qualitative interviews were conducted online with 12 community-based epilepsy nurses (Stage 1); retrospective analysis of data collected from the National Epilepsy Line, a nurse-led community helpline (Stage 2); and focus group conducted with four epilepsy nurses, to delve further into emerging findings (Stage 3). A thematic analysis was conducted in Stages 1 and 3, and a descriptive statistical analysis of Stage 2 data. Consolidated Criteria for Reporting Qualitative studies checklist was followed for reporting. RESULTS: Three key themes emerged: (1) The epilepsy nurse career trajectory highlighted a lack of standardised qualifications, competencies, and career opportunities. (2) The key components of the epilepsy nurse role explored role diversity, responsibilities, and models of practice in the management of living with epilepsy, and experiences navigating complex fragmented systems and practices. (3) Shifting work practices detailed the adapting work practices, impacted by changing service demands, including COVID-19 pandemic experiences, role boundaries, funding, and resource availability. CONCLUSION: Community epilepsy nurses play a pivotal role in providing holistic, person-centred epilepsy management They contribute to identifying and addressing service gaps through innovating and implementing change in service design and delivery. RELEVANCE TO CLINICAL PRACTICE: Epilepsy nurses' person-centred approach to epilepsy management is influenced by the limited investment in epilepsy-specific integrated care initiatives, and their perceived value is impacted by the lack of national standardisation of their role and scope of practice. NO PATIENT OR PUBLIC CONTRIBUTION: Only epilepsy nurses' perspectives were sought.

Determining the role and responsibilities of the Australian epilepsy nurse in the management of epilepsy: a study protocol.

INTRODUCTION: Epilepsy is a common neurological condition affecting between 3% and 3.5% of the Australian population at some point in their lifetime. The effective management of chronic and complex conditions such as epilepsy requires person-centred and coordinated care across sectors, from primary to tertiary healthcare. Internationally, epilepsy nurse specialists are frequently identified as playing a vital role in improving the integration of epilepsy care and enhancing patient self-management. This workforce has not been the focus of research in Australia to date. METHODS AND ANALYSIS: This multistage mixed-method study examines the role and responsibilities of epilepsy nurses, particularly in primary and community care settings, across Australia, including through the provision of a nurse helpline service. A nationwide sample of 30 epilepsy nurses will be purposively recruited via advertisements distributed by epilepsy organisations and through word-of-mouth snowball sampling. Two stages (1 and 3) consist of a demographic questionnaire and semistructured interviews (individual or group) with epilepsy nurse participants, with the thematic data analysis from this work informing the areas for focus in stage 3. Stage 2 comprises of a retrospective descriptive analysis of phone call data from Epilepsy Action Australia's National Epilepsy Line service to identify types of users, their needs and reasons for using the service, and to characterise the range of activities undertaken by the nurse call takers. ETHICS AND DISSEMINATION: Ethics approval for this study was granted by Macquarie University (HREC: 52020668117612). Findings of the study will be published through peer-reviewed journal articles and summary reports to key stakeholders, and disseminated through public forums and academic conference presentations. Study findings will also be communicated to people living with epilepsy and families.

Telemedicine in epilepsy: How can we improve care, teaching, and awareness?

Telemedicine (TM) is the use of telecommunications' technologies to provide medical information and services. Telehealth (TH) permits broader and psychosocial support for patients and their families. We aimed to highlight the importance of the use of TH for all aspects of epilepsy, either for the scientific aspects (e.g., research, education, care, management, etc.) or for the social matters (e.g., education, sensitization, association support, etc.). There is a deep gap in knowledge and use of TH in the developing and developed countries. Epilepsy is a condition responsible for 1% of the global burden of disease. More than 50 million people have epilepsy, and barriers to care include shortage of human resources, medical facilities, and resources. Eighty (80) percent of people with epilepsy (PWE) live in low- and middle-income countries. Telehealth has the potential of addressing limited resources and improving access to PWE across the globe.

Reported service needs at diagnosis of epilepsy and implications for quality of life.

AIM: This paper reports on contributing factors to Quality of Life (QoL) in an Australian community sample of people with epilepsy (PWE). METHOD: Three hundred and ninety-three respondents or 29.6% of people on the Australian Epilepsy Research Register participated in Wave 4 of a longitudinal survey. A quantitative analysis was undertaken and a qualitative investigation examined open-ended responses by 44 PWE on the support services that they received following diagnosis of epilepsy. RESULTS: Total Quality of Life in Epilepsy-31 Items (QOLIE-31) score for the community-based sample was 55.99 (SD 19.85) [Range 6.34-96.20]. Age, paid employment, seizure frequency, number of antiepileptic drugs (AEDs), and perceived prosperity had significant impacts on QoL. In addition, use of support services showed that availability of a first seizure clinic, accurate information on support services and peer support were associated with the highest QoL. A qualitative investigation revealed that on first diagnosis, a lack of information was the main theme. Furthermore, PWE reported a lack of understanding of available supports by a range of health professionals, schools, and in the general community. DISCUSSION: Psychosocial factors were important in explaining QoL, and the positive effects of first seizure clinics, accurate information on support services, and of peer support have been confirmed in the literature. The lack of knowledge of support services on being diagnosed with epilepsy is a problem evident in the community and pathways are required to support people dealing with their epilepsy. CONCLUSION: More emphasis is needed in providing availability of supports to enhance the future wellbeing and QoL of people when epilepsy is diagnosed.

Older people and knowledge of epilepsy: GPs can help.

BACKGROUND: Epilepsy is a common neurological disease with a high prevalence in people aged 65 years or older. Therefore, an understanding of the disease is important. The objective of this article was to determine older people's knowledge of epilepsy. METHODS: Electronic or paper-based surveys were completed by people aged 65 years and older. RESULTS: Five hundred and seventy-two surveys were completed, including 100 from people with epilepsy. Those with epilepsy had relatively poor knowledge of their condition, but they answered some questions significantly more correctly than participants without epilepsy. The main predictor of knowledge was clear information from a health professional. Two-thirds of those with epilepsy had their condition managed by a general practitioner. DISCUSSION: Older people with epilepsy need more information on their condition to facilitate better care management.

Management of post-traumatic epilepsy: An evidence review over the last 5 years and future directions.

Post-traumatic epilepsy (PTE) is a relatively underappreciated condition that can develop as a secondary consequence following traumatic brain injury (TBI). The aim of this rapid evidence review is to provide a synthesis of existing evidence on the effectiveness of treatment interventions for the prevention of PTE in people who have suffered a moderate/severe TBI to increase awareness and understanding among consumers. Electronic medical databases (n = 5) and gray literature published between January 2010 and April 2015 were searched for studies on the management of PTE. Twenty-two eligible studies were identified that met the inclusion criteria. No evidence was found for the effectiveness of any pharmacological treatments in the prevention or treatment of symptomatic seizures in adults with PTE. However, limited high-level evidence for the effectiveness of the antiepileptic drug levetiracetam was identified for PTE in children. Low-level evidence was identified for nonpharmacological interventions in significantly reducing seizures in patients with PTE, but only in a minority of cases, requiring further high-level studies to confirm the results. This review provides an opportunity for researchers and health service professionals to better understand the underlying pathophysiology of PTE to develop novel, more effective therapeutic targets and to improve the quality of life of people with this condition.