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Aim This paper investigated the bases of needs for a range of epilepsy aids and equipment and expressed concerns about the use of such devices. Method There was a 29.6% response rate (n = 393 of 1328) to Wave 4 of the Australian Epilepsy Longitudinal Study (AELS). The focus of Wave 4 was on the expressed needs and affordability of aids and equipment for people with epilepsy (PWE) and quality of life (QoL). Quantitative analysis was used to examine the association between self-reported need for aids and equipment, sociodemographic information, and QoL. Open-ended responses were subject to qualitative analysis. Results Approximately one-fifth of the sample felt that they needed specific aids, including emergency ID bracelets, seizure alarms, and seizure monitors. Those respondents who felt that they needed aids had more frequent seizures, had been recently injured by a seizure, and were less prosperous. The QoL of those in need of equipment was lower than that of those who felt that they did not need it. Qualitative analysis revealed a need for more information about the aids available, issues associated with affordability, and some concern about the utility of these aids for those who lived alone. Discussion Much research to date has focussed on the development and validation of devices for PWE and standards for testing. Fewer studies deal with the needs and experiences of PWE with regard to the use of such equipment. The development of these devices needs to ensure patient comfort and acceptability. In addition, there is a need to canvas the views of family, caregivers, and primary care providers on the usability of epilepsy aids and equipment. Conclusion Further person-centered research is needed in assessing the need for and usability of aids and equipment for the management of epilepsy.

This study aimed to explore the quality of life (QoL) of adult patients with epilepsy (PwE) in Australia and its relationship with comorbidities and adverse events (AEs) from antiepileptic drugs (AEDs).Cross-sectional surveys were completed by PwE, or carer proxies, recruited via the online pharmacy application MedAdvisor and Australian PwE Facebook groups from May to August 2018. Data were collected on demographics, epilepsy severity and management, AEs, comorbidities, and QoL (using the Patient-Weighted Quality of Life in Epilepsy Inventory [QOLIE-10-P] total score). Two linear regression models were constructed to explore associations between AEs or comorbidities and QOLIE-10-P score, with possible confounders determined using stepwise selection.Nine hundred and seventy-eight of 1267 responses were eligible (mean age of respondents: 44.5 years, 64% female, 52% employed). Recent AED use was reported by 97%; 47% were on AED monotherapy, 35% had ≤2 lifetime AEDs, and 55% were seizure-free for1 year. After stepwise selection, control variables included in both models were time since diagnosis, employment status, seizure frequency, number of currently prescribed AEDs, and number of general practitioner (GP) visits per year. In the model for comorbidities, "psychiatric disorders" was associated with the largest QOLIE-10-P score decrease (-23.14, p 0.001). In the model for AEs, which additionally controlled for depression and anxiety disorder, self-reported "memory problems" was associated with the largest decrease in QOLIE-10-P score (-14.27, p 0.001).In this survey of Australian PwE, many of whom had relatively well-controlled epilepsy, psychiatric and self-reported memory problems were common and associated with the greatest detrimental impact on QoL. Further research is needed to better understand the underlying causes of impaired QoL and thereby improve its management.

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.

Aim This paper investigates the reasons and extent of hospital emergency department (ED) attendance by people with epilepsy in Wave 4 of The Australian Longitudinal Survey 2016–17. Method Wave 4 had 393 respondents who completed the survey, which included questions relating to their use of hospital and healthcare services. Of these, 121 (31%; 82 females) reported one or more admissions to the ED within the previous 12 months. We conducted a mixed methods analysis — using quantitative measures to explore the type and number of admissions, factors relating to increased admissions, and a qualitative approach to explore respondent experiences of their admissions. Results Over half of the admissions reported were seizure-related, including injuries occurring as a result of seizures. More than 15% of respondents had more than four ED visits during the preceding 12 months of the survey. Those who had experienced seizures within the previous 12 months, irrespective of frequency, were more likely to have attended the ED compared with those who had not experienced a recent seizure. Self-reported income was another major factor in ED use. Experiences of hospitalization demonstrated frustration at being taken to the ED, loss of autonomy, and experiences of inappropriate care due to poor understanding of epilepsy. Some respondents did not want to waste the ED time as they felt that a rest was all they needed following a seizure. Discussion The rates of hospitalization for seizure-related reasons are in line with the findings of other epilepsy-related studies, as is the increased hospitalization rate of those from less well-off backgrounds. This study provided a valuable picture of the opinions and attitudes of people with epilepsy towards their healthcare services. Conclusion While this is an analysis of a small cohort, the consistency of reported experiences suggests that ED is not always felt to be appropriate following a seizure, and misunderstanding around the appropriate treatment of epilepsy continues in healthcare services.

Aim The aim of the current study was to examine self-report data on perceptions of unfair treatment due to epilepsy. Method We analyzed data from the 2010 Australian Epilepsy Longitudinal Survey, distributed to 621 registrants on the Australian Epilepsy Research Register. A total of 343 responses were received (55% response rate), providing insight into experiences of life with epilepsy in Australia. Responses relating to perceptions of unfair treatment in areas of employment, education and community participation as a result of epilepsy are reported in this article. Results Forty-eight percent of respondents reported perceptions of unfair treatment as a result of their epilepsy, with most providing details of their experiences. Discrimination in the workplace remains of key concern, with 47% citing examples of unfair treatment in this setting. Conclusions In spite of Australian anti-discrimination laws, findings indicate that full-time employment rates for people with epilepsy are lower than previously reported, with further mechanisms for support required to improve education and reduce experiences of stigma.

Aim To examine self-report data on seizure-related injuries and hospitalizations. Method We analyzed data from the 2010 Australian Epilepsy Longitudinal Survey, distributed to registrants on the Australian Epilepsy Research Register. 343 responses were received (55% response rate), providing insight into experiences of living with seizures. This article examines self-report data on injuries related to seizures and hospitalizations. Results 64% of those reporting injuries required hospital treatment. Respondents with seizure-related injuries had significantly earlier seizure onset, with risk of injury related to myoclonic and atonic seizures and currently taking 3 or more AEDs. Soft tissue injuries were the most frequently reported (85%), with 27% indicating facial injuries. Conclusions The high rate of hospitalizations largely for soft tissue injuries suggests that access to more appropriate care was not available. Further research into care-seeking behavior by Australians suffering injury following seizure is required. Additionally, awareness of injury risks is important for appropriate self-management of epilepsy.