Comparative effectiveness of digital mental healthcare models for adults with epilepsy: A study protocol of a randomized controlled trial.

OBJECTIVE: Mental health complaints are prevalent among people with epilepsy, yet there are major barriers that prevent access to psychological care, including high out-of-pocket costs and a lack of accessible specialized services. The purpose of the current study is to examine the comparative efficacy, acceptability, cost-effectiveness, and long-term outcomes of a digital psychological intervention when delivered under two models of care (i.e., guided vs. unguided) in supporting the mental health and functioning of adults with epilepsy. METHOD: Approximately 375 participants across Australia will be enrolled. Eligible participants will have a confirmed diagnosis of epilepsy, experience difficulties with their emotional health, be at least 18 years of age, and live in Australia. Participants will be randomized (2:2:1) to receive the Wellbeing Neuro Course, a 10-week internet-delivered program, with (i.e., guided) or without guidance by a mental health clinician (i.e., unguided), or be allocated to a treatment-as-usual waiting-list control group. Participants will complete online questionnaires at pre-, post-treatment, and 3- and 12-month follow-up and consent to have their data linked to their medical records to capture healthcare system resource use and costs. ANALYSIS: Primary outcome measures will be symptoms of depression and anxiety. A cost-utility analysis will be undertaken using the Australian healthcare system perspective and according to current economic evaluation guidelines. Resource use and costs to the healthcare system during the study period will be captured via data linkage to relevant administrative datasets in Australia. SIGNIFICANCE: The results of this trial will provide important data concerning the relative outcomes of these different models of care and will inform the integration of digital psychological interventions translation into healthcare services. ETHICS AND DISSEMINATION: The Human Research Ethics Committee of Macquarie University approved the proposed study (Reference No: 520231325151475). The results will be disseminated through peer-reviewed publication(s). ANZCTR TRIAL REGISTRATION NUMBER: ACTRN12623001327673. PLAIN LANGUAGE SUMMARY: This study seeks to find out if a 10-week online psychological treatment can improve the mental health and well-being of Australian adults with epilepsy. Around 375 participants will be randomly assigned to different groups: one will receive treatment with guidance from mental health clinician (guided group), one without guidance (unguided group), and one starting later (waiting control group). All participants will fill out the same outcome measures online. The main goal of this research is to compare these groups and assess how well the treatment works in improving mental health outcomes.

Body image dissatisfaction: A novel predictor of poor quality of life in epilepsy.

OBJECTIVE: People with epilepsy have long reported reduced quality of life (QoL) compared to healthy peers. This initial study seeks to broaden our understanding of QoL in adults with epilepsy, by examining the adverse impact of body image dissatisfaction for the first time. This aim stems from the observation that both seizures and their medical treatment can cause unwanted changes to physical appearances, such as weight change, hirsutism, and acne. METHOD: Sixty-three adults with epilepsy and 48 age- and gender-matched healthy controls were recruited from a tertiary epilepsy program and targeted social media. Participants completed an online suite of well-validated questionnaires canvassing state (current) and trait (long-term) aspects of body image dissatisfaction, mood, QoL, and medical history. RESULTS: People with epilepsy reported significantly elevated levels of trait body image dissatisfaction compared to controls across the dimensions of appearance evaluation, body areas satisfaction, and self-classified weight (p = 0.02); but did not differ from controls on state body image dissatisfaction (p > 0.05). All facets of body image dissatisfaction in participants with epilepsy were strongly associated with reduced QoL, together with heavier body weight, depressive symptoms, medical comorbidities, and a belief that epilepsy hindered their ability to attain a healthier physique. Multiple regression revealed that body image dissatisfaction was the strongest unique contributor to poor QoL in the epilepsy group (ß = 0.46, p ≤ 0.001), above and beyond the contribution of current depressive symptoms (ß = 0.34, p ≤ 0.01). SIGNIFICANCE: This is the first study to highlight the high rates of body image dissatisfaction among adults with epilepsy, and the significantly detrimental impact it has on patient well-being. It also opens novel avenues for psychological interventions in epilepsy, that focus on enhancing positive body image as a means of holistically improving the often-poor psychological outcomes for people with this condition.

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.

Neuropsychiatric and Cognitive Comorbidities in Epilepsy.

PURPOSE OF REVIEW: This article discusses psychiatric and cognitive comorbidities of epilepsy over the lifespan and illustrates opportunities to improve the quality of care of children and adults with epilepsy. RECENT FINDINGS: One in 3 people with epilepsy have a lifetime history of psychiatric disorders, and they represent an important prognostic marker of epilepsy. Contributors are diverse and display a complex relationship. Cognitive comorbidities are also common among those living with epilepsy and are increasingly recognized as a reflection of changes to underlying brain networks. Among the cognitive comorbidities, intellectual disability and dementia are common and can complicate the diagnostic process when cognitive and/or behavioral features resemble seizures. SUMMARY: Comorbidities require consideration from the first point of contact with a patient because they can determine the presentation of symptoms, responsiveness to treatment, and the patient's day-to-day functioning and quality of life. In epilepsy, psychiatric and cognitive comorbidities may prove a greater source of disability for the patient and family than the seizures themselves, and in the case of essential comorbidities, they are regarded as core to the disorder in terms of etiology, diagnosis, and treatment.

"Do I still have epilepsy?" Epilepsy identity 15-20 years after anterior temporal lobectomy.

OBJECTIVE: Identity is a multifaceted construct, comprising personal identity (sense of being a unique individual) and social identity (the sense-of-self derived from membership of social groups). Social identity involves explicit identification with a group ("I am …") and implicit behaviors or attitudes associated with group membership. Following successful treatment with surgery, patients with epilepsy can undergo a complex and lasting change in personal identity. To date, there has been no research into postoperative social epilepsy identity (SEI). We sought to examine SEI 15-20 years post-surgery, and the relationship between SEI and satisfaction with surgery, psychosocial improvements, mood, and health-related quality of life (HRQoL). METHODS: Thirty-two patients who underwent anterior temporal lobectomy (ATL; 19 female) were recruited, with a median follow-up of 18 years (interquartile range [IQR] = 2.5). Using a novel interactive online program, we collected data on SEI, satisfaction with surgery, and perceived psychosocial improvements, alongside standardized measures of mood (Neurological Disorders Depressio Inventory-Epilepsy; Patient Health Questionnaire-Generalised Anxiety Disorder-7 item) and HRQoL (Quality of Life in Epilepsy-31 item). Non-parametric analyses were used to analyse the data. RESULTS: Twenty-five percent of patients were free of disabling seizures since surgery, yet 65% stated they no longer had epilepsy and >90% reported satisfaction with surgery. Explicitly discarding SEI was positively associated with HRQoL at long-term follow-up, over and above seizure outcome. Implicit SEI was expressed as (a) acceptance of epilepsy, (b) a sense of belonging to the epilepsy community, and (c) difficulty disclosing and discussing epilepsy. Difficulty disclosing and discussing epilepsy was associated with increased anxiety and lower HRQoL. SIGNIFICANCE: At long-term follow-up, over half of our patients reported an explicit change in SEI, which could promote better HRQoL. In contrast, difficulty with disclosure of epilepsy was associated with increased anxiety and reduced HRQoL, possibly reflecting the ongoing effects of stigma. These findings highlight the importance of understanding changes in patient social identity for promoting long-term well-being after surgery.

Understanding long-term changes in patient identity 15-20 years after surgery for temporal lobe epilepsy.

OBJECTIVE: Following epilepsy surgery, patients can experience complex psychosocial changes. We recently described a longer term adjustment and reframing ("meaning-making") process 15-20 years following surgery for temporal lobe epilepsy, which could involve an ongoing sense of being a "different" person for some patients. Here, we quantitatively examine identity at long-term follow-up and how this relates to meaning-making and postoperative seizure outcome. METHODS: Eighty-seven participants were included: 39 who underwent anterior temporal lobectomy (ATL) 15-20 years ago (59% female; median age = 49.2 years, interquartile range [IQR] = 10; median follow-up = 18.4 years, IQR = 4.4) and 48 surgically naïve focal epilepsy patients (56% female; median age = 34.5 years, IQR = 19). We captured approach to meaning-making by coding for key narrative features identified in our previous qualitative work. Nonparametric tests and correspondence analysis were then used to explore relationships between a quantitative measure of identity and meaning-making, as well as seizure outcome, mood, and health-related quality of life (HRQOL). RESULTS: Patients 15-20 years post-ATL demonstrated a shift toward increasing identity commitment and exploration compared to the surgically naïve cohort, with this shift significantly linked to seizure outcome. Examining the relationship between identity and meaning-making also revealed three groups: (1) those who embraced self-change (29%), (2) those who continued to struggle with this process (60.5%), and (3) those who showed minimal engagement (10.5%). Those who "embraced change" were significantly younger at regular seizure onset and demonstrated a trend toward higher HRQOL. SIGNIFICANCE: Findings suggest that ATL patients show a more developed identity profile compared to surgically naïve controls; however, the majority still struggled with postoperative identity change at long-term follow-up. Approximately one third of patients demonstrated positive psychological growth following surgery, reflected in the ability to embrace change. Findings highlight the importance of understanding the impact of surgery on patient identity to maximize the psychosocial benefits.

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.

Examining quality of life in an Australian cohort of people with epilepsy over six years - Understanding the role of stigma and mood.

AIM: Research examining quality of life (QoL) among people living with epilepsy (PWE) consistently highlights the detrimental impact of stigma, anxiety, and depression, as well as the dynamic and changing nature of QoL over time. This paper represents the first panel study of the Australian Epilepsy Longitudinal Survey (AELS), examining factors that influence the QoL of PWE over a six-year interval, particularly focusing on experiences of stigma, depression, and anxiety. METHODS: Ninety-two adults participated in both Wave 2 (T1; 2010) and Wave 4 (T2; 2016/17) of the AELS. Average age at T2 was 53.4 years [standard deviation (SD) = 15.3; range: 22-82; 55% female]. Over the study interval, there was a shift towards more younger participants moving out of high school and older participants moving into retirement. We explored the impact of (i) experiences of stigma, (ii) mood, and (iii) sociodemographic factors on QoL at both T1 and T2 via the use of correlation analyses. Hierarchical regression was used to determine the strongest predictors of QoL at T2. RESULTS: Occurrence of recent seizures, stigma, anxiety, and depression measured at T1 were all significantly correlated with total QoL at both T1 and T2. Sociodemographic factors including years of education, and weekly income before tax were not significantly correlated with QoL at either T1 or T2. QoL and depression at T1 were identified as the strongest predictors of QoL at T2 (six years later). DISCUSSION: The current study supports previous research highlighting the importance of psychological factors in understating QoL in PWE, particularly stigma, anxiety, and depression. In particular, it highlights the impact of depression on QoL over a 6-year interval, providing evident for the long-term nature of this relationship.

Needs for aids and equipment for the management of epilepsy in an Australian cohort.

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.

A patient-centered approach to understanding long-term psychosocial adjustment and meaning-making, 15 to 20 years after epilepsy surgery.

OBJECTIVE: Different psychosocial trajectories have been identified following treatment with epilepsy surgery, as patients adjust to possible changes in seizure frequency and the subsequent impact on their psychosocial functioning. Qualitative research has been key to understanding this adjustment process, particularly in the short-term (2-5 years). Currently, however, there is a lack of qualitative research examining longer-term (>15 years) outcomes, precluding the same rich, detailed understanding of longer-term psychosocial outcomes. Using a grounded theory approach, we explored how patients reflected on and made sense of their adjustment trajectories, 15 to 20 years after surgery. This included the impact of surgery on their sense of self and broader psychosocial functioning. METHODS: We recruited 40 adult patients who had undergone anterior temporal lobectomy (ATL) 15 to 20 years ago (24 females; 26 left-sided). Median age at habitual seizure onset was 9.7 years (Interquartile range; IQR = 13.8), and at surgery was 31 years (IQR = 12). Median length of follow-up was 18.4 years (IQR = 4.3). Comprehensive one-on-one interviews (median time = 86 min, IQR = 28) were used to elicit patient experiences of their surgery and subsequent psychosocial outcomes. Data were analyzed using a grounded theory inductive-deductive process. RESULTS: Patient narratives revealed a common process of psychosocial change and meaning-making triggered by surgery, which was often perceived as a major turning point in life. Patients reflected on moving through an early postsurgical period (<5 years) of upheaval and psychological disequilibrium. While this period was often remembered as stressful, difficulties were softened and/or reframed in hindsight. Through this process of reframing and meaning-making, patients were able to reestablish equilibrium and a sense of normality. Differences were evident in how patients navigated the process of meaning-making, and the extent to which they felt surgery had changed their self-identity. DISCUSSION: We propose a model of postsurgical meaning-making, evident in the narratives of patients who have undergone ATL, providing a new perspective on long-term psychosocial outcomes. This model contributes to our understanding of patient well-being and quality of life, by acknowledging the active role that patients play in seeking to create their own sense of normality after epilepsy surgery.

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.

Identifying the trajectory of social milestones 15-20 years after epilepsy surgery: Realistic timelines for postsurgical expectations.

OBJECTIVE: Patients often undertake epilepsy surgery with the expectation that it will lead to improvements in their social situation. Short- to medium-term research consistently points toward improvements in social outcomes; however, no study has mapped out postsurgical social timelines, particularly for longer-term (>15 years) outcomes. METHODS: We recruited 39 patients who had undergone anterior temporal lobectomy (ATL) for drug-resistant temporal lobe epilepsy (TLE) between 1994 and 2002. The cohort (24 females) had a median age of 49 years (range 38-67), age of habitual seizure onset was 9.5 years (range 0.5-29 years), and age at surgery was 31 years (range 20-53). Patients were followed up for a median of 18.4 years postsurgery (IQR = 4.4). Using data obtained from semistructured interviews, we conducted a comprehensive qualitative analysis of patients' self-reported postsurgical social trajectories. Self-report questionnaires were used to assess mood and health-related quality of life (HRQOL) at the time of interview. RESULTS: There was a common sequence of social milestone achievement, spanning 20 years postsurgery. Typically, patients first (re)gained their license, then attempted educational and vocational gains, followed by establishing long-term relationships and finally a family unit. Rare, intermittent seizures postsurgery did not appear to have detrimental effects on social trajectories. Those who experienced a reduction in seizures showed increased likelihood of attaining social milestones compared to those with ongoing seizures. SIGNIFICANCE: Achieving social milestones after epilepsy surgery may take considerably longer than patients are expecting prior to surgery. The pattern of social milestone outcome resembled a process of psychosocial development. These findings have important implications for presurgical counseling and postsurgical rehabilitation.

'I hate wasting the hospital's time': Experiences of emergency department admissions of Australian people with epilepsy.

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.

Family members' experience of the pre-diagnostic phase of dementia: a synthesis of qualitative evidence.

BACKGROUND: Most research on family members' experience of dementia has focused on the time after diagnosis. Yet, once people reach clinical attention, families have already been living with the changes for some time. These pre-diagnosis experiences can influence later caregiving. We aimed to synthesize qualitative research exploring family members' experiences of the pre-diagnostic phase of dementia to inform clinical practice. METHODS: We conducted a thematic synthesis of 11 studies that met our inclusion criteria following a comprehensive literature search. RESULTS: An overarching theme, sense-making, captured the primary process that family members engage in throughout the pre-diagnostic period. Within this, four major analytic themes were extracted as central concepts in understanding family members' experiences of the pre-diagnostic phase of dementia: the nature of change; appraisals of change; reactions to change; and the influence of others. CONCLUSIONS: Relevant features of the family experience of dementia onset can be characterized within several major themes. These findings highlight the complex process of recognizing early symptoms of dementia for people living with this condition and their families. Our findings also provide the foundation for developing theoretical frameworks that will ultimately assist with improving recognition of dementia onset, clinical communication with family members, and interventions to reduce family burden.