The future of epilepsy care in the United Kingdom: A roadmap for technology-enabled transformation.

The economic impact of epilepsy is added to the repercussion of the disease itself on the patient and his family. The different distribution of costs in children and adults with epilepsy suggest the need for intervention at an early age to try to reduce the long term economic and personal repercussions. The pharmaco-economic evaluation of the new antiepileptic drugs will make it clear whether their considerable cost is worth paying for their greater effectivity.

Background and objective Epilepsy is a chronic neurological condition that, both physically and psychologically, puts a person at risk for poorquality of life (QOL). People with epilepsy (PWE) may experience shame, fear, and rejection and feel discriminated against, hence avoiding social interactions. To avoid being labeled as having epilepsy, patients may conceal their disease and refuse medical attention, which can lead to treatmentdiscontinuation and significantly impact the quality of life. Epilepsy care in India has fallen back on primary care physicians because there are not enough neurologists available to treat the condition. Home-based care (HBC) may overcome many barriers by providingfree antiepileptic drugs (AEDs), eliminating the "distance to a health facility," and providing correctinformationthat mayimprove QOL. This study is therefore conducted to compare the QOL between people with epilepsy receiving home-based care (HBC) and routine clinic-based care (CBC). Methodology The people with epilepsy enrolled in this study were already part of a community-based randomized controlled trial conducted to compare the effect of regular home-based epilepsy care with routine clinic-based epilepsy care on antiepileptic adherence among urban and peri-urban areas of Ludhiana, Punjab, India (explained further in the study). Thepresent study is a cohort study where the two cohorts, one receiving home-based epilepsy care (n = 97) and the other receiving routine clinic-based epilepsy care (n = 76), were compared for QOL at two points in time, i.e., at baseline (at enrolment) and after 24 months of receiving epilepsy care, using the European Quality of Life Five-Dimension Three-Level (EQ-5D-3L) scale. Results The mean EQ-5D-3L index scores for the HBC group at baseline were 0.88 ± 0.15, and after 24 months, the scores increased to 0.94 ± 0.17. The baseline mean index scores for the CBC group were 0.89 ± 0.21, and after 24 months, the value increased to 0.90 ± 0.19. The mean difference in QOL in the HBC group showed a higher difference than in the CBC group (0.06 ± 0.1 versus 0.01 ± 0.1), but the difference was found to be statistically not significant (p = 0.067). As per the five dimensions of the EQ-5D-3L scale, i.e., mobility, self-care, usual activities, pain/discomfort, and anxiety/depression, there was a decrease in the number of PWE reporting problems among both groups after 24 months of epilepsy care.Sociodemographic and clinical variablessuch as level of education, working status, age at the onset of seizures, frequency of seizures, treatment regimen, presence of comorbidities, and adverse drug reactions significantly affect the QOL of people with epilepsy at p < 0.05. Conclusion The results of the study emphasize that epilepsy has a negative impact on QOL. The results showed a higher QOL among the people in the HBC group as compared to the CBC group, but the difference was not statistically significant. There was an improvement in QOL from baseline after dedicated care in both groups. The problems related to mobility, self-care, usual activities, pain/discomfort, and anxiety/depression have been significantly reduced in the HBC group. Having low levels of education, not having a job, starting to have seizures at a young age, having seizures more often, receiving more than one type of treatment, and the presence of other health problems and side effects are factorsassociated with poor QOL among peoplewith epilepsy.

Epilepsy is prevalent in 22.2% of the intellectual disability (ID) population, with complexities spanning across health and social care sectors. Minimal research has been conducted to explore the experiences of epilepsy care within social care, despite its significance. Qualitative methodologies, using semi-structured interviews, were used to explore the experiences of health and social care professionals within the United Kingdom and analysed using Braun and Clarke's reflexive thematic analysis framework. Four overarching themes were constructed from 11 interviews a) "It's just not sexy, is it?": Barriers to good epilepsy care, b) "My mission is to make their life better": Facilitators of good epilepsy care, c) "Sometimes they appear frightened": Impact of epilepsy, d) "Epilepsy training as a mandatory": Future of epilepsy care. Fear was the most prevalent emotion described by participants throughout, which was perpetuated by the lack of resources and understanding/awareness, such as training. However, facilitating better epilepsy care for people with ID, can help reduce fear, and promote better wellbeing in all. Participants made recommendations such as mandating epilepsy training, and involving all key stakeholders, including families of people with ID, to improve epilepsy care in the future. Mandating epilepsy training in health and social care settings is beneficial for care delivery and reducing the impact of epilepsy upon families and caregivers. Involving key stakeholders, such as families and caregivers, in all aspects of epilepsy care for people with ID, improves communication, service delivery and quality.

Background Variability in obstetric anaesthetia practice and care delivered within the UK is under-explored. The ObsQoR study explored structures, processes, and outcomes of obstetric anaesthesia in 107 hospitals within the UK's National Health Service, and the results of the hospital-level survey are reported here. Methods Hospitals were surveyed to assess obstetric anaesthesia provision, practice, and care delivery. Questions explored staffing, service provision and training, facilities present, clinical practices, outcome measurement, and key indicators of quality in obstetric anaesthesia. Results We received responses from 106 participating hospitals, representing 69% of all UK obstetric units. One hundred (94%) hospitals had a dedicated consultant obstetric anaesthetist within working hours, with 27 (25%) of hospitals' duty anaesthetists having additional clinical responsibilities outside the care of obstetric patients outside of working hours. Around 102 hospitals (98%) offer multidisciplinary team training, of which 95 (93%) use a simulation-based method. Dedicated high-risk antenatal clinics were present in 50 (47%) hospitals. The majority of hospitals provide written patient information in multiple languages for discussing obstetric anaesthesia options (77, 82%). Seventy-three hospitals (69%) use point-of-care testing to estimate haemoglobin concentration. Labour epidural analgesia is most commonly delivered via patient-controlled epidural analgesia in 80 (76%) hospitals, and the incidence of post-dural puncture headaches was recorded by 80 (76%) hospitals. Conclusions These results demonstrate variation in the provision of staffing, facilities, clinical practices, and outcome measurements across the UK. To deliver safe and equitable care across the UK, there needs to be standardisation of anaesthetic peripartum care based on national recommendations and the benchmarking and measurement of appropriate markers of quality.

Purpose: Functional seizures (FS) may manifest differently across socioeconomic contexts, yet this area remains underexplored.Comorbidities can be pivotal in triggering and sustaining FS, making their recognition important for tailoring effective treatment.This study describes and contrasts the medical and psychiatric comorbidities, injuries, somatic and cognitive symptoms, and medical procedures reported by FS patients at two private and public epilepsy monitoring units in Cape Town, South Africa. Method:This retrospective case-control study analysed data from patients with video-EEG-confirmed FS, excluding those with coexisting epilepsy.Information on comorbidities, symptoms, and medical procedure histories was obtained from digital patient records including all available records through to 2022.Descriptive statistics and bivariate analyses using chi-square, Fisher's exact, and Wilcoxon rank-sum tests were used.Logistic regression identified factors associated with public hospital status, adjusting for sex, age, and comorbidity reporting.Results: The study included 372 patients: 305 from a private hospital and 67 from a public hospital.Public hospital patients were more likely to report intellectual disability (aOR = 15.58,95% CI [1.80, 134.95]), circulatory system disease (aOR = 2.63, 95% CI [1.02, 6.78]), and gait disturbances (aOR = 8.52, 95% CI [1.96, 37.08]).Conversely, they had lower odds of reporting infectious or parasitic diseases (aOR = 0.31, 95% CI [0.11, 0.87]), respiratory system conditions (aOR = 0.23, 95% CI [0.06, 0.82]), and prior medical procedures (aOR = 0.32, 95% CI [0.16, 0.63]).Conclusion: This study highlights differences and similarities in the medical profiles of FS patients from diverse socioeconomic settings.These findings underscore the need to consider contextual factors in the diagnosis and management of FS. 19 | No epilepsy care without mental health care T Fischl 1 1 Israel Stroke Centre, Tel Aviv, IsraelEffective epilepsy care goes beyond seizure control.It requires a comprehensive approach that addresses the full range of neuropsychiatric, cognitive, and psychosocial multimorbidities.Mental health symptoms-often seizure-related or medication-induced-are frequently overlooked or misdiagnosed.When left untreated, they are associated with poorer quality of life, reduced seizure

Epilepsy—a time for change?

Epilepsy is a common, chronic neurologic disease with continued disparities in care. The COVID-19 pandemic and recent social movements have drawn greater attention to social determinants of health and our progress (or lack thereof) toward delivering more equitable care. Recent studies continue to document racial and economic disparities in diagnosis, treatment, and overall care of epilepsy and associated conditions. Notably, an increasing number of studies are attempting to design healthcare pathways and other interventions to improve access and equity in epilepsy care. The present literature highlights the importance of identifying and addressing the particular needs of vulnerable persons with epilepsy. Practitioners and researchers should continue to develop interventions aimed at improving care for all patients and, crucially, measure the impact of their changes to ensure that any interventions are truly advancing health equity.

Epilepsies are a common, but heterogeneous group of brain disorders, characterized by an enduring predisposition to recurrent epileptic seizures. Recognizing epilepsies as a disease spectrum offers compelling opportunities to implement precision medicine in routine care. In this narrative review, we assess the status and development of precision epilepsy, compare its implementation with the advanced model of precision oncology, and discuss strategies to advance the implementation of precision medicine in epilepsy care. We aim to raise awareness about the current state-of-the-art approaches in precision epilepsy, emphasizing their potential to optimize epilepsy care. Rapid technological innovations provide the foundation to improve epilepsy research and management including the establishment of multi-dimensional biomarkers to aid disease subtyping and treatment decision. We also introduce emerging digital health technologies that will transform seizure monitoring and prediction. Advances in data science and artificial intelligence will deepen our knowledge of epilepsies, and may deconstruct and systematize historical, clinical, and descriptive concepts. Following a thorough examination of the current epilepsy landscape – including obstacles against precision medicine implementation and clinical adoption - we envision that the path toward precision epilepsy care lies in studies uncovering the mechanisms underlying systems-biology and neurophysiology-based epileptogenesis using technological innovations, such as genetic testing, fluid indicators, neuroimaging, neurophysiology, and wearable devices. We review the literature based on four core pillars - biomarkers, digital technologies, systems medicine, and data science - to pinpoint the unmet need for epilepsies and thus revolutionize disease management strategies.

Awareness, attitudes, skills and training needs of psychiatrists working with adults with intellectual disability in managing epilepsy

Satisfaction with epilepsy care (SEC) encompasses care delivery, expectations, attitudes, and disease course. Through a systematic review of the evidence, we explore how and where the SEC of patients is being measured, the level of SEC overall and in specific domains, and its relationship to clinical and demographic variables. We searched Medline, PsycINFO, CINAHL, Cochrane Register of Controlled Trials, and EMBASE using medical subject headings and keywords related to satisfaction with care and epilepsy in adults and children, in all languages. Two independent reviewers screened abstracts and full-text articles. We examined the clinical context and patient characteristics, type and content of satisfaction scales, and reported outcomes. Abstracted variables were grouped for descriptive purposes and presented as medians and proportions when the data allowed it. Of 25 included studies (6,336 patients), 88% were performed in the United States or the United Kingdom. Nine studies (36%) used validated instruments and 16 studies (64%) used nonvalidated instruments. For SEC domains reported in >1 study, the median proportion (interquartile range) of patients satisfied with epilepsy care was 86% (17%) for overall satisfaction with care, 85% (24%) for interpersonal skills, 78% (3%) for access to care, 67% (32%) for communication, and 65% (15%) for knowledge/technical skills. Communication and clinicians' knowledge was important in all settings. Patients seen in specialized settings and those receiving more and better information had higher SEC ratings. There was no consistent association between SEC and quality of care indicators. Data on SEC have been reported infrequently. Patients are least satisfied with communication, perceived skills, and knowledge of care providers. Epilepsy-specific SEC tools have neither been validated nor do they contain many of the important domains identified by this review. The relationship between SEC and indicators of quality of care requires further study. Measures aimed at improving education and communication could improve SEC.

Cost-effectiveness of pentostatin compared with cladribine in the management of hairy cell leukemia in the United Kingdom

Black and minority ethnic (BME) groups are particularly susceptible to diabetes and its vascular complications in the United Kingdom and most western societies. To understand potential predisposition and tailor treatments accordingly, there is a real need to engage these groups in diabetes research. Despite this, BME participation in research studies continues to remain low in most countries and this may be a contributory factor to reduced health outcomes and poorer quality of life in these groups. This study explores the barriers BME groups may have towards participation in diabetes research in one area of East London, and includes local recommendations on how to improve this for the future. A questionnaire designed from previously reported exploratory work and piloted in several BME localities was distributed at the East London Bangladeshi Mela and similar cultural and religious events in London, UK. People were asked opportunistically to complete the survey themselves if they understood English, or discuss their responses with an advocate. The purpose of the questionnaire was to understand current local awareness with regards to diabetes, identify specific BME barriers and attitudes towards diabetes research by ethnicity, gender and age, and gain insight into how these barriers may be addressed. Of 1682 people surveyed (16-90 years; median age 40 years), 36.4% were South Asian, 25.9% White, and 11.1% Black and other ethnicities; 26.6% withheld their ethnicity. Over half cited language problems generally (54%) and lack of research awareness (56%) as main barriers to engaging in research. South Asian groups were more likely to cite research as too time consuming (42%) whereas Black groups were more concerned with potential drug side effects in research (39%). Participants expressed a general mistrust of research, and the need for researchers to be honest in their approach. Recommendations for increased participation in South Asian groups centred round both helping the community (61%) and improving health (55%). With regards to gender influences, females (34.6%) were significantly more likely to fear drug side effects than males (23.8%), P<0.001. Females were also significantly more likely not to participate in research due to fear of experimentation (25.8%) compared with males (18.9%) P=<0.001. Initial findings from the study demonstrate that in East London research barriers are focused on time, drug side effects, lack of awareness and language. There is a perception that research is time consuming even though the majority of those surveyed had not taken part in a research study. Further potential solutions from the survey have suggested that researchers also need to involve BME community leaders in their study strategy and indicate any individual health benefits to participation in research. Accessible studies with regards to time and advocacy provision need to be included in the design.

If the COVID-19 pandemic has showcased the best in medical advances, with manufacture of new vaccines within a year of the discovery of the virus, it has also highlighted the worst in global health-care provision, revealing systemic ageism and racism. These systemic failings have long been deep-rooted in health-care practice and policies. The chronic stress of racial minority groups experiencing marginalisation and microaggressions results in a deterioration of physical and mental health, known as “weathering”, illustrating the erosion of bodies. This phenomenon explains the higher mortality rates of Black men with prostate cancer and Black pregnant women in both the USA and the UK, and higher prevalence of mental health issues and lower life expectancy for Black people in both countries. Poor health outcomes are exacerbated by reduced access to health-care and compromised quality of care. In health-care systems in which access is contingent on securing insurance, such as in the USA, minority groups are placed at a disadvantage due to high insurance costs. However, even in public systems, such as the UK's National Health Service, treatment for minorities is shown to be inadequate, exemplified by consistent reports of lower satisfaction and poorer experience of care in British minority ethnic patients with cancer, compared with White patients, on the annual National Cancer Patient Experience Survey. Ageism, independent of race, has become entrenched in health-care systems. Although major consumers of services, older adults receive inadequate care due to stereotypes, prejudice, and discrimination. Studies have shown that older patients with lung cancer in the UK are referred less often for surgery, and that doctors are less likely to provide breast cancer screening for older women. Structural barriers exacerbate poor quality of care for older adults, including lack of transportation options compounding existing mobility restrictions, a shortage of geriatric specialists, and a recent shift to telehealth, in all countries for which data are reported. The combination of ageism and racism in health-care paints a concerning picture. A study published this month found that people with dementia experienced elevated risk of COVID-19 and poorer outcomes, and that this was especially the case for Black people with dementia, who were twice as likely to contract COVID-19 than were White people with dementia. By definition, the cumulative stress of racial discrimination will result in the most severe weathering in older adults; in fact, studies have shown that the chronicity of stress, rather than the severity, is linked to compromised health and premature mortality. Older adults from racial minority groups often exhibit poorer health-related quality of life, lower life expectancy, and greater multimorbidity. Moreover, their poor mental health has been largely overlooked and, given their experience of perpetual stress paired with the stigma of mental health difficulties, requires greater attention and support. The damaging effects of combined racism and ageism present a pressing public health challenge. In this issue, a study by Mahmud and colleagues showes that among older adults who received a flu vaccine, those from racial and ethnic minority groups were less likely to receive the more effective high-dose vaccine. These findings are important in refuting that health-care inequities stem exclusively from behaviours and attitudes of minority groups, often cited as justifications, such as greater mistrust in health-care or vaccine hesitancy, and force us to acknowledge structural barriers to vaccine uptake and access. Interventions are needed to address the unique needs and challenges facing older adults from minority groups. For example, as individuals from these groups report a preference for treatment from a physician from a similar minority group, interventions must focus on increasing representation of minority physicians, for example via increased support for medical trainees from minority groups to tackle lower completion rates, and rectifying lower compensation for doctors from a minority ethnic background. In the aftermath of the pandemic, when normality resumes, we must resist complacency and continue to hold policymakers and politicians accountable to implement changes within our health-care systems. Sweeping changes are needed within health-care practice, medical education, and research, with the aim of increasing awareness and understanding of the unique challenges of older adults from racial and ethnic minority groups. Only then can we begin to redress the generations of weathering. Effect of race and ethnicity on influenza vaccine uptake among older US Medicare beneficiaries: a record-linkage cohort studySubstantial racial and ethnic disparities in SIV uptake among Medicare beneficiaries aged 65 years or older are evident. New legislative, fiscal, and educational strategies are urgently needed to address these inequities. Full-Text PDF Open Access

The utilization of large language model-based artificial intelligence (AI) in the field of neurology has gained attention as a viable tool to enhance and assist providers with processes ranging from scheduling patients to providing preliminary interpretations of testing results, pending orders, and documenting encounters. Epileptologists could benefit from these technologies by utilizing ambient AI models, recent applications of which offer promising solutions for automating clinical documentation. While the potential benefits of using these tools are significant and include reduced physician burnout and improved patient experience, the deployment of these technologies also raises critical concerns, such as potential biases in model training and the risk of errors being inserted into the electronic health record (EHR), among other yet to be realized unintended consequences. The accuracy of clinical documentation is essential in epilepsy care, where detailed seizure histories and accurate medication records are critical to patient safety. Another concern may be paradoxically increased physician burnout as increased expectations of providers are created. This article examines the challenges, risks, and practical considerations in applying documentation tools that utilize ambient intelligence (AmI) for outpatient epilepsy clinic encounters, highlighting key examples from clinical practice and underscoring the importance of human oversight. Although AmI models may enhance clinical documentation efficiency as measured by time to close a note and reduced rates of burnout in providers, their role in clinical environments must be carefully regulated, with further studies needed to validate this claim, provide ongoing monitoring of performance, and establish safeguards for patient safety. Collaborative efforts among clinicians, clinical informatics professionals, AI developers, and regulatory bodies are pressingly needed to ensure the safe deployment of AmI into clinical care settings. PLAIN LANGUAGE SUMMARY: Ambient artificial intelligence technology takes advantage of sensors embedded in the environment to automate tasks without the need for human input. It has the potential to streamline numerous tasks within outpatient epilepsy clinics and reduce the workload of providers as well as improve patient care. This technology has already been brought to the market as a tool for clinical documentation. The current challenges and limitations associated with its implementation require careful human oversight, which we show with examples. Further research, regulations, and ongoing monitoring are necessary to ensure ambient artificial intelligence benefits both patients and healthcare providers while minimizing risks.

There has been an alarming surge in the number of health workers leaving their own countries to benefit from better pay and working conditions offered by richer countries, according to WHO and The World Bank. Whilst this has increased the flow of remittances--and in some cases, expertise--back home, it has also triggered staffing crises in many countries. According to The World Bank, remittances wired by migrant workers through the banking system alone totalled US$ 90 billion in 2003, up from some US$ 88 billion in 2002 and US$ 72.3 billion in 2001. The International Organization for Migration (IOM) estimates that at least as much again is remitted outside the banking system. In the United Kingdom 50% of newly registered nurses came from abroad in 2002, compared with 25% in 1998. It's not surprising when salaries in Zambia, for example, are 25 times lower than in the UK, said Barbara Stilwell, Programme Coordinator from WHO's Human Resources for Health department. WHO and World Bank officials warned governments in January that the health staffing gap in developing countries had become a major obstacle to achieving the UN Millennium Development Goal to reduce poverty by 2020. A World Health Assembly resolution followed in May calling on WHO's 192 Member States to better manage the migration of health workers in order to avoid damaging health services in poor countries. Some receiving countries, like the United Kingdom, have begun to recognize the damage wrought by their recruiting strategies and are adopting ethical recruitment policies in line with those of the Geneva-based International Council of Nurses, a federation of national nursing associations representing millions of nurses worldwide. The UK's National Health Service now discourages recruiting from certain developing countries in order to safeguard their health-care systems, for example. In some donor countries, improving the organization of health staffing services could help address staff shortages, explained Stilwell. Malawi, for example, has nursing vacancies and yet has 1200 unemployed nurses. In other countries such as Ghana, however, the situation is different. Ken Sagoe, Director of the Ghanaian health service's Human Resource Development Division, told news web site, Ghanaweb, that Ghana had lost 1032 nurses and 166 doctors last year and nine health centres had been without a medical officer since January. India was one of the first developing countries to suffer a drain of health workers and was the largest source country for doctors in the 1970s, many of whom have stayed on in the United Kingdom, Canada and the United States. Binod Khadria, Professor of Economics at the Jawaharlal Nehru University in New Delhi, India, wrote in a recent paper that 56% of the All India Institute of Medical Sciences' graduate doctors left the country between 1956 and 1980. …