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PURPOSE: With epilepsy increasingly affecting older adults, seizure-related care needs arise in new settings. Persons in these settings must receive optimal support and challenges identified for remediation. This may entail the epilepsy community researching in unfamiliar environments. One setting is care homes. Seizure-related ambulance incidents in them are common. We conducted the first qualitative study with care home staff to explore their experiences and challenges in managing suspected seizures. METHODS: Three online focus groups were organised for January 2024 to explore ambulance calls, post-incident procedures, and challenges faced by care home staff when managing seizures. Persons were eligible to participate if they worked as a care assistant, nurse or manager in a care home in North-West England. Different recruitment pathways were employed including direct approach, a managers' network, social media and a register of research interested homes. Focus group audio recordings were transcribed and analysed using Hamilton's Rapid Analysis. RESULTS: Recruitment was difficult; 13 care home staff from 12 different homes were ultimately recruited. Despite data saturation not being achieved, insights were gained regarding ambulance call decisions, paperwork navigation, and follow-up care challenges. Patients not having meaningful seizure action plans in place and regulatory restrictions were identified as factors that contributed to potentially avoidable calls for ambulance help being made. CONCLUSION: This study highlights systemic issues in care homes' seizure care, emphasizing the need for further research. The epilepsy community may need to innovate to better research within this increasingly important setting. This study offers insights into the effectiveness of different recruitment strategies.
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Epilepsia , Grupos Focales , Convulsiones , Humanos , Inglaterra , Epilepsia/terapia , Convulsiones/terapia , Masculino , Femenino , Adulto , Investigación Cualitativa , Personal de Salud/psicología , Persona de Mediana Edad , AmbulanciasRESUMEN
PURPOSE: Suspected seizures present challenges for ambulance services, with paramedics reporting uncertainty over whether or not to convey individuals to emergency departments. The Risk of ADverse Outcomes after a Suspected Seizure (RADOSS) project aims to address this by developing a risk assessment tool utilizing structured patient care record and dispatch data. It proposes a tool that would provide estimates of an individual's likelihood of death and/or recontact with emergency care within 3 days if conveyed compared to not conveyed, and the likelihood of an 'avoidable attendance' occurring if conveyed. Knowledge Exchange workshops engaged stakeholders to resolve key design uncertainties before model derivation. METHOD: Six workshops involved 26 service users and their significant others (epilepsy or nonepileptic attack disorder), and 25 urgent and emergency care clinicians from different English ambulance regions. Utilizing Nominal Group Techniques, participants shared views of the proposed tool, benefits and concerns, suggested predictors, critiqued outcome measures, and expressed functionality preferences. Data were analysed using Hamilton's Rapid Analysis. RESULTS: Stakeholders supported tool development, proposing 10 structured variables for predictive testing. Emphasis was placed on the tool supporting, not dictating, care decisions. Participants highlighted some reasons why RADOSS might struggle to derive a predictive model based on structured data alone and suggested some non-structured variables for future testing. Feedback on prediction timeframes for service recontact was received, along with advice on amending the 'avoidable attendance' definition to prevent the tool's predictions being undermined by potential overuse of certain investigations in hospital. CONCLUSION: Collaborative stakeholder engagement provided crucial insights that can guide RADOSS to develop a user-aligned, optimized tool.
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Servicios Médicos de Urgencia , Humanos , Servicios Médicos de Urgencia/métodos , Ambulancias , Servicio de Urgencia en Hospital , Convulsiones/diagnóstico , Convulsiones/terapia , Medición de RiesgoRESUMEN
BACKGROUND: Paramedics convey a high proportion of seizure patients with no clinical need to emergency departments (EDs). In a landmark study, only 27% of UK paramedics reported being "Very "/ "Extremely confident" making seizure conveyance decisions. Improved pre-registration education on seizures for paramedics is proposed. Clarity is needed on its potential given recent changes to how UK paramedics train (namely, degree, rather than brief vocational course). This study sought to describe UK student paramedics' perceived readiness to manage seizures and educational needs; compare this to what they report for other presentations; and, explore subgroup differences. METHODS: Six hundred thirty-eight students, in year 2 or beyond of their pre-registration programme completed a cross-sectional survey. They rated perceived confidence, knowledge, ability to care for, and educational needs for seizures, breathing problems and, headache. Primary measure was conveyance decision confidence. RESULTS: For seizures, 45.3% (95% CI 41.4-49.2) said they were "Very "/"Extremely confident" to make conveyance decisions. This was similar to breathing problems, but higher than for headache (25.9%, 95% CI 22.6-29.5). Two hundred and thirty-nine participants (37.9%, 95% CI 34.1-41.8) said more seizure education was required - lower than for headache, but higher than for breathing problems. Subgroup differences included students on university-based programmes reporting more confidence for conveyance decisions than those completing degree level apprenticeships. CONCLUSIONS: Student paramedics report relatively high perceived readiness for managing seizures. Magnitude of benefit from enhancements to pre-registration education may be more limited than anticipated. Additional factors need attention if a sizeable reduction to unnecessary conveyances for seizures is to happen.
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Servicios Médicos de Urgencia , Paramédico , Humanos , Estudios Transversales , Convulsiones/diagnóstico , Convulsiones/terapia , Estudiantes , Cefalea , Reino UnidoRESUMEN
OBJECTIVE: The Patient Information Leaflet (PIL) is an authoritative document that all people with epilepsy in the EU receive when prescribed antiseizure medication (ASM). We undertook the first independent, comprehensive assessment to determine how understandable they are. Regulators state that when patients are asked comprehension questions about them, ≥80% should answer correctly. Also, recommended is that PILs have a maximum reading requirement of US grade 8. METHODS: Study 1: We obtained 140 current ASM PILs written in English. "Readability" was assessed using four tests, with and without adjustment for influence of familiar, polysyllabic words. A total of 179 online materials on epilepsy were also assessed. Study 2: Two PILs from Study 1 were randomly selected (Pregabalin Focus; Inovelon) and shown to 35 people from the UK epilepsy population. Their comprehension was assessed. Study 3: To understand whether the student population provides an accessible alternative population for future examination of ASM PILs, Study 3 was completed, using the same methods as Study 2, except that participants were 262 UK university students. RESULTS: Study 1: No PIL had a reading level of grade 8. Median was grade 11. Adjusting for context, the PILs were still at grade 10.5. PILs for branded ASMs were most readable. PILs were no more readable than (unregulated) online materials. Study 2: Users struggled to comprehend the PILs' key messages. The eight questions asked about pregabalin were typically answered correctly by 54%. For Inovelon, it was 62%. Study 3: Most student participants comprehended the PILs' key messages. The questions about Inovelon were answered correctly by 90%; for pregabalin it was 86%. SIGNIFICANCE: This is the first independent and comprehensive examination of ASM PILs. It found that PILs being used fail to meet recommendations and regulatory requirements and risk not being understandable to a substantial proportion of users. In finding that people from the epilepsy population differ markedly in comprehension of PILs compared to students, this study highlights the importance of completing user testing with the target population.
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Comprensión , Folletos , Anticonvulsivantes/uso terapéutico , Epilepsia/tratamiento farmacológico , Conocimientos, Actitudes y Práctica en Salud , Humanos , Educación del Paciente como Asunto , Pregabalina/uso terapéuticoRESUMEN
INTRODUCTION: Psychological interventions hold promise for the epilepsy population and continue to be trialed to determine their efficacy. Such interventions present opportunities for variance in delivery. Therefore, to accurately interpret a trial's estimate of effect, information on implementation fidelity (IF) is required. We present a novel 3-part study. Part 1 systematically rated trials for the extent to which they reported assessing whether the intervention was delivered as intended (adherence) and with what sort of skill (competence). Part 2 identified barriers to reporting and assessing on fidelity perceived by trialists. Part 3 determined what journals publishing epilepsy trials are doing to support IFs reporting. METHODS: Articles for 50 randomized controlled trials (RCTs)/quasi-RCTs of psychological interventions identified by Cochrane searches were rated using the Psychotherapy Outcome Study Methodology Rating Form's fidelity items. The 45 corresponding authors for the 50 trials were invited to complete the 'Barriers to Treatment Integrity Implementation Survey'. 'Instructions to Authors' for the 17 journals publishing the trials were reviewed for endorsement of popular reporting guidelines which refer to fidelity (Consolidated Standards of Reporting Trials (CONSORT) statement or Journal Article Reporting Standards [JARS]) and asked how they enforced compliance. RESULTS: Part 1: 15 (30%) trials reported assessing for adherence, but only 2 (4.3%) gave the result. Four (8.5%) reported assessing for competence, 1 (2.1%) gave the result. Part 2: 22 trialists - mostly chief investigators - responded. They identified 'lack of theory and specific guidelines on treatment integrity procedures', 'time, cost, and labor demands', and 'lack of editorial requirement' as "strong barriers". Part 3: Most (15, 88.2%) journals endorsed CONSORT or JARS, but only 5 enforced compliance. CONCLUSIONS: Most trials of psychological interventions for epilepsy are not reported in a transparent way when it comes to IF. The barriers' trialists identify for this do not appear insurmountable. Addressing them could ultimately help the field to better understand how best to support the population with epilepsy.
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Epilepsia/terapia , Publicaciones Periódicas como Asunto/normas , Psicoterapia , Edición/normas , Ensayos Clínicos Controlados Aleatorios como Asunto/normas , Proyectos de Investigación/normas , Competencia Clínica , Estudios Transversales , Humanos , Evaluación de Resultado en la Atención de Salud , Publicaciones Periódicas como Asunto/estadística & datos numéricos , Edición/estadística & datos numéricos , Garantía de la Calidad de Atención de Salud , Mejoramiento de la Calidad , Ensayos Clínicos Controlados Aleatorios como Asunto/métodos , Ensayos Clínicos Controlados Aleatorios como Asunto/estadística & datos numéricos , Proyectos de Investigación/estadística & datos numéricos , Encuestas y CuestionariosRESUMEN
Psychological treatment is recommended for depression and anxiety in those with epilepsy. This review used standardised criteria to evaluate, for the first time, the clinical relevance of any symptom change these treatments afford patients. Databases were searched until March 2017 for relevant trials in adults. Trial quality was assessed and trial authors asked for individual participants' pre-treatment and post-treatment distress data. Jacobson's methodology determined the proportion in the different trial arms demonstrating reliable symptom change on primary and secondary outcome measures and its direction. Search yielded 580 unique articles; only eight eligible trials were identified. Individual participant data for five trials-which included 398 (85%) of the 470 participants randomised by the trials-were received. The treatments evaluated lasted ~7 hours and all incorporated cognitive-behavioural therapy (CBT). Depression was the primary outcome in all; anxiety a secondary outcome in one. On average, post-treatment assessments occurred 12 weeks following randomisation; 2 weeks after treatment had finished. There were some limitations in how trials were conducted, but overall trial quality was 'good'. Pooled risk difference indicated likelihood of reliable improvement in depression symptoms was significantly higher for those randomised to CBT. The extent of gain was though low-the depressive symptoms of most participants (66.9%) receiving CBT were 'unchanged' and 2.7% 'reliably deteriorated'. Only 30.4% made a 'reliable improvement. This compares with 10.2% of participants in the control arms who 'reliably improved' without intervention. The effect of the treatments on secondary outcome measures, including anxiety, was also low. Existing CBT treatments appear to have limited benefit for depression symptoms in epilepsy. Almost 70% of people with epilepsy do not reliably improve following CBT. Only a limited number of trials have though been conducted in this area and there remains a need for large, well-conducted trials.
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Terapia Cognitivo-Conductual , Depresión/terapia , Trastorno Depresivo/terapia , Epilepsia/complicaciones , Depresión/complicaciones , Depresión/psicología , Trastorno Depresivo/complicaciones , Trastorno Depresivo/psicología , Epilepsia/psicología , Humanos , Resultado del TratamientoRESUMEN
OBJECTIVE: Epilepsy is one of the most common neurological conditions affecting about 1% of adults. Up to 40% of people with epilepsy (PWE) report recurring seizures while on medication. And optimal functioning requires good self-management. Our objective was to evaluate a group self-management education courses for people with epilepsy and drug-resistant seizures by means of a multicenter, pragmatic, parallel group, randomized controlled trial. METHODS: We recruited adults with epilepsy, having ≥2 seizures in the prior 12 months, from specialist clinics. Consenting participants were randomized 1:1 to a group course or treatment as usual. The primary outcome measure was quality of life 12 months after randomization using Quality of Life 31-P (QOLIE-31-P). Secondary outcome measures were seizure frequency and recency, psychological distress, impact and stigma of epilepsy, self-mastery, medication adherence, and adverse effects. Analysis of outcomes followed the intention-to-treat principle using mixed-effects regression models. RESULTS: We enrolled 404 participants (intervention: n = 205, control: n = 199) with 331 (82%) completing 12-month follow-up (intervention: n = 163, control: n = 168). Mean age was 41.7 years, ranging from 16 to 85, 54% were female and 75% were white. From the intervention arm, 73.7% attended all or some of the course. At 12-month follow-up, there were no statistically significant differences between trial arms in QOLIE-31-P (intervention mean: 67.4, standard deviation [SD]: 13.5; control mean: 69.5, SD 14.8) or in secondary outcome measures. SIGNIFICANCE: This is the first pragmatic trial of group education for people with poorly controlled epilepsy. Recruitment, course attendance, and follow-up rates were higher than expected. The results show that the primary outcome and quality of life did not differ between the trial arms after 12 months. We found a high prevalence of felt-stigma and psychological distress in this group of people with drug-resistant seizures. To address this, social and psychological interventions require evaluation, and may be necessary before or alongside self-management-education courses.
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Epilepsia Refractaria/terapia , Educación del Paciente como Asunto/métodos , Calidad de Vida , Automanejo/métodos , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto JovenRESUMEN
How to refer to someone with epilepsy is a divisive topic. Arguments for and against different approaches, including traditional adjective labels, disability-first labels, and person-first terms have been presented. The preferences of those with epilepsy and their family and friends have, though, never been determined. This study provides this information for the first time. Via epilepsy interest groups and organizations in the UK and Republic of Ireland, 638 patients and 333 significant others completed an online survey. Three distinct phrases were presented: "They're epileptic" (traditional label), "They're an epileptic person" (disability-first) and "That person has epilepsy" (person-first). Participants identified which they preferred and explained their choices. Patients' median age was 39, with 69% having experienced seizures in the prior 12months. Significant others were typically parents. Most (86.7%) patients and significant others (93.4%) favored the person-first term. Traditional and disability-first terms were "Disliked"/"Strongly disliked". Regression found it was not possible to reliably distinguish between participants favoring the different terms on the basis of demographics. Qualitative analysis of answers to open-ended questions, however, revealed most favored person-first terminology as by not including the word 'epileptic' and by affirming personhood before disability, it was felt to less likely restrict a listener's expectations or evoke the condition's negative association. It was also considered to suggest the person being referred to might have some mastery over their condition. The findings indicate consensus amongst these key stakeholders others for the use of person-first terminology in English. A truly informed debate on the topic can now begin.
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Cuidadores/psicología , Epilepsia/clasificación , Epilepsia/psicología , Prioridad del Paciente/psicología , Investigación Cualitativa , Terminología como Asunto , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Epilepsia/epidemiología , Femenino , Amigos/psicología , Humanos , Irlanda/epidemiología , Masculino , Persona de Mediana Edad , Reino Unido/epidemiología , Adulto JovenRESUMEN
Epilepsy affects around 1% of the UK population; 40% of whom experience two or more seizures annually. However, most Emergency Department (ED) visits by people with epilepsy (PWE) are clinically unnecessary. Evidence highlights that with correct training, seizures can be safely managed by patients and their families within the community. Arguably therefore, PWE who frequently visit the ED might benefit from a self-management intervention that improves their own and their families' confidence and ability in managing seizures. Currently, no such intervention is available for PWE attending the ED. A collaborative approach (patients, carers, health professionals) was adopted to develop a patient-focused, self-management intervention. An existing group-based seizure management course, offered by the Epilepsy Society, was adapted. Collaborative feedback was sought via a base-line document review, one-to-one semi-structured interviews, and focus group discussions. The applied framework provided a systematic approach from development through to implementation. Participant feedback overall was extremely positive. People with epilepsy who visit the ED reported a positive view of epilepsy seizure first aid training and associated educational materials. Their feedback was then used to develop the optimized intervention presented here. Strengths and perceived barriers to successful implementation and participation, as well as the practical and psychosocial benefits, were identified. We describe the developed intervention together with the process followed. This description, while being project-specific, provides a useful template to assist in the development of interventions more generally. Ongoing evaluation will determine the effects of the training intervention on participants' behavior.
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Servicio de Urgencia en Hospital , Epilepsia/terapia , Primeros Auxilios , Personal de Salud/educación , Epilepsia/psicología , Humanos , Autocuidado , Reino UnidoRESUMEN
Attendance at UK Emergency Departments (EDs) for people with epilepsy (PWE) following a seizure can be unnecessary and costly. The characteristics of PWE attending a UK rural district ED in a 12-month period were examined to foster better understanding of relevant psycho-social factors associated with ED use by conducting cross-sectional interviews using standardized questionnaires. Of the total participants (n=46), approximately one-third of the study cohort attended ED on three or more occasions in the 12-month study period and accounted for 65% of total ED attendances reported. Seizure frequency and lower social deprivation status were associated with increased ED attendance while factors such as knowledge of epilepsy, medication management, and stigma were not. Similarities in frequency of repeat attendees were comparable to a study in urban population but other factors varied considerable. Our findings suggest that regular ED attendees may be appropriate for specific enhanced intervention though consideration needs to be given to the fact that population characteristics may vary across regions.
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Servicio de Urgencia en Hospital , Epilepsia/terapia , Población Rural , Adulto , Anciano , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y CuestionariosRESUMEN
OBJECTIVE: The advantages and disadvantages of using "epileptic" as a noun to describe someone with epilepsy have long been debated. Recent high-profile recommendations have stated that the term should not be used, including in English, as it perpetuates stigma. This decision was largely informed by a Brazilian Global Campaign Against Epilepsy study that reported experimental evidence indicating that, with students, the label evokes more negative attitudes than "person with epilepsy". The generalizability of this effect to different countries/cultures, and thus the justification for the recommendations, has never been tested. METHODS: We replicated the Brazilian study in the UK, in English, while also addressing methodological limitations. It was powered to detect the effects reported by the Brazilian study, with 234 students completing a survey regarding epilepsy attitudes. Half were randomized to Group 1 and half to Group 2. In Group 1, patients were referred to as "people/person with epilepsy" within the attitudinal measures, while in Group 2 they were referred to as "epileptic/s". Measures included translations of the questions used in the Brazilian study and the Attitudes and Beliefs about Living with Epilepsy scale. Participants' epilepsy familiarity and knowledge were also assessed. RESULTS: The two groups were comparable in characteristics. A comparison of their responses to the attitude measures revealed no statistically significant or meaningful differences. CONCLUSIONS: In this English replication, the word "epileptic" did not provoke more negative attitudes. This suggests that the effect reported by the Brazilian study might be culturally dependent. Methodological limitations to that study might also be relevant. Our results have implications for the global debate about how negative attitudes towards epilepsy might be addressed. Simply not saying "epileptic" may not promote the positive attitudes towards epilepsy that had been expected. To know how to best refer to those with epilepsy, evidence on the preferences of those actually living with epilepsy is needed.
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Epilepsia/psicología , Estigma Social , Terminología como Asunto , Adolescente , Adulto , Actitud , Brasil , Cultura , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Lenguaje , Masculino , Estudiantes , Reino Unido , Adulto JovenRESUMEN
BACKGROUND AND PURPOSE: A transient ischemic attack (TIA) involves temporary neurological symptoms but leaves a patient symptom-free. Patients are faced with an increased risk for future stroke, and the manifestation of the TIA itself might be experienced as traumatizing. We aimed to investigate the prevalence of posttraumatic stress disorder (PTSD) after TIA and its relation to patients' psychosocial outcome. METHODS: Patients with TIA were prospectively studied, and 3 months after the diagnosis, PTSD, anxiety, depression, quality of life, coping strategies, and medical knowledge were assessed via self-rating instruments. RESULTS: Of 211 patients with TIA, data of 108 patients were complete and only those are reported. Thirty-two (29.6%) patients were classified as having PTSD. This rate is 10× as high as in the general German population. Patients with TIA with PTSD were more likely to show signs of anxiety and depression. PTSD was associated with the use of maladaptive coping strategies, subjectively rated high stroke risk, as well as with younger age. Finally, PTSD and anxiety were associated with decreased mental quality of life. CONCLUSIONS: The experience of TIA increases the risk for PTSD and associated anxiety, depression, and reduced mental quality of life. Because a maladaptive coping style and a subjectively overestimated stroke risk seem to play a crucial role in this adverse progression, the training of adaptive coping strategies and cautious briefing about the realistic stroke risk associated with TIA might be a promising approach. Despite the great loss of patients to follow-up, the results indicate that PTSD after TIA requires increased attention.
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Adaptación Psicológica , Ataque Isquémico Transitorio/epidemiología , Ataque Isquémico Transitorio/psicología , Calidad de Vida/psicología , Trastornos por Estrés Postraumático/epidemiología , Trastornos por Estrés Postraumático/psicología , Adaptación Psicológica/fisiología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Ataque Isquémico Transitorio/diagnóstico , Masculino , Persona de Mediana Edad , Prevalencia , Estudios Prospectivos , Trastornos por Estrés Postraumático/diagnósticoRESUMEN
BACKGROUND: Teaching people with epilepsy to identify and manage seizure triggers, implement strategies to remember to take antiepileptic drugs, implement precautions to minimize risks during seizures, tell others what to do during a seizure and learn what to do during recovery may lead to better self-management. No teaching programme exists for adults with epilepsy in the United Kingdom although a number of surveys have shown patients want more information. METHODS/DESIGN: This is a multicentre, pragmatic, parallel group randomised controlled trial to evaluate the effectiveness and cost-effectiveness of a two-day Self-Management education for epILEpsy (SMILE (UK)), which was originally developed in Germany (MOSES).Four hundred and twenty eight adult patients who attended specialist epilepsy outpatient clinics at 15 NHS participating sites in the previous 12 months, and who fulfil other eligibility criteria will be randomised to receive the intervention (SMILE (UK) course with treatment as usual- TAU) or to have TAU only (control). The primary outcome is the effect on patient reported quality of life (QoL). Secondary outcomes are seizure frequency and psychological distress (anxiety and depression), perceived impact of epilepsy, adherence to medication, management of adverse effects from medication, and improved self-efficacy in management (mastery/control) of epilepsy.Within the trial there will be a nested qualitative study to explore users' views of the intervention, including barriers to participation and the perceived benefits of the intervention. The cost-effectiveness of the intervention will also be assessed. DISCUSSION: This study will provide quantitative and qualitative evidence of the impact of a structured self management programme on quality of life and other aspects of clinical and cost effectiveness in adults with poorly controlled epilepsy. TRIAL REGISTRATION: Current Controlled Trials: ISRCTN57937389.
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Epilepsia/terapia , Educación del Paciente como Asunto/métodos , Autocuidado/métodos , Análisis Costo-Beneficio , Humanos , Educación del Paciente como Asunto/economía , Proyectos de Investigación , Autocuidado/economíaRESUMEN
INTRODUCTION: Adults presenting to the ambulance service for diagnosed epilepsy are often transported to emergency departments (EDs) despite no clinical need. An alternative care pathway (CP) could allow paramedics to divert them from ED and instigate ambulatory care improvements. To identify the most promising CP configuration for subsequent testing, the COLLABORATE project surveyed people with epilepsy and family/friends who had recently used the English ambulance service to elicit preferences for 288 CP configurations for different seizures. This allowed CPs to be ranked according to alignment with service users' preferences. However, as well as being acceptable to users, a CP must be feasible. We thus engaged with paramedics, epilepsy specialists and commissioners to identify the optimal configuration. METHODS: Three Knowledge Exchange workshops completed. Participants considered COLLABORATE's evidence on service users' preferences for the different configurations. Nominal group techniques elicited views on the feasibility of users' preferences according to APEASE criteria. Workshop groups specified the configuration/s considered optimum. Qualitative data was analysed thematically. Utility to users of the specified CP configurations estimated using the COLLABORATE preference survey data. RESULTS: Twenty-seven participants found service users' preferences broadly feasible and outlined delivery recommendations. They identified enough commonality in preferences for different seizures to propose a single CP. Its configuration comprised: 1) patients staying where they were; 2) paramedics having access to medical records; 3) care episodes lasting <6 h; 4) paramedics receiving specialist advice on the day; 5) patient's GP being notified; and 6) a follow-up appointment being arranged with an epilepsy specialist. Preference data indicated higher utility for this configuration compared to current care. DISCUSSION: Stakeholders are of the view that the CP configuration favoured by service users could be NHS feasible. It should be developed and evaluated.
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Ambulancias , Epilepsia , Estudios de Factibilidad , Prioridad del Paciente , Humanos , Adulto , Epilepsia/terapia , Femenino , Masculino , Servicios Médicos de Urgencia , Persona de Mediana Edad , Atención Ambulatoria , Servicio de Urgencia en HospitalRESUMEN
INTRODUCTION: To identify service users' preferences for an alternative care pathway for adults with epilepsy presenting to the ambulance service. METHODS: Extensive formative work (qualitative, survey and knowledge exchange) informed the design of a stated preference discrete choice experiment (DCE). This hypothetical survey was hosted online and consisted of 12 binary choices of alternative care pathways described in terms of: the paramedic's access to medical records/ 'care plan', what happens next (described in terms of conveyance), time, availability of epilepsy specialists today, general practitioner (GP) notification and future contact with epilepsy specialists. DCE scenarios were described as: (i) typical seizure at home. (ii) typical seizure in public, (iii) atypical seizure. Respondents were recruited by a regional English ambulance service and by national public adverts. Participants were randomised to complete 2 of the 3 DCEs. RESULTS: People with epilepsy (PWE; n = 427) and friends/family (n = 167) who completed the survey were representative of the target population. PWE preferred paramedics to have access to medical records, non-conveyance, to avoid lengthy episodes of care, availability of epilepsy specialists today, GP notification, and contact with epilepsy specialists within 2-3 weeks. Significant others (close family members or friends) preferred PWE experiencing an atypical seizure to be conveyed to an Urgent Treatment Centre and preferred shorter times. Optimal configuration of services from service users' perspective far out ranked current practice (rank 230/288 possible configurations). DISCUSSION: Preferences differ to current practice but have minimal variation by seizure type or stakeholder. Further work on feasibility of these pathways in England, and potentially beyond, is required.
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Ambulancias , Servicios Médicos de Urgencia , Epilepsia , Humanos , Adulto , Masculino , Femenino , Persona de Mediana Edad , Epilepsia/terapia , Adulto Joven , Prioridad del Paciente/estadística & datos numéricos , Conducta de Elección/fisiología , Adolescente , Anciano , Encuestas y Cuestionarios , Vías ClínicasRESUMEN
PURPOSE: One fifth of people with established epilepsy attend hospital emergency departments (EDs) and one half are admitted each year. These ED visits are not necessarily required, and unplanned hospitalizations are costly. Reducing avoidable ED visits and admissions is a target in most health services. The development of interventions is, however, challenging. Policymakers lack information about users' characteristics, factors associated with ED use, as well as quality of care. This study provides this information. METHODS: We prospectively recruited patients attending three London EDs for seizures. They completed questionnaires on service use and psychosocial state. KEY FINDINGS: Eighty-five patients were recruited. The mean age was 41; 53% were male. The average number of ED attendances in the prior year (mean 3.2; median 2) exceeded that of other ED users and those with most chronic conditions. ED use was not homogenous, with some patients attending frequently. Compared to the wider epilepsy population, ED attendees experienced more seizures, anxiety, had lower knowledge of epilepsy and its management and greater perceived epilepsy-related stigma. In the previous 12 months, most patients' epilepsy outpatient care was consistent with standard criteria for quality. In descending order, lower knowledge, higher perceived stigma, poorer self-medication management, and seizure frequency were associated with more emergency visits. SIGNIFICANCE: People with epilepsy presenting to EDs reattend frequently. Interventions aiming at reduced ED use by this population should address lower knowledge, stigma, suboptimal self-management, and frequent seizures reported by patients.
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Actitud Frente a la Salud , Servicio de Urgencia en Hospital , Epilepsia/psicología , Hospitales Urbanos , Calidad de Vida , Adolescente , Adulto , Antieméticos , Prescripciones de Medicamentos/estadística & datos numéricos , Epilepsia/complicaciones , Epilepsia/tratamiento farmacológico , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Análisis de Regresión , Estudios Retrospectivos , Autoinforme , Estadísticas no Paramétricas , Estrés Psicológico/etiología , Encuestas y Cuestionarios , Adulto JovenRESUMEN
Euglena gracilis is a source of high-value natural products. A major factor affecting consistent production of Euglena biomass is strain stability. Cryopreservation is a leading strategy for cell-line storage that helps ensure process reproducibility. We developed a simple cryopreservation protocol for heterotrophically cultured Euglena that enables the recovery of cells after 1 year with a cell viability of â 80%. This protocol is suitable for labs interested in the long-term preservation of heterotrophic cultures of Euglena and related species.
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Euglena gracilis , Euglena , Biomasa , Criopreservación , Reproducibilidad de los ResultadosRESUMEN
Triclosan is an antimicrobial chemical present in consumer products that is frequently detected in aquatic environments. In this research, we investigated the role of a common freshwater microalgae species, Euglena gracilis for triclosan uptake and transformation in open-water treatment wetlands. Lab-scale wetland bioreactors were created under various conditions of light (i.e., continuous (white) light, red light, and in the dark), media (i.e., wetland, autoclaved wetland, Milli-Q, and growth media water), and presence or absence of algae. Triclosan and its potential transformation products were identified in the water and algae phases. Triclosan transformation occurred most rapidly with reactors that received continuous (white) light, with pseudo first-order rate constants, k, ranging from 0.035 to 0.292 day-1. This indicates that phototransformation played a major role in triclosan transformation during the day, despite light screening by algae. Algae contributed to the uptake and transformation of triclosan in all reactors, and algae and bacteria both contributed to triclosan biotransformation under dark conditions, representative of nighttime conditions. Some transformation products were formed and further transformed, e.g., triclosan-O-sulfate, methoxy and diglucosyl conjugate of hydroxylated triclosan, and dimethoxy and glucosyl conjugate of 2,4-dichlorophenol, suggesting their minimal accumulation over the 25 days of the experiments. This study shows that the combined action of light, microbes, and algae allows the safe transfer and transformation of triclosan in open-water treatment wetlands.
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Chlorophyta , Euglena gracilis , Microalgas , Triclosán , Contaminantes Químicos del Agua , Chlorophyta/metabolismo , Euglena gracilis/metabolismo , Microalgas/metabolismo , Triclosán/metabolismo , Contaminantes Químicos del Agua/análisisRESUMEN
INTRODUCTION: Ambulances services are asked to further reduce avoidable conveyances to emergency departments (EDs). Risk of Adverse Outcomes after a Suspected Seizure seeks to support this by: (1) clarifying the risks of conveyance and non-conveyance, and (2) developing a risk prediction tool for clinicians to use 'on scene' to estimate the benefits an individual would receive if conveyed to ED and risks if not. METHODS AND ANALYSIS: Mixed-methods, multi-work package (WP) project. For WP1 and WP2 we shall use an existing linked data set that tracks urgent and emergency care (UEC) use of persons served by one English regional ambulance service. Risk tools are specific to clinical scenarios. We shall use suspected seizures in adults as an exemplar.WP1: Form a cohort of patients cared for a seizure by the service during 2019/2020. It, and nested Knowledge Exchange workshops with clinicians and service users, will allow us to: determine the proportions following conveyance and non-conveyance that die and/or recontact UEC system within 3 (/30) days; quantify the proportion of conveyed incidents resulting in 'avoidable ED attendances' (AA); optimise risk tool development; and develop statistical models that, using information available 'on scene', predict the risk of death/recontact with the UEC system within 3 (/30) days and the likelihood of an attendance at ED resulting in an AA.WP2: Form a cohort of patients cared for a seizure during 2021/2022 to 'temporally' validate the WP1 predictive models.WP3: Complete the 'next steps' workshops with stakeholders. Using nominal group techniques, finalise plans to develop the risk tool for clinical use and its evaluation. ETHICS AND DISSEMINATION: WP1a and WP2 will be conducted under database ethical approval (IRAS 307353) and Confidentiality Advisory Group (22/CAG/0019) approval. WP1b and WP3 have approval from the University of Liverpool Central Research Ethics Committee (11450). We shall engage in proactive dissemination and knowledge mobilisation to share findings with stakeholders and maximise evidence usage.