A Fully Integrated Real-Time Detection, Diagnosis, and Control of Community Diarrheal Disease Clusters and Outbreaks (the INTEGRATE Project): Protocol for an Enhanced Surveillance System.

BACKGROUND: Diarrheal disease, which affects 1 in 4 people in the United Kingdom annually, is the most common cause of outbreaks in community and health care settings. Traditional surveillance methods tend to detect point-source outbreaks of diarrhea and vomiting; they are less effective at identifying low-level and intermittent food supply contamination. Furthermore, it can take up to 9 weeks for infections to be confirmed, reducing slow-burn outbreak recognition, potentially impacting hundreds or thousands of people over wide geographical areas. There is a need to address fundamental problems in traditional diarrheal disease surveillance because of underreporting and subsequent unconfirmed infection by patients and general practitioners (GPs); varying submission practices and selective testing of samples in laboratories; limitations in traditional microbiological diagnostics, meaning that the timeliness of sample testing and etiology of most cases remains unknown; and poorly integrated human and animal surveillance systems, meaning that identification of zoonoses is delayed or missed. OBJECTIVE: This study aims to detect anomalous patterns in the incidence of gastrointestinal disease in the (human) community; to target sampling; to test traditional diagnostic methods against rapid, modern, and sensitive molecular and genomic microbiology methods that identify and characterize responsible pathogens rapidly and more completely; and to determine the cost-effectiveness of rapid, modern, sensitive molecular and genomic microbiology methods. METHODS: Syndromic surveillance will be used to aid identification of anomalous patterns in microbiological events based on temporal associations, demographic similarities among patients and animals, and changes in trends in acute gastroenteritis cases using a point process statistical model. Stool samples will be obtained from patients' consulting GPs, to improve the timeliness of cluster detection and characterize the pathogens responsible, allowing health protection professionals to investigate and control outbreaks quickly, limiting their size and impact. The cost-effectiveness of the proposed system will be examined using formal cost-utility analysis to inform decisions on national implementation. RESULTS: The project commenced on April 1, 2013. Favorable approval was obtained from the Research Ethics Committee on June 15, 2015, and the first patient was recruited on October 13, 2015, with 1407 patients recruited and samples processed using traditional laboratory techniques as of March 2017. CONCLUSIONS: The overall aim of this study is to create a new One Health paradigm for detecting and investigating diarrhea and vomiting in the community in near-real time, shifting from passive human surveillance and management of laboratory-confirmed infection toward an integrated, interdisciplinary enhanced surveillance system including management of people with symptoms. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/13941.

Assessing Treatment Fidelity within an Epilepsy Randomized Controlled Trial: Seizure First Aid Training for People with Epilepsy Who Visit Emergency Departments.

PURPOSE: To measure fidelity with which a group seizure first aid training intervention was delivered within a pilot randomized controlled trial underway in the UK for adults with epilepsy who visit emergency departments (ED) and informal carers. Estimates of its effects, including on ED use, will be produced by the trial. Whilst hardly ever reported for trials of epilepsy interventions-only one publication on this topic exists-this study provides the information on treatment fidelity necessary to allow the trial's estimates to be accurately interpreted. This rare worked example of how fidelity can be assessed could also provide guidance sought by neurology trialists on how to assess fidelity. METHODS: 53 patients who had visited ED on ≥2 occasions in prior year were recruited for the trial; 26 were randomized to the intervention. 7 intervention courses were delivered for them by one facilitator. Using audio recordings, treatment "adherence" and "competence" were assessed. Adherence was assessed by a checklist of the items comprising the intervention. Using computer software, competence was measured by calculating facilitator speech during the intervention (didacticism). Interrater reliability was evaluated by two independent raters assessing each course using the measures and their ratings being compared. RESULTS: The fidelity measures were found to be reliable. For the adherence instrument, raters agreed 96% of the time, PABAK-OS kappa 0.91. For didacticism, raters' scores had an intraclass coefficient of 0.96. In terms of treatment fidelity, not only were courses found to have been delivered with excellent adherence (88% of its items were fully delivered) but also as intended they were highly interactive, with the facilitator speaking for, on average, 55% of course time. CONCLUSIONS: The fidelity measures used were reliable and showed that the intervention was delivered as attended. Therefore, any estimates of intervention effect will not be influenced by poor implementation fidelity.

Perceptions of emergency care using a seizure care pathway for patients presenting to emergency departments in the North West of England following a seizure: a qualitative study.

OBJECTIVES: To establish the appropriateness of a previously developed seizure care pathway by exploring to what extent patients valued the intervention and perceived it as being helpful or not. DESIGN: Qualitative descriptive study, using semistructured, in-depth interviews and thematic template analysis, theoretically informed by critical realism. SETTING: In North West England, a seizure care pathway has been developed in collaboration with a specialist neurology hospital to support clinical management of seizure patients on initial presentation to the emergency department (ED), as well as access to follow-up services on discharge, with the aim of improving patient experience. Three National Health Service (NHS) EDs and a specialist neurology hospital provided the setting for participant recruitment to this study. PARTICIPANTS: 181 patients fulfilled the inclusion criterion with 27 participants taking part following their experience of an ED attendance and outpatient follow-up appointment after a seizure. RESULTS: Five main themes emerged from the data: decision to seek care, responsiveness of services, waiting and efficiency, information and support, and care continuity. Two integrative themes spanned the whole study: lived experience and communication. This paper reports on two of the main themes: care continuity, and waiting and efficiency. The average time between ED presentation and interview completion was 100 days. CONCLUSIONS: Implementation of a care pathway is a complex intervention, requiring long-term follow-up to assess its integration into practice and effectiveness in service improvement. The seizure care pathway has the potential to enhance the care of seizure patients in the ED and at follow-up by improving continuity and management of care. The study demonstrates good aspects of the seizure care pathway as observed by patients and also recognises shortcomings within current service provision and questions what the NHS should and should not be delivering. Our study suggests various ways to enhance the pathway at service level to potentially drive improved patient experience.

Developing and assessing the acceptability of an epilepsy first aid training intervention for patients who visit UK emergency departments: A multi-method study of patients and professionals.

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.

'Epileptic', 'epileptic person' or 'person with epilepsy'? Bringing quantitative and qualitative evidence on the views of UK patients and carers to the terminology debate.

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.

Paramedics' views on their seizure management learning needs: a qualitative study in England.

INTRODUCTION: The UK ambulance service often attends to suspected seizures. Most persons attended to will not require the facilities of a hospital emergency department (ED) and so should be managed at scene or by using alternative care pathways. Most though are transported to ED. One factor that helps explain this is paramedics can have low confidence in managing seizures. OBJECTIVES: With a view to ultimately developing additional seizure management training for practicing paramedics, we explored their learning needs, delivery preferences and potential drivers and barriers to uptake and effectiveness. DESIGN AND SETTING: Semistructured interviews were conducted with a purposive sample of paramedics from the English ambulance service. Interviews were transcribed and thematically analysed. PARTICIPANTS: A diverse sample of 19 professionals was recruited from 5 different ambulance NHS trusts and the College of Paramedics. RESULTS: Participants said seizure management was neglected within basic and postregistration paramedic training. Most welcomed additional learning opportunities and identified gaps in knowledge. This included how to differentiate between seizure types and patients that do and do not need ED. Practical, interactive e-learning was deemed the most preferable delivery format. To allow paramedics to fully implement any increase in skill resulting from training, organisational and structural changes were said to be needed. This includes not penalising paramedics for likely spending longer on scene. CONCLUSIONS: This study provides the first evidence on the learning needs and preferences of paramedics regarding seizures. It can be used to inform the development of a bespoke training programme for paramedics. Future research should develop and then assess the benefit such training has on paramedic confidence and on the quality of care they offer to seizure patients.

Qualitative study of paramedics' experiences of managing seizures: a national perspective from England.

OBJECTIVES: The UK ambulance service is expected to now manage more patients in the community and avoid unnecessary transportations to hospital emergency departments (ED). Most people it attends who have experienced seizures have established epilepsy, have experienced uncomplicated seizures and so do not require the full facilities of an ED. Despite this, most are transported there. To understand why, we explored paramedics' experiences of managing seizures. DESIGN AND SETTING: Semistructured interviews were conducted with a purposive sample of paramedics from the English ambulance service. Interviews were transcribed and thematically analysed. PARTICIPANTS: A diverse sample of 19 professionals was recruited from 5 different ambulance NHS trusts and the College of Paramedics. RESULTS: Participants' confirmed how most seizure patients attended to do not clinically require an ED. They explained, however, that a number of factors influence their care decisions and create a momentum for these patients to still be taken. Of particular importance was the lack of access paramedics have to background medical information on patients. This, and the limited seizure training paramedics receive, meant paramedics often cannot interpret with confidence the normality of a seizure presentation and so transport patients out of precaution. The restricted time paramedics are expected to spend 'on scene' due to the way the ambulance services' performance is measured and that are few alternative care pathways which can be used for seizure patients also made conveyance likely. CONCLUSIONS: Paramedics are working within a system that does not currently facilitate non-conveyance of seizure patients. Organisational, structural, professional and educational factors impact care decisions and means transportation to ED remains the default option. Improving paramedics access to medical histories, their seizure management training and developing performance measures for the service that incentivise care that is cost-effective for all of the health service might reduce unnecessary conveyances to ED.

Stroke rehabilitation: an agenda for development.

BACKGROUND: This literature review explores the potential for the development of nursing practice in stroke rehabilitation based on the perceptions and experiences of patients directly affected by stroke. CONCLUSION: Research relating to the experiences of patients affected by the disease identifies the importance of social and psychological consequences of stroke. Nurses have the capacity to develop innovative interventions to ensure these issues are addressed in clinical practice.