Systematic review of types of safety incidents and the processes and systems used for safety incident reporting in care homes.

AIMS: To identify the safety incident reporting systems and processes used within care homes to capture staff reports of safety incidents, and the types and characteristics of safety incidents captured by safety incident reporting systems. DESIGN: Systematic review following PRISMA reporting guidelines. METHODS: Databases were searched January 2023 for studies published after year 2000, written in English, focus on care homes and incident reporting systems. Data were extracted using a bespoke data extraction tool, and quality was assessed. Data were analysed descriptively and using narrative synthesis, with types and characteristics of incidents analysed using the International Classification for Patient Safety. DATA SOURCES: Databases were CINAHL, MEDLINE, PsycINFO, EMBASE, HMIC, ASSISA, Nursing and Allied Health Database, MedNar and OpenGrey. RESULTS: We identified 8150 papers with 106 studies eligible for inclusion, all conducted in high-income countries. Numerous incident reporting processes and systems were identified. Using modalities, typical incident reporting systems captured all types of incidents via electronic computerized reporting, with reports made by nursing staff and captured information about patient demographics, the incident and post-incident actions, whilst some reporting systems included medication- and falls-specific information. Reports were most often used to summarize data and identify trends. Incidents categories most often were patient behaviour, clinical process/procedure, documentation, medication/intravenous fluids and falls. Various contributing and mitigating factors and actions to reduce risk were identified. The most reported action to reduce risk was to improve safety culture. Individual outcomes were often reported, but social/economic impact of incidents and organizational outcomes were rarely reported. CONCLUSIONS: This review has demonstrated a complex picture of incident reporting in care homes with evidence limited to high-income countries, highlighting a significant knowledge gap. The findings emphasize the central role of nursing staff in reporting safety incidents and the lack of standardized reporting systems and processes. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The findings from this study can inform the development or adaptation of safety incident reporting systems in care home settings, which is of relevance for nurses, care home managers, commissioners and regulators. This can help to improve patient care by identifying common safety issues across various types of care home and inform learning responses, which require further research. IMPACT: This study addresses a gap in the literature on the systems and processes used to report safety incidents in care homes across many countries, and provides a comprehensive overview of safety issues identified via incident reporting. REPORTING METHOD: PRISMA. PATIENT OR PUBLIC CONTRIBUTION: A member of the research team is a patient and public representative, involved from study conception.

Bathing Adaptations in the Homes of Older Adults (BATH-OUT-2): study protocol for a randomised controlled trial, economic evaluation and process evaluation.

BACKGROUND: The onset of disability in bathing is particularly important for older adults as it can be rapidly followed by disability in other daily activities; this may represent a judicious time point for intervention in order to improve health, well-being and associated quality of life. An important environmental and preventative intervention is housing adaptation, but there are often lengthy waiting times for statutory provision. In this randomised controlled trial (RCT), we aim to evaluate the effectiveness and cost-effectiveness of bathing adaptations compared to no adaptations and to explore the factors associated with routine and expedited implementation of bathing adaptations. METHODS: BATH-OUT-2 is a multicentre, two-arm, parallel-group RCT. Adults aged 60 and over who are referred to their local authority for an accessible level access shower will be randomised, using pairwise randomisation, 1:1, to receive either an expedited provision of an accessible shower via the local authority or a usual care control waiting list. Participants will be followed up for a maximum of 12 months and will receive up to four follow-ups in this duration. The primary outcome will be the participant's physical well-being, assessed by the Physical Component Summary score of the Short Form-36 (SF-36), 4 weeks after the intervention group receives the accessible shower. The secondary outcomes include the Mental Component Summary score of the SF-36, self-reported falls, health and social care resource use, health-related quality of life (EQ-5D-5L), social care-related quality of life (Adult Social Care Outcomes Toolkit (ASCOT)), fear of falling (Short Falls Efficacy Scale), independence in bathing (Barthel Index bathing question), independence in daily activities (Barthel Index) and perceived difficulty in bathing (0-100 scale). A mixed-methods process evaluation will comprise interviews with stakeholders and a survey of local authorities with social care responsibilities in England. DISCUSSION: The BATH-OUT-2 trial is designed so that the findings will inform future decisions regarding the provision of bathing adaptations for older adults. This trial has the potential to highlight, and then reduce, health inequalities associated with waiting times for bathing adaptations and to influence policies for older adults. TRIAL REGISTRATION: ISRCTN Registry ISRCTN48563324. Prospectively registered on 09/04/2021.

Challenges and improvements associated with transitions between hospitals and care homes during the COVID-19 pandemic: a qualitative study with care home and healthcare staff in England.

BACKGROUND: Care home residents transitioning from hospital are at risk of receiving poor-quality care with their safety being challenged by the SARS-CoV-2 virus (COVID-19) pandemic. Little is known about how care home staff worked with hospital staff and other healthcare professionals to address these challenges and make improvements to increase patient safety. OBJECTIVE: To gain insight into how the COVID-19 pandemic influenced the safety of transitions between hospital and care home. METHOD: Semi-structured interviews were conducted with care home staff and healthcare professionals involved in hospital to care home transitions including doctors, nurses, paramedics, pharmacists, social workers, and occupational therapists. Commonalities and patterns in the data were identified using thematic analysis. RESULTS: Seventy participants were interviewed. Three themes were developed, first, 'new challenges', described care homes were pressurised to receive hospital patients amidst issues with COVID-19 testing, changes to working practices and contentious media attention, which all impacted staff negatively. Second, 'dehumanisation' described how care home residents were treated, being isolated from others amounted to feelings of being imprisoned, caused fear and engendered negative reactions from families. Third, 'better ways of working' described how health and social care workers developed relationships that improved integration and confidence and benefited care provision. CONCLUSION: The COVID-19 pandemic contributed to and compounded high-risk hospital-to-care home discharges. Government policy failed to support care homes. Rapid discharge objectives exposed a myriad of infection control issues causing inhumane conditions for care home residents. However, staff involved in transitions continued to provide and improve upon care provision.

A pilot examination of the validity of stylus and finger drawing on visuomotor-mediated tests on ACEmobile.

INTRODUCTION: Cognitive assessments, such as the Addenbrooke's Cognitive Examination (ACE-III) and Montreal Cognitive Assessment (MoCA), have been modified for administration using tablet computers. While this offers important advantages for practice, it may also threaten the test validity. The current study sought to test whether administering visuospatial and writing tests using a tablet (finger or stylus drawing), would demonstrate equivalence to traditional pencil and paper administration on ACEmobile. METHOD: This study recruited 26 participants with Alzheimer's disease and 23 healthy older adults. Most participants had low familiarity with using a tablet computer. Participants completed ACEmobile in its entirety, after which they repeated the infinity loops, cube, and clock drawing and sentence writing tests by drawing with a stylus and their finger onto an iPad. Performance on the drawing and writing tests using a stylus, finger, and pencil were compared. RESULTS: Statistically significant differences were observed between the finger and pencil administration on the ACEmobile, with participants performing worse on the finger drawing trials. Differences in scores were most apparent on the sentence writing task. In contrast, no statistical differences were observed between the pencil and stylus administration. DISCUSSION: The findings of this pilot study have important implications for clinical neuropsychology and demonstrate that administering ACEmobile drawing tests with finger drawing is invalid. However, due to the small sample size, a lack of counterbalancing and the narrow range of scores of the dependent variable, we are unable to confidently interpret the validity of stylus drawing. This is an important consideration for future research.

Analysing patient-generated data to understand behaviours and characteristics of women with epilepsy of childbearing years: A prospective cohort study.

BACKGROUND: Women with epilepsy (WWE) are vulnerable in pregnancy, with increased risks to mother and baby including teratogenic risks, especially from valproate. The free EpSMon mobile-phone app allows self-monitoring to afford patient-centred feedback on seizure related risks, such as sudden death in epilepsy (SUDEP) to its users. We sought to generate insights into various seizure related risks and its treatments in WWE of childbearing age (16 to 60 years ) using EpSMon. METHODS: The study utilizes a prospective real-world cohort of 5.5 years. Patient reported data on demographics, medication taken, diagnoses, seizure types and recognised biological, psychological, and social factors of seizure related harm were extracted. Data was stratified according to frequent and infrequent users and those scoring lower and higher risk scores. Multivariate logistic regression and different statistical tests were conducted. FINDINGS: Data from 2158 WWE of childbearing age encompassing 4016 self-assessments were analysed. Overall risk awareness was 25.3% for pregnancy and 54.1% for SUDEP. Frequent users were more aware of pregnancy risks but not of SUDEP. Repeated EpSMon use increased SUDEP awareness but not pregnancy risks. Valproate was used by 11% of WWE, ranging from 6.5% of younger to 31.5% of older women. CONCLUSIONS: The awareness to risks to pregnancy, SUDEP and valproate is low. Valproate is being used by a significant minority. It is imperative risk communication continues for WWE based on their individual situation and need. This is unlikely to be delivered by current clinical models. Digital solutions hold promise but require work done to raise implementation and acceptability.

Workload effects of online consultation implementation from a Job-Characteristics Model perspective: a qualitative study.

BACKGROUND: Online consultation (OC) was previously promoted by the NHS to solve primary care workload challenges. Its implementation was sped up during the COVID-19 pandemic. Workload effects are widely debated. Using a job design perspective may enhance understandings of workload effect. AIM: To qualitatively interrogate the workload experiences of primary care staff involved in OC implementation, using the Job Characteristics Model (JCM) to enable the following: a clearer understanding of the primary care staff psychological experiences; and recommendations informing the design of digital implementations and continued use. DESIGN & SETTING: A qualitative interview study of GP practices using OC within South West England. METHOD: Thirteen participants representing seven practices completed JCM-based semi-structured telephone interviews. An abductive theoretically driven thematic analysis was completed. RESULTS: Participants experienced different tasks pre- and post-implementation of OC, and adapted differently to them. Differences included the following: contact modality change, some administrative staff felt removed from patient contact; and in perceived autonomy, some GPs valued increased workload control. Variation in workload experience was affected by job role and practice context, and the form of and rationale for implementation. Use of a psychological model (the JCM) allowed clearer consideration of the effects of change, as well as OC on workload. CONCLUSION: Psychological theory may be helpful in interpreting workload effects of technology implementation such as OC. Designing change to include consideration of technology effects, psychological experiences, differences across roles, and individual and practice contexts may be important for technology implementation and evaluation of its workload effects.

Keep safe: The when, why and how of epilepsy risk communication.

PURPOSE: Risk communication between clinicians and people with epilepsy (PWE) and their families is under researched. There is limited guidance about when and how to have these discussions. This paper explores the current evidence on quality of risk related conversations in epilepsy and suggests a concept of an evidence-based guideline for person centred structured risk communication. METHODS: A literature search of four electronic database, Ovid Medline, Ovid Embase, PUBMED, and CINAHL, was conducted by two independent reviewers using relevant search terms following the principals of the PRISMA guidance. No limits were applied. Supplementary searches included using backwards and forwards citation searching. A predesigned inclusion and exclusion criteria was administered to the identified results. RESULTS: From 376 results identified, 17 studies met the final criteria of which ten were quantitative, five qualitative and two mixed methods. Perspectives of PWE and clinicians were represented. Extracted data was clustered into three domains: communication initiation (e.g. timing, individual tailoring); communication methods (preference for face to face with neurologists); and communication content (acknowledging the anxiety produced by risk communication, the benefits of being self-aware, normalising risk etc.). No papers focused on conversation structure (e.g. helpful phrases), or the best locations to hold conversations. CONCLUSION: More research is needed to develop structured communication of risk. An attempt has been made to put current evidence into this format. Clearer guidance will enhance clinicians' confidence in communicating person centred epilepsy risk with PWE and their families thus improving outcomes.

Improving epilepsy management with EpSMon: A Templar to highlight the multifaceted challenges of incorporating digital technologies into routine clinical practice.

The digital epilepsy self-monitor (EpSMon) app was developed to address the challenge of improving risk education and management in the UK. The tool, which has emerged out of quality improvement methodology, demonstrates efficacy and has been met with peer-reviewed support and international awards. The focus of this paper is about the development and integration into care of a digital self-assessment epilepsy risk empowerment tool into the UK health system. This paper provides detail into the specific challenges of incorporating a digital epilepsy intervention into routine clinical practice. Despite a strong narrative and evidence, the engagement of commissioners, clinicians, and people with epilepsy is slow. A breakdown of the strategies used, the current governance landscape, and emerging opportunities to develop an informed implementation strategy is provided to support others who seek to create impact with digital solutions for people with epilepsy. This paper is for the Special Issue: Prevent 21: SUDEP Summit - Time to Listen".

Bridging the gap of risk communication and management using the SUDEP and Seizure Safety Checklist.

Sudden unexpected death in epilepsy (SUDEP) is a tragic condition and, despite varied risk levels among the population with epilepsy, is the cause of significant premature mortality. In the last 20 years, though awareness of SUDEP has increased among epilepsy professionals, little has changed with regard to the death rates per se, in rates of informing people with epilepsy (PWE) of their person-centered SUDEP risks, or in the awareness levels of nonepilepsy clinicians, such as, primary care practitioners and hospital doctors. The challenges to make aware and inform PWE have been multifold, in particular, 'when', 'what', and 'how' to tell about SUDEP. Current guidance recognizes that to improve SUDEP rates, it is important to engage proactively with PWE. There is a need to bring shared responsibility between clinicians and PWE to help mitigate the risk of SUDEP. To enable this, a meaningful evidence-based person-centered conversation is essential. The SUDEP and Seizure Safety Checklist ("Checklist") was created to facilitate this. This paper showcases the background, concept, development, implementation, feasibility and validity studies undertaken, challenges, barriers, and limitations of the eight-year Checklist project, which has moved from a single clinic to an international presence. It outlines the need to further reform SUDEP risk communication recognizing the differences between a basic risk message at time of diagnosis as advocated by current good practice guidance and the need for a more person-centered discussion on a regular basis for which the Checklist can be a key catalyst. This article is part of the Special Issue "Prevent 21: SUDEP Summit - Time to Listen".

Methods of usability testing in the development of eHealth applications: A scoping review.

BACKGROUND: The number of eHealth applications has exponentially increased in recent years, with over 325,000 health apps now available on all major app stores. This is in addition to other eHealth applications available on other platforms such as PC software, web sites and even gaming consoles. As with other digital applications, usability is one of the key factors in the successful implementation of eHealth apps. Reviews of the literature on empirical methods of usability testing in eHealth were last published in 2015. In the context of an exponentially increasing rate of App development year on year, an updated review is warranted. OBJECTIVE: To identify, explore, and summarize the current methods used in the usability testing of eHealth applications. METHODS: A scoping review was conducted on literature available from April 2014 up to October 2017. Four databases were searched. Literature was considered for inclusion if it was (1) focused on an eHealth application (which includes websites, PC software, smartphone and tablet applications), (2) provided information about usability of the application, (3) provided empirical results of the usability testing, (4) a full or short paper (not an abstract) published in English after March 2014. We then extracted data pertaining to the usability evaluation processes described in the selected studies. RESULTS: 133 articles met the inclusion criteria. The methods used for usability testing, in decreasing order of frequency were: questionnaires (n = 105), task completion (n = 57), 'Think-Aloud' (n = 45), interviews (n = 37), heuristic testing (n = 18) and focus groups (n = 13). Majority of the studies used one (n = 45) or two (n = 46) methods of testing. The rest used a combination of three (n = 30) or four (n = 12) methods of testing usability. None of the studies used automated mechanisms to test usability. The System Usability Scale (SUS) was the most frequently used questionnaire (n = 44). The ten most frequent health conditions or diseases where eHealth apps were being evaluated for usability were the following: mental health (n = 12), cancer (n = 10), nutrition (n = 10), child health (n = 9), diabetes (n = 9), telemedicine (n = 8), cardiovascular disease (n = 6), HIV (n = 4), health information systems (n = 4) and smoking (n = 4). Further iterations of the app were reported in a minority of the studies (n = 41). The use of the 'Think-Aloud' (Pearson Chi-squared test: χ2 = 11.15, p < 0.05) and heuristic walkthrough (Pearson Chi-squared test: χ2 = 4.48, p < 0.05) were significantly associated with at least one further iteration of the app being developed. CONCLUSION: Although there has been an exponential increase in the number of eHealth apps, the number of studies that have been published that report the results of usability testing on these apps has not increased at an equivalent rate. The number of digital health applications that publish their usability evaluation results remains only a small fraction. Questionnaires are the most prevalent method of evaluating usability in eHealth applications, which provide an overall measure of usability but do not pinpoint the problems that need to be addressed. Qualitative methods may be more useful in this regard. The use of multiple evaluation methods has increased. Automated methods such as eye tracking have not gained traction in evaluating health apps. Further research is needed into which methods are best suited for the different types of eHealth applications, according to their target users and the health conditions being addressed.

Has the Time Come to Stratify and Score SUDEP Risk to Inform People With Epilepsy of Their Changes in Safety?

Recent publication of the American Academy of Neurology SUDEP guidance highlighted the importance to American clinicians of making people with epilepsy aware of SUDEP risk. It is the first guideline to do this in the United States. It follows precedent set out in the UK by National Institute of Clinical Excellence in 2004. While a significant achievement, the lack of clarity of how to deliver this guidance in an enduring and person-centered manner, raises concerns on how its long-term effectiveness in risk mitigation. Shared decision-making with an emphasis on delivering person-centered communication to foster self-management strategies is increasingly recognized as the ideal model of patient-clinician communication in chronic diseases such as epilepsy. The tension between delivering evidence-based risk information, yet, tailoring it to the individual is complex. It needs to incorporate the potential for change not only in seizure factors but also other health and social factors. Safety advice needs to be dynamic and situation sensitive as opposed to a "one off" discussion. As a significant minority of people with epilepsy have drug-resistant seizures, the importance of keeping the advice contextual at different intervals of the person's life cannot be overstated as many of them are managed in primary care. We present some exploratory work, which identifies the need to improve communication at a primary care level and to review risks regularly. Regular reviews using a structured risk factor checklist as a screening tool could identify, sooner, people who's health issues are worsening and justify referrals to specialists.

Sudden unexpected death in epilepsy in children: a focused review of incidence and risk factors.

Sudden unexpected death in epilepsy (SUDEP) in children, although rare, needs critical attention given the tragic nature and devastating consequences for families and caregivers. True incidence is unknown and risk factors are not completely understood, more so in children compared with adults. A focused narrative review of available studies on paediatric SUDEP was undertaken to comprehend its risk factors and to develop strategies to recognise and where possible modify SUDEP risk and ultimately reduce incidence. We reviewed 16 population-based studies from various settings. We found overlapping risk factors from different studies. The prime risk factor is uncontrolled seizures. This review supports the view that children entering adolescence with optimal seizure control could be a key aspect in reducing adult mortality related to SUDEP. Ideally, clinicians would want to be able to predict prospective, individualised SUDEP risk, which is challenging due to a myriad of risk factors and an inherent non-homogeneous paediatric epilepsy population. Nevertheless, an adequate evidence base exists as evidenced by this review to support information giving and communication to support young people with epilepsy and their families in being active partners in recognising and reducing their SUDEP risk. More work particularly in the form of prospective studies and registries are needed to further clarify true incidence which may have been previously underestimated and to update risk factors.

Digital Care in Epilepsy: A Conceptual Framework for Technological Therapies.

Epilepsy is associated with a significant increase in morbidity and mortality. The likelihood is significantly greater for those patients with specific risk factors. Identifying those at greatest risk of injury and providing expert management from the earliest opportunity is made more challenging by the circumstances in which many such patients present. Despite increasing recognition of the importance of earlier identification of those at risk, there is little or no improvement in outcomes over more than 30 years. Despite ever increasing sophistication of drug development and delivery, there has been no meaningful improvement in 1-year seizure freedom rates over this time. However, in the last few years, there has been an increase in patient-triggered interventions based on automated monitoring of indicators and risk factors facilitated by technological advances. The opportunities such approaches provide will only be realized if accompanied by current working practice changes. Replacing traditional follow-up appointments at arbitrary intervals with dynamic interventions, remotely and at the point and place of need provides a better chance of a substantial reduction in seizures for people with epilepsy. Properly implemented, electronic platforms can offer new opportunities to provide expert advice and management from first presentation thus improving outcomes. This perspective paper provides and proposes an informed critical opinion built on current evidence base of an outline techno-therapeutic approach to harnesses these technologies. This conceptual framework is generic, rather than tied to a specific product or solution, and the same generalized approach could be beneficially applied to other long-term conditions.

Improving the quality of cognitive screening assessments: ACEmobile, an iPad-based version of the Addenbrooke's Cognitive Examination-III.

INTRODUCTION: Ensuring reliable administration and reporting of cognitive screening tests are fundamental in establishing good clinical practice and research. This study captured the rate and type of errors in clinical practice, using the Addenbrooke's Cognitive Examination-III (ACE-III), and then the reduction in error rate using a computerized alternative, the ACEmobile app. METHODS: In study 1, we evaluated ACE-III assessments completed in National Health Service (NHS) clinics (n = 87) for administrator error. In study 2, ACEmobile and ACE-III were then evaluated for their ability to capture accurate measurement. RESULTS: In study 1, 78% of clinically administered ACE-IIIs were either scored incorrectly or had arithmetical errors. In study 2, error rates seen in the ACE-III were reduced by 85%-93% using ACEmobile. DISCUSSION: Error rates are ubiquitous in routine clinical use of cognitive screening tests and the ACE-III. ACEmobile provides a framework for supporting reduced administration, scoring, and arithmetical error during cognitive screening.

Sudden unexpected death in epilepsy: measures to reduce risk.

This review looks at the strategies that may help to reduce the risk of sudden unexpected death in epilepsy beyond that of trying to achieve seizure cessation, which is not possible for up to 30% of patients with epilepsy. These strategies include seizure safety checklists, mobile phone technology, telehealth and various devices currently available or in development. We highlight interventions where there is evidence of benefit, and draw attention for the need both to involve patients with epilepsy in risk reduction and to improve communication with those at risk.

Validity and Reliability of the Hearing Handicap Inventory for Elderly: Version Adapted for Use on the Portuguese Population.

BACKGROUND: The use of the Hearing Handicap Inventory for the Elderly (HHIE) questionnaire enables us to measure self-perceived psychosocial handicaps of hearing impairment in the elderly as a supplement to pure-tone audiometry. This screening instrument is widely used and it has been going through adaptations and validations for many languages; all of these versions have kept the validity and reliability of the original version. PURPOSE: To validate the HHIE questionnaire, translated into Portuguese of Portugal, on the Portuguese population. RESEARCH DESIGN: This study is a descriptive correlational qualitative study. The authors performed the translation from English into Portuguese, the linguistic adaptation, and the counter translation. STUDY SAMPLE: Two hundred and sixty patients from the Ear, Nose, and Throat (ENT) Department of Coimbra University Hospitals were divided into a case group (83 individuals) and a control group (177 individuals). INTERVENTION: All of the 260 patients completed the 25 items in the questionnaire and the answers were reviewed for completeness. DATA COLLECTION AND ANALYSIS: The patients volunteered to answer the 25-item HHIE during an ENT appointment. Correlations between each individual item and the total score of the HHIE were tested, and demographic and clinical variables were correlated with the total score, as well. The instrument's reproducibility was assessed using the internal consistency model (Cronbach's alpha). RESULTS: The questions were successfully understood by the participants. There was a significant difference in the HHIE-10 and HHIE-25 total scores between the two groups (p < 0.001). Positive correlations can be seen between the global question and HHIE-10 and HHIE-25. In the regression study, a relationship was observed between the pure-tone average and the HHIE-10 (p < 0.001). Reliability of the instrument was proven by a Cronbach alpha index of 0,79. CONCLUSIONS: The HHIE translation into Portuguese of Portugal maintained the validity of the original version and it is useful to assess the psychosocial handicap of hearing impairment in the elderly.

Developing an Evidence-Based Epilepsy Risk Assessment eHealth Solution: From Concept to Market.

INTRODUCTION: Sudden unexpected death in epilepsy (SUDEP) is possibly the most common cause of death as a result of complications from epilepsy. The need to educate and regularly review risk for all patients with epilepsy is paramount, but rarely delivered in actual clinical practice. Evidence suggests that education around SUDEP and modifiable risk variables translate into better self-management of epilepsy. OBJECTIVE: We aimed to develop and implement an eHealth solution to support education and self-management of risks, in epilepsy. METHODS: We undertook an innovation pathways approach, including problem identification, feasibility assessment, design, implementation, and marketing. People with epilepsy were provided a smartphone-based app (Epilepsy Self-Monitor, EpSMon), which translates the clinical risk assessment tool into an educational and self-monitoring platform, for the self-management of epilepsy. RESULTS: Results include the success of the marketing campaign, and in what areas, with an estimated reach of approximately 38 million people. EpSMon has proved a success in academic and clinical circles, attracting awards and nominations for awards. The number of users of EpSMon, after 3 months, turned out to be lower than expected (N=221). A 4-month trial of the app in use in the United Kingdom, and the success of the marketing strategy, point to necessary changes to the model of delivery and marketing, summarized in this paper. These include the marketing message, user cost model, and need for the availability of an Android version. CONCLUSIONS: EpSMon has proven a success in respect to its reception by academics, clinicians, stakeholder groups, and the patients who use it. There is work needed to promote the model and increase its acceptability/attractiveness, including broadening the marketing message, increasing its availability, and reducing its cost. Future development and promotion of the tool will hopefully inform iterative design of its core features for a receptive audience and lead to increased uptake as it is launched worldwide in 2016.

Steps to prevent SUDEP: the validity of risk factors in the SUDEP and seizure safety checklist: a case control study.

Our objectives were to compare people with epilepsy (PWE) who died of sudden unexpected death in epilepsy (SUDEP) with live controls using the risk factor items of the SUDEP and Seizure Safety Checklist. All 48 SUDEPs of 93 epilepsy deaths which occurred in Cornwall UK 2004-2012 were compared to 220 live controls using the SUDEP and Seizure Safety Checklist, an evidenced based tool used to communicate person centered risk of SUDEP to PWE. The odds ratio for having a specific factor in those who died was compared to controls and ranked according to P value using a sequential Bonferroni correction for multiple comparisons. Of the 17 modifiable and non-modifiable risk factors analyzed 9 were statistically significant of which 7 are potentially modifiable. Well known modifiable factors such as nocturnal monitoring, compliance and sleeping position featured prominently in the risk association. This is the first case control study exploring the risk factors for SUDEP since 2009. The findings are compared to the current considered risk factors as identified in a major recent review. The study further validates certain SUDEP risk factors. It highlights that the majority of risk factors strongly associated with SUDEP are potentially modifiable. There is an emerging profile to rank the risk factors. It furthers the evidence to use structured risk assessment and communication tools such as the SUDEP and Seizure Safety Checklist in daily clinical practice. It highlights key areas for a person centered discussion to empower PWE to mitigate risk.

Safe and sound? A systematic literature review of seizure detection methods for personal use.

PURPOSE: The study aims to review systematically the quality of evidence supporting seizure detection devices. The unpredictable nature of seizures is distressing and disabling for sufferers and carers. If a seizure can be reliably detected then the patient or carer could be alerted. It could help prevent injury and death. METHODS: A literature search was completed. Forty three of 120 studies found using relevant search terms were suitable for systematic review which was done applying pre-agreed criteria using PRISMA guidelines. The papers identified and reviewed were those that could have potential for everyday use of patients in a domestic setting. Studies involving long term use of scalp electrodes to record EEG were excluded on the grounds of unacceptable restriction of daily activities. RESULTS: Most of the devices focused on changes in movement and/or physiological signs and were dependent on an algorithm to determine cut off points. No device was able to detect all seizures and there was an issue with both false positives and missed seizures. Many of the studies involved relatively small numbers of cases or report on only a few seizures. Reports of seizure alert dogs are also considered. CONCLUSION: Seizure detection devices are at a relatively early stage of development and as yet there are no large scale studies or studies that compare the effectiveness of one device against others. The issue of false positive detection rates is important as they are disruptive for both the patient and the carer. Nevertheless, the development of seizure detection devices offers great potential in the management of epilepsy.