Key Drivers and Facilitators of the Choice to Use mHealth Technology in People With Neurological Conditions: Observational Study.

BACKGROUND: There is increasing interest in the potential uses of mobile health (mHealth) technologies, such as wearable biosensors, as supplements for the care of people with neurological conditions. However, adherence is low, especially over long periods. If people are to benefit from these resources, we need a better long-term understanding of what influences patient engagement. Previous research suggests that engagement is moderated by several barriers and facilitators, but their relative importance is unknown. OBJECTIVE: To determine preferences and the relative importance of user-generated factors influencing engagement with mHealth technologies for 2 common neurological conditions with a relapsing-remitting course: multiple sclerosis (MS) and epilepsy. METHODS: In a discrete choice experiment, people with a diagnosis of MS (n=141) or epilepsy (n=175) were asked to select their preferred technology from a series of 8 vignettes with 4 characteristics: privacy, clinical support, established benefit, and device accuracy; each of these characteristics was greater or lower in each vignette. These characteristics had previously been emphasized by people with MS and or epilepsy as influencing engagement with technology. Mixed multinomial logistic regression models were used to establish which characteristics were most likely to affect engagement. Subgroup analyses explored the effects of demographic factors (such as age, gender, and education), acceptance of and familiarity with mobile technology, neurological diagnosis (MS or epilepsy), and symptoms that could influence motivation (such as depression). RESULTS: Analysis of the responses to the discrete choice experiment validated previous qualitative findings that a higher level of privacy, greater clinical support, increased perceived benefit, and better device accuracy are important to people with a neurological condition. Accuracy was perceived as the most important factor, followed by privacy. Clinical support was the least valued of the attributes. People were prepared to trade a modest amount of accuracy to achieve an improvement in privacy, but less likely to make this compromise for other factors. The type of neurological condition (epilepsy or MS) did not influence these preferences, nor did the age, gender, or mental health status of the participants. Those who were less accepting of technology were the most concerned about privacy and those with a lower level of education were prepared to trade accuracy for more clinical support. CONCLUSIONS: For people with neurological conditions such as epilepsy and MS, accuracy (ie, the ability to detect symptoms) is of the greatest interest. However, there are individual differences, and people who are less accepting of technology may need far greater reassurance about data privacy. People with lower levels of education value greater clinician involvement. These patient preferences should be considered when designing mHealth technologies.

Remote Assessment of Disease and Relapse in Epilepsy: Protocol for a Multicenter Prospective Cohort Study.

BACKGROUND: In recent years, a growing body of literature has highlighted the role of wearable and mobile remote measurement technology (RMT) applied to seizure detection in hospital settings, whereas more limited evidence has been produced in the community setting. In clinical practice, seizure assessment typically relies on self-report, which is known to be highly unreliable. Moreover, most people with epilepsy self-identify factors that lead to increased seizure likelihood, including mood, behavior, sleep pattern, and cognitive alterations, all of which are amenable to measurement via multiparametric RMT. OBJECTIVE: The primary aim of this multicenter prospective cohort study is to assess the usability, feasibility, and acceptability of RMT in the community setting. In addition, this study aims to determine whether multiparametric RMT collected in populations with epilepsy can prospectively estimate variations in seizure occurrence and other outcomes, including seizure frequency, quality of life, and comorbidities. METHODS: People with a diagnosis of pharmacoresistant epilepsy will be recruited in London, United Kingdom, and Freiburg, Germany. Participants will be asked to wear a wrist-worn device and download ad hoc apps developed on their smartphones. The apps will be used to collect data related to sleep, physical activity, stress, mood, social interaction, speech patterns, and cognitive function, both passively from existing smartphone sensors (passive remote measurement technology [pRMT]) and actively via questionnaires, tasks, and assessments (active remote measurement technology [aRMT]). Data will be collected continuously for 6 months and streamed to the Remote Assessment of Disease and Relapse-base (RADAR-base) server. RESULTS: The RADAR Central Nervous System project received funding in 2015 from the Innovative Medicines Initiative 2 Joint Undertaking under Grant Agreement No. 115902. This Joint Undertaking receives support from the European Union's Horizon 2020 research and innovation program and European Federation of Pharmaceutical Industries and Associations. Ethical approval was obtained in London from the Bromley Research Ethics Committee (research ethics committee reference: 19/LO/1884) in January 2020. The first participant was enrolled on September 30, 2020. Data will be collected until September 30, 2021. The results are expected to be published at the beginning of 2022. CONCLUSIONS: RADAR Epilepsy aims at developing a framework of continuous data collection intended to identify ictal and preictal states through the use of aRMT and pRMT in the real-life environment. The study was specifically designed to evaluate the clinical usefulness of the data collected via new technologies and compliance, technology acceptability, and usability for patients. These are key aspects to successful adoption and implementation of RMT as a new way to measure and manage long-term disorders. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/21840.

Patients' experience of wearing multimodal sensor devices intended to detect epileptic seizures: A qualitative analysis.

BACKGROUND: The health management of patients with epilepsy could be improved by wearing devices that reliably detect when epileptic seizures happen. For the devices to be widely adopted, they must be acceptable and easy to use for patients, and their views are very important. Previous studies have collected feedback from patients on hypothetical devices, but very few have examined experience of wearing actual devices. PURPOSE: This study assessed the first-hand experiences of people with epilepsy using wearable devices, continuously over a period of time. The aim was to understand how acceptable and easy they were to use, and whether it is reasonable to expect that people will use them. MATERIALS AND METHODS: Adults with a diagnosis of epilepsy admitted routinely to a hospital epilepsy monitoring unit were asked to wear one, or more, wearable biosensor devices, tested for seizure detection. The devices are designed to continuously monitor and record signals from the body (biosignals). Participants completed semistructured interviews about their experiences of wearing the device(s). A systematic thematic analysis extracted themes from the interviews, focusing on acceptability and usability. Feedback was organized into (1) participants' experiences of the devices, any support they required and reasons for stopping wearing them; (2) their thoughts about using this technology outside a hospital setting. RESULTS: Twenty-one people with epilepsy wore one, or more, wearable devices for an average of 112.81 (SD = 71.83) hours. Participants found the devices convenient, and had no problem wearing them in hospital or sharing the data collected from them with the researchers and medical professionals. However, the presence of wires, bulky size, discomfort, and need for support, moderated experience. Participants' thoughts about wearing them in everyday life were strongly influenced by how visible and perceived accuracy. Willingness to use a smartphone app to complete questionnaires depended on the frequency, number of questions, and support. CONCLUSIONS: Overall, this work provides evidence about the feasibility and acceptability of using wearable devices to monitor seizure activity in people with epilepsy. Key barriers and facilitators to use while in hospital and hypothetical use in everyday life were identified and will be helpful for guiding future implementation.

Men with epilepsy--the lost tribe? Results of a nationwide survey of men with epilepsy living in the UK.

The incidence of epilepsy is the same in men and women yet more time and energy has been expended on "women's issues" in recent times. In 2004, Epilepsy Action (The British Epilepsy Association) conducted a nationwide survey of men with epilepsy (MWE), who had contacted their helpline in the previous year. The men were comfortable discussing their epilepsy and confident in asking for information. They felt keenly the lack of driving privileges and the type of work available to them. A majority felt the condition adversely affected their self-esteem and quality of life. Most men expressed satisfaction with the quality of care and information they got from their general practitioners and their neurologist.