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BACKGROUND: Recent technological advancements offer new ways to monitor and manage epilepsy. The adoption of these devices in routine clinical practice will strongly depend on patient acceptability and usability, with their perspectives being crucial. Previous studies provided feedback from patients, but few explored the experience of them using independently multiple devices independently at home. PURPOSE: The study, assessed through a mixed methods design, the direct experiences of people with epilepsy independently using a non-invasive monitoring system (EEG@HOME) for an extended duration of 6 months, at home. We aimed to investigate factors affecting engagement, gather qualitative insights, and provide recommendations for future home epilepsy monitoring systems. MATERIALS AND METHODS: Adults with epilepsy independently were trained to use a wearable dry EEG system, a wrist-worn device, and a smartphone app for seizure tracking and behaviour monitoring for 6 months at home. Monthly acceptability questionnaires (PSSUQ, SUS) and semi-structured interviews were conducted to explore participant experience. Adherence with the procedure, acceptability scores and systematic thematic analysis of the interviews, focusing on the experience with the procedure, motivation and benefits and opinion about the procedure were assessed. RESULTS: Twelve people with epilepsy took part into the study for an average of 193.8 days (range 61 to 312) with a likelihood of using the system at six months of 83 %. The e-diary and the smartwatch were highly acceptable and preferred to a wearable EEG system (PSSUQ score of 1.9, 1.9, 2.4). Participants showed an acceptable level of adherence with all solutions (Average usage of 63 %, 66 %, 92 %) reporting more difficulties using the EEG twice a day and remembering to complete the daily behavioural questionnaires. Clear information and training, continuous remote support, perceived direct and indirect benefits and the possibility to have a flexible, tailored to daily routine monitoring were defined as key factors to ensure compliance with long-term monitoring systems. CONCLUSIONS: EEG@HOME study demonstrated people with epilepsy' interest and ability in active health monitoring using new technologies. Remote training and support enable independent home use of new non-invasive technologies, but to ensure long term acceptability and usability systems will require to be integrated into patients' routines, include healthcare providers, and offer continuous support and personalized feedback.
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Epilepsia , Adulto , Humanos , Estudos de Viabilidade , Epilepsia/diagnóstico , Pessoal de Saúde , Inquéritos e Questionários , EletroencefalografiaRESUMO
BACKGROUND: Remote measurement technology (RMT) involves the use of wearable devices and smartphone apps to measure health outcomes in everyday life. RMT with feedback in the form of data visual representations can facilitate self-management of chronic health conditions, promote health care engagement, and present opportunities for intervention. Studies to date focus broadly on multiple dimensions of service users' design preferences and RMT user experiences (eg, health variables of perceived importance and perceived quality of medical advice provided) as opposed to data visualization preferences. OBJECTIVE: This study aims to explore data visualization preferences and priorities in RMT, with individuals living with depression, those with epilepsy, and those with multiple sclerosis (MS). METHODS: A triangulated qualitative study comparing and thematically synthesizing focus group discussions with user reviews of existing self-management apps and a systematic review of RMT data visualization preferences. A total of 45 people participated in 6 focus groups across the 3 health conditions (depression, n=17; epilepsy, n=11; and MS, n=17). RESULTS: Thematic analysis validated a major theme around design preferences and recommendations and identified a further four minor themes: (1) data reporting, (2) impact of visualization, (3) moderators of visualization preferences, and (4) system-related factors and features. CONCLUSIONS: When used effectively, data visualizations are valuable, engaging components of RMT. Easy to use and intuitive data visualization design was lauded by individuals with neurological and psychiatric conditions. Apps design needs to consider the unique requirements of service users. Overall, this study offers RMT developers a comprehensive outline of the data visualization preferences of individuals living with depression, epilepsy, and MS.
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Depressão , Epilepsia , Grupos Focais , Esclerose Múltipla , Pesquisa Qualitativa , Humanos , Esclerose Múltipla/psicologia , Epilepsia/psicologia , Depressão/psicologia , Adulto , Feminino , Masculino , Pessoa de Meia-Idade , Aplicativos Móveis , Visualização de Dados , Preferência do Paciente/psicologia , Preferência do Paciente/estatística & dados numéricos , Telemedicina , Idoso , Dispositivos Eletrônicos VestíveisRESUMO
BACKGROUND: Previous mobile health (mHealth) studies have revealed significant links between depression and circadian rhythm features measured via wearables. However, the comprehensive impact of seasonal variations was not fully considered in these studies, potentially biasing interpretations in real-world settings. OBJECTIVE: This study aims to explore the associations between depression severity and wearable-measured circadian rhythms while accounting for seasonal impacts. METHODS: Data were sourced from a large longitudinal mHealth study, wherein participants' depression severity was assessed biweekly using the 8-item Patient Health Questionnaire (PHQ-8), and participants' behaviors, including sleep, step count, and heart rate (HR), were tracked via Fitbit devices for up to 2 years. We extracted 12 circadian rhythm features from the 14-day Fitbit data preceding each PHQ-8 assessment, including cosinor variables, such as HR peak timing (HR acrophase), and nonparametric features, such as the onset of the most active continuous 10-hour period (M10 onset). To investigate the association between depression severity and circadian rhythms while also assessing the seasonal impacts, we used three nested linear mixed-effects models for each circadian rhythm feature: (1) incorporating the PHQ-8 score as an independent variable, (2) adding seasonality, and (3) adding an interaction term between season and the PHQ-8 score. RESULTS: Analyzing 10,018 PHQ-8 records alongside Fitbit data from 543 participants (n=414, 76.2% female; median age 48, IQR 32-58 years), we found that after adjusting for seasonal effects, higher PHQ-8 scores were associated with reduced daily steps (ß=-93.61, P<.001), increased sleep variability (ß=0.96, P<.001), and delayed circadian rhythms (ie, sleep onset: ß=0.55, P=.001; sleep offset: ß=1.12, P<.001; M10 onset: ß=0.73, P=.003; HR acrophase: ß=0.71, P=.001). Notably, the negative association with daily steps was more pronounced in spring (ß of PHQ-8 × spring = -31.51, P=.002) and summer (ß of PHQ-8 × summer = -42.61, P<.001) compared with winter. Additionally, the significant correlation with delayed M10 onset was observed solely in summer (ß of PHQ-8 × summer = 1.06, P=.008). Moreover, compared with winter, participants experienced a shorter sleep duration by 16.6 minutes, an increase in daily steps by 394.5, a delay in M10 onset by 20.5 minutes, and a delay in HR peak time by 67.9 minutes during summer. CONCLUSIONS: Our findings highlight significant seasonal influences on human circadian rhythms and their associations with depression, underscoring the importance of considering seasonal variations in mHealth research for real-world applications. This study also indicates the potential of wearable-measured circadian rhythms as digital biomarkers for depression.
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Ritmo Circadiano , Depressão , Estações do Ano , Dispositivos Eletrônicos Vestíveis , Humanos , Feminino , Ritmo Circadiano/fisiologia , Masculino , Adulto , Estudos Longitudinais , Depressão/fisiopatologia , Pessoa de Meia-Idade , Estudos Retrospectivos , Telemedicina/estatística & dados numéricosRESUMO
BACKGROUND: Major depressive disorder (MDD) affects millions of people worldwide, but timely treatment is not often received owing in part to inaccurate subjective recall and variability in the symptom course. Objective and frequent MDD monitoring can improve subjective recall and help to guide treatment selection. Attempts have been made, with varying degrees of success, to explore the relationship between the measures of depression and passive digital phenotypes (features) extracted from smartphones and wearables devices to remotely and continuously monitor changes in symptomatology. However, a number of challenges exist for the analysis of these data. These include maintaining participant engagement over extended time periods and therefore understanding what constitutes an acceptable threshold of missing data; distinguishing between the cross-sectional and longitudinal relationships for different features to determine their utility in tracking within-individual longitudinal variation or screening individuals at high risk; and understanding the heterogeneity with which depression manifests itself in behavioral patterns quantified by the passive features. OBJECTIVE: We aimed to address these 3 challenges to inform future work in stratified analyses. METHODS: Using smartphone and wearable data collected from 479 participants with MDD, we extracted 21 features capturing mobility, sleep, and smartphone use. We investigated the impact of the number of days of available data on feature quality using the intraclass correlation coefficient and Bland-Altman analysis. We then examined the nature of the correlation between the 8-item Patient Health Questionnaire (PHQ-8) depression scale (measured every 14 days) and the features using the individual-mean correlation, repeated measures correlation, and linear mixed effects model. Furthermore, we stratified the participants based on their behavioral difference, quantified by the features, between periods of high (depression) and low (no depression) PHQ-8 scores using the Gaussian mixture model. RESULTS: We demonstrated that at least 8 (range 2-12) days were needed for reliable calculation of most of the features in the 14-day time window. We observed that features such as sleep onset time correlated better with PHQ-8 scores cross-sectionally than longitudinally, whereas features such as wakefulness after sleep onset correlated well with PHQ-8 longitudinally but worse cross-sectionally. Finally, we found that participants could be separated into 3 distinct clusters according to their behavioral difference between periods of depression and periods of no depression. CONCLUSIONS: This work contributes to our understanding of how these mobile health-derived features are associated with depression symptom severity to inform future work in stratified analyses.
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Transtorno Depressivo Maior , Telemedicina , Dispositivos Eletrônicos Vestíveis , Humanos , Smartphone , Estudos Transversais , Transtorno Depressivo Maior/diagnóstico , Estudos RetrospectivosRESUMO
BACKGROUND: Major Depressive Disorder (MDD) is prevalent, often chronic, and requires ongoing monitoring of symptoms to track response to treatment and identify early indicators of relapse. Remote Measurement Technologies (RMT) provide an opportunity to transform the measurement and management of MDD, via data collected from inbuilt smartphone sensors and wearable devices alongside app-based questionnaires and tasks. A key question for the field is the extent to which participants can adhere to research protocols and the completeness of data collected. We aimed to describe drop out and data completeness in a naturalistic multimodal longitudinal RMT study, in people with a history of recurrent MDD. We further aimed to determine whether those experiencing a depressive relapse at baseline contributed less complete data. METHODS: Remote Assessment of Disease and Relapse - Major Depressive Disorder (RADAR-MDD) is a multi-centre, prospective observational cohort study conducted as part of the Remote Assessment of Disease and Relapse - Central Nervous System (RADAR-CNS) program. People with a history of MDD were provided with a wrist-worn wearable device, and smartphone apps designed to: a) collect data from smartphone sensors; and b) deliver questionnaires, speech tasks, and cognitive assessments. Participants were followed-up for a minimum of 11 months and maximum of 24 months. RESULTS: Individuals with a history of MDD (n = 623) were enrolled in the study,. We report 80% completion rates for primary outcome assessments across all follow-up timepoints. 79.8% of people participated for the maximum amount of time available and 20.2% withdrew prematurely. We found no evidence of an association between the severity of depression symptoms at baseline and the availability of data. In total, 110 participants had > 50% data available across all data types. CONCLUSIONS: RADAR-MDD is the largest multimodal RMT study in the field of mental health. Here, we have shown that collecting RMT data from a clinical population is feasible. We found comparable levels of data availability in active and passive forms of data collection, demonstrating that both are feasible in this patient group.
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Transtorno Depressivo Maior , Aplicativos Móveis , Doença Crônica , Transtorno Depressivo Maior/diagnóstico , Transtorno Depressivo Maior/epidemiologia , Humanos , Estudos Prospectivos , Recidiva , SmartphoneRESUMO
BACKGROUND: The outbreak of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), which causes a clinical illness Covid-19, has had a major impact on mental health globally. Those diagnosed with major depressive disorder (MDD) may be negatively impacted by the global pandemic due to social isolation, feelings of loneliness or lack of access to care. This study seeks to assess the impact of the 1st lockdown - pre-, during and post - in adults with a recent history of MDD across multiple centres. METHODS: This study is a secondary analysis of an on-going cohort study, RADAR-MDD project, a multi-centre study examining the use of remote measurement technology (RMT) in monitoring MDD. Self-reported questionnaire and passive data streams were analysed from participants who had joined the project prior to 1st December 2019 and had completed Patient Health and Self-esteem Questionnaires during the pandemic (n = 252). We used mixed models for repeated measures to estimate trajectories of depressive symptoms, self-esteem, and sleep duration. RESULTS: In our sample of 252 participants, 48% (n = 121) had clinically relevant depressive symptoms shortly before the pandemic. For the sample as a whole, we found no evidence that depressive symptoms or self-esteem changed between pre-, during- and post-lockdown. However, we found evidence that mean sleep duration (in minutes) decreased significantly between during- and post- lockdown (- 12.16; 95% CI - 18.39 to - 5.92; p < 0.001). We also found that those experiencing clinically relevant depressive symptoms shortly before the pandemic showed a decrease in depressive symptoms, self-esteem and sleep duration between pre- and during- lockdown (interaction p = 0.047, p = 0.045 and p < 0.001, respectively) as compared to those who were not. CONCLUSIONS: We identified changes in depressive symptoms and sleep duration over the course of lockdown, some of which varied according to whether participants were experiencing clinically relevant depressive symptoms shortly prior to the pandemic. However, the results of this study suggest that those with MDD do not experience a significant worsening in symptoms during the first months of the Covid - 19 pandemic.
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COVID-19 , Transtorno Depressivo Maior , Adulto , Estudos de Coortes , Controle de Doenças Transmissíveis , Depressão , Transtorno Depressivo Maior/epidemiologia , Humanos , SARS-CoV-2 , TecnologiaRESUMO
Mental health disturbances are common after stroke and linked to a slower recovery. Current face-to-face treatment options are costly and often inaccessible. Technology advances have made it possible to overcome some of these barriers to deliver technology-based mental health interventions remotely, but we do not know how acceptable and feasible they are. This systematic review aims to provide an examination of the acceptability and feasibility of technology-based mental health interventions provided to stroke patients and evaluate any barriers to their adoption. A total of 13 studies were included investigating interventions targeting non-specific mental health, depression or anxiety. The delivery technologies were: video conferencing, computer programmes, telephones, DVDs, CDs, robot-assisted devices, and personal digital assistants. Rates of refusal to participate were low (7.9-25%). Where satisfaction was reported, this was generally high. Many studies achieved high levels of adherence (up to 89.6%). This was lower for some technologies (e.g., robotic assistive devices). Where dropout occurred, this was for reasons including a decline in health as well as technical difficulties. Overall, the literature displays early evidence of using technology to deliver mental health interventions to patients with stroke. This review has identified factors that the design of future studies should take into consideration.
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Saúde Mental , Acidente Vascular Cerebral , Ansiedade , Estudos de Viabilidade , Humanos , Acidente Vascular Cerebral/complicações , TecnologiaRESUMO
BACKGROUND: People with existing mental health conditions may be particularly vulnerable to the psychological effect of the COVID-19 pandemic. But their positive and negative appraisals, and coping behaviour could prevent or ameliorate future problems. OBJECTIVE: To explore the emotional experiences, thought processes and coping behaviours of people with existing mental health problems and carers living through the pandemic. METHODS: UK participants who identified as a mental health service user (N18), a carer (N5) or both (N8) participated in 30-minute semi-structured remote interviews (31 March 2020 to 9 April 2020). The interviews investigated the effects of social distancing and self-isolation on mental health and the ways in which people were coping. Data were analysed using a framework analysis. Three service user researchers charted data into a framework matrix (consisting of three broad categories: "emotional responses", "thoughts" and "behaviours") and then used an inductive process to capture other contextual themes. RESULTS: Common emotional responses were fear, sadness and anger but despite negative emotions and uncertainty appraisals, participants described efforts to cope and maintain their mental wellbeing. This emphasised an increased reliance on technology, which enabled social contact and occupational or leisure activities. Participants also spoke about the importance of continued and adapted mental health service provision, and the advantages and disadvantages associated with changes in their living environment, life schedule and social interactions. CONCLUSION: This study builds on a growing number of qualitative accounts of how mental health service users and carers experienced and coped with extreme social distancing measures early in the COVID-19 pandemic. Rather than a state of helplessness this study contains a clear message of resourcefulness and resilience in the context of fear and uncertainty.
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Adaptação Psicológica , COVID-19/psicologia , Cuidadores/psicologia , Transtornos Mentais/psicologia , Distanciamento Físico , Adolescente , Adulto , Idoso , Cuidadores/estatística & dados numéricos , Feminino , Humanos , Entrevistas como Assunto , Masculino , Transtornos Mentais/terapia , Serviços de Saúde Mental , Pessoa de Meia-Idade , Pesquisa Qualitativa , Reino Unido , Adulto JovemRESUMO
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 (SDâ¯=â¯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.
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Epilepsia/diagnóstico , Monitorização Fisiológica , Aceitação pelo Paciente de Cuidados de Saúde , Dispositivos Eletrônicos Vestíveis , Adulto , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pesquisa QualitativaRESUMO
BACKGROUND: In the absence of a vaccine or effective treatment for COVID-19, countries have adopted nonpharmaceutical interventions (NPIs) such as social distancing and full lockdown. An objective and quantitative means of passively monitoring the impact and response of these interventions at a local level is needed. OBJECTIVE: We aim to explore the utility of the recently developed open-source mobile health platform Remote Assessment of Disease and Relapse (RADAR)-base as a toolbox to rapidly test the effect and response to NPIs intended to limit the spread of COVID-19. METHODS: We analyzed data extracted from smartphone and wearable devices, and managed by the RADAR-base from 1062 participants recruited in Italy, Spain, Denmark, the United Kingdom, and the Netherlands. We derived nine features on a daily basis including time spent at home, maximum distance travelled from home, the maximum number of Bluetooth-enabled nearby devices (as a proxy for physical distancing), step count, average heart rate, sleep duration, bedtime, phone unlock duration, and social app use duration. We performed Kruskal-Wallis tests followed by post hoc Dunn tests to assess differences in these features among baseline, prelockdown, and during lockdown periods. We also studied behavioral differences by age, gender, BMI, and educational background. RESULTS: We were able to quantify expected changes in time spent at home, distance travelled, and the number of nearby Bluetooth-enabled devices between prelockdown and during lockdown periods (P<.001 for all five countries). We saw reduced sociality as measured through mobility features and increased virtual sociality through phone use. People were more active on their phones (P<.001 for Italy, Spain, and the United Kingdom), spending more time using social media apps (P<.001 for Italy, Spain, the United Kingdom, and the Netherlands), particularly around major news events. Furthermore, participants had a lower heart rate (P<.001 for Italy and Spain; P=.02 for Denmark), went to bed later (P<.001 for Italy, Spain, the United Kingdom, and the Netherlands), and slept more (P<.001 for Italy, Spain, and the United Kingdom). We also found that young people had longer homestay than older people during the lockdown and fewer daily steps. Although there was no significant difference between the high and low BMI groups in time spent at home, the low BMI group walked more. CONCLUSIONS: RADAR-base, a freely deployable data collection platform leveraging data from wearables and mobile technologies, can be used to rapidly quantify and provide a holistic view of behavioral changes in response to public health interventions as a result of infectious outbreaks such as COVID-19. RADAR-base may be a viable approach to implementing an early warning system for passively assessing the local compliance to interventions in epidemics and pandemics, and could help countries ease out of lockdown.
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Infecções por Coronavirus/prevenção & controle , Infecções por Coronavirus/psicologia , Coleta de Dados , Pandemias/prevenção & controle , Pneumonia Viral/prevenção & controle , Pneumonia Viral/psicologia , Smartphone , Isolamento Social , Telemedicina , Dispositivos Eletrônicos Vestíveis , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Índice de Massa Corporal , COVID-19 , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/transmissão , Dinamarca/epidemiologia , Feminino , Humanos , Itália/epidemiologia , Masculino , Pessoa de Meia-Idade , Aplicativos Móveis , Monitorização Fisiológica , Países Baixos/epidemiologia , Pneumonia Viral/epidemiologia , Pneumonia Viral/transmissão , Mídias Sociais , Espanha/epidemiologia , Reino Unido/epidemiologia , Adulto JovemRESUMO
BACKGROUND: Innovative uses of mobile health (mHealth) technology for real-time measurement and management of epilepsy may improve the care provided to patients. For instance, seizure detection and quantifying related problems will have an impact on quality of life and improve clinical management for people experiencing frequent and uncontrolled seizures. Engaging patients with mHealth technology is essential, but little is known about patient perspectives on their acceptability. The aim of this study was to conduct an in-depth qualitative analysis of what people with uncontrolled epilepsy think could be the potential uses of mHealth technology and to identify early potential barriers and facilitators to engagement in three European countries. METHOD: Twenty people currently experiencing epileptic seizures took part in five focus groups held across the UK, Italy, and Spain. Participants all completed written consent and a demographic questionnaire prior to the focus group commencing, and each group discussion lasted 60-120â¯min. A coding frame, developed from a systematic review of the previous literature, was used to structure a thematic analysis. We extracted themes and subthemes from the discussions, focusing first on possible uses of mHealth and then the barriers and facilitators to engagement. RESULTS: Participants were interested in mHealth technology as a clinical detection tool, e.g., to aid communication about seizure occurrence with their doctors. Other suggested uses included being able to predict or prevent seizures, and to improve self-management. Key facilitators to engagement were the ability to raise awareness, plan activities better, and improve safety. Key barriers were the potential for increased stigma and anxiety. Using familiar and customizable products could be important moderators of engagement. CONCLUSION: People with uncontrolled epilepsy think that there is a scope for mHealth technology to be useful in healthcare as a detection or prediction tool. The costs will be compared with the benefits when it comes to engagement, and ongoing work with patients and other stakeholders is needed to design practical resources.
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Comunicação , Epilepsia/terapia , Aceitação pelo Paciente de Cuidados de Saúde , Relações Médico-Paciente , Autogestão , Telemedicina , Adulto , Atitude Frente a Saúde , Gerenciamento Clínico , Feminino , Grupos Focais , Teoria Fundamentada , Humanos , Itália , Masculino , Pessoa de Meia-Idade , Participação do Paciente , Qualidade de Vida , Convulsões , Espanha , Reino Unido , Adulto JovemRESUMO
BACKGROUND: Access to internet-enabled technology and Web-based services has grown exponentially in recent decades. This growth potentially excludes some communities and individuals with mental health difficulties, who face a heightened risk of digital exclusion. However, it is unclear what factors may contribute to digital exclusion in this population. OBJECTIVE: To explore in detail the problems of digital exclusion in mental health service users and potential facilitators to overcome them. METHODS: We conducted semistructured interviews with 20 mental health service users who were deemed digitally excluded. We recruited the participants from a large secondary mental health provider in South London, United Kingdom. We employed thematic analysis to identify themes and subthemes relating to historical and extant reasons for digital exclusion and methods of overcoming it. RESULTS: There were three major themes that appeared to maintain digital exclusion: a perceived lack of knowledge, being unable to access the necessary technology and services owing to personal circumstances, and the barriers presented by mental health difficulties. Specific facilitators for overcoming digital exclusion included intrinsic motivation and a personalized learning format that reflects the individual's unique needs and preferences. CONCLUSIONS: Multiple factors contribute to digital exclusion among mental health service users, including material deprivation and mental health difficulties. This means that efforts to overcome digital exclusion must address the multiple deprivations individuals may face in the offline world in addition to their individual mental health needs. Additional facilitators include fostering an intrinsic motivation to overcome digital exclusion and providing a personalized learning format tailored to the individual's knowledge gaps and preferred learning style.
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Serviços de Saúde Mental/normas , Telemedicina/métodos , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
PURPOSE: In recent years, digital technology and wearable devices applied to seizure detection have progressively become available. In this study, we investigated the perspectives of people with epilepsy (PWE), caregivers (CG), and healthcare professionals (HP). We were interested in their current use of digital technology as well as their willingness to use wearables to monitor seizures. We also explored the role of factors influencing engagement with technology, including demographic and clinical characteristics, data confidentiality, need for technical support, and concerns about strain or increased workload. METHODS: An online survey drawing on previous data collected via focus groups was constructed and distributed via a web link. Using logistic regression analyses, demographic, clinical, and other factors identified to influence engagement with technology were correlated with reported use and willingness to use digital technology and wearables for seizure tracking. RESULTS: Eighty-seven surveys were completed, fifty-two (59.7%) by PWE, 13 (14.4%) by CG, and 22 (25.3%) by HP. Responders were familiar with multiple digital technologies, including the Internet, smartphones, and personal computers, and the use of digital services was similar to the UK average. Moreover, age and disease-related factors did not influence access to digital technology. The majority of PWE were willing to use a wearable device for long-term seizure tracking. However, only a limited number of PWE reported current regular use of wearables, and nonusers attributed their choice to uncertainty about the usefulness of this technology in epilepsy care. People with epilepsy envisaged the possibility of understanding their condition better through wearables and considered, with caution, the option to send automatic emergency calls. Despite concerns around accuracy, data confidentiality, and technical support, these factors did not limit PWE's willingness to use digital technology. Caregivers appeared willing to provide support to PWE using wearables and perceived a reduction of their workload and anxiety. Healthcare professionals identified areas of application for digital technologies in their clinical practice, pending an appropriate reorganization of the clinical team to share the burden of data reviewing and handling. CONCLUSIONS: Unlike people who have other chronic health conditions, PWE appeared not to be at risk of digital exclusion. This study highlighted a great interest in the use of wearable technology across epilepsy service users, carers, and healthcare professionals, which was independent of demographic and clinical factors and outpaced data security and technology usability concerns.
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Cuidadores/psicologia , Epilepsia/psicologia , Pessoal de Saúde/psicologia , Satisfação do Paciente , Dispositivos Eletrônicos Vestíveis/psicologia , Adolescente , Adulto , Idoso , Cuidadores/tendências , Epilepsia/diagnóstico , Feminino , Grupos Focais , Pessoal de Saúde/tendências , Humanos , Masculino , Pessoa de Meia-Idade , Monitorização Fisiológica/psicologia , Monitorização Fisiológica/tendências , Smartphone/tendências , Inquéritos e Questionários , Dispositivos Eletrônicos Vestíveis/tendências , Adulto JovemRESUMO
BACKGROUND: Remote measurement technology refers to the use of mobile health technology to track and measure change in health status in real time as part of a person's everyday life. With accurate measurement, remote measurement technology offers the opportunity to augment health care by providing personalized, precise, and preemptive interventions that support insight into patterns of health-related behavior and self-management. However, for successful implementation, users need to be engaged in its use. OBJECTIVE: Our objective was to systematically review the literature to update and extend the understanding of the key barriers to and facilitators of engagement with and use of remote measurement technology, to guide the development of future remote measurement technology resources. METHODS: We conducted a systematic review using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines involving original studies dating back to the last systematic review published in 2014. We included studies if they met the following entry criteria: population (people using remote measurement technology approaches to aid management of health), intervention (remote measurement technology system), comparison group (no comparison group specified), outcomes (qualitative or quantitative evaluation of the barriers to and facilitators of engagement with this system), and study design (randomized controlled trials, feasibility studies, and observational studies). We searched 5 databases (MEDLINE, IEEE Xplore, EMBASE, Web of Science, and the Cochrane Library) for articles published from January 2014 to May 2017. Articles were independently screened by 2 researchers. We extracted study characteristics and conducted a content analysis to define emerging themes to synthesize findings. Formal quality assessments were performed to address risk of bias. RESULTS: A total of 33 studies met inclusion criteria, employing quantitative, qualitative, or mixed-methods designs. Studies were conducted in 10 countries, included male and female participants, with ages ranging from 8 to 95 years, and included both active and passive remote monitoring systems for a diverse range of physical and mental health conditions. However, they were relatively short and had small sample sizes, and reporting of usage statistics was inconsistent. Acceptability of remote measurement technology according to the average percentage of time used (64%-86.5%) and dropout rates (0%-44%) was variable. The barriers and facilitators from the content analysis related to health status, perceived utility and value, motivation, convenience and accessibility, and usability. CONCLUSIONS: The results of this review highlight gaps in the design of studies trialing remote measurement technology, including the use of quantitative assessment of usage and acceptability. Several processes that could facilitate engagement with this technology have been identified and may drive the development of more person-focused remote measurement technology. However, these factors need further testing through carefully designed experimental studies. TRIAL REGISTRATION: International Prospective Register of Systematic Reviews (PROSPERO) CRD42017060644; https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=60644 (Archived by WebCite at http://www.webcitation.org/70K4mThTr).
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Participação do Paciente/métodos , Tecnologia de Sensoriamento Remoto/métodos , Telemedicina/métodos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Adulto JovemRESUMO
BACKGROUND: Some patients admitted to acute stroke units are diagnosed as stroke mimics. A minority have a functional neurological disorder ('functional mimics'). AIMS: To determine the incidence of functional stroke mimics admitted to a hyperacute stroke unit (HASU); to compare their clinical characteristics with medical mimics and stroke cases and obtain information about outcomes. METHODS: Patients admitted to the King's College Hospital HASU between 2011 and 2012 were analysed. Data were obtained from the Stroke Improvement National Audit Programme (SINAP) database. Expert consensus diagnosis was used to classify functional mimics. Follow-up information was obtained from a retrospective case series in primary care over the year following discharge. RESULTS: 1165 patients were admitted to the HASU; 904 patients with stroke (77.6%), 163 medical mimics (14%) and 98 functional mimics (8.4%). Functional mimics were significantly more likely to be female (63.3%) versus 49.7% medical mimics and 45.5% stroke, and younger (mean age (SD)) 49.1 (18.8) than medical mimic (63.5â years (16.7)) and stroke cases (71â years (15.5)). Weakness and slurred speech were the commonest presentations of functional mimics and diagnostic MRI was used more often. Clinician recorded visual and speech symptoms and neglect were significantly more frequent in patients with stroke than either mimic group. Of the 68 functional mimics on whom follow-up information was obtained, 40 (59%) were referred to another service most often for a psychologically-based intervention. CONCLUSIONS: Functional stroke mimics are an important subgroup admitted to acute stroke services and have a distinct demographic and clinical profile. Their outcomes are poorly monitored. Services should be developed to better diagnose and manage these patients.
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Erros de Diagnóstico/estatística & dados numéricos , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/epidemiologia , Idoso , Bases de Dados Factuais , Inglaterra/epidemiologia , Feminino , Hospitalização , Humanos , Incidência , Imageamento por Ressonância Magnética , Masculino , Pessoa de Meia-Idade , Neuroimagem , Estudos RetrospectivosRESUMO
The Dysexecutive Questionnaire (DEX) is a tool for measuring everyday problems experienced with the dysexecutive syndrome. This study investigated the psychometric properties of a revised version of the measure (DEX-R), a comprehensive tool, grounded in current theoretical conceptualisations of frontal lobe function and dysexecutive problems. The aim was to improve measurement of dysexecutive problems following acquired brain injury (ABI). Responses to the DEX-R were collected from 136 men and women who had experienced an ABI (the majority of whom had experienced a stroke or subarachnoid haemorrhage) and where possible, one of their carers or family members (n = 71), who acted as an informant. Rasch analysis techniques were employed to explore the psychometric properties of four newly developed, theoretically distinct subscales based on Stuss model of frontal lobe function and to evaluate the comparative validity and reliability of self and informant ratings of these four subscales. The newly developed subscales were well targeted to the range of dysexecutive problems reported by the current sample and each displayed a good level of internal validity. Both self- and independent-ratings were found to be performing reliably as outcome measures for at least a group-level. This new version of the tool could help guide selection of interventions for different types of dysexecutive problems and provide accurate measurement in neurorehabilitation services.
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Lesões Encefálicas/diagnóstico , Lesões Encefálicas/psicologia , Função Executiva , Testes Neuropsicológicos , Adulto , Idoso , Idoso de 80 Anos ou mais , Lesões Encefálicas/etiologia , Cuidadores , Família , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Modelos Neurológicos , Modelos Psicológicos , Psiconeuroimunologia , Reprodutibilidade dos Testes , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/psicologia , Hemorragia Subaracnóidea/diagnóstico , Hemorragia Subaracnóidea/psicologia , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVE: The importance of coping style factors in the process of emotional adjustment following acquired brain injury (ABI) has been gaining increased attention. To assess ways of coping with distress accurately, clear conceptual definitions and measurement precision is vital. The purpose of this study was to investigate the psychometric properties of a well-known measure of coping, the Coping Inventory for Stressful Situations (CISS), for people who have experienced an ABI; and to modify the CISS, where necessary, to create a more reliable and valid measurement tool for this clinical group. METHODS: Psychometric properties were investigated using Rasch analysis of responses from a sample of adults with ABI (n = 207). The internal consistency reliability and construct validity of the scale were examined. RESULTS: All originally proposed subscales were not valid or reliable and, as such, were incapable of interval-level measurement within this sample - Task: χ(2) (32, N = 207) = 105.1, p < .001; Emotion: χ(2) (32, N = 204) = 121.9, p < .001; Avoidance: χ(2) (32, N = 207) = 66.7, p < .001. Three valid and reliable subscales were derived measuring emotion-, task-, and avoidance-oriented coping styles by removing items that provided the most unreliable information and exploring fit to the Rasch model. CONCLUSIONS: The original version of the CISS may not be a valid and reliable measure of coping style following ABI. Modified subscales of the three distinct coping domains have been proposed that would help to improve measurement of coping style following ABI in future research and clinical practice. PRACTITIONER POINTS: How people cope with difficulties following an ABI has been shown to impact upon emotional outcomes and functional recovery. The original version of the CISS was found to be an imprecise measure of coping following ABI. A modified version of the CISS was found to be a valid and reliable measure of three styles of coping (task-focused, emotion-focused, and avoidance-focused) that conforms to the properties of interval-level measurement as represented by the Rasch model. This structure is in keeping with previous theoretical models of coping. We advise caution about including items (1, 6, 7, 22, 24, 28, 29, 33, 34, and 46) that were found to diverge from the expectations of the Rasch measurement model in total subscale scores for measuring change in coping style. A conversion table for the three modified subscales is included in this paper to convert total raw scores into Rasch transformed logit values. Identifying strengths and weaknesses in coping style could be a means of guiding psychological intervention to promote good recovery following ABI. The sample included mainly people who had experienced non-traumatic brain injuries (e.g., a stroke). This research could be extended to include broader sample of people with differing brain injury aetiologies and neurological disorders.
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Adaptação Psicológica , Lesões Encefálicas/psicologia , Estresse Psicológico/etiologia , Adulto , Idoso , Emoções , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Reprodutibilidade dos Testes , Acidente Vascular Cerebral/psicologia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Multiparametric remote measurement technologies (RMTs), which comprise smartphones and wearable devices, have the potential to revolutionize understanding of the etiology and trajectory of major depressive disorder (MDD). Engagement with RMTs in MDD research is of the utmost importance for the validity of predictive analytical methods and long-term use and can be conceptualized as both objective engagement (data availability) and subjective engagement (system usability and experiential factors). Positioning the design of user interfaces within the theoretical framework of the Behavior Change Wheel can help maximize effectiveness. In-app components containing information from credible sources, visual feedback, and access to support provide an opportunity to promote engagement with RMTs while minimizing team resources. Randomized controlled trials are the gold standard in quantifying the effects of in-app components on engagement with RMTs in patients with MDD. OBJECTIVE: This study aims to evaluate whether a multiparametric RMT system with theoretically informed notifications, visual progress tracking, and access to research team contact details could promote engagement with remote symptom tracking over and above the system as usual. We hypothesized that participants using the adapted app (intervention group) would have higher engagement in symptom monitoring, as measured by objective and subjective engagement. METHODS: A 2-arm, parallel-group randomized controlled trial (participant-blinded) with 1:1 randomization was conducted with 100 participants with MDD over 12 weeks. Participants in both arms used the RADAR-base system, comprising a smartphone app for weekly symptom assessments and a wearable Fitbit device for continuous passive tracking. Participants in the intervention arm (n=50, 50%) also had access to additional in-app components. The primary outcome was objective engagement, measured as the percentage of weekly questionnaires completed during follow-up. The secondary outcomes measured subjective engagement (system engagement, system usability, and emotional self-awareness). RESULTS: The levels of completion of the Patient Health Questionnaire-8 (PHQ-8) were similar between the control (67/97, 69%) and intervention (66/97, 68%) arms (P value for the difference between the arms=.83, 95% CI -9.32 to 11.65). The intervention group participants reported slightly higher user engagement (1.93, 95% CI -1.91 to 5.78), emotional self-awareness (1.13, 95% CI -2.93 to 5.19), and system usability (2.29, 95% CI -5.93 to 10.52) scores than the control group participants at follow-up; however, all CIs were wide and included 0. Process evaluation suggested that participants saw the in-app components as helpful in increasing task completion. CONCLUSIONS: The adapted system did not increase objective or subjective engagement in remote symptom tracking in our research cohort. This study provides an important foundation for understanding engagement with RMTs for research and the methodologies by which this work can be replicated in both community and clinical settings. TRIAL REGISTRATION: ClinicalTrials.gov NCT04972474; https://clinicaltrials.gov/ct2/show/NCT04972474. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/32653.
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Transtorno Depressivo Maior , Aplicativos Móveis , Humanos , Transtorno Depressivo Maior/terapia , Emoções , Monitores de Aptidão Física , Publicação Pré-RegistroRESUMO
PURPOSE: Self-reported records of seizure occurrences, seizure triggers and prodromal symptoms via paper or electronic tools are essential components of epilepsy management. Despite recent studies indicating that this information could hold important clinical value, the adoption of self-reported information in clinical practice is inconsistent and of uncertain value. METHODS: We performed a systematic scoping review of the literature following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. A combination of different digital libraries was used (Embase, MEDLINE, Global Health, PsycINFO). The review examined acceptability, adherence, and ability to self-report or predict seizures, along with innovative applications of self-reported data. We comprehensively outline study characteristics, key results, and identified strengths and limitations. RESULTS: Sixty-eight full-text and two abstracts were included, where a total of 10 electronic tools were identified. Studies revealed high patient interest and acceptable adherence, particularly when tools were well-designed, and data shared with healthcare providers. While patients faced challenges in self-reporting or predicting seizures, a subgroup exhibited higher accuracy and compliance. Studies underscored the value of self-report information in identifying seizure clusters, understanding associations between self-reported seizure frequency and triggers, developing personalized seizure risk, forecasting and prediction models, and the potential benefits when integrated with wearable or implantable devices. Limitations included population selection, repeated dataset use, and the absence of gold standards for seizure counting. CONCLUSION: Personalizing tools to collect self-report information, integrating them with wearable technologies, utilizing collected data for clinical outcomes, and merging them with electronic health records could provide a reliable resource for epilepsy monitoring and management.
RESUMO
BACKGROUND: Prior research has associated spoken language use with depression, yet studies often involve small or non-clinical samples and face challenges in the manual transcription of speech. This paper aimed to automatically identify depression-related topics in speech recordings collected from clinical samples. METHODS: The data included 3919 English free-response speech recordings collected via smartphones from 265 participants with a depression history. We transcribed speech recordings via automatic speech recognition (Whisper tool, OpenAI) and identified principal topics from transcriptions using a deep learning topic model (BERTopic). To identify depression risk topics and understand the context, we compared participants' depression severity and behavioral (extracted from wearable devices) and linguistic (extracted from transcribed texts) characteristics across identified topics. RESULTS: From the 29 topics identified, we identified 6 risk topics for depression: 'No Expectations', 'Sleep', 'Mental Therapy', 'Haircut', 'Studying', and 'Coursework'. Participants mentioning depression risk topics exhibited higher sleep variability, later sleep onset, and fewer daily steps and used fewer words, more negative language, and fewer leisure-related words in their speech recordings. LIMITATIONS: Our findings were derived from a depressed cohort with a specific speech task, potentially limiting the generalizability to non-clinical populations or other speech tasks. Additionally, some topics had small sample sizes, necessitating further validation in larger datasets. CONCLUSION: This study demonstrates that specific speech topics can indicate depression severity. The employed data-driven workflow provides a practical approach for analyzing large-scale speech data collected from real-world settings.