Author response for "The burden of epilepsy and unmet need in people with focal seizures"
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A Digital Intervention for Capturing the Real-Time Health Data Needed for Epilepsy Seizure Forecasting: Protocol for a Formative Co-Design and Usability Study (The ATMOSPHERE Study)
Background: Epilepsy is a chronic neurological disorder affecting individuals globally, marked by recurrent and apparently unpredictable seizures that pose significant challenges, including increased mortality, injuries, and diminished quality of life. Despite advancements in treatments, a significant proportion of people with epilepsy continue to experience uncontrolled seizures. The unpredictability of these events has been identified as a major concern for people with epilepsy, highlighting the need for innovative seizure forecasting technologies. Objective:The ATMOSPHERE study aims to develop and evaluate a digital intervention, using wearable technology and data science, that provides real-time, individualised seizure forecasting for individuals living with epilepsy. This paper reports the protocol for one of the workstreams focusing on the design and testing of a prototype to capture real-time input data needed for predictive modelling. The aims were/are to (1) collaboratively design the prototype (work completed) and (2) conduct an 'in-thewild' study to assess usability and to refine the prototype (planned research). Methods:This study employs a person-based approach to design and usability test a prototype for real-time seizure precipitant data capture. Phase 1 (work completed) involved co-design with individuals living with epilepsy and healthcare professionals. Sessions explored users' requirements for the prototype, followed by iterative design of low fidelity, static prototypes. Phase 2 (planned research) will be an 'in-the-wild' usability study involving the deployment of a mid-fidelity, interactive prototype for four weeks, with the collection of mixed-methods usability data to assess the prototype's real-world application, feasibility, acceptability, and engagement. This phase involves primary participants (adults diagnosed with epilepsy) and, optionally, their nominated significant other. The usability study will run in three waves of deployment and data collection, aiming to recruit five participants per wave, with prototype refinement between waves. Results:The ATMOSPHERE study aims to make a significant step forward in epilepsy management, focusing on the development of a user-centred, non-invasive wearable device for seizure forecasting. Through a collaborative design process and comprehensive usability testing, this research aims to address the critical need for predictive seizure forecasting technologies, offering a promising approach to improving the lives of individuals with epilepsy. By leveraging predictive analytics and personalised machine learning models, this technology seeks to offer a novel approach to managing epilepsy, potentially improving clinical outcomes, including quality of life through increased predictability and seizure management. Conclusions:The ATMOSPHERE study represents a significant step forward in epilepsy management, focusing on the development of a user-centred, non-invasive wearable device for seizure forecasting. Through a collaborative design process and comp...
A Digital Intervention for Capturing the Real-Time Health Data Needed for Epilepsy Seizure Forecasting: Protocol for a Formative Co-Design and Usability Study (The ATMOSPHERE Study)
Background: Epilepsy is a chronic neurological disorder affecting individuals globally, marked by recurrent and apparently unpredictable seizures that pose significant challenges, including increased mortality, injuries, and diminished quality of life. Despite advancements in treatments, a significant proportion of people with epilepsy continue to experience uncontrolled seizures. The unpredictability of these events has been identified as a major concern for people with epilepsy, highlighting the need for innovative seizure forecasting technologies. Objective:The ATMOSPHERE study aims to develop and evaluate a digital intervention, using wearable technology and data science, that provides real-time, individualised seizure forecasting for individuals living with epilepsy. This paper reports the protocol for one of the workstreams focusing on the design and testing of a prototype to capture real-time input data needed for predictive modelling. The aims were/are to (1) collaboratively design the prototype (work completed) and (2) conduct an 'in-thewild' study to assess usability and to refine the prototype (planned research). Methods:This study employs a person-based approach to design and usability test a prototype for real-time seizure precipitant data capture. Phase 1 (work completed) involved co-design with individuals living with epilepsy and healthcare professionals. Sessions explored users' requirements for the prototype, followed by iterative design of low fidelity, static prototypes. Phase 2 (planned research) will be an 'in-the-wild' usability study involving the deployment of a mid-fidelity, interactive prototype for four weeks, with the collection of mixed-methods usability data to assess the prototype's real-world application, feasibility, acceptability, and engagement. This phase involves primary participants (adults diagnosed with epilepsy) and, optionally, their nominated significant other. The usability study will run in three waves of deployment and data collection, aiming to recruit five participants per wave, with prototype refinement between waves. Results:The ATMOSPHERE study aims to make a significant step forward in epilepsy management, focusing on the development of a user-centred, non-invasive wearable device for seizure forecasting. Through a collaborative design process and comprehensive usability testing, this research aims to address the critical need for predictive seizure forecasting technologies, offering a promising approach to improving the lives of individuals with epilepsy. By leveraging predictive analytics and personalised machine learning models, this technology seeks to offer a novel approach to managing epilepsy, potentially improving clinical outcomes, including quality of life through increased predictability and seizure management. Conclusions:The ATMOSPHERE study represents a significant step forward in epilepsy management, focusing on the development of a user-centred, non-invasive wearable device for seizure forecasting. Through a collaborative design process and comp...
A Digital Intervention for Capturing the Real-Time Health Data Needed for Epilepsy Seizure Forecasting: Protocol for a Formative Co-Design and Usability Study (The ATMOSPHERE Study) (Preprint)
BACKGROUND Epilepsy is a chronic neurological disorder affecting individuals globally, marked by recurrent and apparently unpredictable seizures that pose significant challenges, including increased mortality, injuries, and diminished quality of life. Despite advancements in treatments, a significant proportion of people with epilepsy continue to experience uncontrolled seizures. The apparent unpredictability of these events has been identified as a major concern for people with epilepsy, highlighting the need for innovative seizure forecasting technologies. OBJECTIVE The ATMOSPHERE study aimed to develop and evaluate a digital intervention, using wearable technology and data science, that provides real-time, individualized seizure forecasting for individuals living with epilepsy. This paper reports the protocol for one of the workstreams focusing on the design and testing of a prototype to capture real-time input data needed for predictive modeling. The first aim was to collaboratively design the prototype (work completed). The second aim is to conduct an “in-the-wild” study to assess usability and refine the prototype (planned research). METHODS This study uses a person-based approach to design and test the usability of a prototype for real-time seizure precipitant data capture. Phase 1 (work completed) involved co-design with individuals living with epilepsy and health care professionals. Sessions explored users’ requirements for the prototype, followed by iterative design of low-fidelity, static prototypes. Phase 2 (planned research) will be an “in-the-wild” usability study involving the deployment of a mid-fidelity, functional prototype for 4 weeks, with the collection of mixed methods usability data to assess the prototype’s real-world application, feasibility, acceptability, and engagement. This phase involves primary participants (adults diagnosed with epilepsy) and, optionally, their nominated significant other. The usability study will run in 3 rounds of deployment and data collection, aiming to recruit 5 participants per round, with prototype refinement between rounds. RESULTS The phase-1 co-design study engaged 22 individuals, resulting in the development of a mid-fidelity, functional prototype based on identified requirements, including the tracking of evidence-based and personalized seizure precipitants. The upcoming phase-2 usability study is expected to provide insights into the prototype’s real-world usability, identify areas for improvement, and refine the technology for future development. The estimated completion date of phase 2 is the last quarter of 2024. CONCLUSIONS The ATMOSPHERE study aims to make a significant step forward in epilepsy management, focusing on the development of a user-centered, noninvasive wearable device for seizure forecasting. Through a collaborative design process and comprehensive usability testing, this research aims to address the critical need for predictive seizure forecasting technologies, offering a promising approach to improving the lives of individuals with epilepsy. By leveraging predictive analytics and personalized machine learning models, this technology seeks to offer a novel approach to managing epilepsy, potentially improving clinical outcomes, including quality of life, through increased predictability and seizure management. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/60129
Epilepsy, a prevalent neurological disorder, is characterized by chronic seizures resulting from abnormal electrical activity in the brain. Adequate medical treatment allows roughly 70% of patients to enjoy a seizure-free life. However, throughout history, epilepsy has acquired diverse interpretations due to the experienced seizures, transforming the condition from a clinical issue into a social stigma. Therefore, the aim of this review study is to review stigma and psychosocial problems in patients with epilepsy (PwE). For this reason, this study utilises sources from the last ten years and reports current data. As a result of the review, it was found that societal discrimination in PwE arises primarily from inadequate knowledge, misconceptions, and negative attitudes toward the condition. Other contributing factors were include patients’ lower levels of education and income, frequent seizures due to inadequate treatment, age at onset, duration of the disease, depressive symptoms, and lack of social support. Also, it was found that the stigma individuals with epilepsy face plays a pivotal role in exacerbating their psychosocial problems. Unfortunately, stigma and psychosocial challenges appear to be in a vicious circle, with an increase in one increasing the other. Stigmatized patients tended to isolate themselves from society, further increasing their likelihood of experiencing a depressive mood or psychiatric comorbidity. Consequently, individuals with epilepsy encounter difficulties in various domains such as marriage, work, education, and personal life. Considering these significant psychosocial burdens, it is essential to recognize that epilepsy surpasses its medical implications. Unfortunately, current efforts to reduce stigma remain insufficient, necessitating urgent and comprehensive measures to address this issue.
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