Patient perspectives on the acceptability of mHealth technology for remote measurement and management of epilepsy: A qualitative analysis

Simblett, Sara; Bruno, Elisa; Siddi, Sara; Matcham, Faith; Giuliano, Loretta; López, Jorge Hortas; Biondi, Andrea; Curtis, Hannah; Ferrão, José; Polhemus, Ashley; Zappia, Mario; Callén, Antonio; Gamble, Peter; Wykes, Til

doi:10.1016/j.yebeh.2019.05.035

Cited by 39 publications

(36 citation statements)

References 17 publications

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“…In the context of living with a chronic condition primarily characterized by unpredictable events and often not amenable to optimal control, PWE identify many unmet needs that may be supplemented by new technologies in their daily life. 3,24 Studies have highlighted that key needs, for both PWE and caregivers, are (a) improving safety, (b) improving clinical and self-management, and (c) providing reassurance. 3,[24][25][26][27] Figure 1 shows the views of PWE and their caregivers on how digital tools can answer their needs.…”

Section: Caregivers Want From Seizure-detection Devices?mentioning

confidence: 99%

“…3,24 Studies have highlighted that key needs, for both PWE and caregivers, are (a) improving safety, (b) improving clinical and self-management, and (c) providing reassurance. 3,[24][25][26][27] Figure 1 shows the views of PWE and their caregivers on how digital tools can answer their needs. Accuracy and timing of seizure detection are paramount in this context, as false alarms and false short-term predictions can increase distress and have a detrimental impact on PWE and caregivers.…”

Section: Caregivers Want From Seizure-detection Devices?mentioning

confidence: 99%

“…Accuracy and timing of seizure detection are paramount in this context, as false alarms and false short-term predictions can increase distress and have a detrimental impact on PWE and caregivers. 3,24,[27][28][29] Overall, PWE are willing to use wearable devices for continuous health monitoring. 3,30,31 However, a lot of attention should be given to device design in order to address the requirements and preferences of PWE and caregivers, since these factors influence acceptance and long-term engagement, which is essential to allow novel technologies to successfully meet the needs of PWE.…”

Section: Caregivers Want From Seizure-detection Devices?mentioning

confidence: 99%

“…3,30,31 However, a lot of attention should be given to device design in order to address the requirements and preferences of PWE and caregivers, since these factors influence acceptance and long-term engagement, which is essential to allow novel technologies to successfully meet the needs of PWE. Multiple factors have been explored in studies investigating user preferences 3,24,25,[27][28][29][30][31][32][33][34] and, to a lesser extent, direct experiences with digital tools 32,34 ; these are summarized below. Unobtrusiveness is also a desired feature, so that the detection device does not call unwanted attention to the user.…”

Section: Caregivers Want From Seizure-detection Devices?mentioning

confidence: 99%

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Seizure detection at home: Do devices on the market match the needs of people living with epilepsy and their caregivers?

et al. 2020

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In patients with epilepsy, the potential to prevent seizure‐related injuries and to improve the unreliability of seizure self‐report have fostered the development and marketing of numerous seizure detection devices for home use. Understanding the requirements of users (patients and caregivers) is essential to improve adherence and mitigate barriers to the long‐term use of such devices. Here we reviewed the evidence on the needs and preferences of users and provided an overview of currently marketed devices for seizure detection (medically approved or with published evidence for their performance). We then compared devices with known needs. Seizure‐detection devices are expected to improve safety and clinical and self‐management, and to provide reassurance to users. Key factors affecting a device’s usability relate to its design (attractive appearance, low visibility, low intrusiveness), comfort of use, confidentiality of recorded data, and timely support from both technical and clinical ends. High detection sensitivity and low false alarm rates are paramount. Currently marketed devices are focused primarily on the recording of non–electroencephalography (EEG) signals associated with tonic‐clonic seizures, whereas the detection of focal seizures without major motor features remains a clear evidence gap. Moreover, there is paucity of evidence coming from real‐life settings. A joint effort of clinical and nonclinical experts, patients, and caregivers is required to ensure an optimal level of acceptability and usability, which are key aspects for a successful continuous monitoring aimed at seizure detection at home.

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Section: Caregivers Want From Seizure-detection Devices?mentioning

confidence: 99%

Section: Caregivers Want From Seizure-detection Devices?mentioning

confidence: 99%

Section: Caregivers Want From Seizure-detection Devices?mentioning

confidence: 99%

Section: Caregivers Want From Seizure-detection Devices?mentioning

confidence: 99%

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Seizure detection at home: Do devices on the market match the needs of people living with epilepsy and their caregivers?

et al. 2020

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“…The effectiveness of self-management in adults with epilepsy may be influenced by commonly co-occurring medical conditions such as traumatic brain injury, mood disorders, associated cognitive impairment, and/or impulse-control issues. Further complicating selfmanagement plans, high levels of disease-related stigma, driving or mobility restrictions, and social isolation may serve as barriers to attending intensive epilepsy selfmanagement programs and/or medical appointments that occur in-person and/or require a sustained time commitment [20][21][22]. Thus, engagement in self-management and treatment adherence may be positively influenced when self-management programs are informed by knowledge of epilepsy-specific considerations and how these considerations may influence self-management.…”

Section: Introductionmentioning

confidence: 99%

Barriers and facilitators to implementation of epilepsy self-management programs: a systematic review using qualitative evidence synthesis methods

et al. 2020

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Background: Epilepsy affects nearly 50 million people worldwide. Self-management is critical for individuals with epilepsy in order to maintain optimal physical, cognitive, and emotional health. Implementing and adopting a selfmanagement program requires considering many factors at the person, program, and systems levels. We conducted a systematic review of qualitative and mixed-methods studies to identify facilitators and barriers that impact implementation and adoption of self-management programs for adults with epilepsy. Methods: We used established systematic review methodologies for qualitative and mixed-methods studies. We included studies addressing facilitators (i.e., factors that aided) or barriers (i.e., factors that impeded) to implementation and adoption of self-management interventions for adults with epilepsy. We conducted a narrative thematic synthesis to identify facilitators and barriers. Results: The literature search identified 2700 citations; 13 studies met eligibility criteria. Our synthesis identified five themes that categorize facilitators and barriers to successful implementation epilepsy self-management: (1) relevance, intervention content that facilitates acquisition of self-management skills; (2) personalization, intervention components that account for the individual's social, physical, and environmental characteristics; (3) intervention components, components and dosing of the intervention; (4) technology considerations, considerations that account for individual's use, familiarity with, and ownership of technology; and (5) clinician interventionist, role and preparation of the individual who leads intervention. We identified facilitators in 11 of the 13 studies and barriers in 11 of the 13 studies and classified these by social-ecological level (i.e., patient/caregiver, program, site/system).

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A TOGAF based interoperable health information system needs assessment for practitioner–patient interaction

Denhere¹,

Ruhode

Zhou

2023

E J Info Sys Dev Countries

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AbstracteHealth systems have been created in most developing countries to facilitate the functioning of healthcare operations and as such various healthcare applications are existing as fragmented silo systems. Such autonomous standalone systems do not communicate through a network thereby making it a challenge to share healthcare data. Therefore, to re‐engineer health information systems (HISs) to develop interoperable adaptive enterprise architecture (EA) systems for healthcare, the study aimed to discover and capture healthcare interoperability functional imperatives through understanding the expectations of healthcare practitioners and patients on post‐development of an interoperable HIS. Therefore, the study's aim was to determine the HISs interoperability perceived functional expectations by both patients and practitioners in fulfilling their healthcare receipt and provision needs in an integrated healthcare environment, respectively. The Open Group Architecture Framework (TOGAF) was used as the main study framework to guide the classification of the expectations from the HIS by patients and practitioners deriving the needs from the four domains which are, business architecture (BA), application architecture (AA), data architecture (DA), and technical architecture. The study used interviews and questionnaire surveys to collect qualitative and quantitative data respectively. The study used purposive sampling to select interview participants. A total of 19 interviews were conducted with healthcare practitioners. Questionnaires were collected from 71 healthcare practitioners and 143 patients and analyzed quantitatively respectively to understand the most significant needs anticipated in an interoperable HIS. The research targeted age groups of at least 20 years and above. The study discovered that patients and practitioners expect the interoperable healthcare environment to support the acquisition of disease knowledge through healthcare surveillance synergies; create healthcare awareness through coordinated digital interactions; augmentation of healthcare intelligence for patient‐care through the healthcare knowledgebase; allow treatment collaboration by various healthcare practitioners in the healthcare ecosystem and mostly achieving a guaranteed healthcare system security and assurance environment.

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Patient perspectives on the acceptability of mHealth technology for remote measurement and management of epilepsy: A qualitative analysis

Cited by 39 publications

References 17 publications

Seizure detection at home: Do devices on the market match the needs of people living with epilepsy and their caregivers?

Seizure detection at home: Do devices on the market match the needs of people living with epilepsy and their caregivers?

Barriers and facilitators to implementation of epilepsy self-management programs: a systematic review using qualitative evidence synthesis methods

A TOGAF based interoperable health information system needs assessment for practitioner–patient interaction

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