Demonstrating the feasibility of digital health to support pediatric patients in South Africa

Abstract Objective Resources for management of epilepsy in Africa are extremely limited reinforcing the need to develop innovative strategies for optimizing care. Studies have shown that the prevalence of epilepsy in low‐ and middle‐income countries is substantially greater than in more resourced co...

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Autores principales:	Elin Haf Davies, Karen Fieggen, Jo Wilmshurst, Obuchinezia Anyanwu, Richard Joseph Burman, Sandra Komarzynski
Formato:	article
Lenguaje:	EN
Publicado:	Wiley 2021
Materias:	feasibility mobile health refractory epilepsy wearable technology Neurology. Diseases of the nervous system RC346-429
Acceso en línea:	https://doaj.org/article/c5dd67cb6da64877a94548fe1a940ae4
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spelling	oai:doaj.org-article:c5dd67cb6da64877a94548fe1a940ae42021-12-01T06:09:19ZDemonstrating the feasibility of digital health to support pediatric patients in South Africa2470-923910.1002/epi4.12527https://doaj.org/article/c5dd67cb6da64877a94548fe1a940ae42021-12-01T00:00:00Zhttps://doi.org/10.1002/epi4.12527https://doaj.org/toc/2470-9239Abstract Objective Resources for management of epilepsy in Africa are extremely limited reinforcing the need to develop innovative strategies for optimizing care. Studies have shown that the prevalence of epilepsy in low‐ and middle‐income countries is substantially greater than in more resourced countries. The objective of this report was to demonstrate that mobile Health (mHealth) technologies have the potential to improve the management of epilepsy in Africa. Methods The feasibility of technology‐based home monitoring was investigated in an observational study of 40 children with refractory epilepsy or epilepsy associated with intellectual disability and/or behavior difficulties in South Africa. Technology‐based home monitoring was implemented for six months. Physical activity, sleep, and heart rate were continuously monitored with a wearable device. Caregivers completed regular mobile Patient Reported Outcomes (mPROs) and reported seizures and ad hoc events using a dedicated app. Feasibility was assessed and descriptively measured for recruitment, retention, and engagement of the participants. Results The mHealth technology was able to capture important information that gives an impression of the overall experience of the children and their caregivers. Thirty‐seven participants (94.9%) reported at least one clinical event. Seventy‐nine percent of caregivers reported seizure events in their children, which were the primary event anticipated. Median engagement with the wearable device and monthly mPROs was 30.8% and 57.1%, respectively. However, most participants (87%) had to be given smartphones for them to have Bluetooth capabilities and access to the study app. Tolerability to the device was impacted by the difficult living circumstances of caregivers that induced fear of loss or theft. Significance The study showed how the use of remote patient monitoring in the form of mHealth can benefit epilepsy patients, despite highly variable engagement with the technology. The combination of mPROs and wearable devices generated informative datasets that will allow clinicians but also the children and their caregivers to better understand and manage the disease.Elin Haf DaviesKaren FieggenJo WilmshurstObuchinezia AnyanwuRichard Joseph BurmanSandra KomarzynskiWileyarticlefeasibilitymobile healthrefractory epilepsywearable technologyNeurology. Diseases of the nervous systemRC346-429ENEpilepsia Open, Vol 6, Iss 4, Pp 653-662 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	feasibility mobile health refractory epilepsy wearable technology Neurology. Diseases of the nervous system RC346-429
spellingShingle	feasibility mobile health refractory epilepsy wearable technology Neurology. Diseases of the nervous system RC346-429 Elin Haf Davies Karen Fieggen Jo Wilmshurst Obuchinezia Anyanwu Richard Joseph Burman Sandra Komarzynski Demonstrating the feasibility of digital health to support pediatric patients in South Africa
description	Abstract Objective Resources for management of epilepsy in Africa are extremely limited reinforcing the need to develop innovative strategies for optimizing care. Studies have shown that the prevalence of epilepsy in low‐ and middle‐income countries is substantially greater than in more resourced countries. The objective of this report was to demonstrate that mobile Health (mHealth) technologies have the potential to improve the management of epilepsy in Africa. Methods The feasibility of technology‐based home monitoring was investigated in an observational study of 40 children with refractory epilepsy or epilepsy associated with intellectual disability and/or behavior difficulties in South Africa. Technology‐based home monitoring was implemented for six months. Physical activity, sleep, and heart rate were continuously monitored with a wearable device. Caregivers completed regular mobile Patient Reported Outcomes (mPROs) and reported seizures and ad hoc events using a dedicated app. Feasibility was assessed and descriptively measured for recruitment, retention, and engagement of the participants. Results The mHealth technology was able to capture important information that gives an impression of the overall experience of the children and their caregivers. Thirty‐seven participants (94.9%) reported at least one clinical event. Seventy‐nine percent of caregivers reported seizure events in their children, which were the primary event anticipated. Median engagement with the wearable device and monthly mPROs was 30.8% and 57.1%, respectively. However, most participants (87%) had to be given smartphones for them to have Bluetooth capabilities and access to the study app. Tolerability to the device was impacted by the difficult living circumstances of caregivers that induced fear of loss or theft. Significance The study showed how the use of remote patient monitoring in the form of mHealth can benefit epilepsy patients, despite highly variable engagement with the technology. The combination of mPROs and wearable devices generated informative datasets that will allow clinicians but also the children and their caregivers to better understand and manage the disease.
format	article
author	Elin Haf Davies Karen Fieggen Jo Wilmshurst Obuchinezia Anyanwu Richard Joseph Burman Sandra Komarzynski
author_facet	Elin Haf Davies Karen Fieggen Jo Wilmshurst Obuchinezia Anyanwu Richard Joseph Burman Sandra Komarzynski
author_sort	Elin Haf Davies
title	Demonstrating the feasibility of digital health to support pediatric patients in South Africa
title_short	Demonstrating the feasibility of digital health to support pediatric patients in South Africa
title_full	Demonstrating the feasibility of digital health to support pediatric patients in South Africa
title_fullStr	Demonstrating the feasibility of digital health to support pediatric patients in South Africa
title_full_unstemmed	Demonstrating the feasibility of digital health to support pediatric patients in South Africa
title_sort	demonstrating the feasibility of digital health to support pediatric patients in south africa
publisher	Wiley
publishDate	2021
url	https://doaj.org/article/c5dd67cb6da64877a94548fe1a940ae4
work_keys_str_mv	AT elinhafdavies demonstratingthefeasibilityofdigitalhealthtosupportpediatricpatientsinsouthafrica AT karenfieggen demonstratingthefeasibilityofdigitalhealthtosupportpediatricpatientsinsouthafrica AT jowilmshurst demonstratingthefeasibilityofdigitalhealthtosupportpediatricpatientsinsouthafrica AT obuchineziaanyanwu demonstratingthefeasibilityofdigitalhealthtosupportpediatricpatientsinsouthafrica AT richardjosephburman demonstratingthefeasibilityofdigitalhealthtosupportpediatricpatientsinsouthafrica AT sandrakomarzynski demonstratingthefeasibilityofdigitalhealthtosupportpediatricpatientsinsouthafrica
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Demonstrating the feasibility of digital health to support pediatric patients in South Africa

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