Young Epilepsy App
Sharing information for young people with epilepsy and their parents, and providing a convenient and electronic way of recording details of seizure events.
Aims
- To provide information about epilepsy to young people with the condition and their parents and carers.
- To allow users to keep an up to date electronic record of seizures, including the attachment of video clips
- To aid seizure pattern identification through the generation of data charts based on information inputted into the diary.
- To facilitate information sharing by enabling sections of the user’s profile and data charts to be shared via email
Description
The Young Epilepsy app is a free information and support tool designed primarily for young people with epilepsy, their parents and carers. The app includes a seizure video function, symptom log and diary to help keep track of seizures and aid diagnosis. It also features key emergency and contact details, an information library – tailored for either adults or young people – and provides data in both email and chart format that can be easily shared with a school, carer or medical professional.
Implementation
This has not been implemented in a clinical setting. However, parents/ carers have been involved in the initial testing and ongoing development. Feedback is provided either via our helpline, an online survey signposted within the app or the email address webquery@youngepilepsy.org.uk.
Suggestions for Further Implementation
We would like to implement an accounts system so information on the app is also stored electronically – if people damage or get a new phone, their data isn’t lost. We would also like to have an output of the diary with all the information stored, which can be filtered.
Challenges and Learning
Success was getting input from the parents and young people during initial development. A challenge is the need for ongoing maintenance required because of constant changes to the iOS and android software on phones.
All of the information on the app and the functionality has been checked by an Epilepsy Nurse specialist working at Young Epilepsy.
Project Lead: Emma Sebastian
Organisation: Young Epilepsy
Published: May 2019