The neuro-oncology team at Barts Health has helped develop a mobile app that can help people living with a brain tumour to cope better.
The team, mainly based at St. Bartholomew's neuro-oncology clinic and The Royal London’s neurosurgery ward, primarily cares for patients with various types of brain tumours. Across the UK, over 12,000 people- about 33 people a day- are diagnosed every year with a primary brain tumour, including 500 children and young adults. Additionally:
Over 5,300 people lose their lives to a brain tumour each year
At least 88,000 children and adults are living with a brain tumour in the UK currently
Brain tumour reduce life expectancy by 27 years on average – the highest of any cancer
Brain tumours are the largest cause of preventable or treatable blindness in children
Over £700m is spend on cancer research in the UK every year, yet less than 3% of this is spent on brain tumour research
Living with a brain tumour often means that patients have a hard time remembering things, and recalling important information regarding their tumour can be difficult. The app, which the team has helped develop with The Brain Tumour Charity, allows patients to record and keep track of vital information, such as monitoring symptoms, keeping tracking of appointments and treatment dates, as well as managing their medication diary.
As well as providing clinical feedback and advice, the research team has pioneered the upcoming ‘seizure diary’ function, where patients and carers can record seizure episodes accurately and provide more accurate data for clinicians when treating them. Having all of this data available and accurately recorded in one application allows for clinicians to make more accurate and individualised care plans for their patients.
The app is specifically designed for patients, their families, carers, healthcare practitioners and is available for all brain tumour patients across the UK. The app is available to download on both Apple and Android.
It is currently being used for patients in the neuro wards of The Royal London Hospital who are admitted for surgery, as well as being promoted to patients who visit the neuro-oncology clinic at St. Bartholomew's.
Resources for the BRIAN app and The Brain Tumour Charity are also provided to patients on discharge from wards.
One patient at Barts Health, who is living with a brain tumour, outlines how it has improved their ability to deal symptoms
I was told about the BRIAN app and had a session with one of the developers to guide me how to use it. At first, it was a bit overwhelming because of the number of features that it had. But after going through each one, I understood and appreciated that almost everything is on the app. It saves me a lot of time since I have all my medications on the app and it reminds me when I have to take them. I also have the dates of my appointments and the kind of brain tumour that I have. I also record any symptoms that I experience, like headaches and twitching which I forget the exact days that I have them, but with the app, every detail is on there even if I forget the details. From my point of view, the app is great, the colour is excellent, and it’s incredibly convenient. I will need to spend more time using it as I have yet to try the other features, like the questionnaires, challenges, and benefits, but overall, it’s a very useful and convenient app for someone like me who has a brain tumour.
For further information about the app and how it’s helping patients, you can contact Paolo, clinical research nurse.