Is paediatric home monitoring in CF feasible? There’s an app for that!

Nowadays people use apps for all kinds of things, from tracking their steps, to filtering their holiday pictures and even voting on their favourite TV program. However, apps to monitor a person’s medical condition are rarer. I am an NHS Digital Pioneer Fellow and one of the researchers on an exciting project called CLIMB-CF and I want to tell you more about it.

CLIMB-CF is a study, funded by the CF Trust and run from Imperial College London, exploring whether it is possible to monitor children and young people with Cystic Fibrosis (CF) at home using an app and some Bluetooth equipment.(https://www.cysticfibrosis.org.uk/the-work-we-do/clinical-care/smartcarecf/climb-cf).

Cystic Fibrosis is a life-limiting genetic condition that affects many parts of the body, but mainly the lungs. Children with CF often miss a lot of school because they are unwell and in hospital. Even if they are well, their routine clinic appointments tend to be every two months.

We are currently trialling the app in the UK and Canada. Trial participants use the app daily for six months, answering questions on how they are feeling and using equipment that measures their heart rate, oxygen levels and activity. Below are screen shots of what the app currently looks like.

We want to know whether the people on the trial like using the technology, and test the quality of the data we are getting back. We hope that in future it could help us spot children who are becoming unwell earlier, as well as tailor clinic attendance so that they don’t need to come to the hospital as often.

Our hope is that this feasibility data will bring us closer to implementing remote monitoring in routine care for children with CF. We will also gather important information from the participants about the usability of the app and kit, so we can make it as user-friendly as possible.

Through the digital pioneer fellowship, I have been able to access advice from mentors regarding the next stage of the design process, the data analysis and what to think about moving forward to adopt this product into routine NHS care.

Despite this there continue to be challenges around making the app user friendly for both families and staff, clinically relevant, and easy to implement into practice in the NHS. How would you address these challenges moving forward?