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Can symptom tracking apps help people manage their arthritis?

Arthritis Today Winter 2017 Issue 174A new JIA app on a smartphoneWith smartphones now an integral part of our lives, and free apps readily available to help us track and manage everything from our money and social lives to diet and exercise, it’s vital we invest in research exploring how technology can help to improve treatment and care for people with arthritis of all ages.

Two pilot studies, both supported by funding from Arthritis Research UK, have worked closely with people with inflammatory arthritis to design, develop and test apps to help with symptom tracking and monitoring. Positive feedback from patients suggests apps have potential to help people with arthritis to better understand and manage their condition. The accurate and detailed data collected by an app also allows healthcare professionals to personalise treatment and care and could offer researchers vital insight needed to improve our understanding of arthritis.

Remote Monitoring of Rheumatoid Arthritis (REMORA)

Researchers at the University of Manchester have created a smartphone app to help people with rheumatoid arthritis monitor symptoms. The two-year REMORA study is exploring how this app can help people to self-manage their arthritis, doctors to give better care and researchers to understand more about the causes and frequency of disease flares.

Professor Will Dixon, Director of the Arthritis Research UK Centre for Epidemiology, explains: "For most people with rheumatoid arthritis clinic appointments are months apart. As healthcare professionals wanting to give the best treatment and care, we only have a short time with our patients to establish a clear picture of how they have been day to day since we last saw them.

"The reality is it’s very difficult to get an accurate picture. Understandably, people struggle to remember their daily symptoms over a six-month period. They can be influenced by how they’ve been feeling in the run-up to the appointment. So, if they’ve have a recent flare they may report feeling bad for the last six months or if they’re feeling good they will gloss over their painful days."

The app tackles this problem by providing a quick and easy way to log daily symptoms and record the impact of rheumatoid arthritis. During the study 20 patients were asked to use the app daily for three months to score their levels of pain, fatigue, sleep, physical and emotional wellbeing, morning stiffness and coping on a scale from 1 to 10. This data was complemented by more detailed weekly and monthly questions. Professor Dixon says: "Our app integrates data directly into the patient’s healthcare record, meaning a summary of all symptoms reported using the app is available to their doctor. Health apps are usually freestanding and not connected, so this is a unique development."Patients and doctors have found this to be helpful, allowing treatment and frequency of appointments to be personalised to the patient’s needs."Professor Will Dixon

"Everything the patient has logged is translated into easily accessible graphs, to discuss together at clinic. The study has shown both patients and doctors have found this to be helpful, allowing treatment and frequency of appointments to be personalised to the patient’s needs.

"It’s also given us clear evidence of the need for more accurate data. For example, one patient had begun a new biologic treatment and felt they hadn’t responded well. However, the graph showed a gradual positive change in symptoms which suggested the drug was working. There was no dramatic improvement, but by looking at a longer-term trend, the patient and doctor made the joint decision to continue with this drug.

"People testing the app have been really positive, it’s helped them have a better understanding of their body. They’ve been more aware of the relationship between what they’ve done, how they feel and their arthritis symptoms. As people have their smartphones with them all the time, it’s quickly become part of their daily routine."

As well as the immediate benefits to people with arthritis and the healthcare professionals caring for them, the app is invaluable from a research perspective: "As researchers we’re excited about the potential apps like this give us for gathering good-quality, accurate data about large numbers of people. This data could, for the first time, give us an understanding of how, why and when rheumatoid arthritis flares happen which should help us to treat or even prevent them. By helping us understand the disease better, this type of data could improve quality of life for thousands of people with rheumatoid arthritis."

The REMORA study recently won the 'Enabling Patients with Technology' category in Abbvie's 2017 Patients as Partners Awards.

JIApp: developed with teenagers, for teenagers

Co-funded by the Health Foundation, JIApp is the first ever smartphone app developed for and with young people with juvenile idiopathic arthritis (JIA) and the healthcare professionals caring for them. Designed to help young people to log their JIA symptoms and to understand and manage their condition, it also gives healthcare professionals the accurate, detailed data they need to make the right decisions on treatment and care. "When you talk to the doctor they have a lot of questions about symptoms and it’s hard to remember when it was and how long it lasted. Using JIApp will give me more time at appointments to talk about the things that are important to me."A young person involved in developing and testing JIApp

Principal Investigator Dr Despina Eleftheriou from the Arthritis Research UK Centre for Adolescent Rheumatology in London says: "Living with arthritis is difficult at any age, but dealing with it alongside the other challenges of being a teenager can be particularly tough. There are effective treatments for JIA but, to get the best results, young people must stick to their treatment plan and look after their own health and wellbeing. This app has been designed to help make this easier.

"The needs of young people are at the heart of this project, so we had to choose a way of communicating and interacting with them that they felt comfortable with. Young people live the rest of their lives using smartphones, so why not this part of their life?"

The app was developed with the specific challenges of being a teenager with arthritis in mind, in collaboration with computer science experts Professor Hailes and Dr Varakliotis from University College London. Dr Ran Alice Cai says: "We all go through lots of changes in our teenage years, but our patients are facing the extra burden of learning to manage their arthritis. Some of the young people had JIA as a child and up until now their parents have made decisions about treatment, organising and taking the lead in medical appointments. As they grow up it can be a big jump to independently managing their own care. While those who develop JIA during adolescence face a difficult transition from being healthy to living with a condition that can make them feel vulnerable and isolated from their friends."

JIApp gives young people an accessible, user-friendly way to track JIA symptoms, including pain, fatigue and mood, to share lifestyle information and to receive reminders to help and encourage them to attend hospital appointments and stick to their treatment plan. Feedback from the young people involved in the study has been overwhelmingly positive. They’ve highlighted advantages including; being able to create a reliable record of their symptoms between appointments and to identify how sleep, stress and exercise make their arthritis worse or better. They also welcomed the medication and appointment reminders and acknowledged using a smartphone app fitted easily around the rest of their lives."I never know when I'll flare-up…so if this can help me see if what I do can actually affect my arthritis then that would be very helpful."A young person involved in developing and testing JIApp

Dr Eleftheriou says: "By listening to young people we’ve found a way to use technology to improve the quality of care available to teenagers with JIA. Our approach has real potential to improve healthcare and outcomes for young people with arthritis. We’re working on the next stage of testing in the hope we can roll this out for use by teenagers with JIA across the country."

The Centre for Adolescent Rheumatology, established in 2012, is the only research centre in the world dedicated to understanding how conditions like arthritis affect teenagers. A £2million funding boost from Arthritis Research UK and the Great Ormond Street Hospital Children’s Charity secured in 2017 will support its pioneering research over the next five years.

Read next: We’ve joined forces with Arthritis Care

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At Arthritis Research UK we’re always looking for new and exciting ways to do more to help people with arthritis live full and active lives. That’s why we've joined forces with Arthritis Care.

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