Young people with arthritis beat Covid isolation thanks to mobile App - ‘being able to link up with other young people has completely changed the way I feel about my condition’

A mobile app to support teens and young adults with arthritis self-isolating in the wake of Covid-19 has been launched by the charity Versus Arthritis this month.
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The Arthritis Tracker – which provides 24/7 access to trusted information and advice for young people between 13 and 25 – will help them to rate and record their arthritis symptoms in seconds and track their pain, medication side effects, fatigue, physical activity, sleep and emotional well-being.

An estimated 2.98 million people under the age of 35 in the UK are living with a musculoskeletal (MSK) condition like arthritis. This app will support those aged 13-25 living with the pain, fatigue and isolation of arthritis, whilst also dealing with the everyday challenges of growing up. Many take immunosuppressant drugs and are amongst the 1.8 million currently having to shield during Covid-19.

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The experience of self-shielding and social distancing can have negative impacts on the health and condition of people with arthritis, with anxiety and reduced physical activity causing a flare in symptoms.

With restrictions in place for face-to-face appointments during the pandemic and with young people finding it difficult to explain their symptoms, it is crucial that accurate information of the health of young people with arthritis can be reported to healthcare professionals charged with their care.

Young people were fundamental to the app’s creation and development, with the idea coming from 20-year old Hope Graham from Co Down. Along with tracking their arthritis symptoms and well-being the app also connects them with other teenagers and young people who know what it is like to live with arthritis.

Speaking on the launch of the app, Hope, who has juvenile idiopathic arthritis (JIA), said: “Having an app that can help track symptoms is such a huge help. I have been in a lot of pain previously, but whenever I go to the doctor, I tend to say ‘I’m OK, I’m not feeling that bad’, but actually, I won’t have been able to walk up the stairs a couple of weeks ago.

Lupus sufferer Shay Horan, 22, from DundonaldLupus sufferer Shay Horan, 22, from Dundonald
Lupus sufferer Shay Horan, 22, from Dundonald
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“I will be using the app all the time now. Being part of its development has already helped me to ensure I get the treatment I need when I visit my doctor. And being able to link up with other young people has completely changed the way I feel about my condition.

“I used to feel very alone. I hope that this app helps other young people to become part of a community, who are here to support each other.”

More than 100 young people and health professionals have contributed to how the app was designed and built, and it will continue to be updated with users’ feedback.

Sophie Mullen, digital engagement officer at Versus Arthritis who led on the app’s creation and development alongside young people, said:

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“This is for teenagers and young adults with arthritis which has been designed to help them track how they have been feeling over the last while. Young people with arthritis will experience a range of symptoms from pain to fatigue and their sleep and social lives can be affected.

“So this helps them track how they’ve been doing recently according to six different measures that means that when they visit medical professionals they can give them a clearer picture of how they have been doing. It’s been designed and made by young people here in Northern Ireland.

“Sometimes young people will tell us that they struggle to take full advantage of an appointment with a health professional, because it’s hard to explain how they’ve been feeling - this app helps them do that.

“So it allows young people to give medics a more holistic picture of how they’ve been coping.

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“Many of them are shielding during lockdown because they are on immunosuppressant medication so they can be feeling especially isolated and this is often the case for young people with this condition even outside this Covid-19 crisis.

“Technology is helping us bridge the gap to those who were already isolated.

“Arthritis is too often dismissed as an old person’s disease, but it doesn’t discriminate by age - two thirds of people with arthritis are under 65. At Versus Arthritis we want to ensure nobody with arthritis is left alone. Our app provides much needed additional support which young people can access anywhere, including from the comfort and safety of their home.

“We wanted young people’s voices front and centre throughout this project and their contribution has been essential: from idea, to prototype to the app we have today.”

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Shay Horan, 22, is from Dundonald and was diagnosed with lupus when he was 12.

Living with arthritis has had a big impact on Shay’s life whilst growing up. He takes immunosuppressive medication and is one of the 1.8 million people who have been asked to shield at home for 12 weeks.

His infusions have been put on hold during the coronavirus pandemic.

Shay is a volunteer for Versus Arthritis Young People & Family Service in Northern Ireland and has been involved in the Arthritis Tracker app since the very beginning.

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He was part of the initial conversations that shaped the app, attended focus groups with other young people, as well as one of the first meetings with a developer to help prioritise features in the app.

“My body attacks itself,” Shay says of Lupus.“That’s what my immune system does. Sometimes I get bad rashes, I feel constantly tired. I experience pain. But it comes and goes. One day you might be OK and the next thing you might be sore and stuff and really suffering.

“If I take part in an activity or want to go out one night, I have to be prepapred to be shattered and in bed the next and that isn’t easy as a young person. I struggle with the unpredictability of this. One day I wake up and I’m grand; the next I’m in pain and can’t do the things I want to do. I could be so seized up and sore that I might not even be able to walk. Covid has really messed with my life.

“I’m coming up on three months in the house and my sleep patterns are all over the place. I can’t go to my job in Home Bargains, I can’t see my girlfriend, can’t go for a drive and clear my head.”

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Shay explains that the idea for an app came out of group conversations with other young people with artritis. “We all agreed it would just be so helpful to have a way to monitor things so you can give a clear picture to the doctor about how I’ve been.

“It helps young people take control of their condition and I think that is very important. Particularly when you start to transition to adult services it’s now up to you rather than your parents to explain to doctors what you have been struggling with. It’s an empowering thing.”

Shay keeps in contact with other sufferers thanks to Versus Arthritis and has even been on residentials to places like Tollymore that make you feel part of a community that is more than about just sharing symptoms.

“Covid is so isolating and Versus Arthritis can help you stay connected at a time like this.”

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Dr Janet McDonagh, a paediatric and adolescent rheumatologist at Royal Manchester Children’s Hospital, part of Manchester University NHS Foundation Trust, said: “The Arthritis Tracker that young people and Versus Arthritis have created is great – I am actively encouraging young people in my clinic to use it.

“It has huge potential to enhance communication between young people and health professionals, allowing us to better understand the impact arthritis is having on the young person’s life and then to treat them more effectively.

“Since the Covid-19 outbreak, the app has even greater potential. It can be difficult to assess young people on the phone so using their app summaries as a prompt or by sharing on email beforehand, it will really help these phone consultations.”

Arthritis Tracker is available on the Versus Arthritis website and to download for iPhone on the Apple App Store and for Android on Google Play.

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