All people with lupus have to learn how to manage their disease, which might include following particular treatment plans, keeping track of symptoms to spot a developing flare, or making adjustments to your day to manage fatigue. However, it can be quite challenging to do this, particularly when people are not given enough information on how to self-manage or are unsure what tools may help them.
This study is led by a team developing an app to help people with autoimmune diseases to manage their conditions. They plan for their app to include a way of tracking different symptoms, which will then be analysed to identify trends, offer personalised advice, and generate a report which can be shared during medical appointments. They have worked with patients and doctors to develop their ideas, and are now testing what people think of the ways their app will ask questions about symptoms and if people find it easy to track symptoms in this way.
For this study, the questions will be sent via email instead of an app, and they are focusing on people with lupus or rheumatoid arthritis. They will be testing the questions using two common symptoms – fatigue and pain.
What would I need to do if I took part?
The study would involve tracking your pain and fatigue symptoms every day for one month. A questionnaire will be sent to you every day via email, which should only take a couple of minutes to complete. You will be sent a summary of the collected data once a week.
If you track your symptoms every day, you will be entered into a prize draw for £20 Amazon gift vouchers.
Who can take part?
Anyone with lupus or rheumatoid arthritis who is over the age of 18 and has access to the internet is eligible to take part.
How do I find out more?
You can read more about the developing app on the Prototypes For Humanity website here.