Development of a digital self-management tool for people with Sjögren’s syndrome (DIGITS)

Disease - Sjogren’s syndrome

Lead applicant – Dr Katie Hackett

Organisation – Northumbria University

Type of grant – Research Progression Award

Status of grant - Active

Amount of the original award - £273,553.54

Start date – 1 October 2018

Reference – 22026

Public Summary

What are the aims of this research? 

Sjögren’s syndrome is a condition that mainly causes a dry mouth and eyes, though it can also cause a range of other symptoms including joint pain and fatigue. It can occur alongside other rheumatic diseases, such as rheumatoid arthritis, or on its own, in which case it’s referred to as primary Sjögren’s syndrome. This research project aims to improve the quality of life of people with primary Sjögren’s syndrome using an interactive, digital self-management tool, which is available through a website and smartphone app.

Why is this research important?

It’s estimated that up to half a million people in the UK may be affected by Sjögren’s syndrome, but the exact figures aren’t known because many people never see a doctor about their symptoms. With no specific treatment, most common symptoms are usually treated with a combination of medication and self-help measures. However, many people don’t have access to suitable support.

The researcher will work with patients and web developers to create an interactive website and smartphone app to support people with Sjögren’s syndrome in managing their symptoms. This will be tested by patients to see if the material and format are useful and engaging in a digital format compared to written material. From this, the researcher will be able to assess whether a larger study can be undertaken to find out how effective the digital tool is in improving the quality of life and symptoms in people with primary Sjögren’s syndrome.

How will the findings benefit patients?

A self-management tool which is accessed online will support people with primary Sjögren’s syndrome to be in control, independent and recognised. As many people with primary Sjögren’s syndrome don’t have suitable support for their symptoms and are unsure about the reliability of information on the condition, this digital tool would be able to overcome these issues by directly providing up-to-date and reliable information to allow self-management of symptoms for an improved quality of life.