Trial Recruiting Sjögren’s Patients to Test Sjogo Self-Management App

An international trial is recruiting people with Sjögren’s syndrome to investigate the feasibility of an online app, called Sjogo, that’s designed to support the self-management of symptoms.

Recruitment is primarily being done via Twitter, the American microblogging and social networking service.

The Sjogo app was developed by a team of researchers and healthcare practitioners from Northumbria University Newcastle, Teesside University, and Newcastle University, all in the U.K., with the involvement of people with Sjögren’s syndrome.

Available for download as part of the trial, the app is a type of behavioral treatment that’s designed to help patients gain insight into how their behaviors influence their well-being. The goal is for participants to adjust their behaviors to be more in line with what’s important to them.

Both the app and the ongoing trial are being funded by Versus Arthritis, the UK’s largest charity dedicated to supporting people with varying types of arthritis.

The foundations for the app were laid down by a study that identified key priorities and barriers to participating in daily living activities, which are compromised in many Sjögren’s patients. Five areas of immediate attention identified in the study were dryness, fatigue, sleep disturbances, pain, and the need for information.

A group of people with Sjögren’s helped guide app content and how it was delivered. These patients reported that the disease’s symptoms are not experienced separately, and often overlap or are causative. For example, mental fatigue can trigger physical fatigue, which in turn leads to pain and sleep problems among patients. As such, the Sjogo’s activity diary has techniques that may help support people with pain, fatigue, and sleep all at once.

Participants also reported they had developed their own complex strategies for managing symptoms. Many found that being proactive and constantly learning about the condition helped them feel more in control. The “Notes” feature is a space dedicated to observations and information that the patients encounter in their daily lives.

Sjogo also incorporated communication techniques to express needs and feelings that families, co-workers, and health professionals often misunderstand. 

The developers said the app was informed by clinical practice, which included an occupational therapy perspective that encourages users to be independent and participate in daily activities on their own terms. The app’s diary component is frequently used by occupational therapists and other professionals to help patients reflect on daily living demands and the importance of scheduling downtime, they said. 

Health psychologists specializing in insomnia and fatigue management were consulted, including physiotherapist psychologists, a specialist nurse, a dentist, and a rheumatologist. Additional clinicians also involved worked with people with long-term conditions in the CRESTA Fatigue clinic, which cares for people who experience symptoms of chronic fatigue alongside a physical health condition.

Components of the app that address fatigue were based on the RAFT study, which focused on people with fatigue that’s related to rheumatoid arthritis. This was necessary as there are no studies of the same quality investigating fatigue in Sjögren’s syndrome, the app’s developers said. 

Cognitive-behavioral therapy (CBT), the treatment used in RAFT, is a talking therapy that can help manage symptoms by changing thoughts and behaviors. Specific activities identified in RAFT group sessions were considered and adapted for the app, shaped by advice from healthcare professionals who specialize in fatigue management.

Help with sleep problems was incorporated based on an adapted version of CBT-I, an approved method to treat difficulties falling asleep and staying asleep. As there are no dedicated treatments for sleep disturbances in Sjögren’s syndrome, the Sjogo’s techniques were modified for such patients by working with a psychologist specializing in insomnia. 

Technical support for Sjogo came from human-computer interaction researchers, who provided guidance on making the app intuitive, engaging, and easy to navigate while understanding the needs of people with Sjögren’s syndrome. 

To download the app and for more information, click here.