A training video to help people with rheumatoid arthritis (RA) to examine themselves for tender and swollen joints

The surge in remote consultations, catalysed by the COVID-19 pandemic, makes assessing rheumatoid arthritis disease activity challenging.

Assessments previously happened during face-to-face clinical examinations which were no longer possible with virtual care.

This video trains people with RA to examine themselves for tender and swollen joints, which supports clinical decision making and self-management.

Situation

Before the pandemic, the Remote Monitoring of Rheumatoid Arthritis (REMORA) study investigated how individuals with RA could record a number of outcomes using their smartphones. This included the number of tender and swollen joints.

This data is summarised for patients to view between appointments. It’s also integrated into the electronic health record (EHR) for clinicians and patients to view together during consultations.

The patient and public involvement and engagement (PPIE) group advising the study were clear that patients needed:

• a training video to teach them what tender and swollen joints are
• to know what disease activity scores (DAS28) are used for
• to understand how to examine themselves for tender and swollen joints

Aspiration

The team wanted to:

• support patients to make patient reported outcome measures, which could be integrated into the EHR
• support patients to manage their RA themselves
• support clinicians to help patients identify tender and swollen joints

Solution and impact

'How to self-examine for tender and swollen joints in rheumatoid arthritis' is a 15 minute video on YouTube.

It features a patient with RA being coached by a nurse to examine the 28 joints required to complete a DAS28. The DAS28 score measures RA disease activity. This helps to understand the severity of the disease and how it changes over time in order to target treatments appropriately.

The video was originally developed to support people using the REMORA app. In the app, patients record their symptoms and outcomes including the number of tender and swollen joints.

This data is then pulled into the electronic patient record. Clinicians and patients can view this together during clinical consultations. This creates a much clearer understanding of disease activity over time than is possible using people’s memory alone.

For those not using the REMORA app, the video can support people who want to upload their scores into the British Society for Rheumatology patient reported outcome measures (PROMS) platform. It can also help patients who want to support their self-management and to keep a record for themselves using the chart the team has developed.

Functionality

The video is publicly available on YouTube. The 15 minute version contains signposted segments, including introductions and definitions, individual joint examinations, and a frequently asked questions section.

There are also shorter segments of the individual joint examinations.

Google Translate is available in all languages through YouTube. The team made bespoke Hindi and German translations.

The YouTube description box has:

• links to a form people with RA can use to log their scores
• written FAQs
• more information about the REMORA project
• blogs explaining the video in more detail from the patient partner, Karen Staniland, and clinical lead for the development of the video, Dr Charlotte Sharp

There will soon be a pack for clinical departments to download which includes a poster for waiting rooms and flyers to hand out to patients.

Capabilities

• The video trains people with RA to examine themselves for tender and swollen joints and supports them to record their scores.
• It helps people with RA to develop a clearer understanding of the DAS28 score and the different causes for swollen joints.

Scope

• The video is intended to be watched by people with RA.
• It can support self-management, clinical consultations (through patients tracking their scores over time) and virtual consultations (providing some clinical information to clinicians).
• The video can be used to support clinicians to help patients identify tender and swollen joints.

Key learning points

• Self-examination should not replace thorough clinical assessment. Instead, self-examined joint counts can help alert the presence of a flare, flag the need for face-to-face assessment, and provide a clearer picture of how disease activity has changed since the last appointment.
• Self-examination may be helpful in informing a patient initiated follow up.

Digital equalities

Patients without access to digital technology and who want to understand how to examine themselves for tender and swollen joints can approach their healthcare professionals for support.

The REMORA project team is keen to showcase the video in outpatient waiting areas. This will reduce the reliance on patients having access to personalised digital devices. The team have explored doing this locally in Manchester and would be happy to support other trusts in showing the video on screens in their outpatient departments.

Key figures and quotes

• The video had 25,000 views on YouTube between February 2021 and November 2021.
• Patients and clinicians gave excellent feedback in online survey.

“I personally found this video invaluable in helping me to understand more about my swollen joints and how to check if there is any unusual swelling.

As I keep a record of any abnormal swelling, it enables me to report back to my RA team when I see them in clinic.

Being able to examine my joints along with a clinician is really helpful as it gives me confidence in knowing that I am examining the joints correctly.  

Because of the video, I now know the difference between the swelling of RA and osteoarthritis, whereas before I was under the illusion that they both related to the same thing.

It also explained to me why the DAS28 score doesn’t take feet into consideration when counting troublesome joints.”

Dorothy Slater, REMORA patient partner

“How we deliver outpatient services has been transformed by the pandemic.

Resources to support the collection of PROMS are essential now with departments looking to embed remote consultations in their pathways and roll out patient-initiated follow-up, where appropriate.

The REMORA DAS28 video is an essential part of the toolkit to support the rheumatology community and empower patients to engage with this service transformation.”

Dr Elizabeth Macphie, Consultant Rheumatologist and Integrated Musculoskeletal Clinical Lead, Lancashire and South Cumbria NHS Foundation Trust

Find out more

Watch the video 'How to self-examine for tender and swollen joints in rheumatoid arthritis'

Key contact

Professor Will Dixon, Professor of Digital Epidemiology, Honorary Consultant Rheumatologist, Salford Royal NHS Foundation Trust

will.dixon@manchester.ac.uk

Dr Charlotte Sharp, National Institute for Health Research Clinical Lecturer in Rheumatology, the University of Manchester

charlotte.sharp@manchester.ac.uk