SOCRATES

Patient-reported outcome measures for rheumatoid arthritis symptom severity: development of a computer adaptive test from an item bank using Rasch measurement theory.

Background

This fellowship aims to improve treatment, management and outcomes for people with rheumatoid arthritis (RA) by developing an online patient reported outcome measures (PROMs) tool for symptom severity. This will be done using modern statistical techniques, guided by expert supervision and international collaboration.

This fellowship is important because the developed online PROMs tool will provide true measurements of symptom severity over time to a person’s clinical team. This will allow treatments to be managed more effectively and sensitively to the person’s needs.

RA is a chronic, disabling, autoimmune disease that can attack the entire body, causing joint pain, loss of motion, inflammation, swelling and redness in affected areas. About 1% of the population have RA and approximately 15% of these people have severe disease. Women are three times more likely to have this disease than men, with onset most likely between the ages of 40 and 60. No cure is available, so treatment and management are key, and regular monitoring is vital.

People with RA have expressed a desire to have a straightforward online PROM tool for monitoring their own disease at home. However, whilst there are many PROMs for people with RA, they were validated using standard techniques and do not meet strict modern criteria suggested by experts. With the advent of electronic health in the NHS, an online PROM tool has the potential to transform clinical care.

Research aims

• Determining the quality of existing PROMs.
• Exploring individual questions and discussing their relevance with people with RA.
• Building the online PROM tool that is in the best interests of people with RA.

Study design

The existing literature will be reviewed for relevant PROMs for people with RA and reviewed for quality. The questions from these PROMs, plus others suggested by PPI collaborators will be put to local people with RA in a survey to provide necessary data.

Once collected, the study will focus on:

• Research Phase 1: Analyse data from relevant PROMs using modern statistical techniques to see which questions most relevant.
• Research Phase 2: Assess the content validity in discussion with people with RA.
• Research Phase 3: Design and build a prototype online PROM tool, including initial user testing with people with RA.

Patient and public involvement

People with RA are involved throughout the whole life-cycle of this fellowship, from helping to design the research phases, overseeing the running of the fellowship, and helping to understand the meaning of the results.

Dissemination

Results will be distributed through journal articles and at conferences, and through National Rheumatoid Arthritis Society (NRAS) outlets including their newsletter, webinars and ‘Rheum for You’ events, with a dissemination event at the conclusion.

Supervisors

Name: Dr Mike Horton
Email: m.c.horton@leeds.ac.uk

Name: Dr Rhiannon Phillips
Email: rphillips2@cardiffmet.ac.uk