Evaluating an electronic PROM for fatigue in axial Spondyloarthritis
Research type
Research Study
Full title
Measuring fatigue in Axial Spondyloarthritis (axSpA): refinement, application and evaluation of a new electronic patient-reported outcome measure (the Warwick Axial Spondyloarthritis Fatigue and Energy questionnaire (e- WASTEd)) in rheumatology clinical practice.
IRAS ID
310098
Contact name
Kirstie Haywood
Contact email
Sponsor organisation
University of Warwick
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
Aims: We will work with patients to refine and test a new questionnaire about fatigue in axial Spondyloarthritis (axSpA). This will help patients tell clinicians about their fatigue and get the treatment they need. We will make an on-line version which will be completed using a computer or tablet. We will provide guidance to improve the use of on-line questionnaires.
Background:
AxSpA is relatively common, affecting 3 in every 1,000 UK adults. There is no cure. Pain, stiffness, reduced mobility, and severe fatigue are important problems. Patients have said that they would like more help coping with fatigue. However, the current way patients are asked about fatigue can undervalue its importance and impact.We have worked with patients to complete the first steps towards making a new questionnaire to assess fatigue. However, we need to complete this work before it can be used in clinical practice.
A new on-line system is being used by NHS clinicians to support questionnaire completion by rheumatology patients. We will use this system to test our questionnaire and to find out what patients and clinicians think about it. For example, its ease of use and whether it helps in meetings between patients and clinicians. This will help us both to improve the system and ultimately improve patient care.
Design and methods used:
Stage 1: Refining and making an on-line questionnaire:
Before making an on-line questionnaire, we need to check that the questions make sense to patients. Twenty patients will be asked to complete a paper copy of the questionnaire and tell us their views. Questions will be refined based on what they tell us. We will then develop an on-line version. Ten patients will be asked to complete this on-line to check how easy it is to complete and what they think about completing it on-line.Stage 2: Testing the on-line questionnaire:
Three hundred axSpA patients will complete the on-line questionnaire three times over six-months. Additional questionnaires about their health and experiences of on-line questionnaire completion will be included. We will test how well the new questionnaire measures fatigue, and if it shows when fatigue gets better or worse.Stage 3: Exploring experiences of accessing and using the on-line platform:
Finally, twenty patients and clinicians will discuss their experiences of using the on-line system and questionnaires in everyday rheumatology clinics.Patient and public involvement:
We have worked with patients as research partners to make the questionnaire. They were involved in the study design and will continue to support all research stages.Dissemination – sharing the results:
Findings will be shared with patients through easy-read articles and events with patient organisations, clinical and patient networks. We will present at national and international conferences and write papers.REC name
North West - Preston Research Ethics Committee
REC reference
22/NW/0211
Date of REC Opinion
15 Aug 2022
REC opinion
Further Information Favourable Opinion