Assessing fatigue in Axial Spondyloarthropathy (AxSpA)
We are looking to identify recruiting centres to help with a study which is seeking to improve the assessment of fatigue in Axial Spondyloarthropathy (AxSpA). The study is a collaboration between Warwick Medical School (Dr Kirstie Haywood), the Staffordshire Rheumatology Centre and Keele University (Dr Jon Packham). Nathan Pearson is conducting the research as part of a PhD fellowship funded by the National Ankylosing Spondylitis Society (NASS). It is envisaged that the study will be adopted onto the portfolio (previous work relating to this AxSpA-fatigue workstream has been adopted). Ethical approval is due imminently.
The attached letter summarises the background to this research. A summary of project to date and proposal work is provided below.
1. Developing a new measure of AxSpA-specific fatigue: the Warwick AxSpA Tiredness and Energy (WASTEd) questionnaire:
Working collaboratively with patients we have co-produced the Warwick AxSpA Tiredness and Energy (WASTEd) questionnaire. This is a new patient-reported outcome measure, specific to the impact of AxSpA on an individual’s energy levels and fatigue. Development has been informed by extensive patient interviews and focus groups with healthcare professionals and patients. Additional patient interviews have been conducted to confirm the content and format of the questionnaire. Large scale statistical testing is now required to refine the questionnaire and to provide evidence of measurement validity following completion by a large population of AxSpA patients.
2. Proposed postal survey
This will be a two-stage postal survey. In stage 1 we will require 420 AxSpA patients to self-complete the questionnaire on just one occasion. Statistical analysis will inform a refinement of the questionnaire, producing a ‘short-form’ version. In stage 2, a further group of patients will be invited to complete a questionnaire package (to include the short-form WASTEd) on three occasions over a 6-month period. We will require a total of 600 patients to complete the questionnaire across these time-points. The reliability, validity and responsiveness of the measure will be determined.
We hope that the role of the sites will not be too onerous. We are asking participating sites to please identify and make first-contact with potential participants (each site will be asked to identify between 50-100 patients): this first contact will involve adding both the patient’s name and the consultant rheumatologist’s signature to a letter of invitation, and then mailing study documents to potential participants in pre-paid envelopes. In the event of non-response, sites will be asked to send a post-card reminder to participants at 2 weeks, and a full questionnaire package at 4 weeks. Participants will return completed questionnaires to the research fellow (Nathan Pearson) at Warwick Medical School. Subsequent follow-up (and for stage 2, additional questionnaire completion over the 6-month follow-up period) will be led by Nathan Pearson. Should potential participants wish to discuss the study, the cover letter will include contact details for Nathan Pearson.
All study-related documents (questionnaire packages, patient-facing documents) will be printed, prepared and provided to sites by Nathan Pearson. All postal costs will be covered by the study and postage-paid envelopes provided to each site.
If you are interested in getting involved with the study, please contact Nathan Pearson via email at firstname.lastname@example.org.