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Reducing Arthritis Fatigue - clinical Teams using cognitive-behavioural approaches (RAFT)

Funding body/stream

NIHR - Health Technology Assessment

Chief investigator

Professor Sarah Hewlett

Institution

University of the West of England and UHBristol

Start date & duration

01/11/2013 for 54 months

Amount

£1,315,470.20

Summary

Rheumatoid Arthritis (or RA) is a lifelong inflammatory condition affecting most joints, with fluctuating pain and swelling leading to joint damage and disability. Medication aims to control inflammation, and hospital rheumatology teams support the patient in self-managing their symptoms. About half a million people in the UK have RA and up to 70% have fatigue on most days. They struggle to manage fatigue, which is much worse than normal tiredness, and as bad as their RA pain. Fatigue may be physical (feeling wiped out), cognitive (unable to concentrate) or emotional (frustration), and may affect ability to stay in paid work. Fatigue is rarely asked about in clinic, and support is not routinely offered - patients generally pick up a leaflet.

 

This study was awarded through an NIHR commissioning brief that asked us to test whether a simplified psychological intervention that could be delivered widely in the NHS, reduces RA fatigue and is an efficient use of NHS resources. The intervention we will test is a cognitive-behavioural therapy (CBT) course, delivered by the usual rheumatology clinical team to groups of patients: Reducing Arthritis Fatigue - clinical Teams using cognitive behavioural approaches (RAFT).

 

We previously tested a CBT course for RA fatigue in a formal research trial. Courses were led by a psychologist and substantially improved fatigue impact, severity and coping, and mood, sleep and disability. However, few rheumatology teams have psychologists, therefore we wish to test whether rheumatology nurses or occupational therapists (OTs) could lead the course if we teach them these CB skills and give them a detailed, written manual of the course, to see whether the intervention is widely deliverable in the NHS

 

We have two patient research partners who participated in the original CBT trial and contributed to developing the RAFT and its materials. As co-applicants they will bring expert advice on recruitment, retention, questionnaires, and help deliver interactive tutor training.

Output of the research and impact

We will submit our findings to the National Institute for Health and Clinical Excellence (NICE). NICE review evidence and have published guidelines for managing RA; if it is successful, we hope they will add RAFT to this. To enthuse staff, all UK rheumatology teams will be invited to RAFT taster sessions at interactive RoadShows. Patients will beinformed about RAFT through posters in rheumatology clinics and newsletters from the National Rheumatoid Arthritis Society.

 

If RAFT is included in NICE guidelines, Clinical Commissioning Groups (CCGs) are required to take consider it. We will submit the 6 month efficacy and cost-effectiveness findings to the review of the NICE guidelines for RA management, and British Society of Rheumatology RA guidelines (2015/16), followed by 2 year findings (2017/18). We will distribute information packs to CCGs upon publication of NICE or BSR guidelines.

 

Bristol Health Partners (a local collaboration of NHS organisations, universities and Bristol City Council) has Health Integration Teams (HITs) to turn research into practice, and this trial will input into the musculoskeletal HIT.

Patient and public involvement

People with RA raised the issue of fatigue as an important symptom during an OMERACT conference (Outcome Measurement in Rheumatology Clinical Trials) in 2002. Subsequently they highlighted that fatigue was being ignored by clinical teams and rated fatigue in their top priorities, as bad as pain, and it was added to the RA core set. Patient input into guidelines for RA care, ensured the recommendation of support for fatigue.

 

We have 2 patient partners who were CB participants in the original RCT. They became research partners on the project to manualise and pilot RAFT, improving the clarity of patient materials and the tutor manual. They attended meetings to design the proposed study, and considered the appropriateness of the fatigue booklet as control. They reviewed outcomes and acceptability of scales, helped design the patient health economics diary, reviewed diary drafts and piloted it for 3 months. They contributed to the lay abstract, and had it reviewed by a lay group. They are co-applicants on the proposal.

 

In the RCT the patient partners will provide patient perspectives on the questionnaires and information sheets, and the practicalities and acceptability of recruitment, assessments and RAFT delivery. They will support the tutor training week by providing first-hand knowledge of RA and experience of attending the original CB intervention, and will enable tutors to practice their CB skills. As part of the core trial management group they will monitor trial progress, advise on recruitment, interpret findings, and be co-authors on publications. They will join the RoadShows to assist in dissemination, and will review the participant summary and the material to be distributed by the National rheumatoid Arthritis Society. Applicants Hewlett and Kirwan have collaborated with patient partners on all research and PhD supervisory teams since 2005 and have over 20 rheumatology patient partners in the department. They deliver annual training days, which the patient partners will attend annually.

Link to further information:

Trial information: http://www.nets.nihr.ac.uk/projects/hta/1111201

Bristol Health Partners Musculoskeletal Health Integration Team:

http://www.bristolhealthpartners.org.uk/health-integration-teams/musculoskeletal-hit/