Involvement within the INCLUDE study
6 June 2019
INCLUDE is a research study based at Keele University (1), which has the aim of improving care for people with different types of inflammatory arthritis (rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, polymyalgia rheumatica and giant cell arteritis). People with inflammatory arthritis are more likely to develop mood problems, heart disease and poor bone health. These problems are common, though are often not identified or treated, which can reduce the quality of life of affected people.
Therefore, within the INCLUDE study, people with inflammatory arthritis have been invited to see a nurse at their local GP surgery for a detailed review, aiming to identify and manage mood problems, heart disease and poor bone health. We have aimed to find out whether this review improves how problems linked to inflammatory arthritis are treated.
The idea for the INCLUDE study came from a patient and public involvement and engagement (PPIE) group at which the results of a previous study were being discussed. This study had involved interviews with people with rheumatoid arthritis who had attended a review with a nurse (2). When hearing the review was based at a community hospital, the PPIE group suggested that it should be moved to primary care, where they already had reviews for other long-term conditions. Participants also queried why the review was limited to people with rheumatoid arthritis and did not include those with other types of inflammatory arthritis.
Following these suggestions, members of the Keele University Research User Group (RUG) and Haywood User Group (HUG) have continued to contribute to the INCLUDE study. HUG members have helped to review the funding application and documents for ethical approval, whilst a RUG member is part of the committee overseeing the trial. Since then, after being recruited via a leaflet shared through outpatient clinics and the RUG, six people with different types of inflammatory arthritis have met regularly throughout the study.
At the first PPIE meeting, participants were enthusiastic about the INCLUDE review, agreeing it would be important to prioritise mood problems, heart disease, and bone health. Another key priority for patients was fatigue, which was incorporated into study questionnaires.
During later PPIE meetings, participants suggested improvements to the INCLUDE study questionnaires, invitation letters and patient information leaflets. The group also suggested it would be useful for patients to have three key action points communicated via a summary sheet following their review, which they helped to develop.
Later, study findings and potential improvements to the INCLUDE review were discussed, in preparation for an application for funding for a full trial. Members of the group suggested that a range of primary care professionals could conduct the review, and thought that management advice given in the review consultation could be reinforced in a follow-up telephone call. PPIE group participants also gave advice on how to share results, via social media posts, presentations to arthritis groups and communication with national arthritis organisations.
Leading PPIE for INCLUDE has highlighted to me the breadth of contributions patients and the public can make to research. I have also been able to witness the rewards of continuity of involvement for patients and researchers, seeing ideas successfully developed and applied, with the potential to benefit the wider population living with arthritis.
1. Hider SL, Blagojevic-Bucknall M, Cooke K, Cooke K, Finney A, Goddin D, Healey EL, Hennings S, Herron D, Jinks C, Lewis M, Machin A, Mallen C, Wathall S, Chew-Graham CA. The INCLUDE study: INtegrating and improving Care for peopLe with inflammatory rheUmatological DisordErs in the community; indentifying multimorbidity: Protocol for a pilot randomized controlled trial. J Comorb, 2018 Aug 2; 8(1):2235042X18792373.
2. Machin, A.R., Hider, S., Dale, N., Chew-Graham, C.A. Improving recognition of anxiety and depression in Rheumatoid Arthritis: a qualitative study in a community clinic. BJGP; 2017 Aug; 67(661), e531-e537.