Rheumatology experts influence care by involving patients

Issue date: 11 November 2009

University of the West of England Rheumatology experts at the University of the West of England are making an important contribution to clinical care for people with Rheumatoid Arthritis by collaborating with patients in research projects.

Recent findings indicate that patients are concerned with fatigue and well-being, issues which they see as a significant priority when learning how to deal with this challenging condition. Neither of these areas has received much emphasis in guidelines to health practitioners before and research carried out by the group is making important waves as recommendations are now becoming integrated into international consensus for patient care.

The Academic Rheumatology Unit is run jointly with the University of Bristol and linked to the Rheumatology Clinic at the Bristol Royal Infirmary, where UWE's 6 researchers are based. Professor Sarah Hewlett from UWE stresses the benefits of the collaborative centre. She said, “All our work is centred on patient experiences and we actively seek their involvement so that we can learn how we might help people cope with living with Rheumatoid Arthritis. Patients are on the steering groups of all research projects and are co-authors on our academic papers, such is the critical importance of their input into our research toward developing better care.”

The centre's focus on fatigue and well-being in rheumatoid arthritis has identified findings that point to the need for a holistic approach, which will complement current clinical practice.

Dr Tessa Sanderson has just completed her PhD looking at what well-being and normality means in the context of a chronic illness, and patients treatment priorities. Dr Sanderson explains, “So much clinical practice is focused on physical aspects of the condition, such as pain relief or prevention of joint damage, and this is critical. However, when we talk to patients we find that what also concerns them is the psychological impact, including making sense of their condition.

“The research has indicated that people with Rheumatoid Arthritis have core outcomes from treatment that are important to them: pain, activities of daily living, joint damage, mobility or getting around, life enjoyment, independence, fatigue and valued activities (or activities that give you pleasure and meaning).

“Priorities for treatment have historically differed between what practitioners think is needed and what patients actually want. My research provides the patient perspective of what is important - the broader impact of the condition. This complements the rheumatologists' focus on disease activity and physical impairments.

“Patients told us that a really important aspect of dealing with RA is taking time to focus on the impact the condition has on their everyday lives. Each individual is going to have a very different experience and health practitioners may need to look at the best way of helping people with their specific circumstances and to give care that is based on holistic principles.

“To give a simple example, the ability to climb stairs may not be as important to someone living in a bungalow, as to someone who lives in a second floor flat. Overall patients say they would like help with adapting to the condition and adopting a positive outlook for their future. Therefore a holistic approach needs to balance getting the medication and physical support right, with helping patients establish a sense of wellness and normality despite the condition.”

“The well-being scales developed during the PhD are already being used by the rheumatology department to evaluate a new care pathway for rheumatoid arthritis patients. The key finding that will be integrated into future research trials is that the psychological impact of the condition and patients' ability to adapt to it must be measured in order to make sense of their experience. It's a complex issue and one that we could not have even begun to explore without the willing partnerships of patients.”

Dr Sanderson's research combined individual interviews, focus group and a postal survey. The key aspect of the study overall was that patients were not included only as participants, but also as partners in designing the research and conducting analysis. Pam Richards, the main patient research partner in the study, says “There is genuine inclusiveness in the Academic Rheumatology Department in that Patient Research Partners, people with health conditions such as RA, are considered equal members of the research team and whose experiential knowledge is valued. It's been a joy and a privilege to collaborate with Tessa as her research partner. Tessa has embraced the 'patient perspective' to the advantage of those who will benefit from her research, people who live daily with the emotional as well as physical impact of RA.”

Dr Sanderson's PhD was funded by the Arthritis Research Campaign. She is currently an MRC/ESRC interdisciplinary post-doctoral research fellow in the UWE rheumatology group, developing the theme of well-being with Rheumatoid Arthritis patients from ethnic minority groups.


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