Trinity Researchers put Patients at the Centre of Rheumatoid Arthritis Research
For National Arthritis Week, we caught up with Professor Ursula Fearon regarding her research in the area of rheumatoid arthritis. Professor Fearon leads the Molecular Rhuematology Department in the Trinity Biomedical Sciences Institute, Trinity College Dublin and steers many key studies on this condition.
Rheumatoid arthritis explained
Rheumatoid arthritis (known as RA) is a common autoimmune condition that can cause pain, swelling and stiffness in the joints resulting in disability for patients’ day-to-day tasks. The condition usually affects the hands, feet and wrists. There may be periods where symptoms become worse, known as flares or flare-ups. Clinicians don’t know who will develop rheumatoid arthritis, or whether they will have severe disease. New medications to target bad molecules or cells improve outcomes, however responses to medication may be limited or side-effects may occur. While there is no cure for rheumatoid arthritis, early diagnosis and appropriate treatment enables many people with the condition to have periods of months or even years between flare-ups. Professor Fearon’s research programme aims to find patients who are ‘at-risk’ of arthritis before the signs develop, but when autoantibodies are present in the blood.
Patient Awareness Initiative
Professor Fearon described her group’s current study which places patients with rheumatoid arthritis firmly at its centre. This study is called ‘Rheumatoid Arthritis Patient Awareness Initiative (PA-PAIN)’, and has three main aspects:
- A national patient awareness survey
- National workshops based on the finding of the survey
- A patient representative presenting outputs of the survey at an International meeting, and a patient-directed symposium
An online anonymous survey was developed and completed by more than 1,800 patients with inflammatory arthritis. The objective of this study was to assess the understanding patients with inflammatory arthritis have of their own diagnosis, routine diagnostics tests used in the clinical setting, medication adherence, disease flare, pregnancy and finally to ascertain their attitudes to research studies.
Based on the survey, a series of national workshops were established to provide opportunities for people living with rheumatoid arthritis and their families to understand the importance of early diagnosis, treatment and the development of personalised medicine. A series of eight 2.5 hour long, interactive workshops were delivered throughout Ireland. The workshops were jointly facilitated by a clinician, a scientific researcher and a patient partner to illustrate many aspect of this condition, including how a diagnosis is made and the tests performed, the current therapies available including the benefits, the risks, side effects and potential solutions, the patients perspective, patient engagement with research, and how to improve understanding and knowledge of their disease. Feedback from the workshop led to the prioritisation of key research themes identified by patients.
Study results: the need for increased engagement
The results of this study have highlighted several patient concerns regarding their disease. The need for increased patient education and engagement to improve patients understanding of their disease was identified. In addition, the need to develop strong, long-term patient-clinical-researcher partnerships was highlighted, so that patients can contribute to future project ideas, development and dissemination.
Specifically, less than 35% of patients surveyed had an understanding of diagnostic tests, what the various tests measured, and the implication of the results for their disease. Three quarters of patients were concerned about heredity. There was a high level of understanding of how specific medications treat inflammatory arthritis, and adherence to medication was high. However, a significant proportion of patients (70%) reported a disease-flare following cessation of medication. Patients of childbearing age (69%) were concerned that inflammatory arthritis reduced their chances of getting pregnant, with only 8% believing that arthritis medications were safe to take during pregnancy. Finally, only 9% of patients had ever been asked to participate in a research study.
Impact of the research
The findings of the survey were presented at the National workshops, where a patient, clinician and scientist addressed the queries outlined in the survey. Following a patient- directed Q&A session, the group identified specific areas for research prioritisation specifically addressing the link between lifestyle and level of inflammation, with a particular emphasis on sleep, diet, anxiety and exercise. These findings have led to the development of a patient directed symposium to be held this week for National Arthritis Week, led by Professor Fearon and supported by Arthritis Ireland and the Health Research Board. Key speakers at the online symposium, ‘Sleep, Diet & Exercise: Impact on Inflammation’, are Dr Mary Canavan (Trinity College Dublin), Dr Annie Curtis (Royal College of Surgeons Ireland), Professor Helen Roche (University College Dublin), Dr Fiona Wilson (Trinity College Dublin), and Dr Viviana Marzaioli (University College Dublin).
Patient involvement is a vital part of Professor Fearon’s research, and several information videos are currently being developed in collaboration with patients on fundamental topics such as ‘how to get involved in research’, and ‘lay explanation of the pathogenesis of rheumatoid arthritis’.
Professor Fearon described the importance of patient involvement:
“This study demonstrates a need for the development of stronger patient-partnerships with clinicians and researchers in relation to patient education and engagement with research, to create a platform where patients can have meaningful input and involvement in future research studies.”
Professor Fearon stressed that the research is the research of collaboration by many individuals and groups:
“Many people are involved in this work, including Dr Viviana Marzaioli, Dr Mary Canavan, Siobhan Wade, Professor Sandy Fraser, Professor Sinead Harney, Dr Ronan Mullan, and Professor Douglas Veale. We are grateful for support from Arthritis Ireland and from our patient partners (Alex Donnelly, Claire Kinneavy and Tim Sullivan). We would like to thank all the patients and individuals who were involved in this study, through the survey and the workshops”
National Arthritis Week runs from 12-18th April 2021, and the Online Symposium ‘Sleep Diet & Exercise: Impact on Inflammation’ takes place on Thursday 15th April from 3-5pm.