To coincide with National Arthritis Week (April 12 – 16) we caught up with Trinity’s Professor Ursula Fearon to shine the spotlight on her research into rheumatoid arthritis.
Professor Fearon leads the Molecular Rheumatology Department in the Trinity Biomedical Sciences Institute and steers many key studies on this condition.
What is rheumatoid arthritis?
Rheumatoid arthritis (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, and 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 live with a severe form of the disease. New medications to target bad molecules or cells improve outcomes but responses to medication may be limited and side-effects may occur.
While there is no cure for RA, 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 RA firmly at its centre. This study is called ‘Rheumatoid Arthritis Patient Awareness Initiative (PA-PAIN)’, and has three main aspects:
1) A national patient awareness survey
2) National workshops based on survey results
3) A patient rep presenting at an international meeting, and a patient-directed symposium
The results have shown there is a need for increased patient education and engagement to improve patient understanding of RA, as well as a need for long-term, patient-clinician-researcher partnerships so that patients can contribute to future project ideas, development and dissemination.
Specific results of interest include:
- less than 35% of patients understood the diagnostic tests, what they measured, or the implication of the results
- Three-quarters were concerned about heredity
- 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
- Only 9% of patients had ever been asked to participate in a research study
Impact of the research
Following a patient-directed Q&A session at one of the National Workshops, 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, held this week and 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 and Dr Fiona Wilson (both from Trinity), Dr Annie Curtis (Royal College of Surgeons Ireland), and Professor Helen Roche and Dr Viviana Marzaioli (both from 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 said:
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.
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.