Rheumatiod arthritis: Preventative treatment
Rheumatoid arthritis (sometimes called “RA”) is a common chronic inflammatory disease that affects around 1% of the population. It is 2-3 times more common in women. In most cases, patients begin having symptoms between 40 to 60 years of age, but it can begin earlier, or later in life.
RA affects the joints and causes pain, swelling, and stiffness, but also fatigue. If patients are not treated, the joints can suffer permanent damage, which subsequently can lead to disability. To date, there is no cure, which means that for the vast majority of patients treatments are long term, with the aim of controlling the inflammatory disease activity and reducing symptoms.
There is increasing research interest in the idea of treating individuals who are at an increased risk of developing RA to assess whether a relatively short course of therapy will prevent or delay the onset of RA. One such ‘at risk’ group are the siblings and children of patients with RA, who are four times more likely to develop the disease. The presence of RA-related autoantibodies in the blood increases the risk of developing the disease further.
This PREFER case study will ask siblings, children and members of the general public about their preferences for preventive treatments for RA. The case study will further look at how participant characteristics, country (UK vs Germany), population (siblings and children vs. general population), knowledge/experience with RA will impact on these treatment preferences. In addition, this case study will evaluate the similarity of two different methods to measure treatment preferences.
G Simons, K Schölin Bywall, M Englbrecht, EC Johansson, RL DiSantostefano, C Radawski, J Veldwijk, K Raza & M Falahee (2022) Exploring preferences of at-risk individuals for preventive treatments for rheumatoid arthritis, Scandinavian Journal of Rheumatology, DOI: 10.1080/03009742.2022.2116805
Simons G, Veldwijk J, DiSantostefano R, Englbrecht M, et al., Preferences for preventive treatments for rheumatoid arthritis: discrete choice survey in the UK, Germany and Romania, Rheumatology, 2022, DOI: 10.1093/rheumatology/keac397
Simons G, Caplan J, DiSantostefano R, Veldwijk J, et al., Systematic review of quantitative preference studies of treatments for rheumatoid arthritis among patients and at-risk populations, Arthritis Research & Therapy, 2022, DOI: 10.1186/s13075-021-02707-4
Falahee M, Simons G, DiSantostefano R, Valor Méndez L et al., Treatment preferences for preventive interventions for rheumatoid arthritis: protocol of a mixed methods case study for the Innovative Medicines Initiative PREFER project, BMJ Open, 2021;11:e045851 DOI: 10.1136/bmjopen-2020-045851
|Therapeutic area||Rheumatoid arthritis|
|Study led by||University of Birmingham
University of Erlangen
|PREFER leads team||Karim Raza
|MPLC decision points of interest||Early-development and post-marketing|
|PREFER case study acronym||RA|
|Clinical objectives||Assessing the preferences of people at risk of RA for preventive treatments
Evaluating the maximum acceptable risk (MAR)/Minimum acceptable benefit (MAB)
Characterising preference heterogeneity and characteristics that may explain heterogeneity
|Patients from||United Kingdom
|Methods in Qualitative study||Focus group discussion
Nominal group technique
|Methods in Quantitative study||DCE
Probabilistic Threshold Technique
|End-date qualitative data collection||December 2019|
|End-date quantitative data collection||Q3 2020|
Karim Raza, lead for Rheumatoid Arthritis case study
Karim Raza is Professor of Clinical Rheumatology at the University of Birmingham and Honorary Consultant Rheumatologist and Director of Research and Development at Sandwell and West Birmingham Hospitals NHS Trust. His research focuses on early rheumatoid arthritis, addressing pathogenic mechanisms, biomarker development, strategies to enhance clinical outcomes for patients with a new onset of disease and patient perspectives on disease and treatment. Specifically Karim is interested in:  Mechanisms driving the molecular basis for the switch to disease persistence and the timing of this switch in early arthritis.  Predictors of outcome in patients with early inflammatory arthritis and patients’ perspectives on predictive testing and preventive treatments.  Management pathways for patients with early rheumatoid arthritis, including the development of strategies to facilitate rapid patient assessment. Karim is an active proponent of patient and public involvement in research and has coordinated the establishment of the Birmingham Rheumatology Patient Research Partnership
Jorien Veldwijk, public co-lead for case studies
Jorien Veldwijk is a senior research fellow at the Erasmus Medical Center. Dr. Veldwijk’s research mainly covers measuring patients’ decision-making within a broad range of health care and public health topics as well as methodological issues. She is involved as a DCE expert in several studies in different organisations and countries, combining applied and methodological research which has resulted in publications in high-impact journals.
Preventing RA - What treatments do people at risk of rheumatoid arthritis prefer?
Rheumatoid arthritis, often referred to as RA, is a long-term condition that mainly affects the joints. RA causes pain, swelling, stiffness and often fatigue. If patients are not treated, their joints can suffer permanent damage, which can lead to disability. Preventative treatment can help. In this study, 350 first degree relatives of RA patients and 3000 members of the general public were asked to imagine that they had a 60% risk of developing RA in the next 2 years before being asked to make treatment choices. We have produced a plain language summary to describe the results from our case study that is now available for download.
Preventing rheumatoid arthritis
Simons, G et al. Preventing RA: What treatments do people at risk of rheumatoid
arthritis prefer?. Zenodo. 2021. DOI: 10.5281/zenodo.5607650
News from this case study
- Preventive treatment of Rheumatoid Arthritis is personal
- Patient preferences for treatments to prevent Rheumatoid Arthritis
- Informing future preference research for Rheumatoid Arthritis
- Recorded webinar on patient preferences in Rheumatoid Arthritis now online!
- Psychosocial factors might hold the key to understanding preference heterogeneity
PREFER case studies
Find out what we have published so far!
We are publishing our results in reports and scientific journals.