Title of the study: Myths vs Realities: An honest feedback from the scientific community on collaboration with patients partners in the NECESSITY research project
Background
Are patient partners a necessity in research? This is a question the EULAR community has answered by recognizing the importance of involving patients in developing recommendations. The role of patients in research is growing but still new in Europe. In Canada, ACE is a proud collaborator with the Arthritis Patient Advisory Board at Arthritis Research Canada who bring personal experience and arthritis knowledge to research decision making at Arthritis Research Canada. ACE and APAB advocate together to ensure the patient perspective is represented on research matters related to prevention, treatment and self-management of arthritis.
At the 2024 EULAR congress, researchers presented survey data highlighting the scientific community’s views on involving patients in research for Sjögren’s disease.
Study Details
Researchers conducted a survey to understand the views of scientists on involving patients in research focused on primary Sjögren’s disease, an autoimmune disorder causing dry eyes and mouth, fatigue, pain, and other complications. While treatments exist for symptoms, there are no cures. The survey collected feedback from the scientific community about the necessity and impact of patient partners in research.
Findings
The survey showed that scientists see value in involving patients in research. They believe that patient partners can offer unique insights and help develop better treatments. For example, a majority of respondents favoured working with patients to validate unmet needs – especially those around symptoms and care expectations. Over 95% of respondents stated they would be willing to seek out patient partners in the future and view them as genuine research partners.
Key Takeaways
Involving patients in research is seen as beneficial by the scientific community. This collaboration can lead to better outcomes and more effective treatments. As this practice evolves, it is essential to continue exploring its benefits and challenges to make the most of patient involvement in research.
Additional Learning Resources
- Click here to learn more about the study
- Visit ACE’s About Sjögren’s syndrome page to learn more about Sjögren’s syndrome
Title of the study: Differential joint-level responses to TNF inhibitors in psoriatic arthritis: A collaborative European observational cohort study
Background
There are many treatment options for psoriatic arthritis (PsA), and EULAR recommends a practical and progressive approach to management based on disease activity and where it affects people (for example, as localized pain, tenderness to the touch, or stiffness).1 But assessment of treatment outcomes primarily focuses on improvement in the number of affected joints, disregarding their specific locations.
A study presented at the 2024 EULAR congress looks at how different joints in patients with PsA respond to TNF inhibitor (TNFi) treatments. Understanding these differences can help doctors tailor treatments for better outcomes.
Study Details
- Involved over 1,700 PsA patients starting their first TNFi treatment.
- Researchers tracked the time it took for joint swelling to reduce in 28 different joints over 2 years.
- They focused on the upper limb joints, comparing the results to the third digit joint.
Findings
At the start, patients had an average of 4.8 swollen joints and 7.4 tender joints. The study found that elbow and shoulder joints showed faster improvement compared to the third digit joint. Wrist joints, however, showed slower improvement. These results suggest that some joints respond better to TNFi treatments than others.
Key Takeaways
Different joints in PsA patients respond better to TNFi treatments than others. Understanding these differences can help doctors choose the best treatment strategies for each patient. Further research is needed to explore why these differences exist and how to optimize treatments for all joints.
Want to learn more?
Psoriatic arthritis is a complex disease, which makes the conversations challenging when you discuss it with your rheumatologist. ACE has developed a JointHealth™ Education Course focussing on a very specific moment in the patient journey with PsA – the time spent in the rheumatologist’s office. This course is designed based on findings from a global study on the experiences of people living with PsA.
Additional Learning Resources
- Click here to learn more about the study
- Visit ACE’s About Psoriatic Arthritis page to learn more about PsA
Title of the study: Risk of fragility fracture after long-term discontinuation of osteoporosis treatment in post-menopausal osteoporosis women in France: a population-based study conducted on the nationwide claim database (SNDS)
Background
This study, presented at the 2024 EULAR congress, investigates the risk of fractures in women who stop osteoporosis treatment. Osteoporosis is a condition that weakens bones, making them more prone to fractures. Understanding the effects of stopping treatment is crucial for managing the condition.
Study Details
- Analyzed data from a nationwide claim database in France.
- Included post-menopausal women who stopped taking denosumab or bisphosphonates, which are common osteoporosis treatments.
- The sample size consisted of 42.5% of women who stopped denosumab for at least one year.
Findings
The study found that stopping denosumab doubled the risk of fractures in women. Additionally, the increased fracture risk differed between those who stopped oral versus intravenous bisphosphonates. These findings suggest that stopping osteoporosis treatment can significantly increase fracture risk.
Key Takeaways
It is important for women with osteoporosis to continue their treatment to avoid increased fracture risk. Further research is needed to understand the differences in fracture risk between oral and intravenous bisphosphonates. These findings could help update guidelines for managing osteoporosis treatment.
Want to learn more?
Arthritis Consumer Experts hosts Arthritis at Home – a weekly program featuring interviews with Canadian experts in clinical rheumatology, arthritis scientists and patients, physio and occupational therapists, psychologists and health economists.
This episode of Arthritis at Home features an interview with Dr. Suzanne Morin, clinician scientist and Associate Professor at McGill University, about osteoporosis, bone health, and the importance of nutrition and exercise.
Additional Learning Resources
- Click here to learn more about the study.
- Visit Osteoporosis Canada to learn more about osteoporosis
References
1. Gossec L, et al. EULAR recommendations for the management of psoriatic arthritis with pharmacological therapies: 2023 update. Ann Rheum Dis 2024; DOI: 10.1136/ard-2024-225531