Patients and professionals point to direction for arthritis research
What should arthritis research focus on going forward? In a new study, patients and healthcare professionals have collaborated to identify the ten most important questions for research in the field. At the top of the list is prevention.
There is a lot of research being done on rheumatic diseases. However, not all research responds to what patients and healthcare professionals consider most urgent.
Accurate research
The treatment of arthritis, known as rheumatoid arthritis (RA), has evolved considerably. However, we still don't know everything about its causes, prevention, and long-term effects.
Previously, researchers and funders have largely determined what research is done. In recent years, patients have been given a greater role in rheumatic disease research through user participation. The idea behind this project is to identify what patients with rheumatoid arthritis (RA) and clinicians want to see researched.
“We wanted to find out what actually matters most to both those living with RA and healthcare professionals involved in the treatment of RA,” says Kristine Røren Nordén. She is a physiotherapist and researcher at the REMEDY Center at Diakonhjemmet Hospital.
Nordén is the first author of a recently published scientific article in BMC Rheumatology. In it, she and her co-authors describe the process of prioritizing which questions researchers should work on for rheumatoid arthritis (RA). The work resulted in a list of 10 priorities.
The study was conducted in collaboration between the REMEDY at Diakonhjemmet Hospital, the Norwegian Rheumatology Association (NRF) and FORMI / Skeletal Network at Oslo University Hospital.
Fruitful collaboration
The researchers used the so-called James Lind Alliance (JLA) method. It is a British model that has been used in a number of diseases and conditions to identify research questions that patients and healthcare professionals feel are lacking answers.
– By using the JLA method, we bring out the voices of those who are actually most affected by the results of the research being conducted, explains Nordén.
The process had several steps. One of them was three focus group interviews with patients and healthcare professionals.
The purpose was to collect relevant research questions. The questions were then ranked in a survey with 554 participants.
The highest-ranked questions were then discussed in a workshop where patients and healthcare professionals came up with a top ten list of the most important research questions in arthritis.
Prevention and tailored treatment at the top
The top results were about prevention, rapid diagnosis and more personalized treatment
– It is clear that both patients and healthcare professionals want more knowledge about how arthritis can be prevented and how treatment can be adapted to the individual, says Nordén.
Many were also concerned about side effects, exercise, intestinal health and the need for comprehensive follow-up.
The ten highest priority research questions
- How can we prevent RA?
- Why do symptoms of RA vary and what factors can increase disease activity and symptoms of RA?
- How can we ensure rapid diagnosis of RA?
- Which RA treatment works best for whom?
- What are the side effects of RA treatment and how can these be reduced or avoided?
- What measures can reduce the need for drug treatment in RA?
- Is RA a risk factor for other diseases and conditions?
- How to ensure a holistic approach in the treatment of RA?
- What types of activity and exercise are appropriate for people with RA?
- Is there a connection between gastrointestinal health and RA?
Will steer research in the right direction
According to Nordén, the results show that both patients and healthcare professionals want research that is more relevant to practice.
Nordén hopes the list will guide efforts towards topics that matter most to those living with the disease.
– We hope this list will become a compass for further research – so that resources are used where they provide the most benefit to patients. This can be used by researchers, health authorities and funders to guide future initiatives, says Nordén.
The study is supported by the Dam Foundation .
