People with arthritis are open to research participation but are being underutilised, says study

Preliminary results from a patient-led, patient-centred research registry for people with arthritis has found that most patients, 93%, have never participated in arthritis research and that they would be interested in participating, particularly if the opportunity was presented by their own doctor.

The results, were presented at last weeks’ European Congress of Rheumatology (EULAR 2016) in London, by Dr W Benjamin Nowell, lead author of the study and director of research at Creakyjoints®, an online resource for more than 100,000 arthritis patients and their families around the world who are seeking education, support, advocacy and patient-centred research.

In collaboration with the University of Alabama at Birmingham, and supported by the Patient Centered Outcomes Research Institute (PCORI), CreakyJoints created ArthritisPower®, a mobile and desktop application which allows patients to track, measure and share they symptoms and treatment outcomes while simultaneously participating in arthritis via informed consent and the first ever patient-led, patient-centered research registry for arthritis.

As part of its development, CreakyJoints surveyed its membership to better understand how arthritis patients prefer to learn about research opportunities, who they most trust to invite their participation in studies, and their level of interest in study participation. As described in the PARE presentation, results show that while most patients, 93%, have never participated in arthritis research, they would be interested in participating, particularly if the opportunity was presented by their own doctor.

A sample of 970 registered CreakyJoints members who identified as rheumatoid arthritis patients completed a survey on willingness to participate in research in 2014-2015. Most patients (68%) had never taken part in research, yet nearly all respondents (93%) would be somewhat (27%) or very interested (66%) in research participation if they were invited by their physician. Similarly, patients would be willing to participate if they were invited by a medical school/hospital (87%), non-profit organization (79%), or the government (73%). More than half of all respondents expressed interest in working with a drug company (63%), but there was somewhat lower interest in working with a private company (50%) or insurance company (46%).

In a separate study aiming to better understand the arthritis community’s research priorities, CreakyJoints® members were asked to identify and rank their most pressing education and research concerns. As reported in the poster presentation, among the individual items rated as “Extremely Important” by a majority of patients were: How arthritis affects more than just your joints (86%), What are the signs that the medication is not working (84%), Importance of knowing about how the disease will progress even if the news is bad (83%), among others.

The two-phase study included virtual focus groups followed by on online survey. In the first phase 47 CreakyJoints members participated in six nominal groups held in June and July, 2015. Each group generated a set of education topics in their own words and then rank-ordered their relative importance. Based on this qualitative work, a survey was created and, in the second phase, deployed more widely to the CreakyJoints membership. Items on the survey were topics expressed by patients in the nominal groups. Among the 400 survey participants, the mean (SD) age was 55 (11.5) years with 86% women and 82% white. Participant health conditions included a range of rheumatologic conditions including rheumatoid arthritis, osteoarthritis, fibromyalgia, osteoporosis, psoriatic arthritis.

“Understanding the education needs of patients will allow us to better influence future research, particularly as we engage with institutions and scientists interested in working with ArthritisPower infrastructure and data,” said Jeffrey Curtis, MD, MS, MPH, William J. Koopman Endowed Professor in Rheumatology and Immunology at the University of Alabama at Birmingham, Division of Clinical Immunology and Rheumatology, a Principal Investigator of ArthritisPower and a study co-author. “Certainly, identifying and studying new treatment options should remain a key component of scientific engagement, but this study reiterates that quality of life measures as well as concerns about disease progression and treatment are high priority topics for the arthritis community.”

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