More than half of patients with axial spondyloarthritis in a survey of ArthritisPower Registry participants said they discussed a change in treatment with their doctor at their most recent visit, and these discussions were about changing medication or increasing the dose in more than two-thirds of instances.
The cross-sectional survey, published in ACR Open Rheumatology, is believed to be the first “to look at treatment decision-making from the patient perspective, meaning this is our first quantitative analysis to examine how patients think about important disease management decisions and communicate with their doctor about their care,” W. Benjamin Nowell, PhD, director of patient-centered research at CreakyJoints and principal investigator of the ArthritisPower registry, said in a news release.
“This study makes it clear that there are unmet treatment needs in the axial spondyloarthritis [axSpA] patient community,” senior author Jessica A. Walsh, MD, rheumatologist and associate professor at the University of Utah, Salt Lake City, said in the release. “In the future, we need to identify the tools that this specific arthritis community needs to ensure that shared decision-making about disease management and treatment escalation is working effectively between the patient and the provider.”
Survey results
Of the survey’s 274 participants with physician-diagnosed axSpA, 57% said they discussed treatment change at their last physician visit, and nearly half of the time it was brought up by the patient. About 80% of patients in the survey said they researched treatment changes before the visit.
The most common discussion points were about changing medicines or increasing dose (69%), compared with reducing dose (28%) or switching treatments (39%). Another 12% of respondents entered free-text responses to an “other” option with things such as exercise, physical therapy, surgery, waiting on results, insurance, and pregnancy.
Close to half (47%) of the patients were taking biologic disease-modifying antirheumatic drugs (bDMARDs), followed by prescription NSAIDs (44%), steroids (16%), or conventional synthetic DMARDs (11%). Half of all patients said they also took prescription muscle relaxers, nerve pain medications or antidepressants, and opioids.
More than half (55%) of patients taking a bDMARD were at least somewhat satisfied with their treatment for axSpA, and about half were satisfied with their control of axSpA-related pain.
Of the 12% of patients in the survey who reported being very satisfied overall with their treatment, 77% were taking a bDMARD, and these bDMARD users said that they prioritized the prevention of long-term consequences and their physician’s advice in their decision-making process.
A large percentage – 43% – said they were somewhat or very dissatisfied with treatment, and nearly two-thirds of these patients had discussed treatment change at their last physician visit.
A large majority of patients who discussed a treatment change agreed to it (85%), most often because their disease was not controlled by their previous treatment or because they thought it could be better controlled by a change in treatment.
The survey respondents were about 50 years old on average, and most were women (87%) and White (85%). They experienced a delay in diagnosis averaging more than 10 years from first onset of axSpA symptoms to initial axSpA diagnosis by a physician.
The study was sponsored by Eli Lilly. The study was also indirectly partially supported by a grant from the Patient-Centered Outcomes Research Institute for ArthritisPower. Dr. Nowell reported receiving grants/contracts from AbbVie, Eli Lilly, and PCORI and is an employee of the Global Healthy Living Foundation. The GHLF receives grants, sponsorships, and contracts from pharmaceutical manufacturers and private foundations. Five authors are employees and shareholders of Eli Lilly. Two authors reported financial relationships with multiple pharmaceutical companies.