Background While healthcare provider priorities often coalesce around clinical concerns, little has been done to explore the most pressing educational concerns among rheumatic disease patients.
Objectives To identify healthcare education topics most important to patients with inflammatory arthritis and other rheumatic conditions.
Methods Participants were recruited from within the membership registry of the rheumatology patient community, CreakyJoints, to participate in one of six nominal groups held in June 2015. Each of the six groups generated a set of educational topics or questions (“items”), and then rank-ordered them within each focus group. Items were aggregated into common topic groups, redundant items de-duplicated, and then categorized into common topic groups and themes. Based on the qualitative work, a survey describing items from all nominal groups was created and deployed more widely to the CreakyJoints membership. Demographics and other disease-related features were captured.
Results From the nominal groups, 8 educational themes emerged that were related to 28 unique educational topics (see Table 1). Overall, “Lifestyle changes and patient environment modifications” was the most valued theme, receiving 14% of votes. Medication data (drug dosing, interactions, performance, etc.), physician selection, and knowledge of disease/disease progression were also strongly emphasized at 12%, 11%, and 10%, respectively. Themes of least interest included friend/family/community support, financial concerns (including insurance), and social interactions, with nominal group vote percentages of 3%, 2%, and 1%, respectively.
Among 400 participants who completed the survey, mean (SD) age was 55 (11.5) years with 86% being women and 82% being white. Participant health conditions (not mutually exclusive) included rheumatoid arthritis (74%), osteoarthritis (45%), fibromyalgia (26%), osteoporosis (18%), psoriatic arthritis (8%), lupus (5%), and ankylosing spondylitis (5%). The top 10 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%); What are the side effects of available drugs, and how do the drugs interact with each other (82%); What are the available medications and treatments for your case (80%); How to understand the results of tests used to monitor your condition (79%); How to find the right rheumatologist (76%); How to take an active role in decisions about your care (76%); How your life will change as your disease progresses (74%); and How to speak up and help manage your care when your perspective is different from your doctor's (73%).
Conclusions Patients with rheumatic diseases are concerned about a variety of topics, which include lifestyle changes/patient environment modifications, medication data, and physician choice. Patient-centered research should maximally respond to addressing questions of importance to patients, and this survey is a first step in identifying and prioritizing the topics that matter most to patients.
Acknowledgement This work was supported by educational grants from Bristol-Myers Squibb and Pfizer.
Disclosure of Interest None declared