BackgroundSocial media may complement traditional data sources to answer comparative effectiveness/safety questions after medication licensure.MethodsThe Treato platform was used to analyze all publicly available social media data including Facebook, blogs, and discussion boards for posts mentioning inflammatory arthritis (e.g. rheumatoid, psoriatic). Safety events were self-reported by patients and mapped to medical ontologies, resolving synonyms. Disease and symptom-related treatment indications were manually redacted. The units of analysis were unique terms in posts. Pre-specified conditions (e.g. herpes zoster (HZ)) were selected based upon safety signals from clinical trials and reported as pairwise odds ratios (ORs); drugs were compared with Fisher’s exact test. Empirically identified events were analyzed using disproportionality analysis and reported as relative reporting ratios (RRRs). The accuracy of a natural language processing (NLP) classifier to identify cases of shingles associated with arthritis medications was assessed.ResultsAs of October 2015, there were 785,656 arthritis-related posts. Posts were predominantly US posts (75%) from patient authors (87%) under 40 years of age (61%). For HZ posts (n = 1815), ORs were significantly increased with tofacitinib versus other rheumatoid arthritis therapies. ORs for mentions of perforated bowel (n = 13) were higher with tocilizumab versus other therapies. RRRs associated with tofacitinib were highest in conditions related to baldness and hair regrowth, infections and cancer. The NLP classifier had a positive predictive value of 91% to identify HZ. There was a threefold increase in posts following television direct-to-consumer advertisement (p = 0.04); posts expressing medication safety concerns were significantly more frequent than favorable posts.ConclusionSocial media is a challenging yet promising data source that may complement traditional approaches for comparative effectiveness research for new medications.
BackgroundWhile healthcare provider priorities often coalesce around clinical concerns, little has been done to explore the most pressing educational concerns among rheumatic disease patients.ObjectivesTo identify healthcare education topics most important to patients with inflammatory arthritis and other rheumatic conditions.MethodsParticipants 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.ResultsFrom 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%).ConclusionsPatients 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 ...
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