During the 2017 European League Against Rheumatism (EULAR) Annual Congress, study results on patient-reported outcomes (PROs) were presented by the online patient support group, CreakyJoints®, in partnership with researchers from the University of Alabama at Birmingham and Northwestern University Feinberg School of Medicine. The findings suggest that patients report PROs even when their symptoms or experience of disease do not markedly change over time.
Specifically, patients in the ArthritisPower research registry were asked to voluntarily complete PROs including the RAPID3 and four of the NIH PROMIS instruments via the free ArthritisPower mobile application on their smartphone or computer. Researchers hypothesized that patients would contribute longitudinal data only when at least one of their scores exceeded a minimally important difference (MID) on any of the PROs examined. Longitudinal data was defined as contributing at least two sets of PROs on unique calendar days during the defined study period.
Of 1,946 patients who registered with ArthritisPower more than 3 months prior to the analysis, 20.6% never contributed any PRO information, 53.3% answered once, and 26.1% answered at least twice. Only 23.1% of patients contributing longitudinal data had a change greater than the MID in any of the five PRO measures. Patients with RA (OR: 1.54, 95% CI: 1.14-2.06), those with biologic use (2.12, 1.43-3.15), and those with Twitter accounts (1.40, 1.08-1.82) were more likely to contribute longitudinal PRO data in the absence of regular reminders.
Researchers concluded that patients are willing to use their smartphones to record PROs, but additional efforts are needed to engage patients to contribute PRO data over time.
Dr. Andy Thompson is an Associate Professor at Western University and founder of Rheuminfo.com, Rheumtalks.com, and RheumReports.com.
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