Background/Purpose: Patients are increasingly recruited from online communities to provide insight regarding their lived experiences and preferences for treatment and services. We compared physical, social, and emotional health patient reported outcomes in people with rheumatoid arthritis (RA) recruited from an online patient community with those seen in an arthritis clinic in one academic medical center.

Methods: Participants were recruited from 2 sources: a single academic rheumatology clinic, and www.creakyjoints.org, an online arthritis patient community. Clinic participants were selected through convenience sampling of patients. Online participants were invited via email and screened for probable RA using a modified version of the connective tissue screening questionnaire (CSQ) that added a DMARD checklist and questions concerning personal and family history of psoriasis to improve specificity for RA. Patients provided sociodemographic and disease information and completed PROMIS fixed item Short Forms (SF): Physical Function 4a/20a (PF), Pain Interference 4a/8a (PI), Fatigue 4a/7a/8a, Ability to Participate in Social Roles and Activities 4a/8a (PSRA), Depression 4a/8a, Anxiety 4a, and Sleep Disturbance 4a. PROMIS scores are reported as T-Scores with a population mean of 50 and SD of 10, with higher scores indicating more of the trait measured. Groups were compared using t-tests.

Results: Compared to clinic patients (n=52), online participants (n=200) had more education (69% vs 92% >High School), shorter disease duration (mean[SD]: 15[11] vs 10[10] yrs) and were more likely to be disabled due to RA (15% vs 32%) (all p<0.05), but did not differ by age, sex, or minority status. Most clinic participants were relatively well-controlled with 64.6% in LDA or remission; mean CDAI was 7 (SD 7). Scores comparing different length PROMIS SF for the same trait (e.g. fatigue) were similar. Compared with the US population, both groups had worse PF and greater PI and fatigue. Compared with clinic patients, online participants reported significantly greater impairments in PF (42[12]) vs 34[6]), PI (56[10] vs 65[7]), fatigue (55[14] vs 66[8]), PSRA (49[11] vs 39[7]), depression (50[11] vs 58[10]), anxiety (50[11] vs 58[9]) and sleep disturbance (51[10] vs 58[8])(all p’s < .001).

Conclusion: These results suggest that patients recruited through online arthritis communities may differ in some demographic features from those seen in an academic clinic. On average, online participants reported significantly worse physical, social, and emotional health. A limitation of the study is the absence of information regarding disease activity, treatment, and comorbidities. Better understanding these differences will be important to improve generalizability of PRO results from online communities. Funding PCORI IP2-PI0000737 and SC14-1402-10818. Table I. Comparison of selected RA symptoms and impacts between clinic and online patients.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/people-with-rheumatoid-arthritis-recruited-from-an-online-patient-community-may-differ-from-clinical-populations-in-symptoms-and-impacts/