Accepted for/Published in: JMIR Pediatrics and Parenting
Date Submitted: Mar 30, 2023
Open Peer Review Period: Mar 21, 2023 - May 16, 2023
Date Accepted: Aug 15, 2023
(closed for review but you can still tweet)
Associations among patient-reported outcomes measures of physical and psychological functioning and willingness to share social media data for research among adolescents with a chronic rheumatic disease: a cross-sectional survey
ABSTRACT
Background:
Social media (SM) data may augment understanding of disease and treatment experiences and quality-of-life of youth with chronic medical conditions (YCMC). Little is known about willingness of YCMC to share their SM for health research, and differences in health status between sharing/non-sharing YCMC.
Objective:
To evaluate the associations between patient-reported measures of disease symptoms and functioning and willingness to share SM data.
Methods:
Between February 2018-August 2019, at a routine clinic visit, we collected survey data from adolescents in a national rheumatic disease (RD) registry about their SM use and willingness to share SM data (dependent variable). Survey data were analyzed with patient-reported measures of disease symptoms and functioning, and a clinical measure of disease activity, collected through a parent study. We used descriptive statistics and multivariate logistic regression to compare YCMC who opted to share versus not share SM on patient-reported outcomes.
Results:
Among 112 youth, (mean age 16.1 years, 64% female), 83 (74%) agreed to share SM data. Females were more likely to share (P=.037). In all, 44% and 25% viewed and posted about RD, respectively. Compared to non-sharers, sharers reported average lower mobility (49.0 (SD 9.4) vs. 53.9 (SD 8.9), P=.015), more pain interference (45.7 (SD 8.8) vs. 40.4 (SD 8.0), P=.005), fatigue (49.1 (SD 11.0) vs. 39.7 (SD 9.7), P<.001), depression (48.1 (SD 8.9) vs. 42.2 (SD 8.4), P=.003), and anxiety (45.2 (SD 9.3) vs. 38.5 (SD 7.0), P<.001). In regression analyses adjusting for age, sex, study site, and Physician Global Assessment score,each one unit increase in symptoms was associated with greater odds of willingness to share SM data, for measures of pain interference (AOR 1.07, 95% CI 1.001-1.14), fatigue (AOR 1.08, 95% CI 1.03-1.13), depression (AOR 1.07, 95% CI 1.01-1.13), and anxiety (AOR 1.10, 95% CI 1.03-1.18).
Conclusions:
High percentages of youth with RD use and were willing to share their SM data for research. Sharers reported worse symptoms and functioning than non-sharers. SM may offer a potent information source and engagement pathway for youth with RD, but differences between sharing/non-sharing youth merit consideration when designing studies and evaluating SM-derived findings.
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