1. Associations Between Patient-Reported Outcome Measures of Physical and Psychological Functioning and Willingness to Share Social Media Data for Research Among Adolescents With a Chronic Rheumatic Disease: Cross-Sectional Survey.
- Author
-
Weitzman, Elissa, Minegishi, Machiko, Cox, Rachele, and Wisk, Lauren
- Subjects
PROM ,adolescent ,adolescents ,chronic illness ,confidential ,confidentiality ,outcome measure ,outcome measures ,patient data ,patient reported ,patient-reported outcomes ,personal ,personally generated data ,privacy ,quality of life ,research involvement ,rheumatic ,rheumatic disease ,rheumatoid ,sharing ,social media ,youth - Abstract
BACKGROUND: Social media data may augment understanding of the disease and treatment experiences and quality of life of youth with chronic medical conditions. Little is known about the willingness to share social media data for health research among youth with chronic medical conditions and the differences in health status between sharing and nonsharing youth with chronic medical conditions. OBJECTIVE: We aimed to evaluate the associations between patient-reported measures of disease symptoms and functioning and the willingness to share social media data. METHODS: Between February 2018 and August 2019, during routine clinic visits, survey data about social media use and the willingness to share social media data (dependent variable) were collected from adolescents in a national rheumatic disease registry. Survey data were analyzed with patient-reported measures of disease symptoms and functioning and a clinical measure of disease activity, which were collected through a parent study. We used descriptive statistics and multivariate logistic regression to compare patient-reported outcomes between youth with chronic medical conditions who opted to share social media data and those who did not opt to share such data. RESULTS: Among 112 youths, (age: mean 16.1, SD 1.6 y; female: n=72, 64.3%), 83 (74.1%) agreed to share social media data. Female participants were more likely to share (P=.04). In all, 49 (43.8%) and 28 (25%) participants viewed and posted about rheumatic disease, respectively. Compared to nonsharers, sharers reported lower mobility (T-score: mean 49.0, SD 9.4 vs mean 53.9, SD 8.9; P=.02) and more pain interference (T-score: mean 45.7, SD 8.8 vs mean 40.4, SD 8.0; P=.005), fatigue (T-score: mean 49.1, SD 11.0 vs mean 39.7, SD 9.7; P
- Published
- 2023