PDF(Pubmed)
Abstract：
UNASSIGNED: 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.
UNASSIGNED: We aimed to evaluate the associations between patient-reported measures of disease symptoms and functioning and the willingness to share social media data.
UNASSIGNED: 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.
UNASSIGNED: 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<.001), depression (T-score: mean 48.1, SD 8.9 vs mean 42.2, SD 8.4; P=.003), and anxiety (T-score: mean 45.2, SD 9.3 vs mean 38.5, SD 7.0; P<.001). In regression analyses adjusted for age, sex, study site, and Physician Global Assessment score, each 1-unit increase in symptoms was associated with greater odds of willingness to share social media data, for measures of pain interference (Adjusted Odds Ratio [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).
UNASSIGNED: High percentages of youth with rheumatic diseases used and were willing to share their social media data for research. Sharers reported worse symptoms and functioning compared to those of nonsharers. Social media may offer a potent information source and engagement pathway for youth with rheumatic diseases, but differences between sharing and nonsharing youth merit consideration when designing studies and evaluating social media-derived findings.
UNASSIGNED: We aimed to evaluate the associations between patient-reported measures of disease symptoms and functioning and the willingness to share social media data.
UNASSIGNED: 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.
UNASSIGNED: 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<.001), depression (T-score: mean 48.1, SD 8.9 vs mean 42.2, SD 8.4; P=.003), and anxiety (T-score: mean 45.2, SD 9.3 vs mean 38.5, SD 7.0; P<.001). In regression analyses adjusted for age, sex, study site, and Physician Global Assessment score, each 1-unit increase in symptoms was associated with greater odds of willingness to share social media data, for measures of pain interference (Adjusted Odds Ratio [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).
UNASSIGNED: High percentages of youth with rheumatic diseases used and were willing to share their social media data for research. Sharers reported worse symptoms and functioning compared to those of nonsharers. Social media may offer a potent information source and engagement pathway for youth with rheumatic diseases, but differences between sharing and nonsharing youth merit consideration when designing studies and evaluating social media-derived findings.
摘要：
■社交媒体数据可能会增强对患有慢性病的年轻人的疾病和治疗经验以及生活质量的了解。关于在患有慢性疾病的青年中分享用于健康研究的社交媒体数据的意愿以及共享和不共享患有慢性疾病的青年之间的健康状况差异，人们知之甚少。
■我们旨在评估患者报告的疾病症状和功能指标与分享社交媒体数据的意愿之间的关联。
■在2018年2月至2019年8月期间，在常规诊所就诊期间，有关社交媒体使用和分享社交媒体数据的意愿(因变量)的调查数据来自国家风湿病登记处的青少年.调查数据采用患者报告的疾病症状和功能指标以及疾病活动的临床指标进行分析，这是通过一项家长研究收集的。我们使用描述性统计和多变量逻辑回归来比较选择共享社交媒体数据的患有慢性疾病的年轻人和不选择共享此类数据的年轻人之间的患者报告结果。
■在112名年轻人中，（年龄：平均16.1，SD1.6y；女性：n=72，64.3％），83（74.1%）同意分享社交媒体数据。女性参与者更有可能分享(P=.04)。总之,49名(43.8%)和28名(25%)参与者查看并发布了关于风湿病的信息，分别。与非共享者相比，共享者报告了较低的移动性（T评分：平均49.0，SD9.4与平均53.9，SD8.9；P=.02）和更多的疼痛干扰（T评分：平均45.7，SD8.8与平均40.4，SD8.0；P=.005），疲劳（T评分：平均49.1，SD11.0与平均39.7，SD9.7；P<.001），抑郁（T评分：平均48.1，SD8.9与平均42.2，SD8.4;P=.003），和焦虑（T评分：平均45.2，SD9.3vs平均38.5，SD7.0；P<.001）。在调整年龄的回归分析中，性别,研究地点,和医师全球评估评分，症状每增加1个单位，就会增加分享社交媒体数据的意愿，对于疼痛干扰的测量(调整后赔率比[AOR]1.07，95%CI1.001-1.14)，疲劳（AOR1.08，95%CI1.03-1.13），抑郁症（AOR1.07，95%CI1.01-1.13），和焦虑（AOR1.10，95%CI1.03-1.18）。
■使用风湿性疾病并愿意分享其社交媒体数据进行研究的青年比例很高。与非共享者相比，共享者报告的症状和功能更差。社交媒体可能为患有风湿性疾病的年轻人提供有效的信息来源和参与途径，但是在设计研究和评估社交媒体得出的结果时，共享和不共享青年之间的差异值得考虑。
■我们旨在评估患者报告的疾病症状和功能指标与分享社交媒体数据的意愿之间的关联。
■在2018年2月至2019年8月期间，在常规诊所就诊期间，有关社交媒体使用和分享社交媒体数据的意愿(因变量)的调查数据来自国家风湿病登记处的青少年.调查数据采用患者报告的疾病症状和功能指标以及疾病活动的临床指标进行分析，这是通过一项家长研究收集的。我们使用描述性统计和多变量逻辑回归来比较选择共享社交媒体数据的患有慢性疾病的年轻人和不选择共享此类数据的年轻人之间的患者报告结果。
■在112名年轻人中，（年龄：平均16.1，SD1.6y；女性：n=72，64.3％），83（74.1%）同意分享社交媒体数据。女性参与者更有可能分享(P=.04)。总之,49名(43.8%)和28名(25%)参与者查看并发布了关于风湿病的信息，分别。与非共享者相比，共享者报告了较低的移动性（T评分：平均49.0，SD9.4与平均53.9，SD8.9；P=.02）和更多的疼痛干扰（T评分：平均45.7，SD8.8与平均40.4，SD8.0；P=.005），疲劳（T评分：平均49.1，SD11.0与平均39.7，SD9.7；P<.001），抑郁（T评分：平均48.1，SD8.9与平均42.2，SD8.4;P=.003），和焦虑（T评分：平均45.2，SD9.3vs平均38.5，SD7.0；P<.001）。在调整年龄的回归分析中，性别,研究地点,和医师全球评估评分，症状每增加1个单位，就会增加分享社交媒体数据的意愿，对于疼痛干扰的测量(调整后赔率比[AOR]1.07，95%CI1.001-1.14)，疲劳（AOR1.08，95%CI1.03-1.13），抑郁症（AOR1.07，95%CI1.01-1.13），和焦虑（AOR1.10，95%CI1.03-1.18）。
■使用风湿性疾病并愿意分享其社交媒体数据进行研究的青年比例很高。与非共享者相比，共享者报告的症状和功能更差。社交媒体可能为患有风湿性疾病的年轻人提供有效的信息来源和参与途径，但是在设计研究和评估社交媒体得出的结果时，共享和不共享青年之间的差异值得考虑。
