Stinson Jennifer N, Lalloo Chitra, Hundert Amos S, Campillo Sarah, Cellucci Tania, Dancey Paul, Duffy Ciaran, Ellsworth Janet, Feldman Brian M, Huber Adam M, Johnson Nicole, Jong Geert't, Oen Kiem, Rosenberg Alan M, Shiff Natalie J, Spiegel Lynn, Tse Shirley M L, Tucker Lori, Victor Joseph Charles
The Hospital for Sick Children, Toronto, ON, Canada.
Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, ON, Canada.
J Med Internet Res. 2020 Jul 29;22(7):e16234. doi: 10.2196/16234.
Juvenile idiopathic arthritis (JIA) is a serious and potentially debilitating pediatric illness. Improved disease self-management may help to improve health outcomes.
This study aimed to evaluate the effectiveness of the Teens Taking Charge Web-based self-management intervention in reducing symptoms and improving health-related quality of life (HRQL) in adolescents with JIA compared with a Web-based education control condition.
Adolescents with JIA aged 12 to 18 years were recruited from 11 Canadian pediatric rheumatology centers. Caregivers were invited to participate along with their child. In addition to standard medical care, participants were randomized to receive either (1) the Teens Taking Charge self-management intervention or (2) a Web-based education control condition for a period of 12 weeks. Adolescents in the intervention group completed website modules addressing cognitive behavioral coping skills, stress management, and other self-management topics, while also receiving monthly telephone calls from a trained health coach. Adolescents in the education control group were instructed to view a series of preselected public JIA educational websites and received monthly calls from a coach who asked about their own best efforts at managing JIA. Caregivers in the intervention group completed website modules related to promoting independence and disease self-management in their child. Caregivers in the education control group were instructed to view a series of preselected public JIA educational websites. Outcome assessment occurred at baseline, 12 weeks (posttreatment), and at 6 and 12 months postrandomization. The primary outcomes were pain intensity, pain interference, and HRQL. Secondary outcomes were emotional symptoms, adherence, coping, knowledge, and self-efficacy.
In total, 333 adolescents and 306 caregivers were enrolled. Significant overall reductions in pain intensity (P=.02) and pain interference (P=.007) were observed for intervention group participants compared with those in the education control group, after adjusting for baseline levels. There was a significant overall improvement in HRQL related to problems with pain (P=.02) and problems with daily activities (P=.01). There was also a significant difference in the intervention group over time (P=.008) for HRQL related to treatment problems, with the intervention group participants demonstrating improved HRQL by 12 months compared with education control group participants. Both groups showed nonsignificant improvements compared with baseline in other primary outcomes. There were no significant differences between the groups in any secondary outcomes or caregiver-reported outcomes.
The results of this randomized trial suggest that the Teens Taking Charge Web-based intervention is effective at reducing both pain intensity and pain interference, as well as improving HRQL in adolescents with JIA, compared with education control. These effects are sustained for up to 12 months following program completion. The Teens Taking Charge program is now publicly available at no cost.
ClinicalTrials.gov NCT01572896; https://clinicaltrials.gov/ct2/show/NCT01572896.
青少年特发性关节炎(JIA)是一种严重且可能导致残疾的儿科疾病。改善疾病自我管理可能有助于改善健康状况。
本研究旨在评估“青少年自主管理”基于网络的自我管理干预措施与基于网络的教育对照条件相比,在减轻JIA青少年症状和改善健康相关生活质量(HRQL)方面的有效性。
从11个加拿大儿科风湿病中心招募12至18岁的JIA青少年。邀请其照顾者与孩子一起参与。除标准医疗护理外,参与者被随机分为两组,分别接受:(1)“青少年自主管理”自我管理干预措施;(2)基于网络的教育对照条件,为期12周。干预组的青少年完成了涉及认知行为应对技巧、压力管理和其他自我管理主题的网站模块,同时还每月接受来自训练有素的健康教练的电话随访。教育对照组的青少年被指示浏览一系列预先选定的公共JIA教育网站,并每月接受来自教练的电话随访,教练询问他们在管理JIA方面的最大努力。干预组的照顾者完成了与促进孩子独立性和疾病自我管理相关的网站模块。教育对照组的照顾者被指示浏览一系列预先选定的公共JIA教育网站。在基线、12周(治疗后)以及随机分组后的6个月和12个月进行结果评估。主要结果是疼痛强度、疼痛干扰和HRQL。次要结果是情绪症状、依从性、应对、知识和自我效能感。
总共招募了333名青少年和306名照顾者。在调整基线水平后,与教育对照组相比,干预组参与者的疼痛强度(P = 0.02)和疼痛干扰(P = 0.007)总体上有显著降低。与疼痛问题(P = 0.02)和日常活动问题(P = 0.01)相关的HRQL总体上有显著改善。干预组在与治疗问题相关的HRQL方面随时间也有显著差异(P = 0.008),与教育对照组参与者相比(干预组参与者在12个月时HRQL有所改善)。与基线相比,两组在其他主要结果方面均有非显著改善。两组在任何次要结果或照顾者报告的结果方面均无显著差异。
这项随机试验的结果表明,与教育对照相比,“青少年自主管理”基于网络的干预措施在减轻JIA青少年的疼痛强度和疼痛干扰以及改善HRQL方面是有效的。这些效果在项目完成后可持续长达12个月。“青少年自主管理”项目现已免费向公众开放。
ClinicalTrials.gov NCT01572896;https://clinicaltrials.gov/ct2/show/NCT01572896 。