Teens Taking Charge: A Randomized Controlled Trial of a Web-Based Self-Management Program With Telephone Support for Adolescents With Juvenile Idiopathic Arthritis.

BACKGROUND: Juvenile idiopathic arthritis (JIA) is a serious and potentially debilitating pediatric illness. Improved disease self-management may help to improve health outcomes. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. TRIAL REGISTRATION: ClinicalTrials.gov NCT01572896; https://clinicaltrials.gov/ct2/show/NCT01572896.

A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness.

BACKGROUND: The transition from pediatric to adult health care can be challenging for adolescents with chronic illnesses. As a result, many adolescents are unable to transfer to adult health care successfully. Adequate measurement of transition readiness and transfer satisfaction with disease management is necessary in order to determine areas to target for intervention towards improving transfer outcomes. OBJECTIVES: This study aims to systematically review and critically appraise research on transition readiness and transfer satisfaction measures for adolescents with chronic illnesses as well as to assess the psychometric quality of these measures. METHODS: Electronic searches were conducted in MEDLINE, EMBASE, CINAHL, PsychINFO, ERIC, and ISI Web of Knowledge for transition readiness and transfer satisfaction measures for adolescents with chronic health conditions. Two reviewers independently selected articles for review and assessed methodological quality. RESULTS: In all, eight readiness and six satisfaction measures met the inclusion criteria, for a total of 14 studies, which were included in the final analysis. None of these measures have well-established evidence of reliability and validity. Most of the measures were developed ad hoc by the study investigators, with minimal to no evidence of reliability and/or validity using the Cohen criteria and COSMIN checklist. CONCLUSION: This research indicates a major gap in our knowledge of transitional care in this population, because there is currently no well-validated questionnaire that measures readiness for transfer to adult health care. Future research must focus on the development of well-validated transition readiness questionnaires, the validation of existing measures, and reaching consensus on outcomes of successful transfer.

Transition of the adolescent patient with rheumatic disease: issues to consider.

The goals of pediatric rheumatologists are to ensure the best possible medical, functional, and social outcomes for their patients. Transition from pediatric to adult rheumatology care is a critical component of comprehensive care for adolescents and young adults with rheumatic disease. In the past few years, there has been increasing interest in the transition phase of pediatric rheumatology care and acknowledgment that best-quality services are not available to all patients. Improving transition care for youth with childhood-onset rheumatic diseases requires collaboration between pediatric and adult rheumatologists and between rheumatologists and primary care providers. Providers of transition care must recognize that young adults with rheumatic diseases present complex medical and psychologic needs.

'It might hurt, but you have to push through the pain': Perspectives on physical activity from children with juvenile idiopathic arthritis and their parents.

Our primary objective was to gather perspectives of children diagnosed with juvenile idiopathic arthritis (JIA) and their parents as they relate to physical activity (PA) participation. To do so, we conducted a study on 23 children diagnosed with JIA and their parents ( N = 29). We used convenience sampling to recruit participants and qualitative method- logies (one-on-one semi-structured interviews). We adopted a five-step framework analysis to categorize data into themes. Children and their parents described factors that act to facilitate or hinder PA participation. Pain was the most commonly highlighted PA barrier described by children and their parents. However, children who were newly diagnosed with JIA and their parents were more likely to highlight pain as a barrier than were child/parent dyads where children had been previously diagnosed.

Surfing for juvenile idiopathic arthritis: perspectives on quality and content of information on the Internet.

OBJECTIVE: To determine the quality and content of English language Internet information about juvenile idiopathic arthritis (JIA) from the perspectives of consumers and healthcare professionals. METHODS: Key words relevant to JIA were searched across 10 search engines. Quality of information was appraised independently by 2 health professionals, 1 young adult with JIA, and a parent using the DISCERN tool. Concordance of the website content (i.e., accuracy and completeness) with available evidence about the management of JIA was determined. Readability was determined using Flesch-Kincaid grade level and Reading Ease Score. RESULTS: Out of the 3000 Web pages accessed, only 58 unique sites met the inclusion criteria. Of these sites only 16 had DISCERN scores above 50% (indicating fair quality). These sites were then rated by consumers. Most sites targeted parents and none were specifically developed for youth with JIA. The overall quality of website information was fair, with a mean DISCERN quality rating score of 48.92 out of 75 (+/- 6.56, range 34.0-59.5). Overall completeness of sites was 9.07 out of 16 (+/- 2.28, range 5.25-13.25) and accuracy was 3.09 out of 4 (+/- 0.86, range 2-4), indicating a moderate level of accuracy. Average Flesch-Kincaid grade level and Reading Ease Score were 11.48 (+/- 0.74, range 10.1-12.0) and 36.36 (+/- 10.86, range 6.30-48.1), respectively, indicating that the material was difficult to read. CONCLUSION: Our study highlights the paucity of high quality Internet health information at an appropriate reading level for youth with JIA and their parents.