Multisite Randomized Clinical Trial Evaluating an Online Self-Management Program for Adolescents With Juvenile Idiopathic Arthritis

Connelly, Mark; Schanberg, Laura E.; Ardoin, Stacy P.; Blakley, Michael; Carrasco, Ruy; Chira, Peter; Hayward, Kristen; Ibarra, Maria; Kimura, Yukiko; Kingsbury, Daniel J.; Klein‐Gitelman, Marisa S.; Lawson, Erica; Stinson, Jennifer

doi:10.1093/jpepsy/jsy066

Cited by 30 publications

(77 citation statements)

References 34 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Results of this RCT should also be compared with published results by Connelly et al [ 44 ], who evaluated an adapted version of Teens Taking Charge in English and Spanish-speaking adolescents with JIA in the United States. Data from the Connelly trial indicated that participants in both study groups had comparable and statistically significant improvements in pain intensity, pain interference, and HRQL over the study period, with no significant between-group differences.…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2020

View full text Add to dashboard Cite

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

show abstract

Section: Discussionmentioning

confidence: 99%

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

et al. 2020

View full text Add to dashboard Cite

show abstract

“…Most studies have been concerned with remotely delivered selfmanagement interventions for chronic pain, undertaken at one's convenience and without having to leave the home. 12,14,15,42,45 These interventions aim to provide the same information and training in self-management skills as provided in face-to-face pain management programs but use technology in different ways. Interventions have been examined in controlled trials.…”

Section: Distance Assessment and Treatment With Technologymentioning

confidence: 99%

Managing patients with chronic pain during the COVID-19 outbreak: considerations for the rapid introduction of remotely supported (eHealth) pain management services

Eccleston

Blyth

Dear

et al. 2020

Pain

408

426

View full text Add to dashboard Cite

show abstract

“…Technological interventions were described as novel and attractive options for remotely accessing adjunctive emotional health care. Emerging evidence in JIA and juvenile-onset SLE suggests that online emotional health interventions may be effective, acceptable, and feasible modalities for expanding access to care (47,48). Social support networks for children and young adults with JM both online (e.g., social media) and at conferences were sometimes described as more effective than traditional psychological therapy; while peer support interventions have not been formally tested in JM, studies in JIA and other pediatric populations suggest potential emotional health benefits (49,50).…”

Section: Discussionmentioning

confidence: 99%

“…Parents also cited feelings out, and then someone in staff at the doctor's office just reads it, and then we'll have the conversation the next meeting…I think that even to have that with the doctor's office so someone can read it might be a tool. 47 13-17…”

Section: -17mentioning

confidence: 99%

Parent Perspectives on Addressing Emotional Health for Children and Young Adults With Juvenile Myositis

Ardalan

Adeyemi

Wahezi

et al. 2020

Arthritis Care & Research

View full text Add to dashboard Cite

Objective. To assess parent perspectives regarding the emotional health impact of juvenile myositis (JM) on patients and families, and to assess preferences for emotional health screening and interventions. Methods. Parents of children and young adults with JM were purposively sampled for participation in focus groups at the Cure JM Foundation National Family Conference in 2018. Groups were stratified by patient age group (6-12, 13-17, and 18-21 years), and conversations were audiorecorded, transcribed verbatim, and co-coded via content analysis, with subanalysis by age group. A brief survey assessed preferences for specific emotional health interventions. Results. Forty-five parents participated in 6 focus groups. Themes emerged within 2 domains: emotional challenges, and screening and interventions. Themes for emotional challenges comprised the impact of JM on: 1) patient emotional health, particularly depression and anxiety; 2) parent emotional health characterized by sadness, grief, anger, guilt, and anxiety; and 3) family dynamics, including significant sibling distress. Subanalysis revealed similar themes across age groups, but the theme of resiliency emerged specifically for young adults. Themes for emotional health screening and interventions indicated potential issues with patient transparency, several barriers to resources, the facilitator role of rheumatology providers, and preferred intervention modalities of online and in-person resources, with survey responses most strongly supporting child/parent counseling and peer support groups. Conclusion. JM is associated with intense patient and family distress, although resiliency may emerge by young adulthood. Despite existing barriers, increasing access to counseling, peer support groups, and online resources with rheumatology facilitation may be effective intervention strategies.

show abstract

Multisite Randomized Clinical Trial Evaluating an Online Self-Management Program for Adolescents With Juvenile Idiopathic Arthritis

Abstract: Primarily self-directed online self-management training and online disease education comparably and modestly improve pain and HRQOL in youth with JIA.

Cited by 30 publications

References 34 publications

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

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

Managing patients with chronic pain during the COVID-19 outbreak: considerations for the rapid introduction of remotely supported (eHealth) pain management services

Parent Perspectives on Addressing Emotional Health for Children and Young Adults With Juvenile Myositis

Contact Info

Product

Resources

About