There is a critical gap in the contemporary treatment of Juvenile Idiopathic Arthritis (JIA) wherein a majority of adolescent patients still experience ongoing pain and reduced health-related quality of life even with advances in medical management of the disease. Despite the pervasiveness of problems with pain and quality of life impairments in adolescents with JIA, most patients receive no training in the strategies that can help empower them to reduce pain and disability before transitioning into adulthood. The Internet offers a unique opportunity to reach adolescents with JIA and provide the training in pain self-management strategies that otherwise may not occur due to treatment access and resource obstacles. The objective in this application is to conduct a definitive empirical test of an investigator-developed online coping skills training program for English- and Spanish- speaking adolescents with JIA. Based on data from the investigators'preliminary work, the central hypothesis is that use of an online coping skills training program will produce superior improvements in pain and health-related quality of life outcomes for adolescents with JIA relative to outcomes attained with additional attention to coping efforts and review of extant online educational information about JIA (control condition).
Specific aims for the proposed work include (a) determining the extent to which an online coping skills training program for English- and Spanish-speaking adolescents with JIA produces improvements in key health outcomes that currently do not optimally respond to only contemporary medical management (pain and health-related quality of life);and (b) determining predictors of change in pain and health-related quality of life indices in English- and Spanish- speaking adolescents with JIA and establishing the extent to which online coping skills training influences health outcomes via these predictors.
The aims will be achieved through the approach of using a multi-center randomized controlled trial in which a sample of 360 consenting English- and Spanish-speaking adolescents aged 12-18 years with JIA will be enrolled and randomized into one of two groups: (a) an experimental group consisting of a 12-week interactive online multi-component treatment protocol including targeted disease education, training in empirically supported cognitive-behavioral coping skills, and social support augmented by monthly telephone contact with a nurse;or (b) a control group consisting of 12 weeks of guided access to extant online resources for disease education and additional attention to own best efforts at managing JIA via monthly telephone contact with a nurse. Outcome data will be collected from both groups prior to treatment, immediately following the intervention, and at 6- and 12-month follow-up assessments. Successful completion of this project is expected to establish to what extent and how an innovative online self-management program produces change in clinically relevant health outcomes in both English- and Spanish-speaking adolescents with JIA. The proposed study therefore can be expected to have a significant positive impact in the healthcare of teens with JIA and in identifying treatment targets for other youth self-management interventions.
The proposed research is relevant to public health because without research to determine efficacious and accessible programs for managing pain in youth with arthritis, significant unnecessary long-term disability and costs to the healthcare system and family will continue to ensue. The project is therefore relevant to parts of NIH's mission that pertain to developing fundamental knowledge and innovative strategies that can help protect and improve citizens'health and enhance the Nation's economic well-being.
|Wu, Yelena P; Steele, Ric G; Connelly, Mark A et al. (2014) Commentary: pediatric eHealth interventions: common challenges during development, implementation, and dissemination. J Pediatr Psychol 39:612-23|