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One or more keywords matched the following properties of Registry-Assisted Dissemination of Mobile Pain Management for Youth with Arthritis

abstract ? DESCRIPTION (provided by applicant): There is a critical gap in the current treatment of Juvenile Idiopathic Arthritis (JIA) wherein there is limited integration of evidence-based treatment for pain despite research demonstrating that the outcomes that tend to matter most to children - their level of comfort and related ability to participate normally at school, sports or hobbies, and with friends and family - are incompletely addressed with current medications. Pain therefore continues to be an unnecessary burden for a large proportion of youth with JIA. The objective in this application is to establish a sustainable approach to large-scale dissemination of evidence-based pain management for youth with JIA in need of enhanced clinical care. The specific aim is to determine the feasibility and health impact of a registry-facilitated dissemination of a mobile health (mHealth) patient support system that incorporates established evidence-based pain management strategies. The aim will be achieved through the approach of distributing pain self-management strategies via an innovative mHealth tool to those patients with JIA registered in the largest pediatric rheumatology registry in the world (the Childhood Arthritis and Rheumatology Research Alliance - CARRA - registry) and involved in the new pediatric rheumatology Patient- Powered Research Network. Youth ages 12-18 who are enrolled in the CARRA JIA registry and who indicate at least moderate pain and/or pain-related disability on patient report measures in the registry will receive information on the mHealth pain management support system and instructions for use on their mobile devices. Real-time information about pain characteristics entered by the patient into the mHealth tool will be used to determine which evidence-based pain management strategies to deliver to patients and at which moments (just in time learning). Perceived utility of the pain management strategies will be assessed by the mHealth application shortly after each use in order to prioritize future pain management recommendations provided to the patient through the app. Data on pain and its impact on activities from the mHealth app also will be linked to the patient's existing registry information in order to track long-term health outcomes, examine moderators of pain outcomes, and inform patient-provider shared decision-making. Youth will be asked to continue using the tool over at least a one month period. Feasibility of the proposed method for disseminating evidence-based pain management to youth with JIA will be assessed using RE-AIM criteria (reach, efficacy/effectiveness, adoption, implementation, maintenance). Successful completion of this study will establish the feasibility of integrating innovations in mobile health with patient registries in order to disseminate evidence-based pain management to youth with a chronic health condition. The proposed work therefore can be expected to have a significant positive impact in the lives of youth with JIA and potentially to those with other health condition in the future through large-scale integration of evidence-based care.

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