Center for Innovation in Sleep Self-Management

PI: Teresa M. Ward; Co-Investigators: Tonya Palermo, Sarah Ringold; Consultant: George Demiris

NIH/NINR – R21 NR017471

Sleep deficiency is highly comorbid in children with juvenile idiopathic arthritis (JIA), affecting an estimated 20 to 30% of children. Sleep deficiency, which includes inadequate quantity or quality of sleep, is a serious problem for these youth because it is associated with increased arthritis symptoms, poorer health-related quality of life, and increased healthcare utilization. Despite the pervasiveness of sleep deficiency in JIA, children receive no training in self- management strategies (activation, motivation, self-efficacy) to improve sleep quantity and quality before transitioning into adolescence. Lack of sleep self-management interventions in JIA represents a critical gap in the treatment of JIA. Studies in other chronic health conditions show that sleep deficiency is associated with lack of self-monitoring and goal setting Рimportant components of self- management. Clinical resources to address sleep deficiency in JIA are not available, creating a significant unmet clinical need. In considering the multiple needs of these children and parents, successful interventions will need to target self-management skills and be delivered to families in an accessible format. Based on the experiences of our team in developing and testing technology-based pain self-management interventions for children with chronic conditions and their families, and conducting usability assessments for such tools, it is likely that self- management techniques will also be effective for  helping children with JIA to sleep better. Accordingly, we hypothesize that this approach will also be effective for delivering a sleep self-management intervention for children with JIA and their parents.

We aim to develop and test a technology-based sleep self-management intervention delivered to 9-to-11 year-old children with JIA and their parents. The initial feasibility, acceptability, and efficacy of the newly developed sleep self-management intervention will be tested in a pilot randomized controlled trial comparing the active intervention against standard care with a sample of 60 children with JIA and their parents. Sleep will be measured using actigraphy, sleep diaries, & self-report measures. Problem- solving skills, motivation, beliefs about sleep, and sleep self-efficacy will be measured before and after the intervention. Our long-term goal is to develop effective and low cost treatments to reduce sleep deficiency and the sleep-related health consequences among children with JIA. Findings regarding intervention feasibility and acceptability will guide future intervention optimization, and estimation of intervention efficacy will provide essential information for power calculations for the design of a future definitive trial of the intervention. This study will provide findings regarding the benefits of a cost-effective intervention that could be implemented on a large scale to improve sleep health in children with chronic conditions and their parents.