Using E-Diaries to Assess Sleep and Pain in Children and Adolescents with Sickle

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DESCRIPTION (provided by applicant): Individuals with sickle cell disease (SCD) have a high prevalence of sleep disordered breathing, which has been linked to increased pain, stroke, and impaired cognitive functioning. However, few studies have investigated other sleep features in individuals with SCD and their relationship to disease presentation, management, and psychosocial adjustment. This project will provide support for Dr. Cecelia Valrie to pursue her long-term goal of establishing herself as an independent investigator with a research program in sleep in children and adolescents with SCD. The short term goals of the project are to enhance her existing knowledge of the physiological basis of sleep, to develop her skills to accurately assess sleep using physiological assessments, such as polysomnography and actigraphy, and paper measures, to expand her abilities to investigate, disseminate, and translate her work into effective interventions, to pilot the use of electronic (e-) diaries for assessing disease symptoms, sleep, and adjustment in children with SCD, and to assist her in acquiring a better understanding of the relationship between sleep and pain and their influence on health care use, and behavioral and emotional adjustment to illness. The goals will be accomplished via mentorship by experts in the areas of sleep and adjustment in children and adolescents with pediatric pain conditions, participation in didactic and hands-on training activities, and by conducting a research project focused on sleep and pain in children and adolescents with SCD. The specific aims of the proposed project are (1) to examine whether poor sleep is temporally associated with increased frequency, duration, and severity of vaso-occlusive pain events in children and adolescents with SCD, (2) to investigate the independent and combined influences of physiological and psychological factors on pain and sleep in children and adolescents with SCD, and (3) to assess the combined influence of sleep and pain on health care use and psychosocial functioning in children and adolescents with SCD. We will pilot an e-diary designed to assess the children's and adolescents' sleep, pain, stress, and mood, and then using the e-diary, we will conduct a cohort study with a concurrent and prospective component evaluating 75 children, aged 8 to 12 years, and 75 adolescents, aged 13 to 17 years, with SCD. First, we will conduct an initial interview with the children, adolescents, and their guardians assessing the children's and adolescents' sleep patterns, SCD pain, health care use, psychosocial functioning, and demographic information combined with a medical chart review to acquire additional disease information. Second, the children and adolescents will complete the e-diary for up to 8 weeks while concurrently wearing a sleep actigraph during the first two weeks of the diary period.