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

描述（由申请人提供）：镰状细胞病（SCD）患者有高患病率的睡眠呼吸障碍，这与疼痛增加、中风和认知功能受损有关。然而，很少有研究调查SCD患者的其他睡眠特征及其与疾病表现、管理和社会心理适应的关系。该项目将为Cecelia Valrie博士提供支持，以实现她的长期目标，即成为一名独立调查员，参与研究患有SCD的儿童和青少年的睡眠。该项目的短期目标是增强她对睡眠生理基础的现有知识，发展她使用生理评估（如多导睡眠图和活动描记仪）和纸张测量准确评估睡眠的技能，扩大她调查、传播和将其工作转化为有效干预措施的能力，试点使用电子日记来评估SCD儿童的疾病症状、睡眠和调整。并帮助她更好地理解睡眠和疼痛之间的关系及其对医疗保健使用的影响，以及对疾病的行为和情绪调整。这些目标将通过以下方式实现：由患有儿童疼痛的儿童和青少年的睡眠和调整领域的专家指导，参与教学和实践培训活动，以及开展一个以患有SCD的儿童和青少年的睡眠和疼痛为重点的研究项目。该项目的具体目的是：(1)研究睡眠不良是否与儿童和青少年SCD患者血管闭塞性疼痛事件的频率、持续时间和严重程度增加存在暂时性关联；(2)研究生理和心理因素对儿童和青少年SCD患者疼痛和睡眠的独立和联合影响。(3)评估睡眠和疼痛对患有SCD的儿童和青少年的医疗保健使用和心理社会功能的综合影响。我们将试点一种电子日记，旨在评估儿童和青少年的睡眠、疼痛、压力和情绪，然后使用电子日记，我们将进行一项队列研究，其中包括并发和前瞻性成分，评估75名8至12岁的儿童和75名13至17岁的青少年患有SCD。首先，我们将对儿童、青少年及其监护人进行初步访谈，评估儿童和青少年的睡眠模式、SCD疼痛、医疗保健使用、心理社会功能和人口统计信息，并结合医疗图表审查来获取额外的疾病信息。其次，儿童和青少年将完成长达8周的电子日记，同时在日记的前两周佩戴睡眠活动仪。

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. PUBLIC HEALTH RELEVANCE: The proposed project will impact the field by increasing the number of skilled researchers focused on sleep in pediatric populations, providing information on the relationship between sleep and pain and aiding in the development of interventions focused on treatment and disease management in children with SCD. (End of abstract)