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）患者的睡眠呼吸障碍患病率很高，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、管理和心理社会适应的关系。该项目将为Cecelia Valrie博士提供支持，以实现她的长期目标，即成为一名独立的研究人员，参与SCD儿童和青少年睡眠研究计划。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准确评估睡眠的技能，如多导睡眠描记术和活动描记术，以及纸质测量，扩大她调查，传播和将其工作转化为有效干预措施的能力，试验使用电子（e-）日记评估疾病症状，睡眠，和调整SCD儿童，并帮助她获得更好地了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。这些目标将通过儿童和青少年睡眠和调整领域的专家指导，参与教学和实践培训活动，以及通过开展一项专注于SCD儿童和青少年睡眠和疼痛的研究项目来实现。该项目的具体目的是（1）检查睡眠不良是否与SCD儿童和青少年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时间相关性，（2）调查生理和心理因素对SCD儿童和青少年疼痛和睡眠的独立和联合影响，以及（3）评估睡眠和疼痛对SCD儿童和青少年的卫生保健使用和心理社会功能的综合影响。我们将试用一种旨在评估儿童和青少年的睡眠、疼痛、压力和情绪的电子日记，然后使用电子日记，我们将进行一项队列研究，其中包括一项同时和前瞻性的组成部分，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学信息，并结合病历审查，以获得更多的疾病信息。其次，儿童和青少年将完成长达8周的电子日记，同时在日记期的前两周佩戴睡眠活动记录仪。 公共卫生相关性：拟议的项目将通过增加专注于儿科人群睡眠的熟练研究人员的数量来影响该领域，提供有关睡眠与疼痛之间关系的信息，并帮助制定专注于SCD儿童治疗和疾病管理的干预措施。(End摘要）

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)