Electronic Diaries to Assess Sleep and Pain in Youth with Sickle Cell Disease

电子日记可评估患有镰状细胞病的青少年的睡眠和疼痛

• 批准号: 8284355
• 负责人: Cecelia R Valrie
• 金额: $ 12.15万
• 依托单位: EAST CAROLINA UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2010
• 资助国家: 美国
• 起止时间: 2010-07-01 至 2015-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8284355
• 关键词: Adolescent; Area; Arthritis; Behavioral; Child; Childhood; Chronic Disease; Cohort Studies; Development; Disease; Disease Management; Electronics; Evaluation; Event; Frequencies; Genotype; Goals; Handheld Computers; Healthcare; Hemoglobin concentration result; High Prevalence; Hypoxia; Individual; Interview; Investigation; Knowledge; Link; Measures; Medical; Mentorship; Methods; Modeling; Moods; Multivariate Analysis; Pain; Pain Measurement; Paper; Participant; Pattern; Physiological; Polysomnography; Population; Psychological Factors; Questionnaires; Reporting; Research; Research Personnel; Research Project Grants; Risk; Severities; Sickle Cell; Sickle Cell Anemia; Sleep; Sleep Apnea Syndromes; Sleep Fragmentations; Stress; Stroke; Symptoms; Techniques; Testing; Time; Training Activity; Translating; Work; Youth; abstracting; actigraphy; age group; aged; base; cognitive function; design; diaries; effective intervention; emotional adjustment; innovation; intervention program; programs; prospective; psychosocial; psychosocial adjustment; public health relevance; skills; therapy development; time use; vaso-occlusive pain

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)

描述(由申请人提供)：患有镰状细胞病(SCD)的人睡眠呼吸障碍的发生率很高，这与疼痛、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博士实现她的长期目标提供支持，即通过SCD儿童和青少年睡眠研究计划确立自己作为独立调查员的地位。该项目的短期目标是加强她对睡眠生理基础的现有知识，培养她使用生理评估(如多导睡眠图和动作图)和纸质测量准确评估睡眠的技能，扩大她调查、传播工作并将其转化为有效干预的能力，试点使用电子日记来评估患有SCD的儿童的疾病症状、睡眠和适应，并帮助她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。这些目标将通过以下方式实现：儿童疼痛儿童和青少年睡眠和适应领域的专家指导，参与教学和动手培训活动，以及开展一项侧重于SCD儿童和青少年睡眠和疼痛的研究项目。拟议项目的具体目标是(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的增加有时间上的相关性；(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儿童和青少年的医疗保健利用和心理社会功能的联合影响。我们将试行一个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，然后使用该电子日记，我们将进行一项队列研究，包括同期和前瞻性部分，评估75名8至12岁的儿童和75名13至17岁的青少年。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，并结合病历审查，以获取更多疾病信息。其次，儿童和青少年将在8周内完成电子日记，同时在日记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，提供关于睡眠和疼痛之间关系的信息，并帮助制定侧重于SCD儿童的治疗和疾病管理的干预措施。(摘要结束)