Acceptability and Performance on In-Home Polysomnography in Youth with Down Syndrome

唐氏综合症青少年家庭多导睡眠监测的可接受性和表现

• 批准号: 10022153
• 负责人: ANDREA Bridget KELLY
• 金额: $ 21.5万
• 依托单位: CHILDREN'S HOSP OF PHILADELPHIA
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-20 至 2023-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10022153
• 关键词: Academy; Address; Adolescent; Adult; Affect; Age; American; Apnea; Arousal; Behavior; Behavioral; Cardiac health; Cardiovascular Diseases; Caregivers; Child; Child Care; Childhood; Clinical; Clinical Research; Clinical Trials; Cognitive; Communities; Complex; Development; Diabetes Mellitus; Diagnosis; Diagnostic; Diagnostic tests; Down Syndrome; Drowsiness; Dyslipidemias; Electroencephalography; Environment; Family; Frequencies; Glucose Intolerance; Gold; Growth; Guidelines; Healthcare; High Prevalence; Home environment; Hypercapnia; Hypoxia; Impaired cognition; Individual; Industry; Inflammation; Intellectual functioning disability; Intervention; Interview; Investigation; Judgment; Knowledge; Laboratories; Left; Life; Life Expectancy; Longevity; Measures; Medical; Medicine; Moods; Morbidity - disease rate; Muscle hypotonia; Neurocognitive; Neurocognitive Deficit; Obesity; Obstructive Sleep Apnea; Output; Overweight; Parents; Participant; Patient Preferences; Patients; Pediatrics; Perception; Performance; Polysomnography; Predisposition; Prevalence; Psychiatric Diagnosis; Quality of life; Questionnaires; Readiness; Recurrence; Reporting; Research; Residual state; Risk; Schools; Sensory; Severities; Sleep; Sleep Apnea Syndromes; System; Technology; Test Result; Testing; Ventricular; Vulnerable Populations; Work; Youth; airway obstruction; cardiometabolic risk; cardiovascular disorder risk; clinical care; clinical practice; cognitive function; cohort; comorbidity; cost effective; diagnostic accuracy; evidence base; experience; heart disease risk; high risk; improved; indexing; learned behavior; multidisciplinary; pressure; recruit; response; screening; sleep pattern; tool; user-friendly

PROJECT SUMMARY/ABSTRACT Obstructive sleep apnea syndrome (OSAS) is common in children and adults with Down Syndrome (DS), but its impact upon quality of life, behavior, cognitive function, diabetes, and heart health are not known. Significant residual OSAS is common after adenotonsillectomy and further highlights the need to better delineate the contribution of OSAS to common morbidities and compromised quality of life in DS. A major challenge to both clinical care and research related to OSAS is the testing required for diagnosis. In youth, testing for OSAS requires an overnight stay in a sleep laboratory. Accessing centers with expertise in pediatric OSAS and the care of children with intellectual disabilities is limited. Additionally, the testing is expensive, and children may reject the testing due to behavior and sensory issues. The frequency of screening has yet to be defined, an issue complicated by the relative inability of standard interviews and questionnaires to discern OSAS risk. Our long-term objective is to study the relationship of OSAS and its treatment upon quality of life, behavior, cognitive function, and heart health. To this end, this study proposes 1) to test the acceptability and feasibility of home sleep apnea testing in adolescents with Down Syndrome. 2) to test for patient factors that contribute to the acceptability and feasibility of home sleep apnea testing in adolescents with Down Syndrome. 3) to determine how well home apnea sleep testing diagnoses OSAS in adolescents with Down Syndrome. To accomplish these aims, youth age 10-20 years with DS will undergo home sleep apnea testing and standard overnight sleep testing in a laboratory. Caregivers will be taught how to set-up the system and study staff will be available to address problems. Caregivers and participants will complete questionnaires related to how easily the sleep testing was performed at home, if they encountered any issues with set-up or with the various components staying in place overnight, and quality of life. The home sleep apnea test results will be compared with results from the standard in-lab sleep test. These preliminary studies will help determine if home sleep apnea testing is feasible, if a subset of youth do better or worse with home sleep apnea testing, and how well it performs as a diagnostic test. If using this test is feasible, acceptable, well-tolerated, and performs well as a diagnostic test, a clinical trial will be pursued that tests the impact of OSAS treatment upon quality of life, behavior, cognitive function, and heart health in adolescents with Down Syndrome.

项目摘要/摘要 阻塞性睡眠呼吸暂停综合征（OSA）在唐氏综合症（DS）的儿童和成人中很常见，但是 它对生活质量，行为，认知功能，糖尿病和心脏健康的影响尚不清楚。 大量残留的OSA在腺孔切除术后很常见，并进一步强调了更好的需求 描述了OSA对DS中常见病态和生活质量妥协的贡献。专业 对与OSA有关的临床护理和研究的挑战是诊断所需的测试。在青年中 OSA的测试需要在睡眠实验室过夜。进入具有小儿专业知识的中心 OSA和智障儿童的照顾是有限的。此外，测试很昂贵，并且 儿童可能由于行为和感觉问题而拒绝测试。筛查的频率尚未 定义，这一问题是由于标准访谈和问卷的相对无能为力而复杂的问题 OSA风险。我们的长期目标是研究OSA及其治疗对生活质量的关系， 行为，认知功能和心脏健康。为此，这项研究提出了 1）测试有降低青少年的家庭睡眠呼吸暂停测试的可接受性和可行性 综合征。 2）测试有助于家庭睡眠呼吸暂停测试可接受性和可行性的患者因素 在唐氏综合症的青少年中。 3）确定家庭呼吸暂停睡眠测试的诊断如何在降低的青少年中 综合征。 为了实现这些目标，DS的年轻人10-20岁将接受家庭睡眠呼吸暂停测试和 在实验室中进行标准的过夜睡眠测试。护理人员将被教导如何设置系统并学习 员工将可以解决问题。护理人员和参与者将填写与 如果他们遇到设置的任何问题或与 各种组成部分在一夜之间保留，生活质量。家庭睡眠呼吸暂停测试结果将是 与标准LAB睡眠测试的结果相比。这些初步研究将有助于确定是否 家庭睡眠呼吸暂停测试是可行的，如果一部分年轻人在家庭睡眠呼吸暂停测试中做得更好或更糟， 以及它作为诊断测试的表现。如果使用此测试是可行的，可接受的，耐受良好的，并且 在诊断测试中表现良好，将进行临床试验，以测试OSA治疗对 唐氏综合症青少年的生活质量，行为，认知功能和心脏健康。