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: 9894304
• 负责人: ANDREA Bridget KELLY
• 金额: $ 24.78万
• 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 2021-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9894304
• 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; Comorbidity; 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; 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; 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.

项目概要/摘要 阻塞性睡眠呼吸暂停综合征 (OSAS) 在患有唐氏综合症 (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。 腺样体扁桃体切除术后明显残留的 OSAS 很常见，这进一步凸显了需要更好地 描述 OSAS 对 DS 常见发病和生活质量下降的影响。一个专业 OSAS 相关临床护理和研究面临的挑战是诊断所需的测试。年轻时， OSAS 测试需要在睡眠实验室过夜。访问具有儿科专业知识的中心 OSAS 和对智障儿童的照顾是有限的。此外，测试费用昂贵，而且 儿童可能会因行为和感官问题而拒绝测试。筛查频率仍有待提高 定义，由于标准访谈和问卷调查相对无法辨别，问题变得复杂 OSAS 风险。我们的长期目标是研究 OSAS 及其治疗与生活质量的关系， 行为、认知功能和心脏健康。为此，本研究提出 1) 测试唐氏青少年家庭睡眠呼吸暂停测试的可接受性和可行性 综合症。 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 患有唐氏综合症的青少年。 3) 确定家庭呼吸暂停睡眠测试对唐氏青少年 OSAS 的诊断效果 综合症。 为了实现这些目标，患有 DS 的 10-20 岁青少年将接受家庭睡眠呼吸暂停测试，并 在实验室进行标准夜间睡眠测试。护理人员将学习如何设置系统和学习 工作人员将能够解决问题。护理人员和参与者将完成以下相关的调查问卷 如果他们遇到任何设置或睡眠问题，在家进行睡眠测试有多容易 各种组件过夜保持原位，并影响生活质量。家庭睡眠呼吸暂停测试结果将是 与标准实验室睡眠测试的结果进行比较。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，如果一部分青少年在家庭睡眠呼吸暂停测试中表现更好或更差， 以及它作为诊断测试的表现如何。如果使用此测试是可行的、可接受的、耐受性良好且 作为诊断测试表现良好，将进行一项临床试验来测试 OSAS 治疗对 患有唐氏综合症的青少年的生活质量、行为、认知功能和心脏健康。