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

项目总结/摘要 阻塞性睡眠呼吸暂停综合征（OSAS）在患有唐氏综合征（DS）的儿童和成人中很常见，但 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，严重的OSAS残留是常见的，这进一步强调了改善OSAS的必要性。 描述阻塞性睡眠呼吸暂停综合征对DS常见发病率和生活质量的影响。一个主要 与OSAS相关的临床护理和研究的挑战是诊断所需的测试。年轻时， 测试OSAS需要在睡眠实验室过夜。拥有儿科专业知识的医疗中心 阻塞性睡眠呼吸暂停综合症和对智力残疾儿童的照顾有限。此外，测试是昂贵的， 儿童可能会因为行为和感觉问题而拒绝测试。筛查的频率还有待于 定义，一个问题复杂的标准访谈和问卷调查，以辨别相对无能 OSAS风险。我们的长期目标是研究阻塞性睡眠呼吸暂停综合征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，本研究建议 1)测试家庭睡眠呼吸暂停测试在唐氏症青少年中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的可接受性和可行性的患者因素 在患有唐氏综合症的青少年中 3)以确定家庭呼吸暂停睡眠测试在诊断患有Down的青少年OSAS中的效果 综合征 为了实现这些目标，年龄在10-20岁之间的DS青少年将接受家庭睡眠呼吸暂停测试， 在实验室进行标准的夜间睡眠测试。护理人员将被教导如何建立系统和学习 工作人员将随时处理问题。护理人员和参与者将填写与以下内容相关的问卷： 在家中进行睡眠测试的容易程度，如果他们遇到任何设置或 各种部件在夜间保持原位，以及生活质量。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相比。这些初步研究将有助于确定， 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表现得更好或更差， 以及它作为诊断测试的表现。如果使用本试验可行、可接受、耐受性良好， 作为一种诊断测试，将进行临床试验，测试OSAS治疗对 唐氏综合征青少年的生活质量、行为、认知功能和心脏健康。

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.