Impact of COVID-19 on the Mental Health of People with Down Syndrome

项目摘要 新冠肺炎是一场史无前例的全球性流行病。来自以前的大规模社区创伤的研究 (例如，自然灾害)和流行病记录了在这种危机期间精神健康问题的上升， 对一些人来说，这是一种持久的影响。对于有唐氏综合症(DS)儿童的家庭，COVID的影响- 19岁可能特别突出，因为潜在的健康状况与较差的病程有关，担心 医疗配给、例行公事的丧失、结构、发展服务的丧失以及社会孤立。同舟共济 这些因素在患有抑郁症、焦虑症和行为状况的人中造成了一场“完美风暴” DS可能会对DS患者的心理和身体健康产生长期影响。专家们已经 呼吁进行监测研究，以监测新冠肺炎的影响，为分级护理提供信息，以便那些在 心理后遗症风险最高者可获得所需资源。 家长奖(K08HD092610)原来的范围是集中在评估和评估 暴露于应激性生活事件、抑郁和其他心理健康指标之间的关系 12-45岁的DS患者，以及这一人群中抑郁症的生物标志物的识别。这 补充项目将提供机会来检查与新冠肺炎相关的压力源的影响(例如， 失业、社会隔离、感染)对照顾者和DS患者的健康和福祉的影响，包括 测量抑郁、焦虑、适应行为和认知衰退。该项目的具体目标是 1)进行一项精神健康监测研究，以确定新冠肺炎大流行对 DS患者的照顾者压力和心理健康结果，并评估他们随时间的轨迹(即，2， 4)和6个月的随访)；2)进行深入的精神表型分析(例如，抑郁、焦虑、认知 来自监测研究的DS患者的口腔细胞采样 报告最高(n=25)和最低(n=25)的COVID相关压力；以及3)检查获得性 遗传/染色体不稳定，通过DNA甲基化、端粒长度和微核来衡量 频率，作为新冠肺炎相关压力与心理健康结果之间的中介变量。 这一职业发展奖的培训计划最初的范围是为了支持 候选人在DS患者中进行基因信息创伤应激研究的长期目标 以及其他形式的智力残疾，并接受与DS相关的发育和精神表型的培训， 统计数据和表观遗传生物标记物。另一位导师，Nicole Baumer，医学博士，波士顿儿童基金会主任 医院唐氏综合症计划，已被添加到导师团队。鲍默博士是这一领域的领导者 唐氏综合征患者对新冠肺炎的国际反应(例如，T21研究会新冠肺炎 COVID和唐氏综合征的调查、问答)将为新冠肺炎的后果带来宝贵的洞察 DS患者及其家人所经历的感染和大流行相关应激源。

Project Summary COVID-19 is an unprecedented global pandemic. Research from previous large-scale, community traumas (e.g, natural disasters) and epidemics have documented a rise in mental health concerns during such crises, and for some, persisting effects. For families having children with Down syndrome (DS), the effects of COVID- 19 may be especially salient due to underlying medical conditions associated with poorer course, fears of medical rationing, loss of routines, structure, loss of developmental services, and social isolation. Together these factors create a “perfect storm” of risk for depression, anxiety, and behavioral conditions in people with DS that may have long-term consequences for mental and physical health of people with DS. Experts have called for surveillance studies to monitor the impact of COVID-19 to inform stepped care so that those at highest risk for psychological sequalae receive needed resources. The original scope of the parent award (K08HD092610) was focused on the assessment and evaluation of the associations between exposure to stressful life events, depression, and other markers of mental health in people with DS aged 12-45, along with the identification of biomarkers of depression in this population. This supplemental project will provide the opportunity to examine the impact of COVID-19-related stressors (e.g., job loss, social isolation, infection) on the health and wellbeing of caregivers and people with DS, including measures of depression, anxiety, adaptive behavior, and cognitive decline. The specific aims of the project are to: 1) conduct a mental health surveillance study (n = 900) to identify acute COVID-19 pandemic impacts on caregiver stress and mental health outcomes of people with DS, and to assess their trajectory over time (i.e., 2, 4, and 6 month follow up); 2) conduct deep psychiatric phenotyping (e.g., depression, anxiety, cognitive decline, adaptive functioning) and buccal cell sampling of the people with DS from the surveillance study reporting the highest (n = 25) and lowest (n = 25) COVID-related stress; and 3) examine acquired genetic/chromosomal instability, as measured by DNA methylation, telomere length, and micronuclei frequency, as a mediator between COVID-19 related stress and mental health outcomes. The original scope of the training plan of this career development award was designed to support the candidate's long-term goal of conducting genomically-informed traumatic stress research in people with DS and other forms of intellectual disability with training in DS-related developmental and psychiatric phenotypes, statistics, and epigenetic biomarkers. An additional mentor, Nicole Baumer, MD, Director of Boston Children's Hospital Down Syndrome Program, has been added to the mentorship team. Dr. Baumer is a leader in the international response to COVID-19 in people with Down syndrome (e.g., T21 Research Society COVID-19 Survey, Q&A on COVID and Down Syndrome) will bring valuable insight into the consequences of COVID-19 infection and pandemic-related stressors experienced by people with DS and their families.