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

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 ofmedical rationing, loss of routines, structure, loss of developmental services, and social isolation. Togetherthese factors create a "perfect storm" of risk for depression, anxiety, and behavioral conditions in people withDS that may have long-term consequences for mental and physical health of people with DS. Experts havecalled for surveillance studies to monitor the impact of COVID-19 to inform stepped care so that those athighest risk for psychological sequalae receive needed resources. The original scope of the parent award (K08HD092610) was focused on the assessment and evaluation ofthe associations between exposure to stressful life events, depression, and other markers of mental health inpeople with DS aged 12-45, along with the identification of biomarkers of depression in this population. Thissupplemental 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, includingmeasures of depression, anxiety, adaptive behavior, and cognitive decline. The specific aims of the project areto: 1) conduct a mental health surveillance study (n = 900) to identify acute COVID-19 pandemic impacts oncaregiver 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, cognitivedecline, adaptive functioning) and buccal cell sampling of the people with DS from the surveillance studyreporting the highest (n = 25) and lowest (n = 25) COVID-related stress; and 3) examine acquiredgenetic/chromosomal instability, as measured by DNA methylation, telomere length, and micronucleifrequency, 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 thecandidate's long-term goal of conducting genomically-informed traumatic stress research in people with DSand 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'sHospital Down Syndrome Program, has been added to the mentorship team. Dr. Baumer is a leader in theinternational response to COVID-19 in people with Down syndrome (e.g., T21 Research Society COVID-19Survey, Q&A on COVID and Down Syndrome) will bring valuable insight into the consequences of COVID-19infection and pandemic-related stressors experienced by people with DS and their families.