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.
This request for supplemental funding is associated with active grant ?Depression, Stress, and Down Syndrome: A Multimethod Approach to Assessment? (K08 HD092610). This supplemental funding project, which is directly related to Down syndrome, will expand the scope of our research by: (1) conducting a longitudinal mental health surveillance study of the COVID-19 pandemic on caregiver stress and the mental health of their children with Down syndrome; (2) ascertaining a sample of 50 adolescents and young adults with DS reporting the highest and lowest COVID-related stress exposure to conduct a detailed psychiatric profile and buccal cell collection, and (3) assessing DNA methylation, telomere length, and micronuclei frequency in this ascertained sample to identify potential biomarkers associated with COVID-related stress. These studies could aid understanding stress-related sequalae of COVD-19 on psychiatric functioning and acquired genetic/chromosomal instability in people with Down syndrome, and lay the groundwork for efforts to prevent or ameliorate these effects.
