An international survey on the impact of COVID-19 in individuals with Down syndrome

Huels, A.; Costa, A. C. S.; Dierssen, M.; Baksh, R. A.; Bargagna, S.; Baumer, N. T.; Brandao, A. C.; Carfi, A.; Carmona-Iragui, M.; Chicoine, B. A.; Ghosh, S.; Lakhanpaul, M.; Manso, C.; Mayer, M.-A.; Ortega, M. d. C.; Real de Asua, D.; Rebillat, A.-S.; Russell, L. A.; Sgandurra, G.; Valentini, D.; Sherman, S. L.; Strydom, A.; Initiative, on behalf of the T21RS COVID-19

Background: Health conditions and immune dysfunction associated with trisomy 21 (Down syndrome, DS) may impact the clinical course of COVID-19 once infected by SARS-CoV-2. Methods: The T21RS COVID-19 Initiative launched an international survey for clinicians or caregivers/family members on patients with COVID-19 and DS (N=1046). De-identified survey data collected between April and October 2020 were analysed and compared with the UK ISARIC4C survey of hospitalized COVID-19 patients with and without DS. COVID-19 patients with DS from the ISARIC4C survey (ISARIC4C DS cases=100) were matched to a random set of patients without DS (ISARIC4C controls=400) and hospitalized DS cases in the T21RS survey (T21RS DS cases=100) based on age, gender, and ethnicity. Findings: The mean age in the T21RS survey was 29 years (SD=18), 73% lived with their family. Similar to the general population, the most frequent signs and symptoms of COVID-19 were fever, cough, and shortness of breath. Pain and nausea were reported less frequently (p<0.01), whereas altered consciousness/confusion were reported more frequently (p<0.01). Risk factors for hospitalization and mortality were similar to the general population (age, male gender, diabetes, obesity, dementia) with the addition of congenital heart defects as a risk factor for hospitalization. Mortality rates showed a rapid increase from age 40 and were higher than for controls (T21RS DS versus controls: risk ratio (RR)=3.5 (95%-CI=2.6;4.4), ISARIC4C DS versus controls: RR=2.9 (95%-CI=2.1;3.8)) even after adjusting for known risk factors for COVID-19 mortality. Interpretation: Leading signs/symptoms of COVID-19 and risk factors for severe disease course are similar to the general population. However, individuals with DS present significantly higher rates of mortality, especially from age 40. Funding: Down Syndrome Affiliates in Action, Down Syndrome Medical Interest Group-USA, GiGi's Playhouse, Jerome Lejeune Foundation, LuMind IDSC Foundation, Matthews Foundation, National Down Syndrome Society, National Task Group on Intellectual Disabilities and Dementia Practices.