Pilot Randomised Controlled Trial - Nurture Early for Optimal Nutrition (NEON) Study: Community facilitator-led participatory learning and action (PLA) women's groups to improve infant feeding, care and dental hygiene practices in South Asian infants aged < 2 years in East London (preprint)

Background: The first 1000-days of life are a critical window and can result in adverse-health consequences due to inadequate nutrition. South-Asian (SA) communities face significant health-disparities, particularly in maternal and child-health. Community-based-interventions, often employing Participatory-Learning-and-Action (PLA) approaches, have effectively addressed health-inequalities in lower-income-nations. The aim of this study was to assess the feasibility of implementing a PLA-intervention to improve infant-feeding and care-practices in SA communities in London. Methods: Comprehensive-analyses were conducted to assess the feasibility/fidelity of this pilot-randomised-controlled-trial. Summary-statistics were computed to compare key-metrics (participant consent-rates, attendance, retention, intervention-support, perceived-effectiveness) against predefined-progression-rules guiding towards a definitive-trial. Secondary-outcomes were analysed, drawing insights from sources, such as The-Children's-Eating-Behaviour-Questionnaire (CEBQ), Parental-Feeding-Style-Questionnaires (PFSQ), 4-Day-Food-diary, and the Equality-Impact-Assessment (EIA) tool. Video-analysis of children's mealtime behaviour trends was conducted. Feedback-interviews were collected from participants. Results: Process-outcome measures met predefined-progression-rules for a definitive-trial which deemed the intervention as feasible. The secondary-outcomes analysis revealed no significant changes in children's BMI z-scores. This could be attributed to the abbreviated follow-up period of 6-months, reduced from 12-months, due to COVID-19-related delays. CEBQ analysis showed increased food-responsiveness, along with decreased emotional-over/undereating. A similar trend was observed in PFSQ. The EIA-tool found no potential discrimination areas, and video-analysis revealed a decrease in force-feeding-practices. Participant-feedbacks revealed improved awareness and knowledge-sharing. Conclusion: The study validates the feasibility of a community-oriented, co-adapted Participatory-Learning-and-Action approach for optimising infant-care among South-Asians in high-income countries. It underscores the potential of such interventions in promoting health-equity and improving health-outcomes. Further research is required to evaluate their wider impact.

COVID-19 in Children with Down Syndrome: Data from the Trisomy 21 Research Society Survey (preprint)

Importance: Adults with Down syndrome (DS) are at higher risk for severe outcomes of coronavirus disease 2019 (COVID-19), but further evidence is required to determine the exact risks for children with DS. The clinical features and epidemiological characteristics of COVID-19 in children with DS, and risk factors for severe outcomes, must be established to inform COVID-19 shielding advice and vaccination priority. Objective: To determine risk factors for a severe course of COVID-19 in pediatric DS patients and to compare the prevalence of severe COVID-19 between pediatric patients with and without DS. Design: This retrospective cohort study included pediatric cases (aged <18 years) with DS from the Trisomy 21 Research Society international survey and pediatric cases from the general population published by the US Centers for Disease Control and Prevention (COVID-NET) collected during the first wave of the COVID-19 pandemic (controls). Setting: Cohorts included 328 children with DS (127 hospitalized, 39%) and 224 children without DS (all hospitalized) with COVID-19. Of the pediatric DS patients, 64.1% were from low-to-middle-income countries (LMICs), and 35.9% from high-income countries (HICs). Participants: Clinicians, family members, or caregivers completed the survey on behalf of children with DS affected by COVID-19. Results: Among the 328 COVID-19 patients with DS; older age, obesity, and epilepsy were significant risk factors for hospitalization; and age and thyroid disorder were significant risk factors for acute respiratory distress syndrome. The 127 hospitalized COVID-19 patients with DS had a higher incidence of cough, fever, nasal signs and shortness of breath than controls. Compared with controls, hospitalized children with DS (especially those from LMICs) had a higher prevalence of COVID-19-related medical complications (pneumonia, ARDS, acute renal failure). Conclusions and relevance: Children with DS are at higher risk for severe COVID-19 than the general pediatric population. Efforts should be made to monitor the health of children and young people with DS during the ongoing pandemic and to report any COVID-19 signs and symptoms in a timely manner, especially for those who have comorbidities which are risk factors for severe COVID-19. When vaccination rollout for pediatric populations begins, children with DS should be prioritised.

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

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.