Differences in clinical presentation, severity, and treatment of COVID-19 among individuals with Down syndrome from India and high-income countries: Data from the Trisomy 21 Research Society survey.

Background: People with Down syndrome (DS) are one of the highest risk groups for mortality associated with COVID-19, but outcomes may differ across countries due to different co-morbidity profiles, exposures, and societal practices, which could have implications for disease management. This study is designed to identify differences in clinical presentation, severity, and treatment of COVID-19 between India and several high-income countries (HICs). Methods: We used data from an international survey to examine the differences in disease manifestation and management for COVID-19 patients with DS from India vs HIC. De-identified survey data collected from April 2020 to August 2021 were analysed. Results: COVID-19 patients with DS from India were on average nine years younger than those from HICs. Comorbidities associated with a higher risk for severe COVID-19 were more frequent among the patients from India than from HICs. Hospitalizations were more frequent among patients from India as were COVID-19-related medical complications. Treatment strategies differed between India and HICs, with more frequent use of antibiotics in India. The average severity score of 3.31 was recorded for Indian DS in contrast to 2.3 for European and 2.04 for US cases. Conclusions: Presentation and outcomes of COVID-19 among individuals with DS were more severe for patients from India than for those from HIC. Global efforts should especially target vaccination campaigns and other risk-reducing interventions for individuals with DS from low-income countries.

Ableism at the Bedside: People with Intellectual Disabilities and COVID-19.

People with intellectual and developmental disabilities have a higher risk of mortality from COVID-19 than the general population. Providers may assume that this is due to the burden of comorbidities for this population; however, the disparity in mortality persists even when controlling for comorbidities. We review the current policies and practices that may be contributing to this higher level of mortality. We contend that pervasive ableism among medical providers leads to a variation in the medical care options that are provided to people with intellectual disabilities and their families. Due to this bias, poor outcomes for people with intellectual disabilities may become a self-fulfilling prophecy. We make recommendations to address the modifiable factors that are contributing to the higher level of mortality for people with intellectual disabilities who are infected with COVID-19, provide strategies to combat ableism within the medical field, and discuss the unique role of the primary care physician as an advocate.

Development of a symptom menu to facilitate Goal Attainment Scaling in adults with Down syndrome-associated Alzheimer's disease: a qualitative study to identify meaningful symptoms.

BACKGROUND: As life expectancy of people with Down syndrome (DS) increases, so does the risk of Alzheimer's disease (AD). Identifying symptoms and tracking disease progression is especially challenging whenever levels of function vary before the onset of dementia. Goal Attainment Scaling (GAS), an individualized patient-reported outcome, can aid in monitoring disease progression and treatment effectiveness in adults with DS. Here, with clinical input, a validated dementia symptom menu was revised to facilitate GAS in adults living with Down Syndrome-associated Alzheimer's disease (DS-AD). METHODS: Four clinicians with expertise in DS-AD and ten caregivers of adults living with DS-AD participated in semi-structured interviews to review the menu. Each participant reviewed 9-15 goal areas to assess their clarity and comprehensiveness. Responses were systematically and independently coded by two researchers as 'clear', 'modify', 'remove' or 'new'. Caregivers were encouraged to suggest additional items and recommend changes to clarify items. RESULTS: Median caregiver age was 65 years (range 54-77). Most were female (9/10) with ≥15 years of education (10/10). Adults with DS-AD had a median age of 58 years (range 52-61) and either a formal diagnosis (6/10) or clinical suspicion (4/10) of dementia. The initial symptom menu consisted of 67 symptoms each with 2-12 descriptors (589 total). The clinicians' adaptation yielded 58 symptoms each with 4-17 descriptors (580 total). Of these 580 descriptors, caregivers identified 37 (6%) as unclear; these were reworded, and one goal area (4 descriptors) was removed. A further 47 descriptors and one goal area were added to include caregiver-identified concepts. The final menu contained 58 goal areas, each with 7-17 descriptors (623 total). CONCLUSIONS: A comprehensive symptom menu for adults living with DS-AD was developed to facilitate GAS. Incorporating expert clinician opinion and input from caregivers of adults with DS-AD identified meaningful items that incorporate patient/caregiver perspectives.

Algunas cuestiones sobre la vida de los adolescentes y adultos con síndrome de Down / No disponible

El notable incremento de la longevidad de las personas con síndrome de Down debe animar a los profesionales y cuidadores a dar lo mejor de sí mismos para asegurar que esta vida más larga sea también una vida más plena y más sana, tanto en términos de su salud en general como de bienestar emocional y de su funcionamiento social. Basados en su experiencia clínica con más de 1.200 jóvenes y adultos, los autores analizan los principales problemas de carácter psicosocial, laboral y médico que han encontrado, y ofrecen soluciones y recomendaciones para prevenirlos o para mejorarlos

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