Retrospective Study on Vaccine Responses and Natural Course of COVID-19 Infections in Primary Immunodeficiency

We conducted a retrospective study in the adult primary immunodeficiency clinic at UAB examining COVID-19 infection and COVID-19 antibody response from vaccination, natural infection, and immunoglobulin replacement from February 2021 to November 2022. Our goal was to determine if nucleocapsid and spike antibodies could be found in our PID patients and if these antibodies could be derived from natural infection, vaccination, or antibody replacement exclusively or combinatory. We hypothesized that increasing antibodies would be detected in our population as the COVID period extended. Two hundred and forty-five subjects were tracked over 336 clinic visits during this period. Our PID population included subjects with CVID, XLA, thymoma, hypogammaglobulinemia, IgA deficiency, IgG subclass deficiency, specific antibody deficiency, Down syndrome, IgM deficiency, and patients with recurrent sinopulmonary infections. We had 196 females and 45 males in our study. In our patient population, 47% of our patient had known COVID-19 infection. Of those 47%, 21% of those infected patients had COVID-19 at least twice. Of those infected, three did not have COVID-19 spike antibodies and chose not to get vaccinated either. Two of those patients were not on IVIG and one was on Pangyza. Of those infected, 70% (n = 80) were on IgG infusions compared to those uninfected, 77% (n = 96) were on IgG infusions. Of interest, we had three XLA patients and all three had COVID-19 infection in the summer 2021. Two of them tested positive for nucleocapsid and spike antibodies in high titers and they were receiving Gammagard or Gamunex infusions, suggesting that these immunoglobulin preparations contain COVID-19 antibodies. We are still in the process of analyzing our data to see if diagnosis, IgG preparations, date of testing, B cell numbers, and drugs play a role in producing nucleocapsid antibodies and high spike antibody titers.Copyright © 2023 Elsevier Inc.

The Feasibility and Impact of a Computer-Aided Genetics Education Module in an Obstetrics Clinic: A Randomized Controlled Trial

BackgroundRapid advances in prenatal genetic testing highlight the need for technology-based tools to assist in informed decision-making.PurposeThis study evaluates the feasibility, acceptability, and efficacy of a Computer-Aided Genetics Education Module (CAGEM) as an e-counseling tool and decision aid in a busy obstetric clinic among a socially disadvantaged patient population.MethodsA randomized controlled trial with patients randomized (1:1) to receive the intervention in addition to standard of care or standard of care only. Participants responded to pre- and posttest questionnaires.ResultsAlthough limited in recruitment by the COVID-19 pandemic, this tool scored 81.0% acceptability and 91.0% feasibility among 88 participants. No statistically significant difference was detected between the overall improvement in knowledge scores and the total posttest knowledge scores among the intervention and control groups. However, the intervention group scored significantly higher on the posttest questions regarding NIPT interpretation (61.7 +/- 49.1 vs 80.9 +/- 39.8, p = .049), Down syndrome (78.7 +/- 41.4 vs 93.6 +/- 24.7, p = .016), and inheritance of recessive conditions (59.6 +/- 49.6 vs 91.4 +/- 28.2, p < .001). The intervention group also showed a greater improvement in knowledge scores for inheritance of recessive conditions (31.9 +/- 8.1 vs 0 +/- 7.8, p = .006) and a protective effect in knowledge scores for Down syndrome (0 +/- 6.1 vs -17.1 +/- 6.0, p =.049).DiscussionCAGEM may be a feasible and acceptable e-counseling tool and decision aid, especially when compared to standard of care prenatal counseling. Although overall knowledge did not show significant improvement, CAGEM showed promise in enhancing knowledge acquisition for certain genetic education topics, showing that technology-based tools may be beneficial in informed consent. Future iterations may be revised to improve clarity, especially around invasive testing methods, race congruency, and insurance coverage.Translation to Health Education Practice: This study's method creates a model for Health Educators to design and evaluate technology-based tools for improving informed decision-making around prenatal genetic testing. Tools like CAGEM may be utilized to improve patient education prior to prenatal appointments and thus serve as an adjunct to provider counseling. Specifically, CAGEM addresses multiple NCHEC Responsibilities and Competencies including #1.1.2, 1.3.2, 1.3.4, 4.2.9, and 6.4.3.

Strong impact of the COVID-19 pandemic on fetal development and chromosomal abnormalities

Background/Objectives: To date, not many studies have been conducted to examine the role of COVID-19 on gestation and fetal development. During COVID-19, pregnant women had difficulty accessing prenatal screening and care due to pandemics restrictions and lockdowns. In this retrospective study we aimed to assess the effect of the SARS-CoV-2 outbreak on fetal development in both prenatal and postnatal outcomes pre-and pre-COVID-19 pandemics in Northern Cyprus. Method(s): A total number of 61 aborted materials were karyotyped during the pre-pandemic period (January 2017 and March 2020) whereas 24 samples were analysed during the peripandemic period (March 2020-November 2021). On the other hand, 25 new-borns blood samples during the pre-pandemic and 44 samples during the pre-pandemic period were analysed. Result(s): No statistically significant difference found in health and abnormal aborted material karyotypes between two periods. On the other hand, a statistical significance was observed in postnatal chromosomal abnormalities (P = 0.04) after two long pandemic lockdowns, which are known as the first and the second waves, dramatically indicating that no baby with Down syndrome was between 2017-2020 whereas seven babies with Down Syndrome were born as consequences of without taking precaution against lockdowns. Conclusion(s): Overall, prenatal care is failed which resulting increased postnatal chromosomal abnormality due to heavy flight restrictions, economic inflation instability, limited access to medical services during COVID-19 pandemic lockdowns in Northern Cyprus.

Views on the impact of the COVID-19 pandemic on health in people with Down syndrome from diverse backgrounds.

Down syndrome (DS) has a unique medical and psychological profile. To date, few studies have asked individuals with DS about their views of health, and fewer have explored the impact of COVID-19 on the health of individuals with DS and their families. We used a mixed methods approach including two studies on the health of individuals with DS and their parents conducted during the COVID-19 pandemic: (1) eight virtual focus groups, comprised of 20 parents and 8 individuals with DS to obtain participants' views of health, and (2) a 20-item questionnaire on health care experience of patients with DS who are African American or come from primarily Spanish-speaking homes. Focus group transcripts were coded using a hybrid inductive/deductive framework and thematically analyzed using the Framework Method. This questionnaire included questions regarding the impact of COVID-19 on caregivers and their loved ones with DS; responses to these questions were summarized using descriptive statistics. Individuals with DS discussed the impact of the COVID-19 pandemic on their physical and social health including masking, online learning, and online communication with friends and family. Parents of individuals with DS discussed how the COVID-19 pandemic negatively impacted their child's physical, social, and mental health, as a result of virtual schooling and decreased socialization. There were unexpected positives of the pandemic such as improved hygiene and eased scheduling with telehealth visits. Caregivers noted COVID-19 impacted their own anxiety, employment, and other domains that have potential ripple effects on the health of their children. The COVID-19 pandemic had a pervasive impact on the mental health and wellness of caregivers as well as the physical, social, and mental health of individuals with DS.

Effectiveness of exergames programme to modify body composition and health-related physical fitness in adolescents with down syndrome after COVID-19 quarantine.

AIMS: to determine the effect of a 20-week exergame program on different indicators of body composition and components of health-related physical fitness in adolescents with Down syndrome. Methods and Procedures Outcomes: 49 adolescents (19 female and 30 males; average age, 14.19 ± 2.06 years) with Down syndrome were recruited and randomized to two groups (control group vs. intervention group). Adolescents allocated in the control group carried out a physical activity program three times a week for 20 weeks meanwhile adolescents allocated in the exercise group performed an exergame program three times a week for 20 weeks. RESULTS: The exercise group had significant improvements in all health-related physical fitness variables and there is an improvement in some body composition variables (p < 0.05). CONCLUSIONS AND IMPLICATIONS: 20 week exergame program consisting of 3 sessions of 60 minutes is able to improve levels of body composition and health-related physical fitness in adolescents with Down syndrome.

Research in body composition and health-related physical fitness of people with Down syndrome has revealed that an exergame programme increases levels of health-related physical fitness in adolescents with Down syndromeAn exergame programme can improve differences in markers of body composition between the control group and the intervention groupThe intervention group that performed the exergame programme showed increases in health-related physical fitness levels after 20 weeks of intervention.The control group that performed a based on developing motor behaviour programme did not show differences in body composition or health-related physical fitness after 20 weeks of intervention.

The effect of a physical exercise package on the motor proficiency of students with down syndrome

Objectives: The purpose of this study was to evaluate the feasibility and potential effect of a physical exercise package on the motor proficiency of children and adolescents with Down syndrome. Methods: In this research, an experimental design was conducted in two special schools to evaluate the effectiveness of this package and identify its strengths and weaknesses. Forty students with Down syndrome were selected and randomly divided into intervention and control groups. A total of 36 (22 male and 14 female) students out of 50 at two special schools for children with special needs between October 2020 and March 2021 were recruited for the study. Participants were aged 12.888 +or- 2.375 (12.954 +or- 2.609 for boys and 12.785 +or- 2.044 for girls) years. The 18 students in the intervention group participated in the exercise sessions, 2 or 3 sessions per week for 12 weeks. Pre- and post-tests were performed on both groups. The Physical Exercise Package included the principles of exercise, the preferred exercise methods, and the details of exercise planning for Down syndrome individuals (FITT-VP) based on the etiology of Down syndrome and the characteristics of people with this syndrome. Motor proficiency was measured using the Bruininks Oseretsky Test of Motor Proficiency (BOT-2). Results: The results of the study showed that the designed exercise package was adhered to with all the participants attending 93.2% of the sessions, and participants significantly improved their total motor proficiency score, manual dexterity, upper-limb coordination, strength, balance, upper-limb coordination, running speed and agility and fine motor Integration (P < 0.05). However, the exercises did not significantly change the bilateral coordination and fine motor precision (P > 0.05). Conclusions: the current study result shows that developing and implementing the individualized exercise package and observing the principles set out in the program could have significant positive impacts on the motor proficiency of students with Down syndrome.

Long-Term Effects of SARS-CoV-2 in the Brain: Clinical Consequences and Molecular Mechanisms.

Numerous investigations have demonstrated significant and long-lasting neurological manifestations of COVID-19. It has been suggested that as many as four out of five patients who sustained COVID-19 will show one or several neurological symptoms that can last months after the infection has run its course. Neurological symptoms are most common in people who are less than 60 years of age, while encephalopathy is more common in those over 60. Biological mechanisms for these neurological symptoms need to be investigated and may include both direct and indirect effects of the virus on the brain and spinal cord. Individuals with Alzheimer's disease (AD) and related dementia, as well as persons with Down syndrome (DS), are especially vulnerable to COVID-19, but the biological reasons for this are not clear. Investigating the neurological consequences of COVID-19 is an urgent emerging medical need, since close to 700 million people worldwide have now had COVID-19 at least once. It is likely that there will be a new burden on healthcare and the economy dealing with the long-term neurological consequences of severe SARS-CoV-2 infections and long COVID, even in younger generations. Interestingly, neurological symptoms after an acute infection are strikingly similar to the symptoms observed after a mild traumatic brain injury (mTBI) or concussion, including dizziness, balance issues, anosmia, and headaches. The possible convergence of biological pathways involved in both will be discussed. The current review is focused on the most commonly described neurological symptoms, as well as the possible molecular mechanisms involved.

Adequacy of Sotrovimab Prescription in Sarscov- 2 Infection in a University Hospital

Background and Importance The Spanish Medicines and Health Products Agency (AEMPS) has developed criteria to adapt the prescription of sotrovimab1, due to the pandemic situation and the limited drug stock. Aim and Objectives To describe the patients' population on treatment with sotrovimab and to assess the adequacy of this prescription according to the criteria established by the AEMPS. Material and Methods Retrospective observational study analysing all sotrovimab prescriptions in patients with SARS-CoV-2 infection from 01/25/2022 to 08/31/2022. Demographic variables and data required by the AEMPS for sotrovimab prescription were collected: Omicron variant infection, SARS-CoV-2 vaccination status, serology [anti-S antibody< 260 BAU (binding antibody units)/mL]. Also, patients had to belong to one of the following groups: * Group 1: Immunocompromised, regardless of vaccination status. * Group 2: >80 years unvaccinated. * Group 3: >65 years (regardless of vaccination status) and >=1 risk factor for progression. Prescriptions for sotrovimab were collected and analysed to determine whether they met the criteria and whether they were accepted. Data collected from electronic medical records and processed using Excel2019. Results Fifty patients were included, 62% male;median age 69 years (IQR=60-76). 100% had the Omicron variant. Vaccination status: 84% complete, 6% incomplete and 10% unvaccinated. Serology: 96% (<260 BAU/mL) and 4% (>260 BAU/ ml). 92% belonged to group 1 (39% solid organ transplantation, 29% active myelotoxic chemotherapy, 13% non-cytotoxic onco-haematological treatments with neutropenia/lymphopenia, 13% treatment with biological immunomodulators, 2% Down's syndrome, 2% haematopoietic stem cell transplantation or CAR-T, 2% HIV infection (with <=200 cells/mL). Two per cent belonged to group 2. The remaining patients (6%) did not belong to any group. Ten per cent of the applications did not meet the criteria: four of them were not accepted (patients did not belong to any risk group);one was accepted, although it was a well-controlled HIV. Conclusion and Relevance The main profile of patients treated with sotrovimab is men with solid organ transplantation, vaccinated and with negative immunity to SARS-CoV-2. Although the appropriateness of the prescription is high, it is necessary to continue protocolising the use of this drug to ensure its rational use.

Effect of COVID-19 on Type 2 Diabetes Self-Care Behaviors: A Rapid Review

OBJECTIVE The aim of this review was to describe how the coronavirus disease 2019 (COVID-19) lockdown affected the self-care behaviors of people living with type 2 diabetes. METHODS A systematic rapid review was conducted using four electronic databases. Studies reporting on the lock-down's impact on at least one of the self-care behaviors that were published from January 2020 through October 2021 were included. Findings were synthesized narratively, using the Association of Diabetes Care & Education Specialists ADCES7 Self-Care Behaviors as a framework. The methodological level of evidence and quality ratings of the articles were assessed using the Joanna Briggs Institute Appraisal Checklist. RESULTS Fifteen articles were included. Most studies reported on at least five of the self-care behaviors. There were reported increases in diabetes-related stress, as well as in increases in dietary intake and changes in the timing of meals. Physical activity was reported to decrease. Overall, taking medications and glycemic self-monitoring of blood glucose (SMBG) were unaffected by the lockdown. Of the studies reporting glycemic outcomes, the lockdown appeared to have little negative effect. None of the articles assessed all the self-care behaviors. The self-care behavior of SMBG was the least assessed. Most articles had a medium level of evidence and a medium to high quality rating (scores >60%). CONCLUSION The findings from this review found the COVID-19 lockdown had a variable impact on diabetes self-care behaviors. Because the potential for future COVID-19 surges and/or other virulent transmissible diseases remains a concern, health care providers should continue to address the importance of self-care behaviors to mitigate the risk of poor health outcomes in people with diabetes.Copyright © 2023 by the American Diabetes Association.

Physical activity, food and social distancing of people with down syndrome during the COVID-19 pandemic / Atividade física, alimentação e distanciamento social de pessoas com síndrome de down durante a pandemia da COVID-19 / Actividad física, alimentación y distanciamiento social de personas con síndrome de down durante la pandemia COVID-19

Esta pesquisa tem por objetivo analisar o distanciamento social, o nível de atividade física e a alimentação de pessoas com síndrome de Down durante a pandemia de COVID-19. Participaram do estudo 24 pessoas por meio de um formulário eletrônico com 45 questões fechadas. Entre os resultados encontrados verificou-se que após uma média de 69,87 dias do início das medidas de afastamento e redução de convívio para controle da pandemia houve diminuição do nível de atividade física e da qualidade da alimentação, bem como o aumento do índice de massa corporal. Verificou-se que as pessoas com síndrome de Down desenvolveram, em distanciamento social, características que po-dem agravar um possível quadro de COVID-19 e a maioria tem contato com pessoas que não estão reduzindo a interação com outras pessoas. Concluiu-se que ações voltadas para as pessoas com síndrome de Down são urgentes para que essas não fiquem ainda mais expostas às consequências da pandemia (AU0.

This research aims to analyze the social distancing, the level of physical activity and the diet of people with Down syndrome, during the COVID-19 pandemic. 24 people participated in this study by means of an electronic form with 45 closed questions. Among the results found, it was found that after an average of 69.87 days of distancing, there was a decrease in the level of physical activity and quality of food, as well as an increase in the body mass index. It was found that people with Down syndrome have characteristics that can aggravate a possible COVID-19 condition and most have contact with people who are not in distancing. It was concluded that actions are urgently needed so that people with Down syndrome are not even more exposed in this pandemic moment (AU).

Esta investigación tiene como objetivo analizar el distancia-miento social, el nivel de actividad física y la dieta de las personas con síndrome de Down durante la pandemia de COVID-19. 24 personas par-ticiparon en este estudio a través de un formulario electrónico con 45 preguntas cerradas. Entre los resultados encontrados, se encontró que luego de un promedio de 69,87 días de distanciamiento social se presen-tó una disminución en el nivel de actividad física y la calidad de la alimen-tación, así como un aumento en el índice de masa corporal. Se encon-tró que las personas con síndrome de Down tienen características que pueden agravar una posible condición de COVID-19 y la mayoría tiene contacto con personas que no están distanciamiento social. Se concluyó que se necesitan acciones urgentes para que las personas con Síndrome de Down no estén aún más expuestos en este momento de pandemia (AU).

Innovating Therapies for Down Syndrome: An International Virtual Conference of the T21 Research Society.

Research focused on Down syndrome continued to gain momentum in the last several years and is advancing our understanding of how trisomy 21 (T21) modifies molecular and cellular processes. The Trisomy 21 Research Society (T21RS) is the premier scientific organization for researchers and clinicians studying Down syndrome. During the COVID pandemic, T21RS held its first virtual conference program, sponsored by the University of California at Irvine, on June 8-10, 2021 and brought together 342 scientists, families, and industry representatives from over 25 countries to share the latest discoveries on underlying cellular and molecular mechanisms of T21, cognitive and behavioral changes, and comorbidities associated with Down syndrome, including Alzheimer's disease and Regression Disorder. Presentations of 91 cutting-edge abstracts reflecting neuroscience, neurology, model systems, psychology, biomarkers, and molecular and pharmacological therapeutic approaches demonstrate the compelling interest and continuing advancement toward innovating biomarkers and therapies aimed at ameliorating health conditions associated with T21.

Anxiety and Worries of Individuals with Down Syndrome During the COVID-19 Pandemic: A Comparative Study in the UK.

The present study explored the effects of the pandemic on individuals with Down Syndrome (DS; n = 67) compared to other groups with Special Education Needs and Disabilities (SEND; n = 48) and their Typically Developing Siblings (TDS; n = 56). In total, 115 caregivers reported on their own anxiety and worries and of their children. Anxiety levels for individuals with DS appeared to be lower compared to other SEND populations and to TDS. In terms of worries, individuals with DS worried more about social-related worries but worried less about family-related aspects compared to the other groups. In sum, individuals with DS might show less anxiety but still worried more about specific aspects related to the impact of COVID-19 pandemic on their lives.

Management of Pediatric Pulmonary Hypertension Using Remote Pulmonary Artery Pressure Sensor Monitoring

Background Management of pediatric pulmonary hypertension (PH) may require manipulation of multiple receptor sites to maximize response to medical therapy. Assessment of response typically occurs through imaging, labs, physical exam and recurrent cardiac catheterization, with anesthetic exposure to assess pulmonary artery pressures (PAP) and vascular resistance (PVR). We aimed to assess feasibility, safety and utility of remote PAP monitoring in pediatric PH patients. Methods We reviewed 4 pediatric patients with significant PH, each of whom underwent cardiac catheterization with pulmonary vasoreactivity testing and placement of a CardioMEMS remote PAP monitoring device. Results Four patients (P1-4: ages 5, 6, 8 and 10 years old) underwent CardioMEMS insertion without procedural complication. P1, P2 and P3 presented with unrepaired VSD;ASD with partial anomalous pulmonary venous return;and ASD and PDA, respectively, while P4 had prior repair of atrioventricular canal. Three patients had Down syndrome. All had elevated PAP and PVR. Mean left lower PA branch size was 7 mm. Mean PAP prior to therapy was 70 mm Hg for P1, 82 for P2, 93 for P3 and 30 for P4. All 4 patients required initiation of triple therapy for treatment of PH, with improvement or normalization of PAP by CardioMEMS, which also included surgical or catheter based intervention for 3 patients. Post-repair of P2, he was unable to be separated from cardiopulmonary bypass and was placed on ECMO. Right ventricular cardiac output improved over 2 weeks, with improvement of PAP determined through serial CardioMEMS. He was successfully decannulated, utilizing CardioMEMS in the OR. Two patients also developed COVID respiratory infections at home with CardioMEMS assessments allowing for oxygen and medication titration. Conclusion Remote PAP monitoring is feasible and appears safe in pediatric patients with adequate PA size. It allows for manipulation of medical therapy with real time knowledge of impact on PAP and can augment management during weaning of mechanical cardiac support. It may also augment decision-making in management of PH patients with developmental disabilities in whom traditional assessments may be more challenging.Copyright © 2023 American College of Cardiology Foundation

Living and dying well with dementia

Many people with intellectual disability, particularly those with Down syndrome, are at increased risk for Alzheimer's disease. Recent findings suggest that while onset may be at an earlier age and more rapid in early dementia stages, there is often a long late stage where decisions about end-of-life care and dying well must be supported. For the individual and caregivers, later stages of dementia can be complicated by lack of understanding and preparedness by both generic palliative care and intellectual disability services. The COVID-19 pandemic has posed significant challenges for staff and family, and many have struggled with moral distress as they feel forced to act in a manner contrary to their own care beliefs. Three case studies with reflective questions about caring for people with Down syndrome and dementia are offered, one from the COVID-19 period. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Medication Adherence in Children with Down Syndrome with Autoimmune Thyroid Disease During the Covid-19 Pandemic: Indonesian Study

Background: The coronavirus disease-19 (COVID-19) pandemic has significantly affected healthcare systems. Down syndrome (DS) is a chronic disease caused by trisomy of chromosome 21 which is associated with a variety of medical problems such as autoimmune thyroid disease (AITD) that necessitate comprehensive routine treatment. During the COVID-19 pandemic, there was an increasing an unavailability, which became an impediment to chronic disease patients' drug consumption. Objective(s): The purpose of this study was to examine the barriers to medication adherence faced by DS patients during the COVID-19 pandemic. Method(s): An observational analytic study was conducted from January to July 2021 among parents of DS patients who registered in the pediatric endocrinology outpatient clinic of Dr. Soetomo General Hospital. Inclusion criteria include: The parents of DS with AITD patients aged 1-18 years who came to the pediatric endocrinology polyclinic, routinely took oral medication before March 2020, can fill out questionnaire forms independently, and signed the informed consent. Exclusion criteria were parents of DS patients who did not take regular medication, or started treatment after March 2020. Data were collected and analyzed using the Wilcoxon comparison test Results: There are 31 DS patients responded and completed the questionnaires. Adherence to hospital visits in DS with AITD patients before and during the COVID-19 pandemic showed significant differences (P = 0.001). The main barriers to follow-up visits during the pandemic were lockdown protocol which made travel difficult (28%). The compliance for taking medication was still high although 13 (41.9%) obtained the medicine without a prescription. Conclusion(s): Changes in terms of medication adherence during the pandemic have highlighted the importance of improving DS patient's access to healthcare. Shifting medication counseling to the nearest primary health care provider with supervision from a tertiary referral specialist appears to be a reasonable and potentially cost-effective strategy in improving treatment adherence especially in a pandemic setting.Copyright © 2023, Author(s).

Self-advocates with Down syndrome research: The lived experiences of COVID-19 lockdowns in Aotearoa New Zealand.

BACKGROUND: Individuals with Down syndrome are particularly vulnerable to COVID-19 because they are recognised as significantly immunocompromised. Yet their voices regarding their lived experiences of pandemic lockdowns have not been sought or heard. AIM: This study aims to describe the lived experiences of people with Down syndrome during the pandemic lockdowns in Aotearoa New Zealand to add evidence in order to inform systemic advocacy. METHOD: A mixed-methods approach positioned within an inclusive research paradigm was used, in which a group of self-advocates with Down syndrome co-designed a structured interview schedule and conducted 40 face-to-face interviews. Key themes were identified by using content analysis. RESULTS: Despite the difficulties associated with lockdowns and participants not receiving their usual supports and having to make significant adjustments, they remained positive, adapted well, and demonstrated a high level of resilience and adaptability. CONCLUSIONS: The findings add to the limited research on the lived experiences of people with Down syndrome during pandemic lockdowns. This research has given them a voice to contribute to policy, government initiatives, and service providers; particularly on issues around support during lockdown and staying connected with others.

ABRACADABRA literacy instruction for children with Down syndrome via telepractice during COVID-19: A pilot study.

BACKGROUND: COVID-19 has resulted in some educators and allied health practitioners transitioning to online delivery of literacy instruction. As far as we are aware, no studies have investigated online delivery of comprehensive literacy instruction for children with Down syndrome. AIMS: In this pilot study, we explore the efficacy of online delivery of ABRACADABRA (a free literacy web application) for children with Down syndrome, alongside supplementary parent-led shared book reading, during the COVID-19 pandemic. SAMPLE: Six children with Down syndrome, aged 8-12 years, participated in this within-participants design study. METHODS: Participants acted as their own controls with outcome variables measured at three timepoints: baseline, pre-instruction and post-instruction. Children participated in 16-18 hrs of one-to-one literacy instruction online over a 6-week instruction phase, along with twice weekly parent-led shared book reading activities. RESULTS: Outcomes from standardized assessments revealed statistically significant improvements in word- and passage-level reading accuracy skills over the instruction phase (pre-instruction to post-instruction) compared with the no-instruction control phase (baseline to pre-instruction). Improvements in reading comprehension skills were inconsistent across assessment measures and statistical analyses. CONCLUSION: Children with Down syndrome can benefit from comprehensive literacy instruction delivered via telepractice. Our study provides critical initial evidence of successful service delivery during a global pandemic and beyond.

Disinfection behavior for COVID-19 in individuals with Down syndrome and caregivers' distress in Japan: a cross-sectional retrospective study.

The COVID-19 outbreak affected the daily lives of individuals with Down syndrome, who were considered to have a higher risk of severe infection. While several studies have reported mental health issues in children and/or parents in the general population, no study has focused on people with Down syndrome and their caregivers. This study investigated the disinfection behaviors of individuals with Down syndrome and their caregivers' stress. A cross-sectional retrospective survey was conducted in October 2020. Caregivers of children and adults with Down syndrome were administered questionnaires including measures for practiced disinfection behavior in children, caregiver's child-related stress, and psychological distress. About half of the respondents' children practiced hand hygiene and mask-wearing behaviors, while physical distancing was performed less frequently. Habitual practices in physical distancing are affected by intellectual function. Logistic regression showed that caregivers' stress was associated with the irritability of individuals with the disorder (adjusted odds ratio [OR] = 8.44, 95% confidence interval [CI] 1.69-42.09) and the burden of infection-prevention behaviors for people with Down syndrome (adjusted OR = 4.26, 95% CI 1.88-9.65). This study showed the characteristics of disinfection behaviors in individuals with Down syndrome and associated factors for serious caregiver stress.