Tailored vs. General COVID-19 prevention for adults with mental disabilities residing in group homes: a randomized controlled effectiveness-implementation trial.

BACKGROUND: People with serious mental illness (SMI) and people with intellectual disabilities/developmental disabilities (ID/DD) are at higher risk for COVID-19 and more severe outcomes. We compare a tailored versus general best practice COVID-19 prevention program in group homes (GHs) for people with SMI or ID/DD in Massachusetts (MA). METHODS: A hybrid effectiveness-implementation cluster randomized control trial compared a four-component implementation strategy (Tailored Best Practices: TBP) to dissemination of standard prevention guidelines (General Best-Practices: GBP) in GHs across six MA behavioral health agencies. GBP consisted of standard best practices for preventing COVID-19. TBP included GBP plus four components including: (1) trusted-messenger peer testimonials on benefits of vaccination; (2) motivational interviewing; (3) interactive education on preventive practices; and (4) fidelity feedback dashboards for GHs. Primary implementation outcomes were full COVID-19 vaccination rates (baseline: 1/1/2021-3/31/2021) and fidelity scores (baseline: 5/1/21-7/30/21), at 3-month intervals to 15-month follow-up until October 2022. The primary effectiveness outcome was COVID-19 infection (baseline: 1/1/2021-3/31/2021), measured every 3 months to 15-month follow-up. Cumulative incidence of vaccinations were estimated using Kaplan-Meier curves. Cox frailty models evaluate differences in vaccination uptake and secondary outcomes. Linear mixed models (LMMs) and Poisson generalized linear mixed models (GLMMs) were used to evaluate differences in fidelity scores and incidence of COVID-19 infections. RESULTS: GHs (n=415) were randomized to TBP (n=208) and GBP (n=207) including 3,836 residents (1,041 ID/DD; 2,795 SMI) and 5,538 staff. No differences were found in fidelity scores or COVID-19 incidence rates between TBP and GBP, however TBP had greater acceptability, appropriateness, and feasibility. No overall differences in vaccination rates were found between TBP and GBP. However, among unvaccinated group home residents with mental disabilities, non-White residents achieved full vaccination status at double the rate for TBP (28.6%) compared to GBP (14.4%) at 15 months. Additionally, the impact of TBP on vaccine uptake was over two-times greater for non-White residents compared to non-Hispanic White residents (ratio of HR for TBP between non-White and non-Hispanic White: 2.28, p = 0.03). CONCLUSION: Tailored COVID-19 prevention strategies are beneficial as a feasible and acceptable implementation strategy with the potential to reduce disparities in vaccine acceptance among the subgroup of non-White individuals with mental disabilities. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04726371, 27/01/2021. https://clinicaltrials.gov/study/NCT04726371 .

Predictors of COVID-19 infection and hospitalization in group homes for individuals with intellectual and/or developmental disabilities.

BACKGROUND: More than seven million people with intellectual and/or developmental disabilities (ID/DD) live in the US and may face an elevated risk for COVID-19. OBJECTIVE: To identify correlates of COVID-19 and related hospitalizations among people with ID/DD in group homes in Massachusetts. METHODS: We collected data during March 1, 2020-June 30, 2020 (wave 1) and July 1, 2020-March 31, 2021 (wave 2) from the Massachusetts Department of Public Health and six organizations administering 206 group homes for 1035 residents with ID/DD. The main outcomes were COVID-19 infections and related hospitalizations. We fit multilevel Cox proportional hazards models to estimate associations with observed predictors and assess contextual home- and organizational-level effects. RESULTS: Compared with Massachusetts residents, group home residents had a higher age-adjusted rate of COVID-19 in wave 1 (incidence rate ratio [IRR], 12.06; 95 % confidence interval [CI], 10.51-13.84) and wave 2 (IRR, 2.47; 95 % CI, 2.12-2.88) and a higher age-adjusted rate of COVID-19 hospitalizations in wave 1 (IRR, 17.64; 95 % CI, 12.59-24.70) and wave 2 (IRR, 4.95; 95 % CI, 3.23-7.60). COVID-19 infections and hospitalizations were more likely among residents aged 65+ and in group homes with 6+ resident beds and recent infection among staff and residents. CONCLUSIONS: Aggressive efforts to decrease resident density, staff-to-resident ratios, and staff infections through efforts such as vaccination, in addition to ongoing access to personal protective equipment and COVID-19 testing, may reduce COVID-19 and related hospitalizations in people with ID/DD living in group homes.

Brief report: Physical activity assessment and counseling in adults with Down syndrome.

Adults with Down syndrome are at an increased risk for developing certain medical conditions, which can be further exacerbated by lower levels of physical activity. Physician counseling can provide a supportive environment to encourage modes of physical activity accessible to patients and caregivers. While some adults with Down syndrome have access to a Down syndrome specialty clinic, most are followed only by a primary care physician. This report includes adult patients with Down syndrome followed at a Down syndrome specialty clinic in Boston and compares physical activity assessment and counseling rates by Down syndrome specialists and primary care physicians. Patients were more likely to have physical activity assessment and counseling performed by a Down syndrome specialist than by a primary care physician. A better understanding of the barriers primary care physicians caring for adults with Down syndrome experience related to physical activity counseling could help improve important health habit counseling in this high-risk population.

Pneumonia vaccine response in individuals with Down syndrome at three specialty clinics.

Individuals with Down syndrome (DS) have been particularly impacted by respiratory conditions, such as pneumonia. However, the description of co-occurring recurrent infections, the response to pneumococcal immunization, and the association of these was previously unknown. We screened individuals with DS using an 11-item screener and prospectively collected pneumococcal titers and laboratory results. We found that the screener did not successfully predict which individuals with DS who would have inadequate pneumococcal titers. Thirty four of the 55 individuals with DS (62%) had abnormal pneumococcal titers demonstrating an inadequate response to routine immunization. In the absence of a valid screener, clinicians should consider screening all individuals with DS through the use of pneumococcal titers to 23 serotypes to assess vaccine response.

Physical Activity Patterns, Satisfaction, and Quality of Life Among Nursing and non-Nursing Staff in an Office-Based Care Coordination Program.

Introduction: Sedentary work is associated with poor health outcomes. Many healthcare occupations, including office-based care coordination, are largely sedentary. Many nurses do not achieve the recommended levels of daily physical activity, however, the physical activity levels among nurses working in care coordination are not known. Objective: To assess the physical activity levels, self-reported health and well-being, overall quality of life, and work-related satisfaction of office-based care coordinators, and compare these among nursing and non-nursing staff. Methods: This study collected objective physical activity data using accelerometry along with self-reported information on work-related quality of life and satisfaction from 42 healthcare staff working in a hospital-affiliated office-based care coordination program. Results were compared among nursing and non-nursing staff. Results: Nurses had lower moderate-to-vigorous physical activity levels compared to non-nursing staff (25 min/day vs. 45, p = .007). There were no differences in daily sedentary time, light activity, or steps between nursing and non-nursing staff. Nurses reported high quality of life scores compared to non-nursing staff (4.4 vs. 4.1, p = .02), but similar levels of work-related quality of life, happiness, self-rated health, and well-being. Conclusion: Nurses working in an office-based care coordination program had lower levels of physical activity but reported a higher overall quality of life than non-nurse work colleagues working in a similar environment. Given known health risks associated with sedentary occupational work and the growing number of care coordination programs, health policies and initiatives aimed at increasing the physical activity levels of care coordination workers is of prime importance.

Male Runners With Lower Energy Availability Have Impaired Skeletal Integrity Compared to Nonathletes.

CONTEXT: Female athletes, particularly runners, with insufficient caloric intake for their energy expenditure [low energy availability (EA) or relative energy deficiency] are at risk for impaired skeletal integrity. Data are lacking in male runners. OBJECTIVE: To determine whether male runners at risk for energy deficit have impaired bone mineral density (BMD), microarchitecture, and estimated strength. DESIGN: Cross-sectional. SETTING: Clinical research center. PARTICIPANTS: 39 men (20 runners, 19 controls), ages 16-30 years. MAIN OUTCOME MEASURES: Areal BMD (dual-energy x-ray absorptiometry); tibia and radius volumetric BMD and microarchitecture (high-resolution peripheral quantitative computed tomography); failure load (microfinite element analysis); serum testosterone, estradiol, leptin; energy availability. RESULTS: Mean age (24.5 ± 3.8 y), lean mass, testosterone, and estradiol levels were similar; body mass index, percent fat mass, leptin, and lumbar spine BMD Z-score (-1.4 ± 0.8 vs -0.8 ± 0.8) lower (P < .05); and calcium intake and running mileage higher (P ≤ .01) in runners vs controls. Runners with EA

Mental Health of Caregivers of Children with Medical Complexity During COVID-19.

OBJECTIVE: The purpose of this study is to investigate the relationship between mental health and financial burden among caregivers of children with medical complexity (CMC) during the COVID-19 pandemic. METHODS: We conducted a cross-sectional survey on the mental health and financial burden of caregivers of CMC from April 2020 to April 2021. The study sample included 70 caregivers. We analyzed the association between caregiver mental health and caregiver demographics and child characteristics through bivariate linear regressions. We then used multivariate linear regression to assess the association between caregiver mental health and caregiver financial burden adjusting for significant covariates from our bivariate analysis. RESULTS: Caregivers reported lower mental health scores (56.2) and higher financial burden scores (15.5) than reference population means: (72.6; SD 20.2) and (10.4; SD 2.2), respectively. Financial burden [-3.4; p = 0.0003; CI: -5.1 to -1.6] and child age [-0.1; p = 0.02; CI: 0.2-1.8] were significantly associated with caregiver mental health in our bivariate analysis. In our multivariate analysis, caregivers with an increased financial burden had lower mental health scores [-3.0; p = 0.002; CI: -4.8 to -1.2]. CONCLUSION: Caregivers of children with medically complex conditions experienced more mental health symptoms and greater financial burdens than normative samples during the COVID-19 pandemic. Parents with a greater financial burden also tend to have more mental health issues. Eligibility for financial assistance should include financial burden and income when providing help to families in this population. Local and national stakeholders should consider the provision of financial help in their quest to improve the mental health of caregivers.

Factors That Influence Physical Activity in Individuals With Down Syndrome: Perspectives of Guardians and Health Professionals.

Identifying factors that influence physical activity (PA) among individuals with Down syndrome is essential for PA promotion. Insight can be gained from guardians and health professionals. The purpose of this study was to explore the perspectives of guardians and health professionals on facilitators and barriers of PA in individuals with Down syndrome. Interviews were conducted with 11 guardians (five mothers, four fathers, and two legal guardians) and 11 professionals (four PA specialists, three physical therapists, and four occupational therapists). Grounded theory was applied. Barriers and facilitators fit the levels of the ecological model of health behavior: (a) intrapersonal (perceived rewards), (b) interpersonal (interaction), (c) community (availability of programs), (d) organizational (school systems), and (e) policy (education). Guardians and professionals agreed on the importance of enjoyment, interaction, and programs to promote PA. Differences between groups were identified at the organizational and policy levels. PA in persons with Down syndrome is influenced by interactions between individual and environmental factors.

Cardiometabolic profiles in children and adults with overweight and obesity and down syndrome.

Individuals with Down syndrome (DS) are at increased risk for being overweight/obese, but the associated cardiometabolic risk (CR) is not clear. Cross-sectional anthropometric and clinical laboratory data from a multi-site, international cohort of individuals with DS were analyzed to determine cardiometabolic risk by reporting observed distributions of cardiometabolic biomarkers in overweight/obese individuals with DS throughout the lifespan. Descriptive statistics and regression analyses by age categories determined the distributive percentiles for cardiometabolic biomarkers and tested for adiposity as a predictor of CR. Across seven DS clinics, data were collected on 240 patients between the ages of 3 and 63 years, with one quarter overweight and three quarters obese among children and nearly all adults being obese. In children and adults, most cardiometabolic biomarker profiles showed distributive values within normal ranges. Blood lipids were positively associated with body mass index (BMI) in children (high density lipid-cholesterol, p = 0.01; low density lipid-cholesterol, p = 0.02). Levels of hs-CRP were elevated in both children and adults, with BMI positively associated with hs-CRP in adults with DS (p = 0.04). Liver enzyme values were positively associated with BMI in children and adults. The data suggest that in contrast to the general population, in individuals with Down syndrome, being overweight and obese does not appear to confer a significantly increased risk for cardiometabolic disease by biomarker profile. Individuals with DS who are overweight/obese appear to have unique cardiometabolic profiles unrelated to adiposity, notable for increased hs-CRP and normal HA1c levels.

Best practices to reduce COVID-19 in group homes for individuals with serious mental illness and intellectual and developmental disabilities: Protocol for a hybrid type 1 effectiveness-implementation cluster randomized trial.

BACKGROUND: People with serious mental illness (SMI) and intellectual disabilities and/or developmental disabilities (ID/DD) living in group homes (GHs) and residential staff are at higher risk for COVID-19 infection, hospitalization, and death compared with the general population. METHODS: We describe a hybrid type 1 effectiveness-implementation cluster randomized trial to assess evidence-based infection prevention practices to prevent COVID-19 for residents with SMI or ID/DD and the staff in GHs. The trial will use a cluster randomized design in 400 state-funded GHs in Massachusetts for adults with SMI or ID/DD to compare effectiveness and implementation of "Tailored Best Practices" (TBP) consisting of evidence-based COVID-19 infection prevention practices adapted for residents with SMI and ID/DD and GH staff; to "General Best Practices" (GBP), consisting of required standard of care reflecting state and federal standard general guidelines for COVID-19 prevention in GHs. External (i.e., community-based research staff) and internal (i.e., GH staff leadership) personnel will facilitate implementation of TBP. The primary effectiveness outcome is incident SARS-CoV-2 infection and secondary effectiveness outcomes include COVID-19-related hospitalizations and mortality in GHs. The primary implementation outcomes are fidelity to TBP and rates of COVID-19 vaccination. Secondary implementation outcomes are adoption, adaptation, reach, and maintenance. Outcomes will be assessed at baseline, 3-, 6-, 9-, 12-, and 15-months post-randomization. CONCLUSIONS: This study will advance knowledge on comparative effectiveness and implementation of two different strategies to prevent COVID-19-related infection, morbidity, and mortality and promote fidelity and adoption of these interventions in high-risk GHs for residents with SMI or ID/DD and staff. CLINICAL TRIAL REGISTRATION NUMBER: NCT04726371.

Unexplained regression in Down syndrome: Management of 51 patients in an international patient database.

Research to guide clinicians in the management of the devastating regression which can affect adolescents and young adults with Down syndrome is limited. A multi-site, international, longitudinal cohort of individuals with a clinical diagnosis of Unexplained Regression in Down syndrome (URDS) was collated through seven Down syndrome clinics. Tiered medical evaluation, a 28-item core symptom list, and interim management are described naturalistically. Improvement-defined by the percentage of baseline function on a Parent-reported Functional Score, overall improvement in symptoms on a Clinician-administered Functional Assessment, or report of management type being associated with improvement-was analyzed. Improvement rates using ECT, IVIG, and others were compared. Across seven clinics, 51 patients with URDS had regression at age 17.6 years, on average, and showed an average 14.1 out of 28 symptoms. Longitudinal improvement in function was achieved in many patients and the medical management, types of treatment, and their impact on function are described. Management with intravenous immunoglobulin (IVIG) was significantly associated with higher rate of improvement in symptoms at the next visit (p = 0.001). Our longitudinal data demonstrates that URDS is treatable, with various forms of clinical management and has a variable course. The data suggests that IVIG may be an effective treatment in some individuals. Our description of the management approaches used in this cohort lays the groundwork for future research, such as development of standardized objective outcome measure and creation of a clinical practice guideline for URDS.

Brief report: Caregiver perceived physical activity preferences of adults with Down syndrome.

BACKGROUND: Adults with Down syndrome commonly have low levels of physical activity and face social barriers to engaging in physical activity, including boredom and companionship concerns. Adults with Down syndrome are at increased risk for several co-occurring medial conditions known to benefit from physical activity, including obesity and dementia. METHOD: This study surveyed 140 caregivers of adults with Down syndrome to determine the physical activity preferences of their adult with Down syndrome. RESULTS: Dancing was the most frequently caregiver-reported physical activity preference for adults with Down syndrome, followed by walking and active video gaming. Rowing, using an elliptical machine, and jogging were the least preferred activities. Most caregivers reported that their adult with Down syndrome has a companion available for physical activity. CONCLUSION: Promoting dance in adults with Down syndrome, a caregiver-reported preferred form of physical activity, may help improve physical activity levels and decrease sedentary behaviours in this population.

Association of Neighborhood Characteristics With Pediatric Asthma.

OBJECTIVE: To examine associations between neighborhood characteristics and asthma prevalence and severity among low-income children in a large nationally representative sample. METHODS: Data source: 2018 National Survey of Children's Health, limited to low-income children, ages 0-17 years. We grouped parent responses about neighborhood characteristics into 5 scores: neighborhood support, safety, resources and quality, and a total score. Logistic regression compared rates and severity of asthma by neighborhood scores, adjusting for age, sex, race, and income. RESULTS: Of 8,653 low-income children, those living in neighborhoods with better total neighborhood scores were significantly less likely to have parent-reported asthma; OR = 0.9, 95% CI: 0.8-1.0; P = .02, with similar findings for children living in neighborhoods with higher support, safety, and quality scores. We found no associations between neighborhood scores and asthma severity in this population. CONCLUSIONS: Favorable neighborhoods are associated with lower parent-reported asthma prevalence in low-income children but not asthma severity. These data may support providers and policy makers interested in child asthma in addressing neighborhood improvement.

Weight management recommendations for youth with Down syndrome: Expert recommendations.

Youth with Down syndrome (DS) have a higher prevalence of overweight and obesity compared to the general youth population. Due to physiological and cognitive differences observed in youth with DS, weight management recommendations developed for the general population, may not be suitable for youth with DS. However, there are no recent recommendations for weight management in youth with DS. A workgroup of clinicians and researchers with extensive experience working with youth with DS came together to give clinicians and families guidance for weight management in youth with DS. Recommendations were developed by the workgroup via a methodical, deliberative process. After the initial development of the recommendations, they were shared with an expert review panel and caregivers who rated the strength of the recommendation and strength of the evidence. The workgroup moved forward the recommendations which the review panels rated as strong. Eight recommendations were developed which focused on screening for overweight and obesity, screening for health conditions that may impact dietary intake and physical activity, screening for feeding difficulties, setting appropriate recommendations for dietary intake and physical activity, and well as prevention and treatment of overweight and obesity using evidence-based strategies. These recommendations can be implemented by clinicians working with youth with Down syndrome as well as the family, school, and other relevant entities.

Emergency Department Utilization of Adolescents and Young Adults with Autism Spectrum Disorder.

This study examined emergency department (ED) utilization by adolescents and young adults, 12-30 years of age (AYA) with autism spectrum disorder (ASD) using the 2016 Healthcare Cost and Utilization Project/National Emergency Department Sample (HCUP/NEDS). We investigated the principal reason for an ED visit, presence of an ambulatory care sensitive condition (ACSC), and likelihood of hospital admission following ED encounter in ASD and Non-ASD cohorts. The ASD cohort had a higher proportion of ED visits for ACSC diagnoses as compared to the Non-ASD cohort. In addition, the likelihood of admission following an ED visit in the ASD cohort was 3.7 times greater than in the Non-ASD cohort.

Opportunities, barriers, and recommendations in down syndrome research.

BACKGROUND: Recent advances in medical care have increased life expectancy and improved the quality of life for people with Down syndrome (DS). These advances are the result of both pre-clinical and clinical research but much about DS is still poorly understood. In 2020, the NIH announced their plan to update their DS research plan and requested input from the scientific and advocacy community. OBJECTIVE: The National Down Syndrome Society (NDSS) and the LuMind IDSC Foundation worked together with scientific and medical experts to develop recommendations for the NIH research plan. METHODS: NDSS and LuMind IDSC assembled over 50 experts across multiple disciplines and organized them in eleven working groups focused on specific issues for people with DS. RESULTS: This review article summarizes the research gaps and recommendations that have the potential to improve the health and quality of life for people with DS within the next decade. CONCLUSIONS: This review highlights many of the scientific gaps that exist in DS research. Based on these gaps, a multidisciplinary group of DS experts has made recommendations to advance DS research. This paper may also aid policymakers and the DS community to build a comprehensive national DS research strategy.

Piloting the use of global health measures in a Down syndrome clinic.

PURPOSE: People with Down syndrome (DS) have a unique medical profile which may impact views of health. We aimed to explore the use of global health measures in DS. METHODS: Prospective survey in the Mass General Hospital Down Syndrome Program (MGH DSP) from December 2018 to July 2019 with Patient Reported Outcomes Measurement Information System (PROMIS)® instruments of global health. Analyses included use of scoring manuals, descriptive statistics and dependent samples t test. RESULTS: Seventeen adolescents, 48 adults with DS and 88 caregivers returned surveys; 137 were complete. Incomplete responses and notes showed limitations of the instruments in this population. Global health T-scores did not differ from the available comparative standardized scores to these measures from PROMIS® reference population (p > 0.05). CONCLUSIONS: In the MGH DSP, pilot global health instruments were completed by some adults with DS and caregivers, with some limitations and scores similar to the PROMIS® reference population.

Transition to virtual clinic: Experience in a multidisciplinary clinic for Down syndrome.

The COVID-19 pandemic necessitated a rapid transition from in-person office visits to virtual visits in the Down syndrome specialty program at Massachusetts General Hospital (MGH DSP). We describe the clinic transition to virtual visits in April 2020 and reflect on our six-month experience in virtual visits. Clinic metrics were tracked. Electronic survey responses were collected from caregivers attending virtual visits. Input from the MGH DSP team was collected. From April to September 2020, we maintained patient volume (45 visits per month) and overall satisfaction score (6.7 out of 7) following a sudden, unanticipated transition to virtual visits. Survey of 17 caregivers attending virtual visits found that most were equipped with technology, had access to a private location, and most were able to access visit without any limitations. Caregivers appreciated the convenience of virtual visits but sometimes missed the personal connection of an in-person visit. Overall, though, virtual visits were frequently viewed as no different than office visits. Team members identified benefits and challenges of virtual visits, as well as lessons learned from this transition. We were able to maintain multidisciplinary, specialty care with optimal caregiver feedback and sustained number of patient visits.

Physical activity patterns in adults with Down Syndrome.

BACKGROUND: Individuals with Down syndrome (DS) are less physically active than the general population, but limited data on objective physical activity patterns in adults with DS are available. METHODS: Free-living physical activity was measured by waist-worn accelerometry in adults with DS from 2018 to 2020. Data were analysed using descriptive statistics, bivariate and regression analyses. RESULTS: Fifty-two subjects provided valid accelerometer data, with 46% male and a majority (75%) overweight/obese. Median (± standard deviation) daily sedentary time was 393.5 ± 216.6 min, light activity was 150.7 ± 85.5 min, moderate activity was 6.3 ± 13.5 min, and vigorous activity was 0 ± 9.8 min. Subjects had 10.3 ± 4.8 sedentary bouts per day lasting on average 30.7 ± 62.0 min. Median daily step count was 3,050 ± 1,988. Adults living alone had more steps and light physical activity in adjusted analyses. CONCLUSION: Adults with DS engage in little health-enhancing physical activity and do not meet current physical activity recommendations in the United States.