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.

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 .

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.

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.

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.

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.

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.

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.

Unexplained regression in Down syndrome: 35 cases from an international Down syndrome database.

PURPOSE: An entity of regression in Down syndrome (DS) exists that affects adolescents and young adults and differs from autism spectrum disorder and Alzheimer disease. METHODS: Since 2017, an international consortium of DS clinics assembled a database of patients with unexplained regression and age- and sex-matched controls. Standardized data on clinical symptoms and tiered medical evaluations were collected. Elements of the proposed definition of unexplained regression in DS were analyzed by paired comparisons between regression cases and matched controls. RESULTS: We identified 35 patients with DS and unexplained regression, with a mean age at regression of 17.5 years. Diagnostic features differed substantially between regression cases and matched controls (p < 0.001 for all but externalizing behaviors). Patients with regression had four times as many mental health concerns (p < 0.001), six times as many stressors (p < 0.001), and seven times as many depressive symptoms (p < 0.001). Tiered medical evaluation most often identified abnormalities in vitamin D 25-OH levels, polysomnograms, thyroid peroxidase antibodies, and celiac screens. Analysis of the subset of patients with nondiagnostic medical evaluations reinforced the proposed definition. CONCLUSIONS: Our case-control evidence supports a proposed definition of unexplained regression in Down syndrome. Establishing this clinical definition supports future research and investigation of an underlying mechanism.

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.

Spatial analysis of crime incidence and adolescent physical activity.

OBJECTIVES: Adolescents do not achieve recommended levels of physical activity. Crime is believed to be a barrier to physical activity among youth, but findings are inconsistent. This study compares the spatial distribution of crime incidences and moderate-to-vigorous physical activity (MVPA) among adolescents in Massachusetts between 2011 and 2012, and examines the correlation between crime and MVPA. METHODS: Eighty adolescents provided objective physical activity (accelerometer) and location (Global Positioning Systems) data. Crime report data were obtained from the city police department. Data were mapped using geographic information systems, and crime and MVPA densities were calculated using kernel density estimations. Spearman's correlation tested for associations between crime and MVPA. RESULTS: Overall, 1694 reported crimes and 16,702min of MVPA were included in analyses. A strong positive correlation was present between crime and adolescent MVPA (ρ=0.72, p<0.0001). Crime remained positively associated with MVPA in locations falling within the lowest quartile (ρ=0.43, p<0.0001) and highest quartile (ρ=0.32, p<0.0001) of crime density. CONCLUSIONS: This study found a strong positive association between crime and adolescent MVPA, despite research suggesting the opposite relationship. This counterintuitive finding may be explained by the logic of a common destination: neighborhood spaces which are desirable destinations and promote physical activity may likewise attract crime.

Adolescents' use of the built environment for physical activity.

BACKGROUND: Physical activity is a health-enhancing behavior, but few adolescents achieve the recommended levels of moderate-to-vigorous physical activity. Understanding how adolescents use different built environment spaces for physical activity and activity varies by location could help in designing effective interventions to promote moderate-to-vigorous physical activity. The objective of this study was to describe the locations where adolescents engage in physical activity and compare traditional intensity-based measures with continuous activity when describing built environment use patterns among adolescents. METHODS: Eighty adolescents aged 11-14 years recruited from community health and recreation centers. Adolescents wore accelerometers (Actigraph GT3X) and global positioning system receivers (QStarz BT-Q1000XT) for two separate weeks to record their physical activity levels and locations. Accelerometer data provided a continuous measure of physical activity and intensity-based measures (sedentary time, moderate-to-vigorous physical activity). Physical activity was mapped by land-use classification (home, school, park, playground, streets & sidewalks, other) using geographic information systems and this location-based activity was assessed for both continuous and intensity-based physical activity derived from mixed-effects models which accounted for repeated measures and clustering effects within person, date, school, and town. RESULTS: Mean daily moderate-to-vigorous physical activity was 22 minutes, mean sedentary time was 134 minutes. Moderate-to-vigorous physical activity occurred in bouts lasting up to 15 minutes. Compared to being at home, being at school, on the streets and sidewalks, in parks, and playgrounds were all associated with greater odds of being in moderate-to-vigorous physical activity and achieving higher overall activity levels. Playground use was associated with the highest physical activity level (ß = 172 activity counts per minute, SE = 4, p < 0.0001) and greatest odds of being in moderate-to-vigorous physical activity (odds ratio 8.3, 95% confidence interval 4.8-14.2). CONCLUSION: Adolescents were more likely to engage in physical activity, and achieved their highest physical activity levels, when using built environments located outdoors. Novel objective methods for determining physical activity can provide insight into adolescents' spatial physical activity patterns, which could help guide physical activity interventions. Promoting zoning and health policies that encourage the design and regular use of outdoor spaces may offer another promising opportunity for increasing adolescent physical activity.

How do changes to the built environment influence walking behaviors? A longitudinal study within a university campus in Hong Kong.

BACKGROUND: Previous studies testing the association between the built environment and walking behavior have been largely cross-sectional and have yielded mixed results. This study reports on a natural experiment in which changes to the built environment were implemented at a university campus in Hong Kong. Longitudinal data on walking behaviors were collected using surveys, one before and one after changes to the built environment, to test the influence of changes to the built environment on walking behavior. METHODS: Built environment data are from a university campus in Hong Kong, and include land use, campus bus services, pedestrian network, and population density data collected from campus maps, the university developmental office, and field surveys. Walking behavior data were collected at baseline in March 2012 (n = 198) and after changes to the built environment from the same cohort of subjects in December 2012 (n = 169) using a walking diary. Geographic information systems (GIS) was used to map walking routes and built environment variables, and compare each subject's walking behaviors and built environment exposure before and after the changes to the built environment. Walking behavior outcomes were changes in: i) walking distance, ii) destination-oriented walking, and iii) walked altitude range. Multivariable linear regression models were used to test for associations between changes to the built environment and changes in walking behaviors. RESULTS: Greater pedestrian network connectivity predicted longer walking distances and an increased likelihood of walking as a means of transportation. The increased use of recreational (vs. work) buildings, largely located at mid-range altitudes, as well as increased population density predicted greater walking distances.Having more bus services and a greater population density encouraged people to increase their walked altitude range. CONCLUSIONS: In this longitudinal study, changes to the built environment were associated with changes in walking behaviors. Use of GIS combined with walking diaries presents a practical method for mapping and measuring changes in the built environment and walking behaviors, respectively. Additional longitudinal studies can help clarify the relationships between the built environment and walking behaviors identified in this natural experiment.

ATTRIBUTES OF FORM IN THE BUILT ENVIRONMENT THAT INFLUENCE PERCEIVED WALKABILITY.

A recent focus of design and building regulations, including form-based codes and the Leadership in Energy and Environmental Design for Neighborhood Development rating system, has been on promoting pedestrian activity. This study assessed perceptions of walkability for residential and commercial streetscapes with different design attributes in order to inform form-based regulations and codes that aim to impact walkability. We scored 424 images on four design attributes purported to influence walkability: variation in building height, variation in building plane, presence of ground-floor windows, and presence of a street focal point. We then presented the images to 45 adults, who were asked to rate the images for walkability. The results showed that perceived walkability varied according to the degree to which a particular design attribute was present, with the presence of ground-floor windows and a street focal point most consistently associated with a space's perceived walkability. Understanding if and which design attributes are most related to walkability could allow planners and developers to focus on the most salient built-environment features influencing physical activity, as well as provide empirical scientific evidence for form-based regulations and zoning codes aimed at impacting walkabilit.

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.

Comparing self-identified and census-defined neighborhoods among adolescents using GPS and accelerometer.

BACKGROUND: Numerous definitions of neighborhood exist, yet few studies have considered youth's perceptions of neighborhood boundaries. This study compared youth-identified neighborhood (YIN) boundaries to census-defined neighborhood (CDN) boundaries, and determined how the amount of time spent and moderate-to-vigorous physical activity (MVPA) levels compared within both boundary types. METHODS: Adolescents aged 11-14 years were asked to identify their neighborhood boundaries using a map. Objective location and physical activity data collected using Global Positioning System (GPS) devices and accelerometers were used to calculate the amount of time spent and MVPA within youth-identified and census-defined neighborhood boundaries. Paired bivariate analyses compared mean area (meters squared), percent of total time, daily MVPA (minutes), time density (minutes/m2) and MVPA density (minutes/m2) for both boundary types. RESULTS: Youth-identified neighborhoods (1,821,705 m²) and census-defined neighborhoods (1,277,181 m²) were not significantly different in area, p = 0.30. However, subjects spent more time in youth-identified neighborhoods (80.3%) than census-defined neighborhoods (58.4%), p < 0.0001, and engaged in more daily MVPA within youth-identified neighborhoods (14.7 minutes) than census-defined neighborhoods (9.5 minutes), p < 0.0001. After adjusting for boundary area, MVPA density (minutes of MVPA per squared meter of area) remained significantly greater for youth-identified neighborhoods (2.4 × 10-4 minutes/m²) than census-defined neighborhoods (1.4 × 10-4 minutes/m²), p = 0.02. CONCLUSIONS: Adolescents perceive their neighborhoods to be similar in size to census-defined neighborhoods. However, youth-identified neighborhoods better capture the locations in which adolescents spend time and engage in physical activity. Asking adolescents to identify their neighborhood boundaries is a feasible and valuable method for identifying the spaces that adolescents are exposed to and use to be physically active.

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.

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.