Suchergebnisse

AbstractBackgroundAdults 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.MethodThis study surveyed 140 caregivers of adults with Down syndrome to determine the physical activity preferences of their adult with Down syndrome.ResultsDancing 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.ConclusionPromoting 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.

AbstractBackgroundIndividuals 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.MethodsFree‐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.ResultsFifty‐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.ConclusionAdults with DS engage in little health‐enhancing physical activity and do not meet current physical activity recommendations in the United States.

AbstractPurposePeople 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.MethodsProspective 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.ResultsSeventeen 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).ConclusionsIn 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.

AbstractBackgroundDown syndrome is the most common liveborn genetic condition. However, there are no surveys measuring societal services and supports for people with Down syndrome. We developed a questionnaire so that initiatives could be targeted towards countries most in need of assistance.MethodWe formed a geographically diverse group of physicians, family members of people with Down syndrome, and members of Down syndrome not‐for‐profit organisations to create a survey of societal services and supports. We used a modified Delphi method and disseminated the survey to Down syndrome non‐profit organisations worldwide.ResultsOur survey consists of 61 items categorised within five domains: Education, Community Inclusion, Independence, Healthcare, and Social and Policy Issues.ConclusionsWe developed a survey to measure societal services and supports available to people with Down syndrome as perceived by organisational leaders. Our methods might serve as a blueprint for other populations of people with intellectual and developmental disabilities.