Pilot evaluation of a dance-based physical activity program for adults with Down syndrome

Abstract

Introduction:

Adults with Down syndrome (DS) face barriers to traditional exercise modalities due in part to a lack of interest or enjoyment, desire for social connectedness during exercise, and difficulty completing traditional exercise movements because of physical limitations. Dance provides a potential alternative to conventional exercise and may address some of these barriers. The purpose of this study was to assess the feasibility, usability, safety, and energy expenditure of a 12-week dance-based exercise intervention in adults with DS.

Methods:

Participants completed a 12-week remotely-delivered, dance-based exercise intervention. Classes were 35 minutes each and held twice weekly. Feasibility was assessed via retention and attendance. Usability was assessed via a satisfaction survey, with all measures assessed on a 5-point Likert scale, and safety was based on the number of adverse events. Energy expenditure was assessed using indirect calorimetry.

Results:

Twenty participants (mean age 28.3 years, 70% female) enrolled in the intervention, and study retention was 100%. Participants attended 21.7 out of 24 sessions (90.4%). Satisfaction scores were high, with overall satisfaction rated as 4.8±0.4 (100% rating 4 or above). There were no intervention-related adverse events reported. Sixteen participants completed an assessment of energy expenditure, with the average metabolic equivalents (METs) of 4.8 ± 1.0, exceeding the threshold for moderate intensity (3.0 METs).

Conclusion:

Intervention retention, attendance, and satisfaction were all high and energy expenditure met the threshold for moderate intensity. Remotely-delivered dance may represent a feasible and effective exercise modality for adults with DS to increase overall exercise participation and should be tested in a larger intervention.

Introduction

Participation in moderate-to-vigorous physical activity (MVPA) is critical for overall health, with low levels of MVPA associated with increased risk for metabolic syndrome(1, 2), cardiovascular disease(3, 4), Alzheimer’s disease(5, 6), and overall mortality risk(3). Despite the known benefits of regular MVPA, people with Down syndrome (DS), or Trisomy 21, report lower levels of physical activity when compared to their peers with other intellectual disabilities(7) or without disabilities(8, 9). One study assessing physical activity patterns of people with intellectual disabilities (n=388, 58% with DS) found that with adults with DS average of between 11–17 minutes a day of MVPA, with only 17.7% meeting the guideline of 150 minutes per week of MVPA(10) as recommended by the Physical Activity Guidelines for Americans(11). This estimate is lower than that of typically developed adults, suggesting ~52% of typically developed adults meet MVPA guidelines(12).

Adults with DS face unique barriers to participation in MVPA including disinterest or inability to participate in conventional exercise movements due to challenges with gait and/or coordination, lack of enjoyment of exercise, lack of social support, lack of transportation, and low self-efficacy for exercise (13, 14). There is a paucity of data examining strategies to improve MVPA in adults with DS, and current research focuses on these conventional exercise modalities(15–17), which may not be preferable to this population. While recent work has identified that virtual delivery of exercise programs can eliminate some barriers preventing exercise for persons with DS such as transportation barriers(17), existing programs have still not addressed barriers for persons with DS from participating in traditional exercise modalities, such as jumping, jogging, or walking, used in these programs. In adults with DS, activities perceived as difficult or boring are cited as barriers preventing exercise while exercise that included music has been cited as a facilitator(14). Identifying other ways modalities of exercise outside of what has been used traditionally may be useful for increasing MVPA in this population.

Previous research(18) by our group and others suggests that dance activities are a preferred form of exercise for adults with DS. Dance, which is characterized by rhythmic physical movements, offers the potential for social engagement, and stimulation of brain functions including attention, memory, executive function, and visuospatial processing that are commonly affected by aging and cognitive decline (19, 20), particularly in individuals with DS. However, empirical evidence to support the feasibility of a remotely-delivered group dance intervention and evaluation of the intensity and energy expenditure achieved by a dance intervention for adults with DS are currently unavailable.

The purpose of this pilot trial was to evaluate the feasibility, usability, and safety of a 12-week remotely-delivered dance-based exercise intervention for adults with DS and assess the exercise intensity of these sessions. Feasibility was assessed by average class attendance and intervention retention. Usability was assessed via participant satisfaction at the conclusion of the intervention, and safety was assessed by number of adverse events reported throughout the intervention. Exercise intensity was assessed via indirect calorimetry during a class session.

Methods

Study Overview

This project was conducted as a pilot feasibility study, consistent with Tickle-Degnen (2013)(21), to examine both the feasibility of implementing the intervention procedures and to obtain preliminary outcome data in adults with Down syndrome. Adults with DS were recruited to participate in a 12-week exercise intervention with two dance-based exercise sessions per week. Participants were recruited in two cohorts, with the goal of 10 participants per cohort. Cohorts were limited to 10 people to ensure the exercise instructor could safely observe all participants at the same time. Dance-based exercise sessions were 35-minutes in length and delivered remotely via HIPAA compliant Zoom^® sessions. This trial was conducted from July 2024-April 2025 and was approved by the Institutional Review Board at the University of Kansas Medical Center (STUDY00160748) and was registered on clinicaltrials.gov (NCT06537648). Informed consent and assent were obtained from participants and their parent/legal guardians (if applicable) prior to data collection.

Participants

Eligibility criteria for participation included having a diagnosis of DS, sufficient functional ability to communicate through spoken language, no plans to relocate outside the study area over the next 12 weeks, possession of a personal device that allowed for connectivity to the internet for participation in group video calls, and the ability to participate in MVPA. Following a successful phone screen, participants were asked to provide contact information for their primary care physician (PCP), and study staff contacted each PCP to complete a form indicating the physician’s approval for study participation and to verify eligibility criteria. Participants were excluded if they were at serious medical risk for participating (e.g., cancer, recent heart attack, stroke, pregnancy, angioplasty), were unwilling to participate in group exercise sessions or outcomes assessments or were uninterested in the program. A sample of n=20 participants was the recruitment target for this pilot trial, as it aligns with other pilot interventions assessing remotely-delivered physical activity interventions in adults with DS(17, 22, 23).

Intervention Description

Participants attended two 35-minute, group dance-based exercise sessions per week which were led by individuals experienced in delivering exercise interventions in adults with DS. Prior to leading sessions, instructors completed structured training that included observation of 10 exercise classes as a part of an exercise program offered as a community program from our research group, and teaching of one session, during which instructional fidelity was evaluated to ensure consistency with the standardized intervention protocol. Classes contained a 5-minute warm up period, 10-minute dance-based conditioning activities (i.e shuffle left and right, march to the beat of the music), a 15-minute choreography session where the instructor taught between two and four 8-counts of a pre-choreographed dance routine, and a 5-minute cool down period. All exercises and dances were modified for participants who had difficulty or were unable to complete movements as described. The intensity of the sessions progressively increased in exercise intensity from light-to-moderate (1.0–3.0 metabolic equivalents of task (METs)), to moderate-to-vigorous (≥3.0 METs) during the first four weeks of the program.

Feasibility outcomes

Intervention feasibility was evaluated via intervention attendance and retention. Attendance was assessed by calculating the average number of classes attended per person out of the 24 sessions offered. Attendance was taken by the exercise instructor at the beginning of every session. Retention was measured as the percentage of participants retained throughout the trial. This pilot trial had a goal of achieving at least 80% attendance and 80% retention to be considered successful, based on previous remotely-delivered physical activity interventions in adults with intellectual disabilities (22–24).

Usability outcomes

Usability was evaluated through a satisfaction survey administered to all participants at the end of the intervention, along with assessment of intervention safety. The survey included 19 items addressing satisfaction with program elements (e.g., class times, frequency, instructor quality) and perceived health benefits (e.g., improved endurance, strength, flexibility, mood, and physical activity). Participants rated each item on a 5-point Likert scale including verbal anchors, where 1 indicated strongly disagree and 5 indicated strongly agree. This survey was developed by the research team drawing on instruments used previously to evaluate pilot exercise studies in adults with DS(17, 23). Items were adapted to reflect specific content for this program.

Safety outcomes

Safety was assessed via the number and type of adverse events during the intervention in accordance with the National Institute on Aging guidelines (25). Participants reported adverse events weekly during group exercise sessions and at the week 12 study visit during outcome assessments.

Energy Expenditure Assessment

Energy expenditure of exercise sessions was assessed using a COSMED K5 (COSMED, Rome, Italy) indirect calorimeter during one exercise class per participant. This previously validated(26–28), lightweight (~1.5 kg) open-circuit portable indirect calorimeter measures breath-by-breath ventilation and concentration of expired oxygen and carbon dioxide. The energy expenditure sessions took place between weeks 4 and 12 of the intervention based on participant availability and were completed at participants’ homes under the supervision of laboratory staff. Data were collected in the breath-by-breath mode, retrieved using COSMED Omnia software, and aggregated in 30-s epochs. The first and last 30-s epochs were removed before calculating the mean intensity of the exercise session in both kcals/min and METs. METs were based on a resting metabolic rate of 2.3 mL/kg/min observed in a previous study by our group in a sample of 25 young adults with DS(29). The goal of these sessions was to achieve ≥3.0 METs during the exercise sessions to be considered a successful intervention(30).

Statistical Analysis

Data are presented as mean ± standard deviation for continuous measures and frequency (percentage) for categorical variables. Intervention adherence is described as the average percentage of classes attended across the 12-week intervention and attendance is described as the percentage of people retained in the study. Satisfaction data are presented as mean ± standard deviation. Boxplots were used to display METs from the energy expenditure assessments for each participant, averaged for each 30-second epoch. The data processing and visualization was conducted using R (v4.3.2).

Results

Figure 1 depicts participant flow through the pilot trial and Table 1 presents participant characteristics at the baseline assessment of the intervention. On average, participants were 28.3 ± 8.0 years old, with 70.0% of participants being female (n=14), 80.0% identifying as racially white, and 10% identifying as Hispanic or Latino. Thirteen participants reported having congenital heart disease (65.0%), with 9 of these participants receiving a corrective cardiac surgery (69.2%), and 15% (n=3) reported having asthma. The majority (90.0%) of participants lived at home with a parent or guardian, with 13 participants having mild level of intellectual disability (65.0%) and seven reporting a moderate level of intellectual disability (35.0%) as reported by their parent or guardian.

Figure 1.

Flow Diagram showing participant recruitment and retention

Table 1.

Participant characteristics of adults with Down syndrome enrolled in the trial

Characteristic	Overall N = 201	Female N = 141	Male N = 61
Age (years)	28.3 ± 8.0	28.6 ± 7.5	27.5 ± 9.9
Level of Support Needs
Mild	13 (65.0%)	10 (71.4%)	3 (50.0%)
Moderate	7 (35.0%)	4 (28.6%)	3 (50.0%)
Race
White	16 (80.0%)	11 (78.6%)	5 (83.3%)
Black or African American	1 (5.0%)	1 (7.1%)	0 (0%)
Asian	1 (5.0%)	0 (0%)	1 (16.7%)
American Indian or Alaska Native	0 (0%)	0 (0%)	0 (0%)
Native Hawaiian or Other Pacific Islander	0 (0%)	0 (0%)	0 (0%)
Two or More Races	2 (10.0%)	2 (14.3%)	0 (0%)
Hispanic or Latino	2 (10.0%)	0 (0%)	2 (33.3%)
BMI, kg/m2	32.1 ± 8.0	33.3 ± 8.5	29.6 ± 6.5
Co-occurring Conditions
Congenital Heart Disease	13 (65.0%)	10 (71.4%)	3 (50.0%)
Hypothyroidism	3 (30.0%)	5 (35.7%)	1 (16.7%)
Asthma	3 (15.0%)	2 (14.3%)	1 (16.7%)
Received Surgery for Congenital Heart Disease	9 (69.0%)	8 (80.0%)	1 (33.3%)
Living Situation
With Parent or Guardian	18 (90.0%)	12 (85.7%)	6 (100%)
Alone	1 (5.0%)	1 (7.1%)	0 (0%)
Group Home	1 (5.0%)	1 (7.1%)	0 (0%)

¹Mean ± SD; n (%)

Abbreviations: BMI, body mass index; kg, kilogram; m, meter

Feasibility outcomes

All 20 participants who started the intervention completed the study, representing a retention rate of 100%. On average, participants attended 21.7 out of the 24 sessions, indicating an attendance rate of 90.4%. The most common reasons given for failing to attend classes were travel for vacations and scheduling conflicts with school or work.

Usability outcomes

All 20 participants completed the satisfaction survey. Figure 2 presents these results by question including average scores and standard errors. Overall, satisfaction scores were high with average scores ranging from 4.9±0.4 (“I like the Zoom exercise instructors”) to 3.7±0.9 (“I think the Zoom exercise classes are helping me catch and grab things easier”), with only one item being rated below a 4.0. Notably, for the question “I like the Zoom exercise classes” average score was 4.8±0.4 with 100% of participants rating this item a 4 or above on the 5-point Likert scale.

Figure 2.

Satisfaction Survey Results Presented as Mean and Standard Error

Safety outcomes

A total of 4 adverse events were reported by participants during the study. Three of these events were considered moderate and one event was considered severe, with only 1 adverse event being considered as “Possibly Related” to the intervention, which was hip pain from a previous injury. All other events were considered “Not Related” to the intervention and none of the events were considered “Serious Adverse Events”.

Energy Expenditure Outcomes

Sixteen of the 20 participants were able to complete the assessment of energy expenditure successfully. Two participants were unable to be scheduled due to scheduling conflicts, and two participants attempted to complete the assessment but were unable to wear the mask for the duration of the protocol. Figure 3 shows each participant’s unadjusted METs averaged over 30-s epochs while participants were completing the energy expenditure assessment by age (>25 years and ≤25 years). The horizontal dashed lines are drawn to represent moderate (3 METs) and vigorous (6 METs) intensity. Overall average METs after adjusting for a RMR of 2.3(29) was 4.8±1.0 METs (Age >25: 4.4±1.6; Age ≤25: 5.3±1.6 METs), with a range of 2.9–6.6 METs, and the average percentage of class time spent in MVPA (as defined as ≥3.0 METs)(30) was 90.1% (~31.5 minutes) with a range of 31.3%−100%. Only 1 person did not meet the threshold for MVPA based on MET values.

Figure 3. Median METs per person.

Note: MET values in this figure were not adjusted for the RMR of persons with DS. Each box represents an individual participant, with dots representing 30-sec epochs.

Abbreviations: METs, metabolic equivalent of task

Discussion

Adults with DS typically report low levels of MVPA participation and face unique barriers to engagement in traditional exercise modalities and programs. The purpose of this study was to evaluate the usability and feasibility of a 12-week dance-based exercise intervention for adults with DS, as well as to assess the exercise intensity of these sessions. Retention, attendance, and safety outcomes from this pilot trial indicate that a remotely-delivered dance-based exercise intervention is safe for persons with DS and may provide a feasible alternative to traditional exercise modalities. Further, the satisfaction data indicated a high level of enjoyment of the program, and energy expenditure outcomes showed that the classes were above the threshold for moderate intensity activity.

Results from this study align with other remotely-delivered interventions for increasing MVPA in adults with DS. One pilot trial evaluating remotely-delivered intervention using traditional exercise modalities yielded 89.5% average attendance with 27.7 minutes of the 30-minute sessions spent in MVPA measured via Fitbit heart rate(17), which is in line with findings from this dance-based intervention. This indicates that dance may represent a reasonable alternative to traditional exercise, which may be preferable to populations with DS. Other non-traditional exercise modalities have shown promise for increasing MVPA in adults with DS. One such study evaluated a 12-week exergaming intervention in adults with DS which resulted in 90% of participants’ adherence to gameplay goals and an average of 3.4 METs as measured by indirect calorimetry, further supporting the potential of non-traditional exercise for increasing MVPA in adults with DS(22). Future work should compare dance to other modalities of exercise for increasing MVPA in this population.

The use of dance interventions in persons with DS has previously shown effectiveness for improving other aspects of physical functioning including dynamic balance(31, 32), postural stability(33), and gross motor function(32, 34). Research has consistently supported the association between each of these measures and MVPA participation in adults(35, 36). Results from the present study indicate that dance reaches the threshold for MVPA, adding to the literature supporting dance as an alternative to traditional exercise in persons with DS.

There were no serious adverse events reported during the trial, and only 1 mild event was considered “Possibly Related” to the intervention, which supports that this intervention was safe for this population. Approximately 80% of participants reported a co-occurring condition which may increase safety concerns for exercise such as congenital heart disease (CHD) or asthma, but all participants with these conditions were able to participate safely in the intervention. Persons with CHD(37) and asthma(38) report lower levels of physical activity than those without, suggesting that individuals with co-occurring conditions could miss out on the health benefits of regular MVPA participation. These findings indicate that even for those with these conditions, this intervention was safe and may help promote MVPA participation. Given the promising results of this pilot work, future research should evaluate the effect of a longer-term dance intervention on changes in device-assessed MVPA and measures of physical functioning and fitness in adults with DS, including those with co-occurring conditions.

Results should be interpreted considering several limitations. The sample size was small (n = 20) and the program duration short (12 weeks), which limits generalizability and makes it unclear whether usability and outcomes would be sustained over longer interventions. The sample was also relatively young (mean age 28.3 years), and none required assistive devices for ambulation, potentially limiting applicability to older adults or those with additional mobility impairments. In addition, the absence of a comparison group using traditional exercise modalities weakens the strength of the findings. Future research should test dance-based interventions in larger, more diverse DS populations over longer periods and directly compare them to traditional exercise programs. A strength of this study is the use of indirect calorimetry to assess exercise intensity. However, participants only completed the assessment during a single exercise session. This limited measurement frequency may introduce bias, as participants might alter their effort when being observed or monitored potentially resulting in higher energy expenditure estimates compared to their typical performance across sessions (39). Future studies should include multiple assessments across sessions to capture a more representative estimate of usual energy expenditure.

Practical Applications

This pilot trial demonstrated that remotely delivered, dance-based exercise is a feasible and safe way to promote moderate-intensity physical activity in adults with Down syndrome. These findings suggest that enjoyable, music-based movement programs could offer an accessible approach to increasing physical activity participation in this population.

Data Availability Statement:

The datasets generated and/or analyzed during the current study are available from the corresponding author on reasonable request.