Remote Exercise for Adults with Down Syndrome : Translational Journal of the American College of Sports Medicine

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Original Investigation

Remote Exercise for Adults with Down Syndrome

Ptomey, Lauren T.1; Szabo, Amanda N.1; Willis, Erik A.2; Greene, J. Leon3; Danon, Jessica C.1; Washburn, Richard A.1; Forsha, Daniel E.4; Donnelly, Joseph E.1

Author Information
Translational Journal of the ACSM: April 15, 2018 - Volume 3 - Issue 8 - p 60-65
doi: 10.1249/TJX.0000000000000058

Abstract

INTRODUCTION

Participation in moderate-to-vigorous physical activity (MVPA) in the approximately 250,000 individuals in the United States diagnosed with Down syndrome (1) is much lower than their typically developed peers. It is estimated that only 9% of adults with intellectual and developmental disabilities (IDD) (2), including Down syndrome, compared with ~52% of typically developed adults (3) achieve 150 min·wk−1 of MVPA as recommend by the physical activity guidelines for Americans (4). Reports by Stanish et al. (5) and Temple et al. (6) indicated that 28% of adults with IDD “never” or “rarely” engaged in MVPA. Baseline MVPA, assessed by portable accelerometer in a sample of 150 adults with IDD who participated in an 18-month weight management trial recently competed by our group, was only 15 min·d−1 (7). Increased MVPA in individuals with IDD has been associated with decreased body weight (8), improved cardiovascular fitness (9,10), and improved muscular strength and endurance (11,12). Preliminary evidence suggests that increased MVPA may also be associated with improved cognitive function in adults with Down syndrome (13–15), which may be particularly important considering that approximately 70% of adults with Down syndrome, whose life-span is 55 to 60 yr, will develop Alzheimer's disease, with symptoms beginning in the third decade of life (16).

Adults with Down syndrome face several barriers that increase the complexity of developing interventions to increase MVPA for this group. The barriers, which make the initiation and maintenance of MVPA difficult for typically developed adults, may be amplified in adults with Down syndrome as a result of cognitive impairment, which may result in difficulty with planning, delaying rewards, taking initiative, and understanding abstract information (17). Lack of social support and an understanding of the potential benefits of increased MVPA, lack of physical skills and trained professionals for assistance, and the lack of affordable/accessible transportation to facilities to participate in MVPA represent significant barriers for adults with Down syndrome (18,19).

Most interventions that have evaluated strategies to improve initiation and maintenance of MVPA in individuals with Down syndrome have focused on adolescents rather than adults (20–22). For example, Stanish and Temple (22) reported successful attendance (~90%) at a 15-wk peer-supported exercise intervention (2 d·wk−1, 60 min), for adolescents with IDD (n = 20, age ~18 yr). Participants were provided a complementary membership to the YMCA where the intervention was conducted. However, only three participants used the facility (1–4 times) on nonprogram days. The limited research on increasing MVPA in adults with IDD is short duration, includes all intellectual disabilities and not specifically those with Down syndrome, and has been unsuccessful in increasing short-term (≤12 wk) MVPA (7,23–25). For example, Melville et al. (23) randomized 102 adults with IDD to a 2-wk consultation-led walking invention or nonintervention control. Participants in the intervention group received three consultations with a walking advisor and were encouraged to set walking goals and monitor their daily step count with a pedometer. At 12 wk, there were no significant between-group differences in steps (69.5 steps per day, P = 0.90) or the percentage of time per day spent in MVPA (1.5%, P = 0.5) both assessed using a portable accelerometer. The limited available information and the potential benefits of increased MVPA highlight the need to develop and evaluate intervention strategies to promote increased MVPA in adults with Down syndrome.

Interventions delivered using real-time video conferencing have been used to improve health and modify behaviors in typically developing adults (26–28). Other technologies such as computers and tablets have been used successfully to teach academic subjects and to improve social and daily life skills in individuals with IDD across the age spectrum (29). A recent study conducted by our group in adults with IDD indicated that 90% of adults with IDD had access to wireless Internet, either in their homes or at their day centers (30). Thus, interventions to increase MVPA, delivered via video conferencing to groups of adults with Down syndrome in their homes, represent a potentially effective approach for increasing MVPA in this group. This approach requires no travel commitment from care providers or parents, because the need for transportation to a YMCA or community center is eliminated and offers the potential for peer support and socialization, which may be important for initiation and maintenance of MVPA. However, the feasibility of at-home, group-based exercise sessions delivered using video conferencing to young adults with Down syndrome is unknown and was the focus of this pilot trial. For this study, feasibility was defined as session attendance of ≥70% and overall program attrition of <20%.

METHODS

Study Design—Overview

Adults with Down syndrome were computer randomized with equal allocation to at-home, group exercise sessions delivered by a trained health educator using video conferencing (Zoom Inc., San Jose, CA) on an iPad mini tablet computer (Apple Inc., Cupertino, CA) either 1 or 2 d·wk−1 over 12 wk. Randomization to 1 or 2 d·wk−1 allowed an assessment of the effect of session frequency on program attendance and attrition. Duration and intensity of MVPA during group sessions were assessed using Fitbit Charge HR (Fitbit Inc., San Francisco, CA) wireless activity tracker/heart rate monitor. Participants also met with the health educator weekly via FaceTime® to receive support and education designed to assist with intervention compliance. Participants were asked to complete a “homework” assignment involving physical activity each week. The study protocol was approved by the Human Subjects Committee at the University of Kansas Medical Center.

Participants

Men and women with a diagnosis of Down syndrome verified by their primary care physician were recruited through local community programs serving adults with IDD and with print and Web advertisements in the target area, that is, greater Kansas City, KS/MO. All recruitment materials included investigator contact information, that is, toll-free phone and e-mail. Questions from interested participants/guardians were addressed and initial eligibility screening was completed via phone or e-mail. Home visits were scheduled with potential participants and their legal guardian (if applicable) to explain the project, answer questions, determine eligibility, and obtain written consent or legal guardian consent and participant assent. The following inclusion criteria were applied: 1) 18- to 35-yr-old participants were not included to reduce the probability of undiagnosed dementia or Alzheimer's disease, because working with individuals with dementia or Alzheimer's disease is outside the scope of staff capabilities; 2) functional ability sufficient to understand directions and to communicate through spoken language, 3) reside in a supported living condition either at home or with no more than a total of four residents, and have a caregiver, that is, parent or staff, who agrees to serve as a study partner; 3) wireless Internet access in the home; and 4) ability to participate in MVPA verified by physician consent. Participant exclusion criteria included the following: 1) currently pregnant, or planning on becoming pregnant during the study, and 2) participation in a regular exercise program, defined as greater than 500 kcal·wk−1 of planned activity as estimated by questionnaire (31) completed by the participant with caregiver assistance.

Study Partner

Most adults with Down syndrome live with a caregiver, for example, a family member, guardian, or paid staff who assists with daily tasks such as food shopping/preparation, transportation, and paying bills. Caregivers play a potentially pivotal role in promoting MVPA for adults with Down syndrome, for example, assisting with scheduling and participation in appropriate physical activities, and providing transportation to sites to engage in MVPA (32). Thus, each participant was required to have a parent/guardian or residential support staff, who served as a study partner for the duration of the intervention. However, the role of the study partner was intentionally minimal and included attendance at the study orientation and weekly support/education sessions, and reminding participants of upcoming group exercise sessions. Study partners were not asked to participate in exercise sessions or to assist participants with weekly homework assignments.

Intervention

Orientation

Before initiating the intervention, the health educator conducted one ~60-min home visit with both participants and their study partner. During this session, the health educator oriented participants to the use of intervention equipment that was provided as part of the trial, that is, iPad mini, Fitbit Charge HR, resistance bands, mini cones, throwing scarves, and HDMI adaptors, which allowed the group video conference sessions to be displayed on a larger TV screen. Participants were also oriented to the Zoom software, which included instruction on how to use the camera, how to control the sound, and how to ensure that all other participants in the exercise sessions were visible on the screen. Basic aerobic exercises and exercises using the resistance bands were demonstrated, and time was allotted for questions and troubleshooting. Downloading of non–study-related applications or Internet browsing was restricted on all iPads. Participants returned the iPad and the HDMI adaptor to the investigators at the completion of the study. Participants were allowed to keep the Fitbit and received $25 for completing baseline testing and completing the 12-wk intervention ($50 total) as an incentive.

Exercise Sessions

Sessions of ~30 min in duration were delivered via video conferencing either one or two times per week over 12 wk to groups of 5–8 participants, each in their own home. Groups were formed on the basis of mutual time availability and were generally conducted in the late afternoon or early evening. Exercise sessions were led by a health educator who was a specialist in adapted physical education and experienced in working with adults with Down syndrome. Participants who could all be seen simultaneously on the video display were encouraged to interact with other participants and the health educator. To promote participant interaction, the health educator asked participants to select songs to accompany the session and to lead parts of the warm-up and cool-down activities. A sample video clip from a group exercise session is included in the supplemental digital content (see Video, SDC1, Clip of a group exercise session, 03:48, 31.1 MB, https://links.lww.com/TJACSM/A20).

Sessions consisted of a warm-up (~5 min), MVPA (i.e., 3–6 metabolic equivalents; ~20 min), and a cool down (~5 min). MVPA included aerobic activities such as walking/jogging in place, jogging to music, dancing, and strength-based exercises such as vertical jumps, bicep curls, and squats. Exercise sessions followed daily scripts designed to reflect weekly themes such as “bounce, jump, and stretch”; “throw, go, and roll”; and “dance, dance, dance.” No session was the same throughout the intervention. Intensity of the exercise sessions, monitored by Fitbit (described hereinafter), increased progressively from ~20% to ≥50% of estimated maximal heart rate across the first 6 wk of the intervention, then remained at ≥50% over weeks 7 to 12. Maximal heart was estimated as 210 − 0.56 × (age in yr) − 31 as suggested by Fernhall et al. (33) for use in individuals with Down syndrome. The one- and two-session-per-week groups were conducted separately, but were led by the same health educator.

Individual Support/Education

Participants and their study partner were asked to attend weekly 20-min support/education sessions with their health educator conducted using FaceTime® on the iPad. The health educator covered a weekly topic such as the importance of exercise for health, the selection of appropriate exercise clothing and footwear, importance of maintaining adequate hydration, and so on. At the end of each session, participants were asked to set a personal exercise goal for the next week, such as creating a dance routine, learning how to do push-ups, or trying a physical activity they had never done before.

Homework

All participants were asked to complete a weekly homework assignment designed to assist participants in meeting the weekly personal exercise goal they set during the individual support sessions. Participants were asked to make short videos of themselves completing their assignments using the iPad camera. Videos were automatically uploaded to Apple iCloud. The health educator logged into each participant's iCloud account to verify completion of homework assignments.

Assessments

Demographic information, that is, age, race/ethnicity, and sex, for both participants and study partners was collected only at baseline. Attendance at group exercise and individual support/education sessions, minutes of MVPA during group sessions, and homework completion were measured across the 12-wk study. Physical measures, that is, height, weight, and waist circumference, were obtained by study staff during a home visit.

Attendance

Attendance at both group exercise and individual support/education sessions was recorded by the health educator. Group exercise session attendance was defined as being logged in to the video conference and remaining on the screen for the entire 30-min session. Attendance at individual support/education sessions was defined as answering the FaceTime® call and being present on screen for the entire session.

Minutes of MVPA

Participants were asked to wear a Fitbit Charge HR on their nondominant wrist during all group exercise sessions. Although the Fitbit has not been validated in individuals with Down syndrome, acceptable validity and test–retest reliability of Fitbits for the quantification of MVPA in both laboratory and free-living conditions have been demonstrated in the general population (34,35). For example, Alharbi et al. (34) recently reported that daily MVPA estimated by the Fitbit Flex and an ActiGraph GT3 accelerometer differed by only 10 min·d−1, that is <1%. The Fitbit estimates MVPA on the basis of both motion and heart rate data using a proprietary algorithm.

The health educator asked participants to start and stop the Fitbit at the beginning and end of each exercise session. To ensure that participants were exercising at the prescribed intensity, participants were randomly asked to verbally report their heart rate or show their Fitbit heart rate output to the health educator two to three times during each exercise session. Participants exercising below their prescribed heart rate were encouraged to increase exercise intensity. Fitbit data were automatically uploaded to the Fitbit application on the iPad. After the completion of each exercise session, the health educator logged in to the participant's Fitbit account and recorded the minutes of MVPA.

Semi-structured Interviews

At the completion of the trial, in-person, semistructured interviews were conducted with each participant and his/her study partner to gather information on the overall ease and enjoyment of the program, and information regarding specific program components such as the value of homework assignments and the use of the Fitibt. Interviews that required ~20 min to complete followed a written script that included probing follow-up questions for participants who provided uninformative initial responses.

Height, Weight, and Waist Circumference

Standing height was assessed to the nearest centimeters using a portable stadiometer (Model #IP0955; Invicta Plastics Limited, Leicester, UK). Weight was assessed to the nearest 0.1 kg using a calibrated scale (Model #PS6600; Belfour, Saukville, WI). Body mass index (BMI) was calculated as weight (kg) divided by height (m2). Waist circumference was assessed using the procedures described by Lohman et al. (36). Three measurements were obtained with the outcome recorded as the average of the closest two measures. Participants wore shorts and a T-shirt for all assessments.

Statistical Analysis

Sample demographics and all additional measures were summarized by using descriptive statistics, that is, means and SD for continuous variables and frequencies and percentages for categorical variables. Percentage of exercise and support/educations sessions attended and homework assignments completed as well as average exercise session MVPA were calculated for each participant over the 12-wk intervention. Proc GLM was used to conduct t-tests to assess between-group differences in exercise and support/education session attendance, exercise session MVPA, and completion of homework assignments, adjusting for sex, age, education level, race/ethnicity, and BMI. In addition, Proc GLM was used to conduct t-tests for between-group differences in weight, BMI, and waist circumference adjusting for sex, age, education level, and race/ethnicity.

Statistical significance was determined at an alpha of 0.05. All analyses were performed using SAS Software, version 9.4 (SAS Institute Inc., Cary, NC).

RESULTS

Participants/Attrition

Twenty-seven young adults with Down syndrome (mean age, 27.9 yr; 40.7% female, and 10.1% minorities) enrolled in the trial. There was no attrition because all participants remained engaged over the entire 12-wk intervention (Table 1).

T1
TABLE 1:
Baseline Characteristics of Adults with Down syndrome Participating in a Exercise Intervention.

Session Attendance and Homework

Average attendance was 89.5% and 83.5% for the group exercise and individual support/education sessions, respectively. There were no significant differences in exercise session attendance between those randomized to 1 (89.9% ± 8.8%) or two sessions per week (88.8% ± 7.7%; Fdf = (1,16) = 0.07, P = 0.790). Attendance at individual support/education sessions did not differ significantly between groups (1 session per week, 81.2% ± 18.7%; two sessions per week, 86.0% ± 20.9%; Fdf = (1,16) = 0.03, P = 0.866). The completion rate for homework assignments did not differ significantly between the one- (21.4% ± 26.3%) and two-session-per-week groups (37.7% ± 21.7%, Fdf = (1,16) = 1.23, P = 0.284).

Group-Session MVPA

Participants averaged 27.7 ± 5.7 min per session of MVPA with no significant difference between the one- (26.6 ± 3.0 min per session) and two-session-per-week groups (28.8 ± 7.7 min per session, Fdf=(1,16) = 2.19, P = 0.158, total MVPA =57.7 ± 15.3 min·wk−1).

Semistructured Interviews

All 27 participants completed the interviews and all indicated that group video activity sessions were enjoyable and easy to fit into their schedule. Twenty-six participants (96%) indicated that they would continue attending the group video and support/education sessions if the intervention were to continue beyond 12 wk. Nineteen participants (71%) reported that they enjoyed completing the homework assignments. However, several participants commented that without reminders from their study partner, they often forgot to document the homework by video recording, as requested. Twenty-five participants (93%) reported that they enjoyed using the Fitbit and indicated that tracking activity was a good motivator. Responses to interview items did not differ between the one- and two-session-per-week groups.

DISCUSSION

Adults with Down syndrome have low levels of MVPA and face numerous barriers that increase the complexity of delivering effective interventions for increasing MVPA in this underserved group. Results of this pilot trial suggest that a combination of home-based group exercise sessions, delivered by a trained health educator using commercially available video conferencing software, and brief weekly support/education sessions delivered via FaceTime® may provide a feasible alternative to traditional on-site approaches for increasing MVPA in adults with Down syndrome. All participants completed the 12-wk intervention, attended ~89% of group exercise and ~84% of support/education sessions, and averaged 28 min of MVPA during each session. Attendance at both exercise and support/education sessions was similar in the one- and two-session-per-week groups, which suggests that at least two group exercise sessions per week are feasible in adults with Down syndrome.

Reports indicate that the PA levels of adults with IDD including Down syndrome are low (2,4). Our group recently found that at baseline adults with IDD only obtained 15 min of MVPA a day (105 min·wk−1). We are not aware of any previous trials designed specifically to evaluate strategies for the delivery of MVPA to adults with Down syndrome. Results from a short-term trial (15 wk) in a small sample of adolescents with IDD (n = 20, age ~18 yr), not specifically Down syndrome, indicated 85% completion of aerobic exercise sessions conducted at a community YMCA (22). Although successful over the short-term in adolescents, the long-term sustainability of attendance at an on-site program for adults with Down syndrome is questionable. Additional many agencies that serve individuals with Down syndrome cannot afford individual gym memberships for each client. Our results suggest that over the short term, that is, 12 wk, the group video approach scheduled for 2 d·wk−1 can provide ~56 min·wk−1 of MVPA for adults with Down syndrome. An additional group exercise session each week, if sustainable, has the potential to provide ~84 min of weekly MVPA, or 56% of weekly total MVPA recommended to achieve health benefits (4). The delivery of exercise sessions by group video eliminates the need for transportation, requires minimal involvement by care providers, and offers the potential for social interaction and support. However, there are some costs associated with this delivery system, for example, tablet computers, Internet, and Fitbits.

Additional adequately powered trials will be required to evaluate the long-term sustainability of group video approach, that is, ≥6 months, the effect of group exercise sessions on total daily MVPA and sedentary time, and the optimal frequency of group sessions, and to compare the effectiveness of the group video and on-site approaches for effectiveness and participant and provider costs. If the results of these trials are positive, community agencies providing services to adults to adults with Down syndrome would have a viable low-cost option for promoting increased MVPA among individuals that they serve. This technology-based approach may also allow agencies to provide MVPA to individuals with Down syndrome living in areas that do not have access to gyms or other community programs as well as those who lack the resources to attend in-person exercise programs.

In addition to attending group exercise and individual support/education sessions, participants were asked to complete a weekly homework assignment that required additional physical activity. The rate of completion of these assignments, which was based on video recordings of the activities made by participants, was quite low, that is, ~30%. Comments from semistructured interviews suggest that the rate of completion of homework assignments may be underestimated as a result of participants failing to record their activity. Nevertheless, additional strategies to improve the compliance to the physical activity outside the scheduled group exercise sessions need to be developed and evaluated. Study partners were not asked to help the participant with the homework assignment; the use of the study partner to help remind and film the participant may be one strategy to increase homework compliance in the future.

The results of this study suggest that video conferencing may be a feasible approach for improving MVPA in adults with Down syndrome. However, this study is limited by a small sample (n = 27) of young adults with Down syndrome, who were incentivized to participate in a short-term (12-wk), nonrandomized trial, and thus should be interpreted cautiously. The use of the Fitbit; which has not been validated specifically for this population; lack of assessment of nonexercise session MVPA; and lack of documentation of study partner attendance are additional limitations.

In summary, results of this pilot trial suggest that video conferencing is a potentially feasible approach for the delivery of PA to young adults with Down syndrome, and that multiple sessions per week may be feasible, as well as beneficial, for increasing total weekly MVPA. Adequately powered trials to further evaluate the feasibility of video conferencing for the delivery of PA over longer time frames (e.g. ≥6 months), with increased group exercise sessions during the week, to assess changes in weekly MVPA and memory are warranted. If shown to be sustainable and effective in the long term, the group video conference would be a viable low-cost option for use by community agencies interested in promoting increased MVPA in young adults with Down syndrome that they serve.

This study was supported by the University of Kansas Alzheimer's Disease Center grant AG035982.

No authors report any conflicts of interest, and the results of this study do not constitute endorsement of the American College of Sports Medicine.

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