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. Author manuscript; available in PMC: 2024 Dec 15.
Published in final edited form as: J Appl Res Intellect Disabil. 2022 Dec 30;36(2):385–393. doi: 10.1111/jar.13068

The effect of a telehealth exercise intervention on balance in adults with Down syndrome

Kristina Guerrero 1, Alexandria Umagat 1, Mark Barton 1, Andrew Martinez 1, Kai-Yu Ho 1, Sarah Mann 2, Thessa Hilgenkamp 1
PMCID: PMC11646388  NIHMSID: NIHMS2041350  PMID: 36585748

Abstract

Background:

People with Down syndrome often present with balance deficits, which compromise safety during daily activity. While evidence shows that exercise can improve balance in the Down syndrome population, it is unclear if a telehealth method will elicit similar benefits. We aimed to examine the effects of a virtual exercise program on balance in adults with Down syndrome.

Methods:

Eighteen low-active participants with Down syndrome completed a 12-week telehealth exercise program based on the Mann Method. Balance testing took place before and after the intervention, which included: TUG, MCTSIB, FICSIT-4, and FRT. This study was registered as a clinical trial on ClinicalTrials.gov, identifier: NCT04647851.

Results:

Significant improvement was seen in the TUG (p = .043), FICSIT-4 (p = .019) and FRT (p = .019). All participants achieved maximum scores on the MCTSIB in pre- and post-testing.

Conclusions:

Balance in low-active adults with Down syndrome significantly improved following the telehealth exercise program, which we attribute to the tailored exercises that address visual/vestibular deficits and hip muscle weakness.

Keywords: balance, Down syndrome, remote exercise, telehealth

1 |. INTRODUCTION

Down syndrome is the most common genetic disorder affecting more than 200,000 children and adults in the United States (de Graaf et al., 2017). Down syndrome is usually caused by trisomy 21, which occurs when three, rather than two, full or partial copies of the 21st chromosome are present in the cells. This alteration of the genes results in a unique presentation that is characterised by cognitive and physical impairments (Bull, 2020). These impairments contribute to a deficit in static and dynamic balance, which poses a challenge to daily activities as well as more demanding endeavours. Difficulties maintaining balance and postural control increase the risk of falling and injury, compromising the safety of individuals with Down syndrome (Vimercati et al., 2013). Many studies have identified patterns of decreased participation in physical activity, which limits social interaction and often leads to sedentary behaviour (Diaz, 2020; Fox et al., 2019; Izquierdo-Gomez et al., 2014; Oreskovic et al., 2020; Wuang & Su, 2012). It is critical to quantify these balance deficits and consider possible solutions to improve these impairments to consequently enhance activity, participation, and overall quality of life.

Several studies have attributed these balance issues to both structural and neurological factors prevalent in individuals with Down syndrome. Hypotonia and ligamentous laxity are two anatomical features that can result in functional weakness and reduced dynamic joint stability (Galli et al., 2008). Starting at the upper cervical spine, instability at the atlanto-occipital or the atlanto-axial joint can impair adequate support of the head over the body and can be detrimental in the case of an accident or fall (Foley & Killeen, 2019). In the lower extremities, hip and patellofemoral instability can impair optimal alignment needed to achieve proper balance (Mik et al., 2008). Ligamentous laxity in the foot causes pes planus abnormalities, which prevent normal foot posture and orientation of the body, reducing standing balance (Foley & Killeen, 2019). Previous studies suggested that the anatomical features in combination with the neurological deficits related to Down syndrome cause a difficulty maintaining equilibrium when attempting balance, especially in changing environments (Cabeza-Ruiz et al., 2011; Malak et al., 2015). Malak et al. (2015) found correlations between low motor function scores and low balance scores, which reflect the delayed motor development associated with Down syndrome. Another study using a force plate to measure centre of pressure displacement during static standing concluded that those with Down syndrome demonstrated greater anterior–posterior and medial-lateral sway in eyes open and eyes closed conditions (Cabeza-Ruiz et al., 2011).

The neurological components required for proper balance include the somatosensory, visual, and vestibular systems, each of which seems to be altered in people with Down syndrome. Research conducted by Villarroya et al. (2012) utilised multiple balance conditions (e.g. eyes open, fixed-support, etc.) and found that children with Down syndrome have difficulty interpreting somatosensory input to achieve postural control for maintaining balance. An accurate somatosensory system is essential for proprioception, which allows the body to understand where it is in space. When the somatosensory system is impaired, the body misinterprets proprioceptive input and has difficulty adjusting posture and equilibrium, especially in situations that challenge the somatosensory system, that is, compliant surfaces such as grass or carpeted floors. Another study found that adults with Down syndrome have impairments in their visual systems, such as depth perception, colour discrimination, and reduced sensitivity (Krinsky-McHale et al., 2014). Visual input is critical to guide accurate responses to balance situations as it can anticipate how the body should move to correct posture and avoid a fall or injury. Additionally, potentially faulty connections between the vestibular system and the cortex may be a contributing factor to balance dysfunction in individuals with cognitive deficits (Gurvich et al., 2013). The vestibular system allows the body to maintain equilibrium with head and trunk movement and facilitates accurate righting reflexes to maintain posture and alignment relative to the environment. Inaccurate vestibular input can result in events such as dizziness, vertigo, and/or an impaired ability to correct posture when navigating the environment. Although there are no studies specifically evaluating vestibular function in adults with Down syndrome, some studies have shown a high prevalence of hearing loss and inner-ear abnormalities in individuals with Down syndrome (Clark et al., 2017; Evenhuis et al., 1992), which has been shown to impact vestibular function in other populations (Sokolov et al., 2019). In addition, semicircular canal hypoplasia has been identified in the vestibular system of individuals with Down syndrome (Inagaki et al., 2011). In addition to the impairments in these three systems, Villarroya and colleagues further suggest an inability to efficiently shift between the three systems for proper balance (Villarroya et al., 2012). This inefficiency prevents those with Down syndrome to appropriately adapt their balance strategies to changing environments. Taken together, an impairment in one or more of these systems is detrimental to the complete balance system necessary for equilibrium and predisposes those with Down syndrome to higher risks of loss of balance incidents.

As individuals with Down syndrome experience specific balance challenges, they may require specific interventions that address these issues. Current literature supports the effectiveness of exercise interventions on improving balance in those with Down syndrome. A recent study showed treadmill training and core stabilisation exercise in children with Down syndrome improved their core and lower extremity strength, resulting in improved objective balance scores (Alsakhawi & Elshafey, 2019). Additionally, strength programs were found to improve leg strength, balance, and walking function in both young adults with Down syndrome (Tsimaras & Fotiadou, 2004) and older adult participants with Down syndrome (Carmeli et al., 2002). The same benefits were found in children with Down syndrome who completed a 6-month physical therapy program (Eid, 2015). However, in the face of the COVID-19 pandemic, research is needed to determine if a telehealth exercise program will elicit the same improvements in balance for populations with Down syndrome.

Emerging research shows promise in the success of telehealth physical therapy interventions for individuals in other populations. The Centers for Medicare and Medicaid Services define telehealth as the use of electronic information and telecommunications technologies to extend care when the provide and the patient are not in the same place at the same time. One study examined the effectiveness of a home-based telephone guided exercise program in older adults when compared to a control group who received educational calls to discuss health related topics. After 3, 6, and 12 months of the remote intervention, improvements were seen in strength, balance, and depressive symptoms (Sparrow et al., 2011). In two RCTs a post-stroke rehabilitation program was administered to patients in a conventional setting and a telehealth setting. In both studies, researchers found that the telehealth group improved as much as the conventional group in Berg Balance scores, State Self-Esteem Scale and SF-36 (Lai et al., 2004), and the Barthel Index, indicating increased ability to perform self-care and daily activities (Lin et al., 2014). In adolescents with Down syndrome, a telehealth weight loss intervention demonstrated good feasibility and was just as effective as the inperson intervention (Ptomey et al., 2015). However, further research is needed to explore the use of telehealth for populations with intellectual and development disabilities, as this may affect accessibility and effective use.

In addition to the unique physical and neurological characteristics of Down syndrome, reported participation in physical activity among people with Down syndrome is limited by cognitive-emotional, social, and environmental barriers (Heller et al., 2002; Mahy et al., 2010). Access to physical activity opportunities may also be limited by reliance on others for transportation (Wuang & Su, 2012), lack of support from others (Mahy et al., 2010), and costs/knowledge barriers (Heller et al., 2002). The current COVID-19 pandemic further increases their difficulty to participate in exercise programs and therefore, increases the need to introduce opportunities for exercise via telehealth. Therefore, we aimed to examine the effect of a 12-week virtual exercise program including foundational strengthening, neuromuscular rehabilitation, and cardiovascular activity on their balance function. We hypothesized that delivering a virtual exercise program to individuals with Down syndrome would have significant benefits on improving measures of balance.

2 |. METHODS

2.1 |. Design and participants

This study was part of a larger randomised controlled trial on the effects of exercise on blood flow regulation and fitness in adults with Down syndrome. The COVID-19 pandemic stressed the need for investigating the potential of online exercise programs both for research and practice. We, therefore, executed this quasi-experimental, repeated measures-design study during the COVID-19 pandemic, to determine whether this would be an acceptable alternative to inperson training sessions with regards to the effects on balance in adults with Down syndrome. In- and exclusion criteria were kept similar to the larger study this study was part of. Individuals with Down syndrome between 18 and 35 years old who are low-active (<150 min of moderate-intense activity/week) were recruited. Recruitment was done through flyers, advertisements in newsletters and through support groups and organisations for individuals with Down syndrome in the Las Vegas area, including the use of electronic communication and social media to spread to other states in the United States and beyond. Due to the fact that this study was all virtual, we were able to recruit participants from across the United States and even one participant from Scotland. Exclusion criteria for this study included vascular disease, pulmonary disease such as asthma, hypertension, hypotension, history of presyncope and syncope, diabetes, severe obesity, current smoking, pregnancy, anti-inflammatory medication and medication for heart rate and blood pressure. Based on Rimmer et al., the calculated effect size for a repeated measures design of an exercise intervention in individuals with Down syndrome was 0.71 (Rimmer et al., 2004). Using a power of 0.8, alpha level set at 0.05 and assumed correlation between pre and post of 0.7, the required sample to detect a difference with a repeated design is n = 18, using G*Power software. To account for an estimated 5% drop out, we aimed to recruit n = 20 participants. Participants and their legally authorised representatives provided written informed consent before participation in this study.

2.2 |. Procedure

Balance measures were obtained before and after a 12-week exercise intervention program. These assessments took place remotely from the participants’ homes and were conducted by a team of trained researchers via Zoom with in-person assistance from a caretaker. Materials and instructions (written and in video online) for these measures were sent to the participants prior to beginning the study. Doctor of Physical Therapy (DPT) students received a 6-h training session and were evaluated for correct instruction and execution of these tests online by the PI, who has over 15 years of experience with physical fitness fields tests in individuals with Down syndrome. The DPT students provided all the instructions and exemplified the execution, whereas the caretaker was only involved in the setup of the materials and recording the time on the timed tests, to avoid delays caused by connectivity issues. This was verified by a second DPT student who was present as observer/notetaker. All sessions were recorded to allow for double-checking of outcomes.

2.3 |. Exercise intervention

The participants completed a virtual 12-week progressive exercise program (three sessions/week, 1 h per session) based on the Mann Method PT Principles (manuscript under review). The intervention included: (1) foundational movements focusing on abdominal activation, gluteal activation, hip stabilisation, and neuromuscular sequencing, (2) hip strengthening activities targeting gluteal and lateral hip musculature, (3) visual/vestibular activities for improving weight shift, balance, righting reactions, and visual-vestibular coordination, and (4) cardiovascular activities focusing on foot position, gait mechanics, reciprocal movement patterns, weight shifting and balance, as well as cardiovascular efforts. A detailed list of the exercises is included in Table 1. The exercise program was verbally explained and visually demonstrated during the live exercise sessions. Instructions were concise and consistently used throughout the program, and the participants received a chart with pictures of the exercises to follow along with. Trained examiners attended the Zoom calls to monitor participant adherence, intensity, form, and overall mood. Each examiner used an observation checklist to quantify deviations in exercise form and noted any changes in attitude and endurance between each session. Attendance of the exercise program was recorded.

TABLE 1.

Mann method PT exercise program

Category Time/session in minutes Exercises (sets/reps)
Foundational movements 10 Squats (2/10)
Squats with Overhead Reaches 2/10
Push-ups 2/10
Planks 2/10
Quadruped Reaches and Kicks 2/10
Hip strengthening 15 Gluteal bridges 1/15
Clamshells 2/15
Tall Kneel to Half Kneel 3/15
Standing to Half Kneel to Tall Kneel 5/15
Tall kneeling paired with PNF D1 Upper extremity flexion—4/15
Visual/vestibular activities 15 Under/Over Reaches 1/15
Side-to-Side Passes 2/15
Diagonal Passes 2/15
Half kneeling/Tall kneeling paired with PNF D1 Upper extremity flexion—4/15
Lateral Weight Shifts with Holds 3/15
Anterior-Posterior Weight Shifts with Holds 3/15
Cardiovascular activities 20 Squats 2/20
Squat and reach 2/20
Forward Jumps 2/20
Lateral Jumps 2/20
Open/Close Jumps 2/20
Standing Marches 2/20
Freestyle Dancing 8/20
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2.4 |. Balance measures (primary outcomes)

The balance assessments that were used include the Timed Up and Go Test (TUG), Functional Reach Test (FRT), Frailty and Injuries: Cooperative Studies of Intervention Techniques (FICSIT-4) and Modified Clinical Test of Sensory Interaction on Balance (MCTSIB). These were administered to the participants via Zoom calls by a team of trained researchers. Participants were provided with detailed instructions on how to set up their devices prior to each balance test.

The TUG analyzes an individual’s dynamic balance, mobility, and fall risk (Podsiadlo & Richardson, 1991), with excellent validity, reliability and feasibility in numerous populations, including adults with Down syndrome (Podsiadlo & Richardson, 1991), (Boer & Moss, 2016; Lin et al., 2004). To participate in the TUG, participants required a clear walkway, a chair, rope that measured 10 feet, and tape. Participants were provided rope and tape to allow for accurate measurements and were instructed to use a chair that allowed the participant to put their feet flat on the floor with knees in a 90° angle (Lee et al., 2022). The 10-foot rope was placed in front of the chair and extended in a straight line, tethered by the tape. Participants were instructed to begin the test sitting in the chair and to wait for their caregiver to say “Go” before standing and walking as fast as they could without running to the tape and back before sitting down. The caregiver used a timer to time the participants in seconds and a researcher recorded the time for each trial. Meanwhile, another researcher observed the participant for any dynamic balance impairments with gait. The test was performed two more times and the average time was then calculated for the participant’s score (Christopher et al., 2021). The minimal detectable change for the TUG was found to be 1.26 s in children with Down syndrome (Martin et al., 2017).

The MCTSIB is an easily administered balance test that allows assessment of the three neurological systems (i.e., somatosensory, visual, and vestibular) and has been shown to have excellent reliability and validity in individuals with vestibular dysfunction (Horn et al., 2015). To perform this test, participants required access to a firm surface as well as a foam pad which was provided to them. Participants were instructed to attempt to maintain balance for 30 s in four conditions: a firm surface with eyes open (EO), firm surface with eyes closed (EC), compliant surface with EO, and compliant surface with EC. If any participant was not able to achieve 30 s without loss of balance on the first trial, they were allotted two more trials for each condition. One researcher recorded time for each trial while another observed the participants for balance deviations that indicated termination of the trial. The best time for every condition was used and the total score could add up to 120 s.

The FICSIT-4 is a 7-item balance assessment requiring minimal time and energy and has been shown to have good reliability and validity, as well as discrimination across a wide range of health statuses (Rossiter-Fornoff et al., 1995). Feasibility was demonstrated to be good in older adults with intellectual disability (Oppewal et al., 2013), and in adolescents and young adults with intellectual disability, test–retest reliability was shown to be good (Blomqvist et al., 2012), and for this, reason these stances are recommended for use in adults with intellectual disabilities (Oppewal & Hilgenkamp, 2020). No materials were required for this assessment. Participants were instructed to attempt balance for 10 s in seven balance positions on a firm surface: feet together with eyes open and eyes closed, semi-tandem stance with eyes open and eyes closed, tandem stance with eyes open and eyes closed, and a single leg stance with eyes open. Each trial was graded on a 0–4 point scale with 0 indicating the need for help to prevent falling and 4 indicating the person being able to successfully hold the position for 10 s. The highest possible total score was 28 points. The minimal detectable change was 1.52 points in older adults with dementia (Blankevoort et al., 2010).

The FRT assesses stability by having the participant reach forward as far as they can in a fixed position without losing balance (Duncan et al., 1990). Study participants were asked to stand next to a wall and were instructed to tape a tape measure to the wall at axilla height. They were then directed to stand at the “0” end with their arms straight out in front of them at 90 of shoulder flexion. Participants were instructed to line up with their middle knuckle at the “0” on the tape and reach forward as far as they could without taking a step. Their caretaker provided stand-by assistance and measured each trial by marking the distance travelled with a piece of tape and recording it. They were allowed two practice trials and three test trials with their score being the best attempt of the 3. This test has demonstrated great reliability and validity with populations demonstrating similar balance deficits (Schenkman et al., 1997; Weiner et al., 1992), and excellent feasibility and reliability in adults with intellectual disabilities (Blomqvist et al., 2012; Enkelaar et al., 2013). The minimal detectable change in FRT distance in the healthy young males was 1.83 cm (Suzuki et al., 2021).

2.5 |. Strength measures (secondary outcomes)

In the 5-time Sit-to-Stand (5xSTS) test, the participant is required to stand from sitting in a chair without armrests for five repetitions as quickly as possible (Guralnik et al., 1994). The participants were instructed to use a chair that allowed the participant to put their feet flat on the floor with knees in a 90 angle. The participant begins the test seated in the chair and begins when the instructor starts the timer. The timer is stopped when the participant sits in the chair at the end of the fifth repetition and the test concludes.

The 30 s chair stand (30secCS) test requires the participant to perform as many repetitions of sit-to-stands as possible from a chair without armrests within a 30 s window (Rikli & Jones, 2001). This test demonstrated excellent reliability in older adults with intellectual disabilities and in younger adults with Down syndrome (Boer & Moss, 2016; Hilgenkamp et al., 2012). The participant starts the test seated in the same chair as mentioned above and begins when the instructor starts the timer. The participant attempts as many repetitions of sit-to-stands as possible in the 30 s timeframe. One repetition is fully counted when the participant stands from the chair and returns to a seated position. The instructor announces when the 30 s interval is complete. Any repetition that is not fully completed at the end of the time interval is not counted toward the total number of repetitions.

2.6 |. Statistical analysis

Baseline characteristics of the group were calculated with descriptive statistics. Normality of the outcome variables and normality of the differences was tested with the Shapiro–Wilk test. In case of normality, differences between the pre-test and post-test were analysed and compared using paired t-tests. The non-normally distributed variables were analysed with the Wilcoxon Signed rank test. Cohen’s D effect size was calculated for estimating the magnitude of the effect (small (d = 0.2), medium (d = 0.5), and large (d = 0.8)) (Cohen, 1988). Significance level was set at an alpha level of 0.05, all analyses were performed using IBM SPSS Statistics 26 (International Business Machines Corp, Armonk, NY, USA). Balance assessment scores were also evaluated for the number of participants who improved more than minimally detectable change (MDC), which is the minimal change to fall outside of the measurement error of a test, ideally determined in the population of interest.

3 |. RESULTS

The overall attendance of all sessions of the exercise program was 93%. One participant dropped out early in the intervention for reasons unrelated to the program. One participant was excluded from all post-testing measures due to an ankle injury sustained from activity outside the program. Hence, out of the 20 participants who consented to participate in this study, a total of 18 participants (female = 5 and male = 13) were included in our analyses for the TUG, MCTSIB, 5xSTS, and 30 s chair stand. For the FICSIT-4, one participant had missing data for the pre-testing due to not understanding the instructions, resulting in n = 17 (female = 5 and male = 12). For the FRT, we were able to include a total of 16 participants (female = 5 and male = 11). One participant had missing data for the pre-testing due to not understanding the instructions, and for one other participant the post-test of the FRT was excluded due to invalid execution (moved their feet), only detected when rewatching the recording. Demographic and anthropometric information is included in Table 2.

TABLE 2.

Participant demographics & anthropometrics for n = 18 participants

Variable Baseline
Sex F = 5, M = 13
Age (years) 25.7 ± 4.7
Height (m) 1.57 ± 0.1
Weight (kg) 73.1 ± 14.8
BMI (kg/m2) 29.4 ± 5.8
Waist circumference (cm) 93.4 ± 12.5
Left calf circumference (cm) 37.8 ± 4.5
Right calf circumference (cm) 37.9 ± 4.7
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Note: All values are reported as mean ± SD.

The balance measurement results are displayed in Table 3.

TABLE 3.

Outcome measure score

Test name Participants (n) Pre-intervention Post-intervention p-Value Cohen's D effect size
TUGa n = 18 8.3 (7.4–10.7) sec 7.3 (6.4–9.3) sec .043* −0.477
MCTSIB n = 18 120 ± 0 sec 120 ± 0 sec NA NA
FICSIT-4a n = 17 25 (23–26) points 26 (23.5–28) points .019* 0.569
FRT n = 16 30.25 ± 6.3 cm 33.7 ± 6.1 cm .019* 0.660
5xSTSa n = 18 11.6 (9.7–15.1) sec 9.8 (8.4–12.4) sec .014* −0.580
30 sec CS n = 18 13.9 ± 4.2 reps 15.7 ± 4.1 reps .032* 0.552
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Note: All values are reported as mean ± SD.

Abbreviations: 30secCS, 30 s chair stand; 5xSTS, five times sit to stand; FICSIT-4, frailty and injuries: cooperative studies of intervention techniques 4; FRT, functional reach test; MCTSIB, modified clinical test of sensory interaction in balance; TUG, timed up and go.

a

Non-normal distribution, use of median (interquartile range) instead of mean ± SD, and use of Wilcoxon Signed Rank Test instead of paired T-test.

*

p-Value < .05 indicates statistical significance.

All balance tests showed a significant improvement from pre-intervention to post-intervention with medium effect sizes (TUG, FICSIT-4 and FRT), except for the MCTSIB, as all participants achieved maximum scores of 120 s on the MCTSIB in pre- and post- testing and therefore showed no significant difference (Table 3). The secondary outcomes for leg strength (30secCT and 5xSTS) also showed significant improvements with medium effect sizes (Table 3). Comparison of individual participant scores to thresholds of minimal detectable change show that 12 out of 16 (75%) participants increased their FRT distance by 1.83 cm or more, with the greatest increase being 12 cm (Suzuki et al., 2021). Eleven out of 17 (65%) participants increased their FICSIT-4 score by 1.52 points or higher, with the greatest increase being 19 points (Blankevoort et al., 2010). Six out of eighteen (33%) participants improved their TUG score by 1.26 s or higher (Martin et al., 2017).

4 |. DISCUSSION

The purpose of this study was to quantify the balance function in adults with Down syndrome using standardised balance tests and investigate the effects of a remote exercise program on these balance measures. This study demonstrated improved balance performance after the 12-week online combined exercise intervention.

Our participants with Down syndrome showed worse balance scores than the general population. The participants in this study achieved a TUG score of 9.1 ± 2.7 s, while TUG scores for age-matched peers without Down syndrome averaged 8.6 ± 1.4 s (Kear et al., 2017). Our participants also achieved lower FRT scores (27.8 ± 6.8 cm) than that of their age-matched peers (20–39 years) without Down syndrome, which recent studies have shown to be 43.8 ± 4.6 cm (Norris & Medley, 2011) and 39.5 ± 3.0 cm (Merchan-Baeza et al., 2021). The mean FICSIT-4 scores for this group of participants was 24.2 ± 2.9 points. There are no studies that use the FICSIT-4 assessment for people with Down syndrome or a young adult population. Based on available evidence, the average scores for this measurement are 26.9 ± 1.8 points in middle-aged women (Wherry et al., 2019) and 24.8 ± 3.5 points in older adults with a mean age of 74.6 (Deshpande et al., 2017). The caveat of these comparisons is that none of these studies in the general population reported physical activity level, which could potentially contribute to explaining the differences with our low-active participants.

These poorer balance outcomes observed in our work are likely due to the impaired function of the balance systems experienced in people with Down syndrome, and underscore their risk of falling and injury (Vimercati et al., 2013). We suspect that maximum scores were achieved on the MCTSIB because this balance test assessed static balance with no changes to the base of support (BOS), meaning participants were able to stand in their comfortable BOS. Conversely, the FRT assessed dynamic balance and the FICSIT-4 included progressive narrowing of the BOS, both requiring greater challenges to balance. The results of this study demonstrated that people with Down syndrome experience increased difficulty performing balance tasks when decreasing their BOS and with dynamic balance challenges. An impaired ability to adapt to changing surfaces and achieve stabilisation before movement creates safety concerns for daily and extracurricular physical activity.

The results confirmed our hypothesis and revealed a significant improvement in scores on the balance measures: TUG, FRT and FICSIT-4 test and the strength measures: 5xSTS and 30 s CS following the telehealth exercise intervention. The results of the virtual exercise program are in line with studies done previously in that exercise programs improved balance and strength in children, young adults, and older adults with Down syndrome (Alsakhawi & Elshafey, 2019; Carmeli et al., 2002; Eid, 2015; Maiano et al., 2019; Tsimaras & Fotiadou, 2004). These improvements in our study can likely be attributed to the specific movements in the Mann Method exercise program that addressed visual/vestibular deficits and hip muscle weakness. The TUG requires adequate strength to perform a sit to stand and return to sitting position, as well as maintain stability for dynamic base of support changes during ambulation. The squats and anterior–posterior weight shifts from the exercise program most resemble the movements required for the TUG and can be seen as specific training to perform this task. The FRT requires adequate hip and trunk muscle activation to provide a stable base of support to allow the extremities to move away from the body. The exercises that likely contributed to the improvement with this test are the foundational movements and vestibular activity such as quadruped movements and anterior–posterior weight shifts. The FICSIT-4 assessment requires the use of 1 or more of the 3 balance systems (vision, vestibular, somatosensory) to maintain various standing positions. The specific exercises in the intervention that train these balance systems include the visual and vestibular activity section of the program found in Table 1. In addition, the significant improvements in our secondary outcome measures of strength (5xSTS and 30secCS) can be attributed to the hip strengthening and foundational movements sections of the program. The exercise program conditioned the muscles and systems required for the balance assessments and consequently, for daily activity and function.

While the average group results show significant improvement, not all participants’ score changes exceeded the minimal detectable change (MDC). Based on available evidence, their scores were compared to other populations as there are no established norms for the MDC in these balance tests specifically for adults with Down syndrome. Most participants improved more than the MDC for the FRT (75%) and the FICSIT-4 (65%). According to Martin and colleagues, the MDC for the TUG was found to be 1.26 s in children with Down syndrome (Martin et al., 2017). Less than half of the participants (n = 6) decreased their scores on the TUG to meet the MDC, with the highest improvement being 3.48 s. Another study in adults with Down syndrome calculated a much lower MDC of 0.70 s for the timed up and go, but used and 8 feet distance instead of a 10 feet distance, rendering the comparison invalid (Boer & Moss, 2016). However, as a group, our participants improved their mean scores to nearly the average of their age-matched peers (Kear et al., 2017). These MDC values demonstrate that 12 weeks of an exercise program contributed to a balance improvement in most of our participants. Thus, further research should investigate the effects of a longer-term exercise program on MDC for the balance measures. Future research is also needed to establish norms and MDC values for adults with Down syndrome.

4.1 |. Recommendations

This study included a sample size (n = 18) that was sufficiently powered to answer our questions. However, with a narrow age range of 19–34 years, these results are only generalizable to young adults with Down syndrome who are low-active. Future research is necessary to determine the efficacy of the exercise program based on the Mann Method PT principles in the paediatric and geriatric Down syndrome populations. We also recommend future research to examine the potential benefits of an exercise program longer than 12 weeks as we suspect more participants will be able to achieve the MDC on their balance scores.

4.2 |. Clinical implications

This study supports the use of a specific telehealth exercise program to address balance impairments in adults with Down syndrome. Anecdotally, the participants were overwhelmingly positive about the program itself and the changes they noticed in their fitness and other domains. Combining this information with an attendance of 93%, telehealth seems to be a feasible and effective delivery method of exercise for individuals with Down syndrome. Additionally, the majority of the participants continued attending a weekly joint exercise session after the study had finished. We found that the FRT and FICSIT-4 balance measures are appropriate evaluation measures for balance in adults with Down syndrome, whereas the ceiling effect on the MCTSIB limits its usability for similar studies in adults with Down syndrome. This is the first study demonstrating that telehealth is a suitable method for delivering an exercise intervention to adults with Down syndrome. This study serves as a starting point to further develop telehealth interventions to best serve this population. Future studies or interventions would likely benefit from having a smaller group to monitor every session for less experienced instructors. Recent research also shows that patient satisfaction is not significantly different among patients receiving physical therapy via inperson care as compared to telehealth (Eannucci et al., 2020). Physical therapists who are planning to give telehealth care to patients with Down syndrome need to have an advanced level of movement pattern analysis, motivational skills, and must be proficient with all required technology.

4.3 |. Limitations

The exercise program was completed with adults with Down syndrome between the ages of 19–34, therefore, these results cannot be generalised to the paediatric or geriatric Down syndrome population. Additionally, the majority of our sample consisted of men (13 men vs. 5 women) and further research with a more favourable ratio of women included is needed to improve generalisation of our results. Although we used tests that have been standardised in other populations and that have shown good reliability and feasibility in populations with Down syndrome or intellectual disabilities, it is a limitation of this study that our tests were not standardised for use in adults with Down syndrome specifically, especially for the MCTSIB test. In addition, since our study lacked a control group, we cannot definitively attribute our results to the intervention. Natural progression in the participants over 3 months could have contributed to our findings. However, previous research on balance in Down syndrome does support poor balance to be highly prevalent and present across the lifespan (Hilgenkamp et al., 2014; Villarroya et al., 2012), which makes natural progression an unlikely explanation for the improvements in balance we measured in this study. With 12 weeks in between, a learning effect is not likely to explain our results either, even more so because the participants received the test instruction videos beforehand. While the telehealth program allowed us to expand our reach internationally, there were challenges with the telehealth-based format. The study design limited our ability to provide in-person pre- and post-assessments which may have reduced accuracy of the measures due to inconsistencies from different caregivers, test administrators and technological difficulties such as poor sound quality, poor camera quality, and internet connectivity issues. The amount of space needed to set up an exercise area and accommodate for optimal camera viewing was included in the set-up instructions, however, not all the participants’ home spaces were amenable to those requirements. Additionally, some participants had technological issues that did not allow optimal viewing for the exercise instructor and student observers.

5 |. CONCLUSION

In conclusion, we found that adults with Down syndrome do not perform as well as the general population in balance activities, but that they improve with a 12-week telehealth exercise program. Clinicians are advised to assess for these balance impairments in their patients with Down syndrome and implement an exercise program that is specifically tailored to address visual/vestibular deficits and hip muscle weakness.

Funding information

Eunice Kennedy Shriver National Institute of Child Health and Human Development, Grant/Award Number: R00HD092606

Footnotes

CONFLICT OF INTEREST

None of the authors have any conflict of interest to disclose, except author SM who is the founder of company Mann Method PT and Fitness.

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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