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Journal of Sport and Health Science 2 (2013) 47e57


www.jshs.org.cn

Review

Children and adolescents with Down syndrome, physical fitness


and physical activity
Ken Pitetti a,*, Tracy Baynard b, Stamatis Agiovlasitis c
a
Department of Physical Therapy, College of Health Professions, Wichita State University, Wichita, KS 67260-0043, USA
b
Department of Kinesiology & Nutrition, University of Illinois at Chicago, Chicago, IL 60612, USA
c
Department of Kinesiology, Mississippi State University, Mississippi State, MS 39762, USA
Received 8 July 2012; revised 7 September 2012; accepted 26 September 2012

Abstract

Children (5e12 years) and adolescents (13e19 years) with Down syndrome (DS) possess a set of health, anatomical, physiological,
cognitive, and psycho-social attributes predisposing them to limitations on their physical fitness and physical activity (PA) capacities. The
paucity of studies and their conflicting findings prevent a clear understanding and/or substantiation of these limitations. The purpose of this
article was to review the measurement, determinants and promotion of physical fitness and PA for youth (i.e., children and adolescents) with DS.
The existing body of research indicates that youth with DS: 1) have low cardiovascular and muscular fitness/exercise capacity; 2) demonstrate
a greater prevalence of overweight and obesity; 3) a large proportion do not meet the recommended amount of daily aerobic activity; and 4) their
PA likely declines through childhood and into adolescence. Future research should focus on: 1) strength testing and training protocols; 2)
methodologies to determine PA levels; and 3) practical interventions to increase PA.
Copyright Ó 2012, Shanghai University of Sport. Production and hosting by Elsevier B.V. Open access under CC BY-NC-ND license.

Keywords: Activity; Adolescents; Children; Down syndrome; Fitness

1. Introduction displayed facial features (e.g., epicanthal fold) that shared


similarities with the prevailing erroneous ethnic theory estab-
1.1. Background and genetics lished by the German anatomist, Johann Friedrich Blu-
menbach.2 Catalyzed by editorials in The Lancet, together with
The condition of Down syndrome (DS) was first described in political pressure by advocacy groups and parental organiza-
a clinical lecture report delivered in 1866 by the British physi- tions in the 1960s, the term “mongolism” was dropped from
cian, John Langdon Down, entitled “Observation on the ethnic medical references by the World Health Organization and
classification of Mongoloid idiots”.1 Dr. Down used the replaced by “Down syndrome” during the 1970s.3 The cause of
derogatory term “Mongoloid” because children with DS DS remained unknown until the 1950s when it became possible
to identify chromosomal abnormalities with the discovery of
karyotype techniques. In 1959 the French geneticist, Dr. Jerome
* Corresponding author.
Lejeune, reported that DS was caused by an extra 21st chro-
E-mail address: ken.pitetti@wichita.edu (K. Pitetti) mosome, an aneuploidy condition known as trisomy 21.4 The
Peer review under responsibility of Shanghai University of Sport vast majority of cases of DS are due to full trisomy 21, with
every somatic cell in the body having an extra 21st chromosome
(Table 1). A smaller percentage of persons with DS are due to
mosaic trisomy (2%e4%) and Robertsonian translocation
Production and hosting by Elsevier (3%e4%).5 Reports have suggested that children with mosaic

2095-2546 Copyright Ó 2012, Shanghai University of Sport. Production and hosting by Elsevier B.V. Open access under CC BY-NC-ND license.
http://dx.doi.org/10.1016/j.jshs.2012.10.004
48 K. Pitetti et al.

DS have similar health and developmental difficulties as chil- Although ID affects every day functioning, the health
dren with full trisomy 21, but to a lesser degree6 and those with profiles of children and adolescents with ID without DS are
DS caused by Robertsonian translocation have increased unremarkable. In contrast, the effects of DS involve a range of
frequency of psychiatric disorders.7 medical conditions in addition to ID that may be identified at
birth or develop during the life span (Table 1). These condi-
1.2. Demographics tions include increased risk of congenital heart disease (50%),
hearing loss (75%), eye disease (60%), obstructive sleep apnea
In the United States the incidence of DS at birth from 1979 (75%), gastrointestinal conditions (10%), thyroid (hypothy-
to 2003 increased from 9.0 to 11.8 per 10,000 births roidism) disease (15%), and atlanto-axial/atlanto-occipital
(Table 1).8 It is suggested that the probable cause for the instability (10%e30%).8,9 Excluding birth, nearly half of
increase in DS is related to the trend toward later child children with DS are hospitalized before age 3, with the
bearing, with women over 35 being five times more likely than principle causes for hospitalization being congenital heart
younger women to have children with DS.5 disease (e.g., septal and valvular anomalies) and respiratory
illnesses (pneumonia, acute, and chronic bronchitis).10
1.3. The intellectual and health profiles of persons with These medical conditions increase demands on the health
Down syndrome care system that can be as much as 13 times higher than for
children (0e4 years) without DS.11 Health care costs have
Although about one-third of the causes of intellectual been reported to decline with age, and by adolescence the cost
disabilities (ID) remain unknown, the three major known of health care services have been reported to decrease to
causes of ID are DS, Fetal Alcohol Spectrum Disorder, and 1.1e1.7 times of those without disabilities.12,13 However,
Fragile X syndrome.6 As is the case for all persons with ID, diagnosis of congenital heart disease and level of indepen-
the degree of ID in persons with DS is determined by limi- dence influence total health care cost, independent of age.12
tations in both cognitive function and in adaptive behavior These health care estimates do not address overall cost to
(e.g., conceptual, social, and practical adaptive skills).7-9 The families affected by DS, such as special education, individual
degree of cognitive impairment is variable, with the majority transport needs, housing modifications, and related cost to
classified as mild (IQ: 50e55e69) or moderate (30e35 to family members (e.g., employment opportunities).
50e55) while a smaller percentage (<10%) are severe Survival for persons with DS has improved over the past
(IQ < 20e25 to 30e35).10,11 Adaptive behavior encompasses few decades with life expectancy nearing 60 years paralleling
conceptual skills (language, reading and writing, self direc- the improvement in social and medical support systems.14e16
tions), social skills (self esteem, gullibility, naiveté, avoids However, mortality rates of persons with DS remain higher
victimization) and practical adaptive skills (dressing, toileting, overall than those of the general population with the leading
preparing meals, using transportation, occupational skills) that causes of death being congenital anomalies (e.g., heart
allow individuals to be functional in their everyday life.10,11 defects), Alzheimer’s disease, pneumonia, leukemia, and all
Adaptive behavior may improve with early intervention but circulatory diseases (e.g., ischemic heart disease, cerebrovas-
the level of function varies according to innate capacities and cular disease).14,17,18 Death rates for persons with DS increase
social support systems (Table 1).10,11 significantly after age 40.19 The main cause for the upsurge in
mortality in middle-aged adults with DS is the deterioration in
functional abilities and rise in behavioral problems due to
Table 1 Alzheimer’s disease.20e23 Because of early onset of meno-
Description, demographics, and health profiles of persons with Down
pause, women with DS are four times more likely to develop
syndrome.
Alzheimer’s disease than their male counterparts.24 Other
Characteristic Description
disorders of aging in DS are pulmonary disorders (recurrent
Description and demographics 1. Caused by trisomy 21 pneumonia caused by recurrent aspiration), sensory impair-
2. 11.8 per 10,000 births (USA)
ments (hearing and vision), and musculoskeletal disorders
3. Mild/moderate intellectual disability
4. Limited adaptive skills (e.g., osteoporosis and orthopedic complications caused by
5. Life span near 60 years joint instability).23
Health profiles
Childhood 1. Congenital heart disease (septal and 2. Physical fitness: cardiovascular, muscle, and body
valvular defects) composition
2. Respiratory illnesses (pneumonia
and chronic bronchitis) 2.1. Cardiovascular fitness
Adulthood 1. Deterioration of functional capacities
due to dementia of Alzheimer’s type
2. Recurrent pneumonia 2.1.1. Cross-sectional studies
3. Sensory impairments (hearing and Uniformly, peak aerobic capacity (VO2peak) in both youth
vision) and adults with DS is reduced in comparison to their peers
4. Musculoskeletal disorders (joint without disabilities (WOD) and with ID but without DS.25e27
instability and osteoporosis)
This is accompanied by lower peak work rates as well as
Youth with DS: Fitness and activity 49

a faster time to exhaustion (Table 2).27 Such findings were first adults with DS (mean age 24 years) a blunted to non-existent
reported by Eberhard et al.28 in 1989, whereby they demon- catecholamine response to peak exercise. This suggests that
strated a 15% lower VO2peak using bicycle ergometry compared some portion of the autonomic pathway is dysfunctional and
to age-matched children WOD. In 1990, Fernhall et al.,26 using contributes to the lower HR response. Although diminished
a validated treadmill protocol, reported lower VO2peak in sympathoexcitation in adults with DS has been reported,30,31
adolescents with DS when compared to adolescents WOD and to date no studies have included youth with DS (Table 2).
that lack of motivation or understanding protocol instructions in Further, with higher obesity levels generally observed in
participants with DS did not contribute to their findings. persons with DS, the interaction between autonomic control
Following these initial contributions, the literature has and obesity may be an important avenue to investigate in this
consistently demonstrated lower VO2peak values when indi- population.
viduals with DS are compared to individuals WOD and with It was also postulated that due to the relatively large
ID but without DS. In the largest sample to date (total n ¼ 635; tongues (macroglossia) compared to the bony confines of the
n ¼ 133 with DS, n ¼ 180 with ID, n ¼ 322 WOD), Baynard oral cavity in persons with DS, ventilation would be restricted
et al.25 reported that VO2peak (absolute and relative values) is at high work levels and thus limit peak performance. Indeed,
lower in children and adolescents with DS through young adolescents and young adults with DS have been reported to
adulthood and into middle age, regardless of the comparison have low peak ventilation.26 However, Fernhall and Pitetti27
group. Furthermore, the authors also demonstrated VO2peak concluded that peak ventilatory parameters (e.g., ventilatory
does not significantly change after the age of w16 years.25 equivalents, and peak minute ventialation) were appropriate
Interestingly, the average VO2peak at this age in individuals for a given VO2peak. In addition, imaging work has established
with DS is similar to normative values found in middle-aged to that children with DS do not have true macroglossia, although
older persons WOD, yet individuals with DS do not appear to they have relatively large tongues compared to their oral
experience the age-related decline in VO2peak as is expected in cavity volume.32 Therefore, ventilation capacity does not
those WOD (Table 2).25 appear to restrict the peak performance of youth with DS.
Three physiologic factors that potentially contribute to low However, gaps do exist in the literature with little to no data
VO2peak values in persons with DS are autonomic dysfunction, available for additional ventilatory parameters, such as peak
reduced ventilatory capacity, and metabolic dysfunction. minute ventilation/maximal ventilatory volume or peak tidal
When considering autonomic dysfunction, lower peak heart volume/ventilatory capacity. This type of data would broaden
rate (HR) responses have been consistently reported across all our understanding of potential limitations to exercise in
age groups for persons with DS.25 The cause of lower peak HR persons with DS.
in persons with DS is still not completely understood at this Metabolic limitations have also been suggested to constrain
time, but Fernhall et al.29 demonstrated in a group of young the physical capacity of youth and young adults with DS.
However, only two studies actually measured ventilatory
Table 2
Physical fitness in youth with Down syndrome (DS). threshold in adolescents and young adults with DS.33,34
Collectively, these two studies reported that ventilatory
Characteristic Description
threshold was difficult to detect (e.g., V-slope method);
Cardiovascular fitness 1. Low peak aerobic capacity/time to exhaustion
however, in those participants where it was detectable, normal
2. Low peak heart rate
3. Peak aerobic capacity does not change ventilatory thresholds were observed when expressed as
significantly with age after w16 years a percentage of VO2peak. Given that the respiratory exchange
4. Autonomic dysfunction a primary factor ratio is related to substrate utilization and exercise intensity,
related to low fitness collection of blood lactate would assist in determining the role
5. Field tests largely support laboratory findings
that metabolic function may have in limiting exercise perfor-
6. Responsive to aerobic endurance training,
particularly with improvements in work mance in youth with DS. However, submaximal and maximal
capacity exercise blood lactate levels have not been reported in the
literature for youth with DS. In line with this, supramaximal
Muscular strength 1. Lower strength compared to individuals
without disabilities testing (e.g., Wingate testing) is not reliable enough to date to
2. Resistance training appears safe and beneficial help complete a metabolic profile in youth with DS.35
for improving strength It is important to note that several studies using field tests
3. Improved leg strength does not appear also report lower predicted VO2peak and/or exercise perfor-
improve aerobic capacity
mance in youth and young adults with DS compared to peers
Body composition 1. Youth with DS in North America and Europe WOD (Table 2).36,37 The largest field study to date to measure
are more obese/overweight vs. counterparts run performance (20-m shuttle run) had 119 youth (11e18
without disabilities
years) with DS, 394 youth with ID but without DS, and 80
2. Cause of high rate of overweight/obesity is
multifactorial (physiological, societal, youth WOD.38 Children and adolescents with ID but without
environmental, psychological, etc.) DS had better run performance than their peers with DS
3. Studies show no improvement in body independent of age, sex, and body mass index (BMI).38
composition from exercise training alone, Furthermore, those WOD had better run performance than
likely due to lack of dietary control
their peers with ID, again independent of age, sex, and BMI.38
50 K. Pitetti et al.

Thus, poor running performance of children and adolescents 2.2. Muscular strength
with ID, with and without DS, is not a consequence of age,
sex, or BMI. Few studies exist that have employed strength testing and/
Furthermore, Fernhall et al.39,40 produced a regression or training in youth with DS. Strength decrements were first
equation from the results of the 20-m shuttle run to predict characterized in youth with DS in 1994 by Cioni et al.,51 in
VO2peak in children and adolescents with ID, with and without which children and adolescents with DS (n ¼ 25) exhibited
DS. This equation was cross-validated in 2003 by Guerra weak knee extensor strength compared to a WOD control
et al.,41 however, this study consisted of a greater percentage group. Furthermore, these authors concluded that adolescents
of children and adolescents with DS and they were not able to with DS generally do not show improvements in strength
validate Fernhall’s39,40 original equation designed for persons beyond the age of 14 years.51 These findings can be extended
with ID to a sample with DS alone. The prediction of VO2peak, to the hip abductors as well.52 Interestingly, Pitetti and Fern-
from a 20-m shuttle run test, was further examined by hall53 explored the relationship between VO2peak and strength
Agiovlasitis et al.,42 whereby they reported that while shuttle in youths aged 10e17 years with ID (n ¼ 29), including eight
performance was a predictor of VO2peak in youth with DS, the children with DS, and found a significant relationship between
equation had low predictability at the individual level. knee flexion/extension strength and aerobic capacity
Therefore, the use of the regression equation developed by (r ¼ 0.56e0.62). Their data suggest that leg strength may be
Fernhall et al.39,40 to predict VO2peak in persons with ID does a limiting factor in both work and aerobic capacity in persons
not appear to be specific for youth with DS. with DS, which is also supported by similar work in adults
(Table 2).54
2.1.2. Training studies There is a small body of literature in young adults with DS
There are relatively very few longitudinal training studies (mean age w24e25 years) that further extends the limited
in persons with DS, particularly in youth. For this reason, findings in youth. Several studies have demonstrated lower
training studies in young adults with DS will be utilized here muscle strength in young adults with DS for both knee, and/or
with the understanding that it would be likely that youth with elbow extensors/flexors compared to participants WOD.55e58
DS would experience similar findings. A meta-analysis was In those studies that distinguished between individuals with
conducted by Dodd and Shields43 that included four papers, ID with or without DS, no general differences in strength were
which met their inclusion criteria.44e47 They reported that observed between these two groups, whereas the control group
aerobic training programs, which conformed to the American WOD was always stronger (65%e225% stronger). However, it
College of Sports Medicine guidelines, were effective for should be noted that while not different, Croce et al.57 have
improving VO2peak, peak ventilation, time to exhaustion, and/ reported lower hamstring to quadriceps ratios in adults with
or maximum workrate.43 DS (20%) vs. those WOD and 10% lower compared to adults
One of the first training studies in adolescents with DS was with ID without DS. This may suggest reduced muscular
conducted by Millar et al.,45 with 14 individuals participating performance and knee joint stability.
in a 10-week walking/jogging program, 3 days/week at 65%e The number of strength training intervention studies that
75% peak HR, which resulted in no change in VO2peak, but did included individuals with DS is even smaller, with two studies
improve treadmill test time by 9%.45 Training studies that known to have specifically trained youth with DS.59,60 Weber
have measured VO2peak since the report by Millar et al.45 have and French59 found that resistance training improved overall
supported those initial findings, in that improvements have muscular strength in adolescents with DS (e.g., 10 muscular
been seen in exercise/work capacity without significant tests performed), yet this study lacked a control group.
improvements in VO2peak with training interventions lasting Recently, Shields and Taylor60 demonstrated that a 10-week
12e16 weeks (Table 2).9,48 Further evidence of positive community-based progressive resistance training intervention
training effects stems from an often overlooked study, was successful in increasing lower limb strength (as well as
whereby HR recovery following a 3-min step test and resting muscle endurance) in 23 adolescents with DS, with no changes
HR were decreased in a group of 10 individuals with DS in upper limb strength. Unfortunately, no measure of work
(8e18 years) after a 13-week training program.49 Lastly, an and/or aerobic capacity was performed in these studies.59,60
interesting case study reported that a young 10.5-year-old Lastly, a case study demonstrated that a young girl with DS
female with DS following 6 weeks of training did not alter her improved general muscle strength (e.g., trunk, hip, knee, and
estimated VO2peak, but her submaximal HR was lower during shoulder) following a 10-week combined aerobic and resis-
the treadmill test, as was her respiratory rate, indicating tance program.50 These data collectively suggest that strength
improved work capacity and capacity for change.50 training in youth is beneficial. Little to no data exist on the
While aerobic training studies are limited in persons with relationship between strength training and improving work
DS, let alone youth, previous work suggests exercise training capacity in youth with DS (Table 2). A recent study by Cowley
is beneficial in youth with DS even if VO2peak itself is not et al.61 reported a small, but significant increase in relative
necessarily an expected outcome. It is especially important to VO2peak following a 10-week strength training program in
consider training studies in youth with DS in that early young adults with DS, yet no difference in absolute VO2 was
intervention to improve their work/exercise capacity could observed, suggesting this improvement was mediated by
impact the health anomalies specific to the condition of DS. weight loss (w5 kg).
Youth with DS: Fitness and activity 51

A group of progressive resistance exercise training studies adolescents with DS (10e18 years) than in children with DS
clearly demonstrate that strength training is a safe and (2e9 years).72 It is important to note that several studies do
important component of exercise prescription in young adults suggest that children and adults with developmental disabilities
with DS (24e29 years).61e64 These studies lasted 10e12 in the United States and Australia have greater prevalence rates
weeks and all employed a 2e3 days/week training of large of overweight and obesity compared to non-disabled age-
muscle groups, with improvements found in both upper- and/ matched controls. Yet these studies only have a small portion of
or lower-body strength. Interestingly, Cowley et al.61 individuals with DS included.65,66 However, the prevalence of
concomitantly measured aerobic capacity and reported no overweight/obesity has recently been questioned and it may not
change in absolute VO2peak and a small but significant be as high as previously thought.73 It is also possible interna-
decrease in relative VO2peak (Table 2). tional differences exist that need further examination. More
work will need to be conducted not only at the physiological
2.3. Body composition level, but work at the environmental, community, societal and
psychological levels to fully delineate the numerous factors
Equivocal evidence exists regarding body composition in involved in obesity (Table 2).
persons with DS. The lack of consistency may involve meth-
odological issues for measuring body composition (e.g., 3. Physical activity (PA) in youth with DS
skinfolds vs. dual energy X-ray absorptiometry) or perhaps
comparing weight status using different vehicles, such as Apart from physical fitness, PA has the potential to improve
a laboratory measures versus BMI. Another possible contrib- health in youth with DS. Although the relationship of PA and
utor may be ethnic and/or environmental issues as well. health outcomes has not been directly examined in youth with
Caution is urged when interpreting global statements on body DS, it is reasonable to assume that the findings in the general
composition in DS for these reasons. population of youth also apply to those with DS. PA may
Numerous investigations have reported that the prevalence improve the cardiovascular, metabolic, musculo-skeletal, and
of overweight and obesity are substantially higher in individ- psychosocial health profiles of all youth.74e76
uals with DS compared to their age-matched peers WOD and For this reason, the 2008 Physical Activity Guidelines for
with ID but without DS.65,66 Prasher67 reported that w48% of Americans devoted a section to children and adolescents.76
adults with DS were obese, with w27% being overweight Specifically, it is recommended that youth older than 6 years
(both sexes averaged) and that being overweight and/or obese perform 60 min of PA daily. Most of aerobic activity should be
was associated with living at home compared to group-home of either moderate or vigorous intensity, defined as 3.0e5.9
situations. This is consistent with Rubin et al’s65 report of and >5.9 metabolic equivalent units (METs), respectively;
w48% for men and w56% of women being overweight/ however, vigorous-intensity activity should be performed at
obese. Interestingly, BMI was found to decrease throughout least 3 days/week. Muscle- and bone-strengthening activities
the lifespan in males and females with DS, whereas BMI are important components of the recommended 60 min of
increases through the lifespan in the general population.67 This daily activity and each should be performed at least 3 days/
is in contrast to Baynard et al.,25 whereby they reported BMI week. Importantly, the Guidelines call for the promotion of
increases not only in the control group, but also in groups of physical activities that are age-appropriate, enjoyable, and
ID, with and without DS, up through middle-age. Prasher67 offer variety. Recent evidence, however, suggests that most
was unable to adequately explain why BMI would decrease American youthdespecially adolescentsddo not meet the
from young adulthood (16e19 years) through the 20 s into the required amount of daily PA and that their activity levels
60 s. Perhaps the Alzheimer’s issues that individuals with DS decline as they grow.77 The issues of interest therefore are: (a)
often experience could provide a possible explanation. whether the PA levels of youth with DS differ from those of
Early work by Sharav and Bowman68 demonstrated that youth WOD, and (b) whether youth with DS meet the current
young children with DS (w4e5 years) were not different from recommendations for PA.
their siblings WOD in BMI. Additionally, Luke et al.69 reported Answering these questions is difficult because research on
non-significant but higher BMI and lower fat-free mass in PA in youth with DS is limited. In a review of research pub-
children with DS (9 years old) versus a control group WOD, lished prior to 2008,78 the authors could not conclude whether
whereas other investigators have observed higher BMIs and/or the PA levels of youth with ID, including those of youth with
percentage of body fat in youth with DS compared to peers DS, are different from those of children WOD. As the authors
WOD.52,70 However, these studies also included adults in their explained, this was due to methodological problems of
samples.52,70 previous research such as insufficient description of samples
In contrast to Luke et al.,69 others have observed lower total and questionable applicability of objective or subjective
muscle mass in persons with DS versus individuals WOD.70 measurements of PA to youth with ID.
This has been further substantiated recently in Spanish youth
with DS that did exhibit higher body fat content and lower lean 3.1. Measurement of PA in youth with DS
mass than peers WOD.71 In Greece, researchers observed that
22% of adolescents in their sample were obese and that percent Subjective PA assessments using questionnaires are not as
body fat, BMI, fat mass and fat-free mass were also greater in accurate as objective ones.77 This difficulty is magnified in
52 K. Pitetti et al.

youth with DS by the need to use parental or caregiver/teacher infants with typical development.95 In contrast, analyzing
proxy reports.78 One study demonstrated questionable accu- video recordings, others reported no differences between
racy of PA measurement by proxy reports for adults with ID.79 infants with and without DS in the total amount of leg
It is possible that subjective assessment of PA in youth with movements93 which are presumably more relevant for the
DS may benefit if questionnaires are obtained from both development of walking. Subsequently, infants with DS were
parents and teachers or caregivers; such practice may offer found to show more low-intensity and less high-intensity leg
a more accurate representation of the activities youths with DS motor activity than infants with typical development.96,97
engage in throughout the day. Nevertheless, to our knowledge, Furthermore, greater amount of high-intensity activity at
the psychometric properties of subjective measures have not about 1 year of age was associated with earlier walking onset
been examined in youth with DS. Finally, in-depth inter- in infants with DS.96,97 Finally, a randomized controlled study
viewsdtypically with parentsddo not allow for a quantifica- showed that infants with DS, who underwent home-based
tion of the amount of PA performed by youth with DS. stepping training while supported over customized treadmills,
Objective PA measurements with accelerometers or achieved independent walking by an average of 101 days
pedometers are preferable, but they should be used carefully in earlier than infants with DS not undertaking this intervention;
youth with DS. Pedometers appear valid and reliable during the intervention was initiated once infants with DS could sit
locomotion in youth with intellectual or developmental independently and it was conducted 5 days/week, 8 min/day,
disabilities,80,81 but their accuracy may be compromised until the onset of independent walking.94 Taken together, these
during games and sport activities conducted in physical data suggest that alterations in PA patterns in infants with DS
education.82 Additionally, spring-levered pedometers are less are associated with their motor development, thus supporting
accurate than piezoelectric in people with DS.83 Furthermore, the need for early interventions.96
using step-rate cut-points to estimate moderate- and vigorous- The objective data on PA levels of children and adolescents
intensity activity in youth with DS may be problematic. Adults with DS are limited and provide somewhat conflicting results.
with DS have lower step-rate cut-points for activity intensity Non-resting total energy expenditure measured with doubly-
even when accounting for their shorter height compared to labeled water did not differ between 5- and 11-year-old chil-
adults without DS84dthis may potentially apply to youth with dren with DS from the U.S. and peers WOD of similar age and
DS. Similarly, accelerometry-determined cut-points for BMI.98 In another U.S. study, the amounts of total, low-
moderate- and vigorous-intensity activity developed for youth intensity, and moderateeintensity activity, as well as time
WOD may not be applicable to youth with DS. This has been spent sedentary measured with hip-accelerometry over 7 days
demonstrated for adults with DS85 and it has been suggested to did not differ between children with DS aged 3e10 years and
be partially due to an altered gait pattern that increases the similarly-aged siblings WOD;90 however, the children with DS
energy expenditure.86 It is possible that this also applies to participated in less and shorter bouts of vigorous-intensity
youth with DS who also exhibit altered gait patterns,87,88 activity than their siblings. Notably, children both with and
potentially duedat least in partdto deficits of the cere- without DS in that study exceeded the recommendations for
bellum.89 Additionally, cut-offs developed in youth WOD may total and vigorous-intensity aerobic activity. Similarly,
be inappropriate for those with DS because the latter have very Australian children and adolescents with DS met on average
low cardiovascular fitness. Finally, there have been some the recommended amounts of moderate- and vigorous-inten-
reports of compliance issues with accelerometers secured at sity activity as measured by hip-accelerometry91 and also
the hip in youth with DS.90,91 Although these difficulties are appeared more active than U.S. youth.77 But there was large
not extensive, they highlight the need for adequate familiar- between-person variability in activity levels and 58% of the
ization and parental supervision. Alternately, researchers could children with DS did not meet the recommended amount. In
consider other placement sites, such as the wrist, where the the same study, youths with DS aged 13e17 years showed
accelerometer could be secured with an irremovable strap. lower total, moderate-, and vigorous-intensity activity than
These measurement issues should be collectively considered those aged 7e12 years, indicating a possible age-associated
when evaluating previous reports of PA in youth with DS. decline in PA. Recent acceleromety-derived data from the U.S.
demonstrated that, on average, children and adolescents with
3.2. What are the PA levels of youth with DS? DS did not engage in moderate-to-vigorous PA for 60 min/
day.99 Furthermore, PA was lower and sedentary behavior was
In infants with DS, movementdespecially of the higher in older youths with DS compared to younger ones.
legsdmay be important for motor development. Children with Another U.S. study using accelerometry100 showed that, prior
DS appear to reach stages in motor development with some to an intervention, youth with DS aged 8e15 years were active
delay.92 A notable example is the onset of independent at moderate-to-vigorous levels for an average of about 43 min,
walking which occurs about a year later (wage 2) in children although there was significant between-people variation in this
with DS than children with typical development.93,94 It is value. Finally, cross-sectional accelerometry-determined data
possible that low levels of motor activity during early infancy from England demonstrated lower amount and faster age-
may contribute to this phenomenon. One study found that, associated decline of moderate-to-vigorous activity in people
during the first 6 months of life, infants with DS show lower with DS than people with ID but without DS across the life-
levels of general movements as measured by observation than span (Table 3).101
Youth with DS: Fitness and activity 53

Table 3 proportion of children and adolescents with DS may not meet


Physical activity in youth with Down syndrome (DS). the recommended amount of daily aerobic activity.
Characteristic Description
Physical activity 1. Likely declines during the growing years 3.3. Determinants of PA
2. A large proportion of youth with DS does
not meet the recommendation for daily The study of the determinants of PA in youth with DS is
aerobic activity
3. Youth with DS participate in a wide variety
still in its infancy. Following the approach of the International
of culturally-relevant leisure activities Classification of Functioning, Disability and Health,105 PA
may be influenced by a child’s health status, functional profile,
Barriers to physical activity
Within the person 1. Health problems
participation in life activities, and contextual factorsdeither
2. Low fitness levels within the person or in the environment. DS is associated with
3. Low motor skills many health conditions, but there is great variability in the
Environmental 1. Lack of accessible, inclusive, and properly number and extent of conditions that youth with DS exhibit. In
designed programs one study, medical issues were not associated with function
2. Transportation difficulties
3. Negative attitudes towards people with
among youth with DS.106 It is reasonable, however, to assume
disabilities that acute health problems might present barriers to PA for
4. Competing family responsibilities youth with DS and that, when medical issues are efficiently
5. Parental education and income overcome, PA may be facilitated.
6. Lack of friends The functional profiles of youth with DS may also be
Facilitators of physical activity related to their PA levels. Quantitative and qualitative data
Within the person 1. Knowledge on physical activity and health suggest that lower cognitive, behavioral, and motor skills may
2. Positive attitude towards exercise present barriers to PA of youth with DS.103,104,107,108 Some
3. Determination to succeed
Environmental 1. Positive social and familial attitudes
theorists also argue that people with DS may have a tendency
2. Knowledgeable professionals for slower, safer, and more accurate movement patterns due to
3. Structured programs that . interactions between neurological, environmental, and task-
1) Are adapted to the needs of youth with DS associated constraints.109 Additionally, the very low aerobic
2) Provide knowledge on physical activity and muscular fitness of youth with DS may potentially affect
and health their involvement in physical activities, especially of higher
3) Are inclusive
intensities, but this has not been directly examined (Table 3).
4) Promote social interaction and enjoyment
Contextual factors within the person may also be at play. In
support of this argument, the aforementioned lower partici-
Some subjective datadobtained with parental reports or in- pation in vigorous-intensity activities of children with DS
depth interviewsdsupplement the literature on PA of youth compared to their siblings90 was collectively explained by age,
with DS. Canadian children with DS aged 2e14 years were sex, race, ethnicity, income, maternal education, and BMI. It is
rated by their parents as less active and as spending more time difficult, however, to determine the individual contributions of
indoors compared to siblings without DS,68 although all youth these factors to PA of the children in that study. As previously
in this study with DS participated in organized sports at least discussed, PA in youth with DS may decline with age,91,101,104
once per week.69 Among 38 Australian youth with DS aged although one study did not find differences in sport partici-
11e18 years, only two engaged in PA more than 3 days/ pation between children and adolescents with DS.103
weekda finding suggestive of low PA levels.102 In a second Furthermore, whether PA differs between sexes in youth
Australian study, less than one third of 208 youth with DS with DS, as in youth WOD,74,77 is not known. Data from
aged 5e18 years were found to be active at moderate-to- Taiwan, China showed no difference in recreational and sport
vigorous intensity for 60 min/day, although most participated participation between boys and girls with DS.108 In contrast,
in sports.103 Finally, during in-depth interviews, parents of another study conducted in Taiwan, China demonstrated that,
U.S. preschoolers with DS perceived their children as natu- among youth with ID including DS, boys and those who had
rally active. In contrast, parents of elementary-school students positive attitudes towards exercise were more likely to be
perceived a gradual decrease in their children’s interest for PA, regularly active after school.110
supporting the possibility for an age-associated decline among It is also very likely that the social and physical environ-
youth with DS.104 ment contributes to the PA levels of children and adolescents
The existing objective and subjective data do not allow us with DS (Table 3). This is supported by a wide variation in
to conclude with confidence whether youth with DS have types of leisure participation among youth with DS around the
lower PA levels than youth WOD, but this appears likely. world.68,102,103,108,110,111 Furthermore, it has been argued that
Additionally, it is not known if youth with DS meet the inactivity among youth with DS may be a learned behavior
required amounts of muscle- and bone-strengthening activi- partially resulting from exclusionary practices.112 Importantly,
ties. Although there are no longitudinal data on the develop- lack of accessible, inclusive, and appropriately-designed
mental course of PA in youth with DS, it is likely that PA programs, as well as negative attitudes, transportation prob-
declines with age in this population. Furthermore, a large lems, competing family responsibilities, parental education
54 K. Pitetti et al.

and income, and lack of friends, all reportedly present barriers training utilizing endurance and/or resistance exercise appears
to PA for youth with DS.90,104,107 beneficial for youth with DS. The role of overweight/obesity
in youth with DS does not currently explain lower aerobic
3.4. PA promotion capacities in persons with DS, yet more work needs to be
conducted to completely understand its role with regards to
Youth with DS reportedly participate in a wide range of aerobic capacity and PA in this population. Studies involving
recreational activities. Examples include walking, swimming, multi-factorial issues (e.g., physiological, environmental, etc.)
bowling, dancing, and team sports.68,102,103,108,110,111 The common to youth with DS are necessary to understand how to
types of leisure participation among youth with DS likely vary optimize quality of life in this population.
around the world; for example, swimming appears common in
Australia,102,103 ice-skating in Canada,68 and bicycling in
Taiwan, China.108 Notably, walking is one of the most 4.2. PA
commonly performed activities among youth with
DS,108,110,111 suggesting that their altered gait pattern87,88 may Cross-sectional data suggest that PA likely declines with
not present a barrier to PA. Supporting this proposition, chil- growth in youth with DS and that a large proportion of these
dren and adolescents with DS exhibit functional independence youths do not meet the recommended amount of daily aerobic
in locomotion tasks.106 Therefore, youth with DS have the activity. Effective PA promotion should be multi-factorialdit
potential to participate in all types of culturally-relevant should be adapted to the physiological, cognitive, and psycho-
physical activities. social profiles of youth with DS, but should also consider
Unfortunately, very little data exist on interventions to environmental modifications. There is a need to improve the
promote PA in youth with DS. A randomized-controlled study assessment of PA with objective and subjective approaches.
found that youth with DS who learned to ride a bicycle Furthermore, longitudinal research is needed to examine how
increased their PA levels about 1 year after the intervention,100 PA levels change and what factors contribute to them during
suggesting that motor skill development may improve long- growth in youth with DS. Finally, it is also important to
term PA. Furthermore, well-designed school programs allow examine the effectiveness of specific interventions aimed at
students with ID including those with DS to meet the PA increasing PA.
recommendations.113 It should also be considered that 12
weeks of exercise training, combined with health education,
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