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Current Trends in Pediatric Physical Therapy Practice for Children With Down Syndrome

Johnson, Rebekah PT; Looper, Julia PT, PhD; Fiss, Alyssa PT, PhD

Author Information
Pediatric Physical Therapy: April 2021 - Volume 33 - Issue 2 - p 74-81
doi: 10.1097/PEP.0000000000000781


Down syndrome (DS) is the most common chromosomal condition in the United States, occurring in 1 per 700 live births.1 Children with DS typically present with multiple impairments of body function and structure such as cognitive impairment, hypotonia, ligamentous laxity, decreased postural control and balance, decreased strength, and increased risk of congenital heart defects. These impairments are thought to contribute to activity limitations such as delayed motor development. This can result in a decreased ability to keep up with peers and participate in play and recreational activities.2

Children with DS have a decreased rate of motor skill acquisition compared with peers who are developing typically2–4 and they have atypical movement patterns.5 Palisano and colleagues2 established motor growth curves for children with DS and estimated the probability of children achieving motor skills by specific ages. They noted that the probabilities that children with DS would sit by 12 months and walk by 24 months were 78% and 40%, respectively. This is approximately twice the age that these skills are generally observed in children who are developing typically. Research suggests that children with DS require additional time and practice to learn more complex motor skills, particularly movements that require speed, postural control, and balance, accounting for these delays.2,3 Because of these common motor limitations, pediatric physical therapists are frequently involved in early service delivery for children with DS.

Evidence to guide physical therapy (PT) assessment and intervention for children with DS is limited. Available research supports that PT intervention can lead to improvements in impairments and activity limitations for individuals with DS. For example, exercise programs for individuals with DS reported increased strength,6 improved balance,6–9 improved motor coordination,10 and improved cardiovascular fitness.11 Ulrich and colleagues12 reported that infants with DS demonstrated earlier onset of independent walking after a parent-delivered treadmill training protocol. The use of sensorimotor playgroups in addition to PT services for toddlers with DS promoted greater improvement in overall motor development.13 Despite these findings, selection of the most appropriate interventions for an individual with DS is often dictated primarily by the treating therapists' experience and preference. Many gaps exist in the literature to support the most effective and appropriate interventions for children with DS.

While therapists should design interventions to meet the specific needs of each child, the common impairments seen in DS suggest that there likely should be a core set of interventions used by physical therapists to treat children with DS. In order to better inform practicing physical therapists, to guide future clinical research, and to facilitate the development of clear clinical practice guidelines, it is important to assess the current state of practice for children with DS in the United States. Describing current PT practice trends may identify commonly observed PT-related impairments and activity limitations as well as the current use of assessment measures and interventions to provide a foundation to build the evidence base for meeting the needs of children with DS. This will also allow for comparison of current trends to the established research literature, highlighting areas for further exploration. Therefore, the purpose of this study is to report the current pediatric PT practice in terms of observed PT-related impairments and activity limitations and applied assessment measures and interventions for children with DS.



We purchased 1000 random addresses of pediatric physical therapists from the APTA, which were randomly selected to proportionately represent the state demographics of the APTA American Academy of Pediatric Physical Therapy (APPT) membership. One hundred twenty participants completed the survey. Twelve individuals were excluded from the study because they had not treated a child with DS in the last 12 months, leading to a total of 108 participants. The participants represented 34 states and 2 US territories, Guam and Puerto Rico, and 7 APTA APPT regions (Table 1). This study was approved by the University of Puget Sound and Mercer University Institutional Review Boards.

TABLE 1 - Demographic Data of Study Participants
Demographic Information Mean (SD)
Experience in physical therapy, y 19 (13)
Experience in pediatrics, y 17 (12)
Caseload is Down syndrome, % 13 (14)
Mode (n, %)
N = 108
Practice settings
Early intervention Early intervention (34, 31%)
Outpatient hospital
Outpatient private practice
Primary age range of patients 0-3 y (58, 54%)
Specialty certification (PCS) PCS (43, 40%)

Survey Development

We developed a series of survey questions to gain an understanding of current PT practice for children with DS. Questions included (1) list the top 2 to 3 assessment tools/outcome measures that you use with patients with DS; (2) list the 3 to 5 most common PT-related impairments and/or activity limitations you see in patients with DS; (3) list the top 3 to 5 interventions you use with patients with DS; (4) describe any novel or innovative treatment you use with children with DS; and (5) list any interventions you think are effective but do not use because of limited resources or other circumstances. The survey was reviewed and piloted by practicing pediatric physical therapists. Based on feedback and pilot results, minor revisions were made to the survey questions.


Participants received an invitation to participate in the survey through the mail. The invitation directed them to the SurveyMonkey Web site where the survey was administered. The mailed invitations included a unique log-in identifier to eliminate multiple responses from a single participant. Additionally, a link to the survey was posted in the Academy of Pediatric Physical Therapy newsletter. Prior to beginning the survey, participants consented to participate in the study. The survey was open from January 2018 to July 2018.

Data Analysis

Using a constant comparative method, responses from each question were analyzed. The researchers independently completed initial open coding for content for each survey question. The researchers met to review and come to a consensus on the potential codes and create categories. The researchers then independently reviewed and coded the survey responses for each question based on the agreed-upon category and code definitions and added additional codes as necessary. In cases where 1 response covered 2 separate categories, responses were placed in both categories. The coding was then refined and agreed upon through discussion for each question. Responses that best exemplified the data were pulled from each category and definitions of each category were finalized through consensus of the team members. The same process was used to code the data according to the International Classification of Functioning, Disability and Health (ICF) model including body function and structure, activity, or participation.


A total of 120 responses were recorded (12% response rate). Data from 12 respondents who reported not having treated a child with DS within the last 12 months were excluded from data analysis. The responses of the remaining 108 participants were analyzed.

Assessment Tools

There were 248 responses identifying 39 assessment tools or measures. Of these responses, 23 assessment tools were reported by more than 1 therapist (Table 2). In addition, 16 other assessment tools or measures were reported by a single therapist (see Supplemental Digital Content 1, available at:

TABLE 2 - Assessment Tools Commonly Used With Children With Down Syndrome
ICF Domain Assessment Tool n (%)
N = 248
Activity Peabody Developmental Motor Scales-2nd Edition (PDMS-2) 58 (23.4)
Activity Gross Motor Function Measure (GMFM) 38 (15.3)
Activity Alberta Infant Motor Scales (AIMS) 16 (6.5)
Activity Bruininks-Oseretsky Test of Motor Proficiency-2 (BOT-2) 13 (5.2)
Activity Hawaii Early Learning Profile (HELP) 13 (5.2)
Activity Battelle Developmental Inventory-II 12 (4.8)
Activity Bayley Scales of Infant and Toddler Developmental 10 (4.0)
Activity Developmental Assessment of Young Children-2 (DAYC-2) 10 (4.0)
Activity Pediatric Evaluation of Disability Inventory (PEDI)/PEDI-Computerized Adaptive Testing (PEDI-CAT) 10 (4.0)
Activity/participation School Function Assessment (SFA) 8 (3.2)
Body function Balance Tests (Pediatric Balance Scale, Berg Balance Test, Pediatric Stand and Reach, Single Limb Stance) 6 (2.4)
Activity Timed Up and Down stairs 5 (2.0)
All Observation 5 (2.0)
Body function Strength Assessment (functional strength assessment, dynamic strength, core strength) 4 (1.6)
Activity Timed walking test (30-s walk test, 2-min walk test, 6-min walk test, timed 50-ft walk/run) 4 (1.6)
Activity Assessment, Evaluation, and Programming System for Infants and Children (AEPS) Second Edition 3 (1.2)
Activity Functional assessment 3 (1.2)
Body function/activity Gait analysis 3 (1.2)
Activity Test of Infant Motor Performance (TIMP) 3 (1.2)
Activity Early Learning Accomplishment Profile (E-LAP) 2 (0.8)
Activity Mobility Rubrics 2 (0.8)
Activity Test of Gross Motor Development-2 (TGMD-2) 2 (0.8)
Activity Timed Up and Go 2 (0.8)
Abbreviation: ICF, International Classification of Functioning, Disability and Health.

PT Problems and Interventions

Each question allowed up to 5 responses, generating a total of 443 questions regarding PT problems and 390 responses to PT interventions. These responses were specific interventions that the therapist used. In order to analyze the data, researchers grouped the data into the thematic categories (Table 3). Seventy percent of the PT problems reported were categorized as impairments related to body, structure, and function, 24% were related to activity deficits, and 6% to participation limitations. Among the specific proposed interventions, 60% addressed body, structure, and function, 32% addressed activities, and 9% addressed participation.

TABLE 3 - Reported Physical Therapy Problems and Interventions for Children With Down Syndrome
Category: Definition Physical Therapy Problems Intervention
Joint stability and alignment
Joint stability: resistance offered by various musculoskeletal tissues that surround a skeletal joint 26% 18%
Alignment: position or orientation of individual segments in relation to immediately adjacent segments as well as global relationships between body parts
Functional motor skills: developmental motor milestones, which affect a child's physical and functional capacity and are attained through interaction and exploration of the environment 22% 22%
Muscle performance: composed of 3 main components: strength, power, and endurance, together creating an individual's functional muscular capacity 17% 15%
Balance: multidimensional concept that involves both postural balance and locomotor stability, allowing an individual to maintain a static posture within their base of support or move across unstable surfaces without falling 10% 7%
Neuromotor control: concepts related to the interaction between brain activity and muscular activity or how complex movements are coordinated, with the exception of balance, which was categorized independently 9% 11%
Cardiopulmonary: response of the circulatory and respiratory systems to sustain functional physical activity and delay fatigue 6% 1%
Participation: child's ability to manage their environment, play with peers, interact with others, and complete activities of daily living 3% 7%
Cognitive and adaptive behavior: ability to think, to learn, and to be motivated to complete a given task 2% 0%
Sensory awareness: appropriate detection, integration, and interpretation of input into the nervous system 2% 2%
Oral communication: collaboration of the oral motor system and brain for the transmission of information 1% 0%
Biometrics: physical characteristics such as height and weight 1% 0%
Pain: mechanical joint pain created as a result of compensatory movements possibly interfering with participation <1% <1%
Other: answers to question 2 that did not fall into one definitive category from question 1 N/A 16%

Novel or Innovative Interventions

Therapists were also asked to describe novel or innovative treatment they use with children with DS. There were 91 responses of novel or innovative interventions by therapists. Thirty-four therapists specifically indicated they did not use novel or innovative interventions. The 91 responses identified 25 specific interventions that therapists perceived to be novel and innovative, 11 of which were identified by more than 1 respondent (Table 4).

TABLE 4 - Unique Interventions and Interventions Underused due to Resource or Other Limitations
“Unique” Interventions Identified n (%)
N = 91
Wearable supports (abdominal binders, Dragonfly, Hip Helpers, Spio, TheraTogs, waistbands) 8 (10.4)
Sports (adapted dance, adapted soccer, gymnastics, rock climbing, special Olympics, swimming) 6 (7.8)
Treadmill training 5 (6.5)
Aquatics 4 (5.2)
KinesioTape 4 (5.2)
Yoga 4 (5.2)
Hippotherapy/therapeutic riding 3 (3.9)
Playground/community environments 3 (3.9)
Cuevas Medek 2 (2.6)
Group intervention 2 (2.6)
Total motion release 2 (2.6)
Interventions Not Completed due to Limited Resources or Other Limitations n (%)
N = 72
Treadmill training 23 (31.9)
TheraTogs 5 (6.9)
Increased intensity/frequency of intervention 3 (4.2)
Aquatics 3 (4.2)
Group therapy sessions 2 (2.8)
Hippotherapy 2 (2.8)
Locomotor training/harness system 2 (2.8)
Orthoses/supramalleolar orthoses/splints 2 (2.8)

Interventions Not Used Because of Limited Resources or Other Limitations

There were 72 total responses of interventions that therapists believed were effective but did not use due to limited resources or other limitations; 23 therapists responded no to this question. These 72 responses included 17 categories of interventions, 8 of which were identified by more than 1 therapist (Table 4).


The purpose of this study was to examine the breadth of practice with physical therapists who are currently treating children with DS. A variety of approaches and interventions were noted from respondents. In terms of standardized testing, the responding therapists identified several norm-referenced and criterion-referenced assessment tools commonly used in clinical practice with children with DS. Norm-referenced measures are intended to compare an individual's current performance to the average performance of a normative sample of similar-aged peers. Criterion-referenced measures compare the individual's performance to an established reference standard or performance level. The majority of the reported assessment tools lack information related to the reliability and validity of the tools specific to individuals with DS.

The most commonly identified assessment tool is the norm-referenced, Peabody Developmental Motor Scales-2nd Edition (PDMS-2). The PDMS-2 is frequently used to document developmental delay in children with DS younger than 6 years. Palisano and colleagues14 examined the validity of the PDMS Gross Motor Scale (PDMS-GM) for use as an evaluative measure for infants receiving PT, including infants with DS. Results indicate the minimal clinically important difference on the PDMS-GM is 10 scaled points. The authors concluded that the PDMS-GM should not be used to assess the direct effects of PT intervention but may be useful when included as a global developmental measure over time, when combined with other measures. Available research used the first edition of the PDMS-GM, which is currently not used in practice. There is no research examining the PDMS-2.

Limited information also supports the use of the Battelle Developmental Inventory-II and the Bruininks-Oseretsky Test of Motor Proficiency (BOT). Matson and colleagues15 investigated the use of the Battelle Developmental Inventory-II with infants with prematurity, DS, or general developmental delay, and reported that children with DS and general developmental delay had lower scores on the personal-social and motor domains of development. Connolly and Michael16 examined the performance of children with cognitive impairments including children with DS on the original version of the BOT. The authors concluded that children with DS had significantly lower scores than children without DS on running speed, balance, strength, and visual motor control, as well as gross motor and fine motor composite scores. The results of these studies provide some insight into potential expected scores for children with DS and highlight the need for additional research on reliability of scoring of various norm-referenced measures.

The Gross Motor Function Measure-88 (GMFM-88) was the second most commonly identified assessment measure for children with DS. The GMFM-88 is a criterion-referenced measure intended to evaluate change over time in gross motor skills. Although it was originally developed as a measure for children with cerebral palsy, the GMFM-88 has been reported to be valid, reliable, and responsive to change in gross motor function of children with DS.17 Other criterion-referenced measures were reported by multiple respondents, and tended to focus on the impairment level. Various balance measures have been reported in the literature with individuals with DS. Villamonte et al18 assessed the test-retest reliability of 16 balance items with individuals with DS from 5 to 31 years of age. They reported variability in reliability of the items between sexes and between children and adults, and recommend that results of balance testing should be interpreted with caution. Aranha and colleagues19 examined the timed standing balance test and reported excellent reliability (intraclass correlation coefficient = 0.91-0.93) and sensitivity to change for children with DS 8 to 17 years of age.

Timed walking tests have been explored with individuals with DS. The 6-minute walk test (6MWT) was reported to be valid20 and reliable21,22 for use with individuals with DS. However, practice trials are recommended to account for a learning effect when introducing the 6MWT.22 The Timed Up and Go test (TUG), which also provides an assessment of balance, has excellent reliability and validity as an assessment of functional mobility for children with DS 3 to 18 years of age,23 and discriminant validity between age categories of adults with DS (18-25, 26-35, 36-45, and >45 years).24 Additionally, the minimal detectable change of the TUG has been reported to be 1.26 seconds.25

Although we did not specifically ask the purpose for use of these various measures, we speculate that many of the norm-referenced tests are selected to meet program eligibility or insurance reimbursement requirements to demonstrate delays in development. However, these measures are less appropriate to track change in abilities over time. The criterion-referenced measures identified are largely supported with evidence for use with individuals with DS. Additional research on the psychometrics such as reliability, validity, responsiveness, minimal clinically important difference, and minimal detectable change of tests and measures specific to DS would strengthen the recommendations for types of measures used and reduce some of the variability in the selection of measures.

The most commonly identified PT-related problems were functional motor skills, joint stability, and muscle performance. These aligned with the most common identified treatments of functional motor skills, joint stability, and alignment, as well as balance and neuromotor control. Responders observed and treated deficits in “functional motor skills” (22.1% observed and 22.2% treated) and “muscle performance” (17% observed and 15% treated) at nearly the same proportion. This suggests that, in many cases, surveyed physical therapists chose interventions directly related to the observed deficits in their patients with DS. This direct relationship was not seen within other categories. There was a discrepancy between joint stability impairments and interventions. More physical therapists' responses noted joint stability as an impairment (18%) in their patients with DS than provided direct treatment (6%) within this category. One possible explanation for this is that PTs may be treating joint stability with a variety of direct (compression bracing, therapeutic taping, and vibration) and indirect (muscle strength, balance, postural control, and alignment) interventions. Therefore, it would be expected that the percentage of responses attributed to joint stability would not be the same for PT problems and PT interventions. This finding suggests flexibility within the mindset of current pediatric PTs to develop an individualized treatment plan for their patients, using a variety of approaches to treat the same PT-related problem, such as joint stability.

There is emerging research to support the most common PT interventions reported. The largest intervention category was functional motor skills. The survey responses included developmental skills, gait, and transfers. The responses included varying techniques such as using natural environments, repetitive practice, and developing midrange control. The body of research supports gait training. Body weight–supported treadmill training for children with DS prior to walking onset has a variety of benefits, including a decrease in the time it takes to learn to walk,12 improved gait patterns,26–28 and improved physical activity.29 Adolescents with DS who walk on a treadmill also show improvements in walking capacity30 as well as decreases in blood pressure31 and oxidative stress.32,33 Another functional skill intervention that has been studied in children with DS is early prone positioning. Wentz34 reported that consistent tummy time can lead to a decrease in motor delay in infants with DS. There is limited research related to other specific functional motor skill interventions for children with DS. However, the motor learning literature supports that children with DS do improve task performance and generalizability with prolonged repeated practice.35 This suggests that task-specific practice, like those described by physical therapists, may be beneficial if the dosing is correct.

Another common intervention category was joint stability and alignment. Therapists reported using many interventions such as orthotic garments, abdominal binders, KinesioTape, and lower extremity orthoses. There is little research for the use of orthotic garments and abdominal binders for children with DS specifically. However, there is a pilot study on the use of neuromuscular taping of the upper extremity to improve writing tasks in children with DS, possibly by increasing proprioceptive signals.36 This suggests there could be a neuromuscular benefit to approximating joints. The use of lower extremity orthoses to improve foot and ankle alignment is an effective intervention for children with DS—leading to improved gait parameters,37 improved balance,38 improved gross motor skills,38,39 and participation.39 However, there is some evidence that therapists should be cautious about orthotic use before children walk, as it may alter the neuromotor development of the foot and ankle. When comparing new walkers who learned to walk with and without orthoses in a barefoot test, the children who learned to walk with orthoses had lower gross motor skill scores than those who learned to walk without orthoses.40 This suggests that there may be developmentally sensitive periods for specific interventions that we do not understand in children with DS. Joint stability and alignment may be an important area for intervention in children with DS. Although the research is limited, it suggests that alignment is an important component to improving motor outcomes in children with DS.

A third common intervention category reported by physical therapists was muscle performance. This category included strength and power interventions for both isolated muscle groups and within functional activities. The research supports that focus on strength and power is appropriate interventions for children with DS. Progressive resistance training leads to strength gains in children and adolescents with DS7,41,42 and may lead to improved physical activity levels.42 Additionally, core training may contribute to improved functional balance and stability.43 Power, or rapid generation of force, has been studied in children with DS using jumping. Children and adolescents who participated in a conditioning program that had a jump training component displayed an increase in lean mass44 and an increase in bone mass.45 Training that focuses on muscle performance appears to be beneficial for multiple body systems as well as for functional movement.

One of the least commonly reported intervention categories was with the cardiopulmonary system. Six percent of physical therapist respondents noted cardiopulmonary health as a common PT problem while only 1% of reported interventions were related to this area. Interestingly, emerging research supports PT to address cardiopulmonary health in children with DS. In a case study, Lewis and Fragala-Pinkham11 found that an aerobic and strength training program led to improvements in submaximal heart rate, respiration rate, and aerobic performance as well as strength and power measures in a child with DS. A meta-analysis across 4 studies reported that low-impact cardiovascular exercise for 30 minutes 3 times per week for 10 to 16 weeks improved peak oxygen consumption, peak minute ventilation, time to exhaustion, and maximum workload in people with DS.46 This intervention can be easily incorporated into the treatment paradigm or home exercise program. Cardiopulmonary-focused interventions are within a PT's scope of practice. Children with DS would benefit from increased attention to improving cardiopulmonary health during PT treatment.

Beyond categorical comparisons, this survey also asked PT-related problems (question 2) and their relation to commonly used interventions (question 3) through the lens of the ICF. There was an emphasis on body structure and function (70% reported PT problems and 60% reported interventions) over activities (24% reported PT problems and 32% reported interventions) and participation (6% reported PT problems and 9% reported interventions). Despite this overall emphasis, PTs reported PT-related problems in the ICF category of body function and structure more frequently than they provided treatment at this level of the ICF. This suggests a disconnect between evaluation and treatment in children with DS. The ICF level of the therapists' commonly identified problems does not match the ICF level of their commonly identified treatments—suggesting either different priorities during examination and treatment, which could lead to misaligned therapy goals or an expectation that intervening on 1 level of the ICF will lead to changes at another level of the ICF, which is not supported by the literature.

Finally, PTs reported interventions that they find unique or interventions that they would like to use but do not have the resources (Table 4). Many items appear on both lists suggesting that the interventions may be considered beneficial for this population but are less available due to limited resources, including access or funding. The identified interventions demonstrate the breadth of PT practice for children with DS as well as the desire of PTs to meet the needs of the families they serve. Of these interventions, treadmill training, orthoses, and hippotherapy have research to support their use. The research for treadmill training and lower extremity orthotic use has been summarized previously. The research supporting hippotherapy is preliminary; however, it suggests that hippotherapy may lead to improved balance47,48 and improved motor function, including gait.47 None of the research had a comparison group; thus, it is unclear whether these changes are due to hippotherapy or whether hippotherapy is better or worse at obtaining these outcomes than other PT treatment. While some of these interventions are supported in the literature with established or emerging evidence about their use for children with DS, additional research is needed to help delineate the effectiveness of many of the identified interventions. This will help PTs overcome access or reimbursement challenges.

In conducting and analyzing the results of this survey, the researchers found a wide breadth of practice for children with DS. In a time of values-based reimbursement, we need to have evidence for what if effective and for whom. Because physical therapists who treat children with DS do not have valid evidence, they often have to make clinical decisions based on traditional practice or on interventions that were developed and designed for other populations. This leads to therapists using treatments that may not be effective. The community of physical therapists and researchers who treat children with DS need to come together and work to determine which interventions are most effective and which are simply following tradition.


Limitations of this survey study included a relatively low response rate from therapists approached to participate in this study. The response rate was hindered by several survey implementation issues. In order to distribute the survey to a representative sample of APTA APPT members, we requested contact information from the APTA. While mailing addresses are available, email addresses are not permitted to be shared. As a result, in our invitation letter, we included a link to our survey Web site. We believe this decreased the potential response rate due to required extra steps from respondents. Additionally, the member mailing list may only be used once; therefore, follow-up reminder notifications were not permitted to be mailed.

Another potential limitation of this survey was the inability to make observations regarding interventions which did not clearly delineate the goals of the practicing physical therapist such as “therapy ball,” “home exercise program,” “yoga,” or “aquatic therapy.” Although the researchers created an “other” category for interventions which were not clearly defined to help eliminate researcher bias, the researchers' views may have influenced the interpretation of the participants' responses or the categorization of responses. Additionally, the syntax of the question regarding identified PT-related problems may have limited participation-based answers; this may have influenced the increased percentage of participants who reported impairments of body structure and function. Likewise, the survey design allowed only up to 5 responses per question, suggesting that the surveyed pediatric physical therapists may be treating the reported impairments without mentioning these interventions in the survey. Yet, this factor may have been accounted for by using percentages of the total data set rather than direct individual comparisons.


This study reports the large range of examination tools, examination findings, and interventions used by physical therapists to treat children with DS. Not everything that physical therapists incorporate to treat children with DS is evidence based. This is linked to the fact that the evidence base for treating children with DS is small and often consists of pilot studies that are not later expanded to larger research studies. In this absence of literature, physical therapists appear to be applying broad theories and clinical experience to treat children with DS. Now that the breadth of PT practice for children with DS has been reported, the development of a clinical practice guideline may help lead physical therapists to a more consistent standard of practice.


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Down syndrome; physical therapy

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