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Behavioral Characteristics of Individuals with Down Syndrome

Bibliographic Details
Title: Behavioral Characteristics of Individuals with Down Syndrome
Language: English
Authors: Patel, Lina, Wolter-Warmerdam, Kristine, Leifer, Noel, Hickey, Francis
Source: Journal of Mental Health Research in Intellectual Disabilities. 2018 11(3):221-246.
Availability: Routledge. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
Peer Reviewed: Y
Page Count: 26
Publication Date: 2018
Document Type: Journal Articles
Reports - Research
Descriptors: Down Syndrome, Client Characteristics (Human Services), Behavior Patterns, Behavior Problems, Parent Attitudes, Parent Child Relationship, Expressive Language, Gender Differences, Age Differences, Behavior Rating Scales, Psychometrics, Children, Young Adults, Clinics, Child Behavior, Questionnaires, Statistical Analysis, Aggression, Anxiety, Regression (Statistics), Self Destructive Behavior
Geographic Terms: Colorado
DOI: 10.1080/19315864.2018.1481473
ISSN: 1931-5864
Abstract: Introduction: Children and young adults with Down syndrome can demonstrate increased behavior problems compared to their typically developing peers through childhood and adolescence. Though current tools measure behavior problems in persons with intellectual disabilities, they do not capture all the behavioral problems that can occur in individuals with Down syndrome. We: (1) identify new behavioral problems observed by parents of persons with Down syndrome that are not included on standard measures of behavior, but observed by parents; (2) examine the degree to which these behaviors may be impacted by expressive language, gender, and age; and (3) suggest the need to create a new measure. Methods: This investigation examines the identified behaviors and level of parental concern of 274 children and young adults with Down syndrome receiving care at a single medical center. Results: Ninety-four percent of children with Down syndrome engaged in behavioral problems, which was significantly correlated with age and expressive language abilities. Conclusions: Early detection of problem behaviors provides an opportunity for parent resources and professional support to reduce long-term adverse effects and prevent the occurrence of additional problematic behaviors. Results from this study indicate that a measure to more effectively capture and differentiate problem behaviors in children and adolescents with Down syndrome is greatly needed.
Abstractor: As Provided
Number of References: 65
Entry Date: 2018
Accession Number: EJ1182824
Database: ERIC
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  Value: <anid>AN0130263669;[5ew6]01jul.18;2018Jun22.10:07;v2.2.500</anid> <title id="AN0130263669-1">Behavioral Characteristics of Individuals with Down Syndrome </title> <p>Introduction: Children and young adults with Down syndrome can demonstrate increased behavior problems compared to their typically developing peers through childhood and adolescence. Though current tools measure behavior problems in persons with intellectual disabilities, they do not capture all the behavioral problems that can occur in individuals with Down syndrome. We: (<reflink idref="bib1" id="ref1">1</reflink>) identify new behavioral problems observed by parents of persons with Down syndrome that are not included on standard measures of behavior, but observed by parents; (<reflink idref="bib2" id="ref2">2</reflink>) examine the degree to which these behaviors may be impacted by expressive language, gender, and age; and (<reflink idref="bib3" id="ref3">3</reflink>) suggest the need to create a new measure. Methods: This investigation examines the identified behaviors and level of parental concern of 274 children and young adults with Down syndrome receiving care at a single medical center. Results: Ninety-four percent of children with Down syndrome engaged in behavioral problems, which was significantly correlated with age and expressive language abilities. Conclusions: Early detection of problem behaviors provides an opportunity for parent resources and professional support to reduce long-term adverse effects and prevent the occurrence of additional problematic behaviors. Results from this study indicate that a measure to more effectively capture and differentiate problem behaviors in children and adolescents with Down syndrome is greatly needed.</p> <p>Down syndrome; behavioral challenges; problem behavior; parental concern; characteristics; expressive language impairment</p> <p>Behavioral challenges can negatively impact a child’s global level of functioning and ability to acquire new skills within their home, school, and community environments. Prior studies suggest that children with intellectual disabilities are three to five times more likely to struggle with emotional or behavioral problems than typically developing children (Ageranioti-Belanger et al., [<reflink idref="bib2" id="ref4">2</reflink>] ; Baker, Blacher, Crnic, & Edelbrock, [<reflink idref="bib5" id="ref5">5</reflink>] ; Crnic, H, Gaze, & Edelbrock, [<reflink idref="bib14" id="ref6">14</reflink>] ; Dykens, [<reflink idref="bib20" id="ref7">20</reflink>] ; Taanila, Ebeling, Heikura, & Järvelin, [<reflink idref="bib58" id="ref8">58</reflink>] ).</p> <p>Challenges can be associated with cognitive delays, language impairment, neurological challenges with inhibition, and ineffective psychosocial supports.</p> <p>Down syndrome is the most frequently occurring chromosomal disorder and cause of intellectual disability in the United States; however, little information is known regarding the specific etiology of behavioral problems in children and young adults with this genetic condition (Parker et al., [<reflink idref="bib49" id="ref9">49</reflink>] ). Children and young adults with Down syndrome demonstrate increased non-pathological behavioral challenges (25-35%) compared to typically developing peers (5-25%) through childhood and adolescence (Brauner & Stephens, [<reflink idref="bib7" id="ref10">7</reflink>] ; Van Gameren-Oosterom et al., [<reflink idref="bib61" id="ref11">61</reflink>] ). Existing measures used to assess problem behavior in Down syndrome do not adequately capture Down syndrome-specific behavior profiles, and thus these issues are not adequately discussed or studied in the scientific literature. This may contribute to the lack of understanding of specific neurobiological differences in Down syndrome and how these differences may impact behaviors differently than in other populations.. The limited categorical information that is in the literature does show more general differences between those with Down syndrome compared to neurotypical children, children with intellectual disabilities, and those with other developmental disabilities. Behavioral phenotyping of individuals with Down syndrome indicates significant deficits in working memory and planning, difficulties in problem solving, fewer goal-directed behaviors, and more cognitive-avoidance behaviors, all of which are contributing factors to daily behavioral challenges (Daunhauer & Fidler, [<reflink idref="bib16" id="ref12">16</reflink>] ; Fidler, Hepburn, & Osaki, [<reflink idref="bib30" id="ref13">30</reflink>] ; Fidler, Most, & Philofsky, [<reflink idref="bib32" id="ref14">32</reflink>] ; Wishart, [<reflink idref="bib65" id="ref15">65</reflink>] ). When more specifically assessing executive function, inhibitory control has been identified as an area of concern by parents of children with Down syndrome (Daunhauer et al., [<reflink idref="bib17" id="ref16">17</reflink>] ). Current age-specific analyses of high-frequency behaviors in children with Down syndrome indicate that this population also experiences more emotional and behavioral problems compared to typically developing children of similar ages (Capone, Goyal, Ares, & Lannigan, [<reflink idref="bib9" id="ref17">9</reflink>] ; Coe et al., [<reflink idref="bib12" id="ref18">12</reflink>] ; Cuskelly & Dadds, [<reflink idref="bib15" id="ref19">15</reflink>] ; Foley et al., [<reflink idref="bib33" id="ref20">33</reflink>] ; Gath & Gumley, [<reflink idref="bib34" id="ref21">34</reflink>] ; Nicham et al., [<reflink idref="bib48" id="ref22">48</reflink>] ; Pueschel, Bernier, & Pezzullo, [<reflink idref="bib51" id="ref23">51</reflink>] ; van Van Gameren-Oosterom et al., [<reflink idref="bib60" id="ref24">60</reflink>] , [<reflink idref="bib61" id="ref25">61</reflink>] ). This incidence is still present when adjusting for developmental level (Evans, Canavera, Kleinpeter, Maccubbin, & Taga, [<reflink idref="bib26" id="ref26">26</reflink>] ; Evans & Gray, [<reflink idref="bib27" id="ref27">27</reflink>] ; S. Glenn & Cunningham, [<reflink idref="bib35" id="ref28">35</reflink>] ; Loveland & Kelley, [<reflink idref="bib43" id="ref29">43</reflink>] ; Pitcairn & Wishart, [<reflink idref="bib50" id="ref30">50</reflink>] ).</p> <p>Prior studies focusing on behavioral challenges in this population are often limited to analyzing a few specific behaviors, small sample sizes, or combining Down syndrome with other genetic disorders with comorbid intellectual disabilities (Dekker, Koot, Van Der Ende, & Verhulst, [<reflink idref="bib19" id="ref31">19</reflink>] ; De Ruiter, Dekker, Verhulst, & Koot, [<reflink idref="bib18" id="ref32">18</reflink>] ; Dykens, [<reflink idref="bib20" id="ref33">20</reflink>] ; Eisenhower, Baker, & Blacher, [<reflink idref="bib25" id="ref34">25</reflink>] ; Walker, Dosen, Buitelaar, & Janzing, [<reflink idref="bib63" id="ref35">63</reflink>] ). Investigations that do examine behaviors exclusively with individuals with Down syndrome have individually focused on: (<reflink idref="bib1" id="ref36">1</reflink>) avoidance (Kasari & Freeman, [<reflink idref="bib42" id="ref37">42</reflink>] ; Pitcairn & Wishart, [<reflink idref="bib50" id="ref38">50</reflink>] ; Wishart, [<reflink idref="bib64" id="ref39">64</reflink>] ); (<reflink idref="bib2" id="ref40">2</reflink>) adaptive behavior (Dykens, Hodapp, & Evans, [<reflink idref="bib21" id="ref41">21</reflink>] ; Evans & Gray, [<reflink idref="bib27" id="ref42">27</reflink>] ; Evans, Kleinpeter, Slane, & Boomer, [<reflink idref="bib28" id="ref43">28</reflink>] ); (<reflink idref="bib3" id="ref44">3</reflink>) depression (Cooper & Collacott, [<reflink idref="bib13" id="ref45">13</reflink>] ); (<reflink idref="bib4" id="ref46">4</reflink>) obsessive/compulsive/repetitive behaviors (Evans & Gray, [<reflink idref="bib27" id="ref47">27</reflink>] ; Evans et al., [<reflink idref="bib28" id="ref48">28</reflink>] ; Glenn & Cunningham, [<reflink idref="bib35" id="ref49">35</reflink>] ; Maatta, Tervo-Maatta, Taanila, Kaski, & Iivanainen, [<reflink idref="bib45" id="ref50">45</reflink>] ); (<reflink idref="bib5" id="ref51">5</reflink>) talking to self (Glenn & Cunningham, [<reflink idref="bib36" id="ref52">36</reflink>] ); and (<reflink idref="bib6" id="ref53">6</reflink>) the behaviors outlined in specific measures such as the Child Behavior Checklist (CBCL) (Dykens, Shah, Sagun, Beck, & King, [<reflink idref="bib23" id="ref54">23</reflink>] ; Jacola, Hickey, Howe, Esbensen, & Shear, [<reflink idref="bib41" id="ref55">41</reflink>] ; Pueschel et al., [<reflink idref="bib51" id="ref56">51</reflink>] ; Van Gameren-Oosterom et al., [<reflink idref="bib60" id="ref57">60</reflink>] , [<reflink idref="bib61" id="ref58">61</reflink>] ), the Aberrant Behavior Checklist (Stores, Stores, Fellows, & Buckley, [<reflink idref="bib57" id="ref59">57</reflink>] ), Revised Problem Behavior Checklist (Coe et al., [<reflink idref="bib12" id="ref60">12</reflink>] ), Developmental Behavior Checklist (Foley et al., [<reflink idref="bib33" id="ref61">33</reflink>] ), or Behavioral Assessment System for Children, second edition (BASC-2) (Jacola et al., [<reflink idref="bib41" id="ref62">41</reflink>] ). These assessments and the published literature indicate that children and adolescents with Down syndrome are more likely than their typically developing peers to struggle with externalizing behaviors such as opposition, stubbornness, difficulty concentrating, inattention, impulsivity, attention-seeking behaviors, and speech problems. While not all children who experience significant behavioral challenges receive a clinical diagnosis, 6-8% of children and youth who have Down syndrome are diagnosed with ADHD, 10-15% are diagnosed with conduct disorders, and approximately 10% are recognized as being on the autism spectrum (Dykens, [<reflink idref="bib20" id="ref63">20</reflink>] ). When administering the CBCL to children with Down syndrome, low-level aggressive behaviors (63-76%), preference for being alone (63%), secretive behavior (35%), stubbornness (78%), disobedience (73%), fears (57%), and impulsivity (53%) have been identified with potential age effects (Dykens et al., [<reflink idref="bib23" id="ref64">23</reflink>] ). Application of the BASC-2 with adolescents with Down syndrome indicated attention problems (16-25%) and social withdrawal (10-17%) (Jacola et al., [<reflink idref="bib41" id="ref65">41</reflink>] ). Compulsive-like behavior has also been found to be problematic (Evans & Gray, [<reflink idref="bib27" id="ref66">27</reflink>] ).</p> <p>Though researchers have speculated about risk factors increasing the likelihood of behavioral or emotional problems in individuals with Down syndrome, the literature regarding predictors of behavioral challenges has been limited. Potential factors have included age, gender, 5-HT (serotonin receptors), sleep, and life stressors (Coe et al., [<reflink idref="bib12" id="ref67">12</reflink>] ; Dykens, [<reflink idref="bib20" id="ref68">20</reflink>] ; Lund, [<reflink idref="bib44" id="ref69">44</reflink>] ; Stores et al., [<reflink idref="bib57" id="ref70">57</reflink>] ; Tukiainen, Tuomisto, Westermarck, & Kupiainen, [<reflink idref="bib59" id="ref71">59</reflink>] ). Studies assessing significant associations between characteristics such as language impairment, gender, and age on behavioral problems have almost exclusively originated with other populations (Broidy et al., [<reflink idref="bib8" id="ref72">8</reflink>] ; Horiuchi et al., [<reflink idref="bib40" id="ref73">40</reflink>] ; Nagin & Tremblay, [<reflink idref="bib47" id="ref74">47</reflink>] ; Pursell, Laursen, Rubin, Booth-LaForce, & Rose-Krasnor, [<reflink idref="bib52" id="ref75">52</reflink>] ; Salmon, O’Kearney, Reese, & Fortune, [<reflink idref="bib56" id="ref76">56</reflink>] ). Prior research on children and adolescents with developmental disabilities has shown that communication ability is a predictor of behavioral challenges (Andersen Helland, Lundervold, Heimann, & Posserud, [<reflink idref="bib4" id="ref77">4</reflink>] ; Bott, Farmer, & Rohde, [<reflink idref="bib6" id="ref78">6</reflink>] ; Hartas, [<reflink idref="bib38" id="ref79">38</reflink>] ). The impact of a language impairment has been associated with an increase in physical aggression, wandering off, hyperactivity, and self-injury, and can be associated with distractibility and impulsivity. Given the strong correlation demonstrated between language deficit and behavioral challenges in other populations, we hypothesize, based on clinical observation of over 1,200 patients with Down syndrome, that communication issues do contribute to these behavioral challenges in children with Down syndrome.</p> <p>Age effects have been found for withdrawal, somatization, anxiety, aggression, delinquency, social functioning, thought, and attention when applying the CBCL with individuals with Down syndrome (Dykens et al., [<reflink idref="bib23" id="ref80">23</reflink>] ). For example, Dykens et al. ([<reflink idref="bib23" id="ref81">23</reflink>] ) concluded that older adolescents with Down syndrome have decreased externalizing symptoms, while there are subtle increases in internalizing symptoms such as withdrawal. There is also evidence of a behavioral phenotype developing over the lifespan, which adds a layer of complexity to the assessment of behavioral challenges (Chapman & Hesketh, [<reflink idref="bib11" id="ref82">11</reflink>] ).</p> <p>Conflicting information regarding the impact of gender on behavior in children and adolescents with Down syndrome is evident in the literature. Prior studies investigating behavioral and emotional problems in the pediatric Down syndrome population have found males to be at a higher risk of behavioral challenges (Maatta et al., [<reflink idref="bib45" id="ref83">45</reflink>] ; Van Gameren-Oosterom et al., [<reflink idref="bib61" id="ref84">61</reflink>] ), while other investigations either do not identify a correlation between gender and behavior, or report that females are more likely to engage in certain problematic behaviors (Dykens et al., [<reflink idref="bib22" id="ref85">22</reflink>] ; Jacola et al., [<reflink idref="bib41" id="ref86">41</reflink>] ). As such, gender differences need to be further assessed.</p> <p>Parents and professionals may consider problematic behaviors exhibited by children and young adults with Down syndrome as typical, and thus do not seek out help to manage them (Ageranioti-Belanger et al., [<reflink idref="bib2" id="ref87">2</reflink>] ; Reiss, Levitan, & Szyszko, [<reflink idref="bib53" id="ref88">53</reflink>] ). Families may not be informed that strategies could be taught to reduce the intensity or frequency of these behaviors. Psychologists or mental health support may be utilized to only address major mental health concerns or behaviors that have resulted in challenges within the school environment, such as suspension, or behaviors that have become so extreme that they pose a danger to the child or others. The additional knowledge of parental concerns can help professionals with finding age appropriate resources and targeted interventions to provide within the home and community (Capone et al., [<reflink idref="bib9" id="ref89">9</reflink>] ).</p> <p>Despite the known incidence of behavioral problems in Down syndrome, a standardized measure capturing a more complete scope of behavioral problems is needed. Prior standardized measures such as the CBCL (Achenbach & Edelbrock, [<reflink idref="bib1" id="ref90">1</reflink>] ), Behavioral Assessment System for Children (Reynolds, [<reflink idref="bib54" id="ref91">54</reflink>] ), Developmental Behaviour Checklist (Einfeld & Tonge, [<reflink idref="bib24" id="ref92">24</reflink>] ), and Aberrant Behavior Checklist (Aman & Singh, [<reflink idref="bib3" id="ref93">3</reflink>] ) provide insight into predefined behavioral categories, but do not fully capture specifics of non-pathological behaviors that have been identified and discussed within the Down syndrome community as occurring with high frequency or as causing significant challenge. These measures also fail to concurrently capture the many different behavioral challenges such as wandering, self-stimulatory behaviors, or self-talk (Feeley & Jones, [<reflink idref="bib29" id="ref94">29</reflink>] ). This limits the ability to assess the full scope of behavioral problems that may be experienced by an individual with Down syndrome or even the impact a behavior may have on quality of life or safety. In addition, few assessments have explored what parents experience with their children or how concerned they are regarding these different behaviors (Glenn & Cunningham, [<reflink idref="bib36" id="ref95">36</reflink>] ). Additionally, parents may not be concerned about certain behaviors that are considered “typical” in the Down syndrome population, but are elevated on standardized measures validated for use with the general population.</p> <p>We created the Sie Center for Down Syndrome Behavior Clinical Form in response to the clinical necessity to comprehensively assess the types of non-pathological behavioral challenges and parental need for support for children with Down syndrome presenting in clinic. This form has allowed us to capture behavioral challenges not captured with the existing tools, and to discuss with parents their desire for assistance and connect them with resources. Recognizing the high incidence of problematic behaviors and limited research on the subject, a medical clinic for children and young adults with Down syndrome set out to better understand the higher-prevalence behaviors presenting with the Down syndrome population. With an increased life expectancy and inclusion in the community and workforce, identifying and addressing these early behavioral challenges in children and young adults with Down syndrome is essential to ensure safety and reduce the negative impact of maladaptive learned behavior over time.</p> <p>We investigated behavioral challenges in children and young adults with Down syndrome evaluated in the Sie Center for Down Syndrome at Children’s Hospital Colorado between 2010 and 2015. The objectives of this study were to: (<reflink idref="bib1" id="ref96">1</reflink>) determine the incidence of frequently presenting behavioral challenges not captured on existing assessments and the level of concern identified by parents of children and young adults with Down syndrome, (<reflink idref="bib2" id="ref97">2</reflink>) assess the need to create a new standard measure of behavior, and (<reflink idref="bib3" id="ref98">3</reflink>) analyze predictors of problematic behaviors including age, gender, and expressive language.</p> <hd id="AN0130263669-2">Methods</hd> <hd id="AN0130263669-3">Participants</hd> <p>Developed in 2010, the Sie Center for Down Syndrome is a new multidisciplinary specialty clinic at Children’s Hospital Colorado providing evaluation, consultation, and therapies for the medical and developmental needs of children and young adults diagnosed with Down syndrome from the prenatal phase of life up to age 25. Prior analysis estimates that the Sie Center for Down Syndrome provides care to approximately 50.3% of the pediatric population with Down syndrome in the state of Colorado (Hickey, Wolter-Warmerdam, Hickey, Yoon, & Daniels, [<reflink idref="bib39" id="ref99">39</reflink>] ). Experts at the Sie Center for Down Syndrome partner with the child’s primary care provider to provide comprehensive consultation for children and young adults with Down syndrome. The closest Down syndrome clinics are over 600 and 1,000 miles away; therefore, the clinic provides an extension of services to a multistate region. This unique location also offers services to the medically understudied and underserved Hispanic (21.2%) and immigrant populations in Colorado. In the three-hour clinic appointment, pediatric patients are evaluated by a single developmental pediatrician, as well as a team of specialists with expertise in working with children and adolescents with Down syndrome including a physical therapist, speech therapist, feeding therapist, occupational therapist, education specialist, and social worker. During an appointment, this multidisciplinary team reviews the medical and developmental assessment, along with current recommendations, to coordinate care and optimize the child’s health, development, and quality of life. Additional care from the clinic team includes a psychologist, psychiatrist, and nurse practitioner. This new clinic, established to provide comprehensive care on a consultative annual basis, creates a unique opportunity to gather medical and behavioral information to support the collection of population data to better understand patients’ and families’ needs and serve children and young adults with Down syndrome.</p> <p>The study was approved by the Institutional Review Board at the University of Colorado-Denver and informed consent was waived.</p> <p>Clinical data were collected on 274 children with Down syndrome. Potential participants were identified through a query of the clinic’s comprehensive database of all children who received care since the inception of the program in November 2010. All patients (mean age: 8.39 years ± 4.83 SD) met inclusion criteria of having a diagnosis of Down syndrome, receiving care at the Down syndrome clinic, and being between two to 22 years of age. Of the sample, 2.6% (n = 7) had translocation Down syndrome and 1.1% (n = 3) had mosaicism. The Down Syndrome Behavior Clinical Form was developed and implemented in 2012, two years after the start of the Sie Center for Down Syndrome, after identifying the significant need to address patient behavioral challenges. Parent participation was solicited once per patient without regard to existing or new patient status, as the creation of the behavioral questionnaire was the first time questions specific to behavior challenges were being asked. The questionnaire was mailed to families the week before their clinic appointment with a postage-paid return envelope. Participation was voluntary. Instructions at the top of the form indicated that parents were to endorse behaviors that their child currently exhibits. All forms returned were complete with no partial forms submitted. As seen in Table 1, demographic distribution was similar between the Sie Center for Down Syndrome Behavior Clinical Form and the overall hospital’s patient population with Down syndrome</p> <p>Participant and hospital-wide patient comparison from 2013-2015.</p> <p> <ephtml> <table border="1" cellpadding="5"><tr><td /><td align="center" colspan="2">Behavior Clinical Form Participants</td><td align="center" colspan="2">Overall Hospital Patients with DS</td></tr><tr><td>Demographics</td><td align="center">n</td><td align="center">%</td><td align="center">N</td><td align="center">%</td></tr><tr><td>Male</td><td>144</td><td>52.6%</td><td>849</td><td>54.5%</td></tr><tr><td>Female</td><td>130</td><td>47.4%</td><td>710</td><td>45.5%</td></tr><tr><td>White, non-Hispanic</td><td>183</td><td>66.8%</td><td>802</td><td>51.4%</td></tr><tr><td>Hispanic and/or Latino</td><td>59</td><td>21.5%</td><td>475</td><td>30.5%</td></tr><tr><td>Black, non-Hispanic</td><td>6</td><td>2.2%</td><td>69</td><td>4.4%</td></tr><tr><td>Asian</td><td>4</td><td>1.5%</td><td>30</td><td>1.9%</td></tr><tr><td>American Indian or Alaskan Native</td><td>3</td><td>1.1%</td><td>2</td><td>0.1%</td></tr><tr><td>Native Hawaiian/Pacific Islander</td><td>0</td><td>0.0%</td><td>2</td><td>0.1%</td></tr><tr><td>Other</td><td>8</td><td>2.9%</td><td>44</td><td>2.8%</td></tr><tr><td>More than one race</td><td>4</td><td>1.5%</td><td>74</td><td>4.7%</td></tr><tr><td>Unknown</td><td>7</td><td>2.6%</td><td>61</td><td>3.9%</td></tr><tr><td>Totals</td><td>274</td><td>100.0%</td><td>1,559</td><td>100.0%</td></tr></table> </ephtml> </p> <hd id="AN0130263669-4">Materials</hd> <p>Children and young adults were evaluated using the Sie Center for Down Syndrome Behavior Clinical Form, a parent-completed exploratory clinic questionnaire to assess current behaviors, frequency, level of parental concern, and patient age. This questionnaire was developed by the Director of Psychology at the Sie Center for Down Syndrome in collaboration with the multidisciplinary providers in the clinic and community with decades of experience working with individuals with Down syndrome. Specific behaviors reported by parents of these children during routine clinic visits, as well as observations made by a multidisciplinary team during those visits, also were utilized to develop the form.</p> <p>Additionally, a review of the literature was conducted to determine high-frequency behavioral and mental health characteristics that have been assessed within this population already. This ensured the ability to capture less-prominent behaviors. The Behavior Clinical Form was provided in both English and Spanish.</p> <p>The questionnaire identified and evaluated 16 behavioral challenges experienced by children and adolescents in the Sie Center for Down Syndrome at Children’s Hospital Colorado. Behavior challenges included aggression, anxiety/sadness, avoidance, noncompliance, compulsions, difficulty with transitioning from one activity to another, hyperfocus, impulsivity, obsessive thinking, poor boundaries, running or wandering away from adults, self-injury, self-stimulatory behaviors, sitting down and refusing to move, talking to self, and difficulty sitting and waiting. Examples of behaviors included in these categories were added to help increase parental assessment of the targeted behavior. These examples were developed based on the existing literature and expertise of the multidisciplinary team. For example, aggression included behaviors such as hitting, kicking, throwing objects at others, biting others, and hair pulling. Anxiety/sadness included behaviors such as becoming very upset when presented with new situations or environments, crying often, talking about feeling alone, and seeming to no longer show interest in activities he/she used to love. Noncompliance was described as difficulty completing demands placed by others that are assumed to be developmentally appropriate and/or within the child’s skill repertoire. Poor boundaries was defined as hugging, kissing, or touching others without permission. Three blank options were also included so families could add behaviors that were not listed but were of concern to the parent. This also was used to further identify typical behavioral characteristics that may not have been captured in the initial assessment but should be included in the future. This section was also designed to help capture any differences in interpretation for the categories listed. For the behaviors selected, parents indicated: (<reflink idref="bib1" id="ref100">1</reflink>) how frequently the behavior occurred (a few times in lifetime, a few times per year, monthly, weekly, daily) and (<reflink idref="bib2" id="ref101">2</reflink>) their concern regarding the individual behavior (not concerned, a little concerned, somewhat concerned, very concerned).</p> <hd id="AN0130263669-5">Procedure</hd> <p>This retrospective investigation utilized existing clinical data collected from the Sie Center for Down Syndrome Behavior Clinical Form and Clinic Database maintained by the Sie Center for Down Syndrome. As a part of the clinic pre-visit procedure, parents were mailed a copy of the Sie Center for Down Syndrome Behavior Clinical Form prior to the visit along with a postage-paid envelope to mail back the completed form. If nonrespondent follow-up was needed, an additional paper copy was provided at the time of the clinic visit or, if preferred by the parent, a clinic staff member followed up by telephone to verbally complete the form. Responses from the clinical forms were merged with demographic background, developmental history, and medical comorbidity data gathered by medical chart review and placed in a REDCap (Research Electronic Data Capture) database (Harris et al., [<reflink idref="bib37" id="ref102">37</reflink>] ).</p> <p>All participants were evaluated by the Sie Center for Down Syndrome multidisciplinary clinic team specializing in Down syndrome, including one developmental pediatrician with over 30  years of expertise treating children with Down syndrome, a licensed speech language pathologist who meets nationally accepted qualifications for knowledge and skill in the area of AAC services, and an occupational therapist to assess potential speech concerns or limitations. The clinic staff collaboratively met after each comprehensive clinic appointment to discuss the specific needs and treatment plan for each child and adolescent. Patients with Down syndrome who received a referral to an augmentative and alternative communication (AAC) specialist were identified and classified as having a significant-enough expressive language delay to require additional intervention. Specific criteria for this referral included communication impairments to the extent that they are unable to use speech and/or unaided strategies to meet their daily functional communication needs and/or a severe communication disorder that makes it difficult for them to be understood. For individuals with Down syndrome, this could include challenges with speech intelligibility, articulation, or apraxia. Additionally, children who came to their first appointment already in possession of an AAC device were classified as having an expressive language impairment and included in the AAC classification.</p> <hd id="AN0130263669-6">Analysis</hd> <p>Descriptive statistics were performed on demographic and clinical characteristics in the data set. Results are presented as mean ± standard deviation and range, or percentage where appropriate. Because we tested frequency for each of the 16 problematic behaviors, we implemented a Bonferroni correction to control for the familywise error rate. Cumulative odds ordinal logistic regressions with proportional odds were run to determine the significant associations between age, gender, and speech on behavior. The four assumptions were met for these analyses: (<reflink idref="bib1" id="ref103">1</reflink>) ordinal dependent variable, (<reflink idref="bib2" id="ref104">2</reflink>) one or more independent variables that are continuous, ordinal, or categorical, (<reflink idref="bib3" id="ref105">3</reflink>) no multicollinearity, and (<reflink idref="bib4" id="ref106">4</reflink>) proportional odds, which were validated using full likelihood ratio tests and separate binomial logistic regressions on cumulative dichotomous dependent variables. Age was a continuous variable reported in years. Both gender (male, female) and speech (AAC referral, no referral for speech services) were coded as dichotomous variables. T-test and chi-square test for association were conducted between: (<reflink idref="bib1" id="ref107">1</reflink>) parents and children with Down syndrome who completed the clinical form versus clinical form nonrespondents with maternal age, gender of the child, and race; and (<reflink idref="bib2" id="ref108">2</reflink>) expressive language impairment status identified by AAC referral and gender, age, single vs. two-parent household, and health problems. Data were analyzed with the statistical package SPSS 23.0. Analyses were conducted at either an α-level 0.05 significance or a 0.003 significance with the Bonferroni correction. Children were omitted in an analysis if the variable of investigation had an “unknown” or “missing data” value.</p> <hd id="AN0130263669-7">Results</hd> <p>Group differences were run to assess comparability between study participants and clinical form nonrespondents or the Sie Center for Down Syndrome clinic population (N = 1,382). T-test and chi-square test for association were conducted between parents and children with Down syndrome who completed the Sie Center for Down Syndrome Behavior Clinical Form versus the clinical form nonrespondents with maternal age, gender of the child, and race (White versus other races). All expected cell frequencies were greater than five. There was not a statistically significant association between response type and the identified demographics (p > 0.05).</p> <p>Rates of co-occurring diagnoses such as Down syndrome and ADHD or Down syndrome and autism were compared between the Sie Center for Down Syndrome Behavior Clinical Form respondents and the overall Sie Center for Down Syndrome patient population (N = 1,382) to determine if this could account for the increased rates of behavioral challenges identified in this study compared to the existing literature. As indicated previously, the Sie Center for Down Syndrome patients are estimated to be 50.3% of the pediatric population with Down syndrome in the state of Colorado. Chi-square test for association indicated no statistical significance (p > 0.05) for either co-occurring diagnoses of autism or ADHD between those that participated in the behavioral questionnaire and the 1,382 children and young adults in our clinic (study population: autism = 6.9%, ADHD = 2.9%; the Sie Center for Down Syndrome patient population: autism = 4.4%, ADHD = 2.7%).</p> <hd id="AN0130263669-8">The Sie Center for Down Syndrome Behavior Clinical Form</hd> <p>Overall, 93.8% of the 274 participants showed one or more behavior challenge identified on the Sie Center for Down Syndrome Behavior Clinical Form at least weekly or daily.</p> <p>Table 2 presents: (<reflink idref="bib1" id="ref109">1</reflink>) the 16 problem behaviors, indicating the total number and percentage of the participants with Down syndrome showing each behavior; (<reflink idref="bib2" id="ref110">2</reflink>) the number, percentage, and age means and standard deviations of children frequently (weekly or daily) showing a behavior; and (<reflink idref="bib3" id="ref111">3</reflink>) number and percentage of parents who indicated that they were somewhat or very concerned with the behavior along with the mean and standard deviation of their child at that time.</p> <p>Identified behaviors and parental concern.</p> <p> <ephtml> <table border="1" cellpadding="9"><tr><td /><td align="center" colspan="2">Total Patients Showing Behavior</td><td align="center" colspan="3">Patients Showing Behavior Weekly/Daily</td><td align="center" colspan="3">Caregiver Rating of Somewhat/Very Concerned</td></tr><tr><td>Behaviors</td><td align="center">n</td><td align="center">%</td><td align="center">n</td><td align="center">%*</td><td align="center">Age in Years Mean (SD)</td><td align="center">n</td><td align="center">%*</td><td align="center">Age in Years Mean (SD)</td></tr><tr><td>Aggression</td><td>194</td><td>71%</td><td>96</td><td>49%</td><td>6.69 (3.55)</td><td>95</td><td>49%</td><td>8.55 (4.43)</td></tr><tr><td>Anxiety or sadness</td><td>131</td><td>48%</td><td>56</td><td>43%</td><td>9.71 (5.00)</td><td>56</td><td>43%</td><td>11.03 (5.28)</td></tr><tr><td>Avoidance</td><td>146</td><td>53%</td><td>57</td><td>39%</td><td>10.15 (5.13)</td><td>53</td><td>36%</td><td>11.57 (5.34)</td></tr><tr><td>Compulsions</td><td>161</td><td>59%</td><td>107</td><td>66%</td><td>9.63 (5.17)</td><td>71</td><td>44%</td><td>10.46 (4.90)</td></tr><tr><td>Difficulty with transitioning activities</td><td>187</td><td>68%</td><td>127</td><td>68%</td><td>9.68 (4.82)</td><td>93</td><td>50%</td><td>9.84 (4.47)</td></tr><tr><td>Hyperfocus</td><td>162</td><td>59%</td><td>102</td><td>63%</td><td>8.70 (4.77)</td><td>71</td><td>44%</td><td>9.41 (4.62)</td></tr><tr><td>Impulsivity</td><td>187</td><td>68%</td><td>116</td><td>62%</td><td>8.44 (4.48)</td><td>100</td><td>53%</td><td>9.35 (4.57)</td></tr><tr><td>Noncompliance</td><td>211</td><td>77%</td><td>163</td><td>77%</td><td>8.49 (4.70)</td><td>123</td><td>58%</td><td>9.15 (4.59)</td></tr><tr><td>Obsessive thinking</td><td>86</td><td>31%</td><td>54</td><td>63%</td><td>13.09 (4.75)</td><td>35</td><td>41%</td><td>13.52 (4.83)</td></tr><tr><td>Poor boundaries</td><td>183</td><td>67%</td><td>118</td><td>64%</td><td>8.25 (4.43)</td><td>93</td><td>51%</td><td>9.96 (4.76)</td></tr><tr><td>Running or wandering away from adults</td><td>206</td><td>75%</td><td>114</td><td>55%</td><td>6.57 (3.02)</td><td>130</td><td>63%</td><td>8.63 (4.33)</td></tr><tr><td>Self-injury</td><td>104</td><td>38%</td><td>46</td><td>44%</td><td>7.69 (4.38)</td><td>53</td><td>51%</td><td>9.40 (5.19)</td></tr><tr><td>Self-stimulatory behaviors</td><td>176</td><td>64%</td><td>150</td><td>85%</td><td>8.35 (4.57)</td><td>105</td><td>60%</td><td>8.76 (4.33)</td></tr><tr><td>Sitting down and refusing to move</td><td>194</td><td>71%</td><td>105</td><td>54%</td><td>7.61 (3.96)</td><td>83</td><td>43%</td><td>8.98 (4.27)</td></tr><tr><td>Talking to self</td><td>134</td><td>49%</td><td>101</td><td>75%</td><td>10.92 (5.37)</td><td>41</td><td>31%</td><td>12.91 (4.92)</td></tr><tr><td>Difficulty sitting and waiting</td><td>160</td><td>58%</td><td>103</td><td>64%</td><td>7.50 (3.66)</td><td>64</td><td>40%</td><td>9.18 (3.56)</td></tr><tr><td>Other</td><td>98</td><td>36%</td><td /><td /><td /><td /><td /><td /></tr></table> </ephtml> </p> <p>*Percent is calculated from the n (weekly/daily or somewhat/very concerned) out of the number of individuals showing that behavior</p> <p>The first set of columns in Table 2 display the total number and percentage of participants that engaged in each of the 16 behavioral challenges. As shown in Table 2, noncompliance (77%) was the most frequently occurring behavior problem in children and young adults with Down syndrome, followed by running and wandering away from adults (75%), sitting down and refusing to move (71%), and aggression (71%).</p> <p>The second set of columns provides information regarding participants who exhibited the behaviors frequently (weekly or daily). Percentages were calculated from this total of weekly/daily participants out of the number of children or young adults with Down syndrome showing that behavior overall. Results indicate that self-stimulatory behaviors (85%), noncompliance (77%), and talking to self (75%) are the most frequent weekly or daily behaviors and are displayed between 8.35-10.92 years on average.</p> <p>Parent rating of very or somewhat concerned for their child’s behavior and the average age of the child at the time of this concern is represented in the third set of columns. Running or wandering from an adult, self-stimulatory behaviors, and noncompliance were identified as most concerning.</p> <p>Ninety-eight parents provided a response for the open-ended “other” concern(s) question. Verbal aggression was one of the highest-endorsed open-ended behaviors (n = 18). Some respondents also wrote in “yelling” or “screaming” under the category of aggression. Sexualized behaviors were also noted as significantly concerning, with 10 parents listing this as a concern. Parents indicated that they struggled with explaining typical sexual development to their children and that this often resulted in inappropriate touching of personal genitals or trying to sexually approach others unsolicited. Additional areas of concern included abnormal fears (animals, bugs, things that fly, crowds, dark, etc.), challenges with toilet training and continence, feeding issues (overeating or being a picky eater), and sleep issues.</p> <hd id="AN0130263669-9">Impact of expressive language impairment, gender, and age</hd> <p>Group differences were run to assess comparability between participants with expressive language impairment status identified by AAC referral and participants without an expressive language impairment. T-test and chi-square test for association were conducted between expressive language impairment status, identified by AAC referral, and gender, age, single vs. two-parent household, and health problems (heart defects, gastrointestinal malformations or diagnoses, musculoskeletal diagnoses, autoimmune diagnoses, and neurological diagnoses). All expected cell frequencies were greater than five. There was not a statistically significant association for any analyses p > 0.05.</p> <p>Sixteen cumulative odds ordinal logistic regressions with proportional odds analyses were run to determine the effect of expressive language impairment, gender, and age, on the frequency of the 16 identified problematic behaviors. Results for the logistic regressions between age, gender, and expressive language impairment on each of the 16 behaviors are listed in Table 3.</p> <p>Cumulative odds ordinal regressions of age, gender, and expressive language impairment on increased frequency of behaviors.</p> <p> <ephtml> <table border="1" cellpadding="6"><tr><td>Covariate</td><td align="center">Wald Chi-Square</td><td align="center">df</td><td align="center">p Value</td><td align="center">Odds Ratio</td><td align="center">95% CI</td></tr><tr><td>Behavior: Aggression</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>26.405</td><td>1</td><td>0.001</td><td>0.884</td><td>.843-.926</td></tr><tr><td> Expressive language</td><td>7.680</td><td>1</td><td>0.006</td><td>0.540</td><td>.349-.835</td></tr><tr><td> Gender</td><td>1.508</td><td>1</td><td>0.219</td><td>1.308</td><td>.852-2.006</td></tr><tr><td> Final model statistically significantly predicted the dependent variable χ2(3) = 36.112, p <.001</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Anxiety or Sadness</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>12.415</td><td>1</td><td><.001</td><td>1.085</td><td>1.037-1.136</td></tr><tr><td> Expressive language</td><td>1.943</td><td>1</td><td>0.163</td><td>0.724</td><td>.459-1.140</td></tr><tr><td> Gender</td><td>0.004</td><td>1</td><td>0.947</td><td>1.016</td><td>.646-1.597</td></tr><tr><td> Final model statistically significantly predicted the dependent variable χ2(3) = 15.275, p <.001</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Avoidance</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>17.304</td><td>1</td><td><.001</td><td>1.101</td><td>1.052-1.152</td></tr><tr><td> Expressive language</td><td>3.762</td><td>1</td><td>0.052</td><td>0.643</td><td>.411-1.005</td></tr><tr><td> Gender</td><td>0.930</td><td>1</td><td>0.335</td><td>1.245</td><td>.798-1.943</td></tr><tr><td> Final model statistically significantly predicted the dependent variable χ2(3) = 24.179, p =.002</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Compulsions</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>15.686</td><td>1</td><td><.001</td><td>1.097</td><td>1.048-1.148</td></tr><tr><td> Expressive language</td><td>5.419</td><td>1</td><td>0.020</td><td>0.589</td><td>0.377-0.9210</td></tr><tr><td> Gender</td><td>0.283</td><td>1</td><td>0.595</td><td>1.127</td><td>.725-1.752</td></tr><tr><td> Final model statistically significantly predicted the dependent variable χ2(3) = 21.942, p <.001</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Difficulty with Transitioning Activities</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>14.852</td><td>1</td><td><.001</td><td>1.093</td><td>1.045-1.144</td></tr><tr><td> Expressive language</td><td>2.406</td><td>1</td><td>0.121</td><td>0.708</td><td>.458-1.095</td></tr><tr><td> Gender</td><td>0.606</td><td>1</td><td>0.436</td><td>0.843</td><td>.547-1.297</td></tr><tr><td> Final model statistically significantly predicted the dependent variable χ2(3) = 19.332, p <.001</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Difficulty Sitting and Waiting</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>1.964</td><td>1</td><td>0.161</td><td>0.968</td><td>.926-1.013</td></tr><tr><td> Expressive language</td><td>9.117</td><td>1</td><td>0.003</td><td>0.506</td><td>.325-.787</td></tr><tr><td> Gender</td><td>0.356</td><td>1</td><td>0.551</td><td>0.876</td><td>.567-1.354</td></tr><tr><td> Final model did not statistically significantly predict the dependent variable χ2(3) =10.624, p =.014</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Hyperfocus</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>1.465</td><td>1</td><td>0.226</td><td>1.028</td><td>.983-1.074</td></tr><tr><td> Expressive language</td><td>11.353</td><td>1</td><td>0.001</td><td>0.468</td><td>.301-.728</td></tr><tr><td> Gender</td><td>0.350</td><td>1</td><td>0.554</td><td>1.140</td><td>.738-1.762</td></tr><tr><td> Final model statistically significantly predicted the dependent variable χ2(3) = 14.042, p =.003</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Impulsivity</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>0.483</td><td>1</td><td>0.487</td><td>1.015</td><td>.972-1.060</td></tr><tr><td> Expressive language</td><td>1.613</td><td>1</td><td>0.204</td><td>0.757</td><td>.492-1.164</td></tr><tr><td> Gender</td><td>0.219</td><td>1</td><td>0.639</td><td>0.903</td><td>.590-1.382</td></tr><tr><td> Final model did not statistically significantly predict the dependent variable χ2(3) = 2.333, p =.506</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Non-compliance</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>0.673</td><td>1</td><td>0.412</td><td>1.019</td><td>.975-1.064</td></tr><tr><td> Expressive language</td><td>2.137</td><td>1</td><td>0.144</td><td>0.721</td><td>4.66-1.118</td></tr><tr><td> Gender</td><td>1.116</td><td>1</td><td>0.291</td><td>0.792</td><td>.515-1.220</td></tr><tr><td> Final model did not statistically significantly predict the dependent variable χ2(3) = 3.645, p =.302</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Obsessive Thinking</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>56.136</td><td>1</td><td><.001</td><td>1.244</td><td>1.175-1.318</td></tr><tr><td> Expressive language</td><td>1.436</td><td>1</td><td>0.231</td><td>1.401</td><td>.807-2.433</td></tr><tr><td> Gender</td><td>1.584</td><td>1</td><td>0.208</td><td>1.422</td><td>.822-2.460</td></tr><tr><td> Final model statistically significantly predicted the dependent variable χ2(3) = 65.416, p <.001</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Poor Boundaries</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>0.001</td><td>1</td><td>0.972</td><td>0.999</td><td>.957-1.043</td></tr><tr><td> Expressive language</td><td>0.436</td><td>1</td><td>0.509</td><td>0.865</td><td>.562-1.330</td></tr><tr><td> Gender</td><td>0.149</td><td>1</td><td>0.700</td><td>1.087</td><td>.710-1.665</td></tr><tr><td> Final model did not statistically significantly predict the dependent variable χ2(3) =.632, p =.889</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Running or Wandering Away from Adults</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>17.915</td><td>1</td><td><.001</td><td>0.907</td><td>.868-.949</td></tr><tr><td> Expressive language</td><td>5.172</td><td>1</td><td>0.023</td><td>0.606</td><td>.393-.933</td></tr><tr><td> Gender</td><td>0.309</td><td>1</td><td>0.578</td><td>0.887</td><td>.580-1.356</td></tr><tr><td> Final model statistically significantly predicted the dependent variable χ2(3) = 22.956, p <.001</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Self-Injury</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>1.447</td><td>1</td><td>0.229</td><td>0.969</td><td>.921-1.020</td></tr><tr><td> Expressive language</td><td>8.318</td><td>1</td><td>0.004</td><td>0.492</td><td>.304-.797</td></tr><tr><td> Gender</td><td>0.186</td><td>1</td><td>0.666</td><td>1.111</td><td>.688-1.794</td></tr><tr><td> Final model did not statistically significantly predict the dependent variable χ2(3) = 10.013, p =.018</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Self-Stimulatory Behaviors</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>0.102</td><td>1</td><td>0.750</td><td>0.993</td><td>.949-1.039</td></tr><tr><td> Expressive language</td><td>0.007</td><td>1</td><td>0.932</td><td>1.020</td><td>.651-1.598</td></tr><tr><td> Gender</td><td>0.179</td><td>1</td><td>0.672</td><td>1.101</td><td>.706-1.716</td></tr><tr><td> Final model did not statistically significantly predict the dependent variable χ2(3) =.290, p =.962</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Sitting Down and Refusing to Move</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>1.660</td><td>1</td><td>0.198</td><td>0.972</td><td>.931-1.015</td></tr><tr><td> Expressive language</td><td>3.118</td><td>1</td><td>0.077</td><td>0.679</td><td>.442-1.043</td></tr><tr><td> Gender</td><td>1.691</td><td>1</td><td>0.194</td><td>0.755</td><td>.494-1.153</td></tr><tr><td> Final model did not statistically significantly predict the dependent variable χ2(3) = 5.814, p =.121</td><td /><td /><td /><td /><td /></tr><tr><td>Behavior: Talking to Self</td><td /><td /><td /><td /><td /></tr><tr><td> Age</td><td>53.384</td><td>1</td><td><.001</td><td>1.233</td><td>1.165-1.304</td></tr><tr><td> Expressive language</td><td>0.872</td><td>1</td><td>0.350</td><td>1.263</td><td>.774-2.060</td></tr><tr><td> Gender</td><td>0.016</td><td>1</td><td>0.900</td><td>0.969</td><td>.598-1.571</td></tr><tr><td> Final model statistically significantly predicted the dependent variable χ2(3) =64.252, p <.001</td><td /><td /><td /><td /><td /></tr></table> </ephtml> </p> <p>Overall, both severe expressive language impairment and age directly impacted whether a child or young adult with Down syndrome exhibited a behavior frequently (weekly or daily) for 11 of the 16 behaviors assessed. Gender had no significant impact on any of the behaviors. Age influenced the presence of aggression, anxiety or sadness, avoidance, compulsions, difficulty with transitioning, obsessive thinking, running or wandering away from adults, and talking to self. Fourteen of the behaviors occurred more frequently in children identified with a language impairment with statistical significance associated with: aggression, compulsions, hyperfocus, running or wandering away from adults, self-injury, and difficulty sitting and waiting. The final models for age, expressive language, and gender did not statistically significantly predict compliance, impulsivity, poor boundaries, self-stimulating behaviors, and sitting down and refusing to move.</p> <hd id="AN0130263669-10">Aggression</hd> <p>The odds of aggressive behavior in children and young adults with Down syndrome without an expressive language impairment was.540 (95% CI,.349-.835) times that for participants with an expressive language impairment, (<reflink idref="bib1" id="ref112">1</reflink>) = 7.680, p =.006. A decrease in age (expressed in years) was associated with an increase in the odds of aggressive behavior, with an odds ratio of.884, 95% CI [.843-.926], χ<sups>2</sups>(<reflink idref="bib1" id="ref113">1</reflink>) = 26.405, p =.001.</p> <hd id="AN0130263669-11">Anxiety or Sadness</hd> <p>An increase in age (expressed in years) was associated with an increase in the odds of anxiety or sadness with an odds ratio of 1.085, 95% CI [1.037-.1.136], χ<sups>2</sups>(<reflink idref="bib1" id="ref114">1</reflink>) = 12.415, p <.001.</p> <hd id="AN0130263669-12">Avoidance</hd> <p>An increase in age (expressed in years) was associated with an increase in the odds of avoidance with an odds ratio of 1.101, 95% CI [1.052-1.152], χ<sups>2</sups>(<reflink idref="bib1" id="ref115">1</reflink>) = 17.304, p <.001.</p> <hd id="AN0130263669-13">Compulsions</hd> <p>The odds of compulsive behavior in children and young adults with Down syndrome without an expressive language impairment was.589 (95% CI,.377-.920) times that for participants with an expressive language impairment χ<sups>2</sups>(<reflink idref="bib1" id="ref116">1</reflink>) = 5.419, p =.020. An increase in age (expressed in years) was associated with an increase in the odds of compulsive behavior, with an odds ratio of 1.097, 95% CI [1.048-1.148], χ<sups>2</sups>(<reflink idref="bib1" id="ref117">1</reflink>) = 15.686, p <.001.</p> <hd id="AN0130263669-14">Difficulty with Transitioning Activities</hd> <p>An increase in age (expressed in years) was associated with an increase in the odds of having difficulty with transitioning activities, with an odds ratio of 1.093, 95% CI [1.045-.1.144], χ<sups>2</sups>(<reflink idref="bib1" id="ref118">1</reflink>) = 14.852, p <.001.</p> <hd id="AN0130263669-15">Difficulty Sitting and Waiting</hd> <p>The odds of having difficulty sitting and waiting in children and young adults with Down syndrome without an expressive language impairment was.506 (95% CI,.325-.787) times that for participants with an expressive language impairment χ<sups>2</sups>(<reflink idref="bib1" id="ref119">1</reflink>) = 9.117, p =.003.</p> <hd id="AN0130263669-16">Hyperfocus</hd> <p>The odds of hyperfocus behavior in children and young adults with Down syndrome without an expressive language impairment was.468 (95% CI,.301-.728) times that for participants with an expressive language impairment χ<sups>2</sups>(<reflink idref="bib1" id="ref120">1</reflink>) = 11.353, p =.001.</p> <hd id="AN0130263669-17">Obsessive Thinking</hd> <p>An increase in age (expressed in years) was associated with an increase in the odds of having obsessive thinking, with an odds ratio of 1.244, 95% CI [1.175-.1.318], χ<sups>2</sups>(<reflink idref="bib1" id="ref121">1</reflink>) = 56.136, p <.001.</p> <hd id="AN0130263669-18">Running and Wandering Away from Adults</hd> <p>The odds of running and wandering away from adults in children and young adults with Down syndrome without an expressive language impairment was.606 (95% CI,.393-.933) times that for participants with an expressive language impairment χ<sups>2</sups>(<reflink idref="bib1" id="ref122">1</reflink>) = 5.172, p =.023. A decrease in age (expressed in years) was associated with an increase in the odds of running and wandering away from adults, with an odds ratio of 0.907, 95% CI [.868-.949], χ<sups>2</sups>(<reflink idref="bib1" id="ref123">1</reflink>) = 17.915, p <.001.</p> <hd id="AN0130263669-19">Self-Injury</hd> <p>The odds of self-injurious behavior in children and young adults with Down syndrome without an expressive language impairment was.492 (95% CI,.304-.797) times that for participants with an expressive language impairment χ<sups>2</sups>(<reflink idref="bib1" id="ref124">1</reflink>) = 8.318, p =.004.</p> <hd id="AN0130263669-20">Talking to Self</hd> <p>An increase in age (expressed in years) was associated with an increase in the odds of talking to self, with an odds ratio of 1.233, 95% CI [1.165-.1.304], χ<sups>2</sups>(<reflink idref="bib1" id="ref125">1</reflink>) = 53.384, p <.001.</p> <hd id="AN0130263669-21">Discussion</hd> <p>The results of this study add to our understanding of the different types of behavioral problems that children and young adults with Down syndrome experience, age and expressive language factors impacting these challenges, and the need to develop a standard measure to more effectively capture the behavioral concerns present in this population. Although children and young adults with Down syndrome have a higher overall incidence of behavioral challenges than typically developing children, both the number of identified problems and the frequency are greater in this study than what is reported in the literature (Cuskelly & Dadds, [<reflink idref="bib15" id="ref126">15</reflink>] ; Dykens, [<reflink idref="bib20" id="ref127">20</reflink>] ; Dykens et al., [<reflink idref="bib23" id="ref128">23</reflink>] ; Gath & Gumley, [<reflink idref="bib34" id="ref129">34</reflink>] ; Myers & Pueschel, [<reflink idref="bib46" id="ref130">46</reflink>] ; Richards, Oliver, Nelson, & Moss, [<reflink idref="bib55" id="ref131">55</reflink>] ; Van Gameren-Oosterom et al., [<reflink idref="bib60" id="ref132">60</reflink>] ). Excluding significant psychopathology, prior investigations cite behavioral challenges in 18-43% of this population in comparison to our 93.8% who display behaviors at least weekly or daily (Capone et al., [<reflink idref="bib9" id="ref133">9</reflink>] ; Dykens et al., [<reflink idref="bib22" id="ref134">22</reflink>] ; Visootsak & Sherman, [<reflink idref="bib62" id="ref135">62</reflink>] ). Additional constructs examined in our clinical tool, such as wandering and self-talk, captured areas not well represented within the measures used in previous studies, potentially increasing the overall rate of identified behavioral challenges in individuals with Down syndrome. Dykens et al. ([<reflink idref="bib23" id="ref136">23</reflink>] ) noted a possible underestimation of the frequency of behavioral challenges because existing measures such as the CBCL do not measure certain behaviors such as stereotypies and self-injury.</p> <p>Our tool also assessed how often behavioral challenges occur. It is possible that families more critically assessed their child’s behaviors when completing the questionnaire, as they were looking at these behaviors in more detail. As the questionnaire was voluntary, not all questionnaires sent out were returned. Many were returned completed, some were returned with a note indicating that none of the behaviors listed were occurring in their child, and some were not returned at all. It could be that families actively experiencing behavioral challenges were more likely to complete the questionnaire, resulting in some inflation of overall frequency.</p> <p>Our data are consistent with the existing literature identifying noncompliance as the most frequently occurring behavior problems in children and young adults with Down syndrome (Coe et al., [<reflink idref="bib12" id="ref137">12</reflink>] ; Dykens et al., [<reflink idref="bib23" id="ref138">23</reflink>] ). Running and wandering away from adults and sitting down and refusing to move were the second and third behaviors most often reported; however, to our knowledge, no other study has evaluated either of these directly despite the significant challenge for many children and young adults with Down syndrome. Wandering behaviors have been more actively addressed within the autism community, but our data would indicate that this is a critical area of needed attention for Down syndrome as well. We speculate that the behaviors that were captured in the questionnaire we created more accurately targeted the areas of primary concern for children and adolescents with Down syndrome.</p> <p>Endorsed items and open-ended responses about behavior problems indicate the need for developing a more detailed, formal measure to assess the full scope of common behavioral concerns for children and young adults with Down syndrome. Open-ended items such as challenges with sleep, feeding, and toilet training were not statistically significant, but identified areas that would be deemed as clinically significant areas to explore. The forms were completed by families that had all been seen in the multidisciplinary clinic but not necessarily evaluated by the psychologist individually. As a result, the higher percentage of endorsed behavioral challenges could be somewhat inflated by those who may also have more significant mental health issues. Therefore, as part of this process, specific questions within each category would need to be developed to ensure the full spectrum of a defined behavior, from common behaviors possibly associated to a cognitive deficit to psychopathology. Regarding self-stimulatory behaviors, for example, questions could specifically focus on when the self-stimulatory behavior occurs, the frequency, and how much it interferes with daily life. The behavioral challenge related to boundaries could include items that inquire about the nature of the breach in boundaries. A Likert scale could assess boundary violations such as my child “climbs into strangers’ laps,” “hugs or tries to kiss unfamiliar people in the grocery store,” and “has repeatedly exposed their privates in public.” Responses to these prompts may result in a much more detailed assessment of the nature of the problem, resulting in a clearer picture of needed interventions. Future directions could also assess validity with the adult population of individuals with Down syndrome.</p> <p>While other studies have investigated the impact of adaptive functioning on behavioral problems in children and adolescents with Down syndrome, no other study has looked specifically at the severity of expressive language impairment as a predictor of behavior problems (Dykens et al., [<reflink idref="bib23" id="ref139">23</reflink>] ; Jacola et al., [<reflink idref="bib41" id="ref140">41</reflink>] ). Given that many children with Down syndrome demonstrate a specific weakness in expressive language relative to other adaptive skills, including receptive language (Chapman & Hesketh, [<reflink idref="bib11" id="ref141">11</reflink>] ; Fidler, [<reflink idref="bib31" id="ref142">31</reflink>] ), it is crucial to evaluate the particular significance of expressive language impairment in behavioral challenges within the pediatric Down syndrome population. Expressive language is the predominant adaptive skill deficit identified in this population, and our results provide a novel and relevant analysis of how a child’s ability to express him or herself verbally impacts behavior.</p> <p>Interventions that target expressive communication skills in children who show these behaviors may prevent the occurrence and progression of conduct that undermines their ability to function in their day-to-day lives.</p> <p>Evidence regarding the impact of expressive language impairment on the frequency of behavioral challenges in children and young adults with Down syndrome identifies a potential need for early identification and support. Behaviors occurring more frequently in children referred for AAC could potentially be linked to feelings of frustration when there is a significant-enough breakdown in communication and multiple attempts to communicate have failed. Since the national standardized criteria was applied for our AAC evaluation referrals, results also indicate that individuals referred for AAC evaluations had clinically significant challenges with functional communication. While some communication challenges result in externalization of behaviors (aggression, running or wandering away from adults, compulsions, and difficulty sitting and waiting), others may respond with more internalized behaviors (hyperfocus and self-injury). The impact of cognitive level on functional communication and how it manifests behaviorally should also be considered. Understanding this relationship is crucial in anticipating behavioral challenges that some children with Down syndrome may experience as a result of such severe language impairment. Early identification by providers can help families acquire the support that their children need. Additionally, the results of this study can be used to develop educational materials about typical behaviors exhibited by individuals with Down syndrome and the impact of language on their behaviors. This will enable safer and more efficient and effective care for children and young adults with Down syndrome.</p> <p>Our results support the significance of an individual’s age on problematic behaviors. Age influenced the presence of aggression, anxiety or sadness, avoidance, compulsions, difficulty with transitioning, obsessive thinking, running or wandering away from adults, and talking to self. Prior research has also found a similar impact of age on aggressive and delinquent behaviors, with the highest significance between 10-13 years and a decline into adolescence (14-19 years of age), when internalizing behaviors reach their peak (Dykens et al., [<reflink idref="bib23" id="ref143">23</reflink>] ). Knowing at what age a child is at increased risk for exhibiting certain behavioral challenges or the progression of increased risks over time empowers parents to seek out consultation prior to these behaviors becoming more ingrained and more difficult to extinguish. Providers working with these families will also be better equipped to normalize the experience for families while referring them to the appropriate treatment interventionists.</p> <p>Based on our experience evaluating over 1,200 children and young adults at the Sie Center for Down Syndrome over the past five years, we believe that the existing validated measures in the field do not fully capture the behavioral challenges frequently experienced by our patients. Parent participants completing our Sie Center for Down Syndrome Behavior Clinical Form indicated behavioral concerns at a much higher percentage than the previously reported, 18-43% (Cuskelly & Dadds, [<reflink idref="bib15" id="ref144">15</reflink>] ; Dykens, [<reflink idref="bib20" id="ref145">20</reflink>] ; Dykens et al., [<reflink idref="bib22" id="ref146">22</reflink>] ; Gath & Gumley, [<reflink idref="bib34" id="ref147">34</reflink>] ; Van Gameren-Oosterom et al., [<reflink idref="bib60" id="ref148">60</reflink>] ). This suggests our clinical form captured a fuller scope of behaviors unique to Down syndrome more effectively than existing standardized measures have been able to (Coe et al., [<reflink idref="bib12" id="ref149">12</reflink>] ; Dykens et al., [<reflink idref="bib23" id="ref150">23</reflink>] ). Based on the results of our study, future efforts need to focus on developing a valid and reliable measure to assess the specific behavioral challenges, mental health issues, and parental concerns for the Down syndrome pediatric population and within the context of shared definitions of these behaviors. Having this knowledge would greatly increase the ability of providers to address these challenges in a more targeted manner and improve the quality of life for the family.</p> <p>Our study and the existing literature support the ongoing need to address behavioral challenges experienced by individuals with Down syndrome and to educate parents on treatment interventions. Based on our results regarding the relationship between the severity of language impairment and behavior, future research should seek to understand if consistent use of assistive technology and improved communication strategies could reduce behavioral challenges specifically within the Down syndrome population. Improvements in communication skills are associated with reductions in problem behavior in other populations (Carr & Durand, [<reflink idref="bib10" id="ref151">10</reflink>] ). At the core, overlapping behaviors may even show a connection to neurological differences that impact behaviors, further directing intervention. Gathering this information longitudinally, post-intervention, could also provide future direction for a standardized treatment protocol.</p> <p>There were limitations to our study that are inherent to a retrospective review and lack of existing resources for children and young adults with Down syndrome. This study did not utilize a standardized measure of assessing behaviors due to the lack of existing measures that capture anecdotal behaviors that have been frequently observed in individuals with Down syndrome. In order to best capture all behavior problems that may produce concern for parents, a questionnaire format developed by experts in a Down syndrome clinic was utilized. Using the results from this investigation and areas already assessed within the literature, development and validation of a standardized assessment measure is a future goal. It will be critical to differentiate and fully define each element being assessed to reduce the risk of double response. For example, noncompliance did not overtly exclude sitting down and refusing to move, so some caretakers may have endorsed both. Clarifying language to reflect observable behaviors and clear definitions will need to be created to ensure that endorsed items are reflective of the constructs that they are attempting to measure. Although all participants were reviewed by the multidisciplinary clinic team that included a board-certified developmental pediatrician, speech pathologist, and psychologist with expertise in treating and working with children with Down syndrome for a significant language impairment requiring an AAC referral, the ability to quantify language impairment poses a potential limitation. In this retrospective analysis, AAC referral was deemed the best possible tool for distinguishing between those with and without a severe language impairment that participated in the study. Additional research is needed to identify the impact of language impairment based on more precise measures of language ability. Future research validating a new standardized assessment measure for behavioral problems in children with Down syndrome could benefit from using a standardized measure of speech language development to confirm the AAC referral results of this investigation. One might also speculate that children receiving services from a single pediatric hospital can potentially create a population bias. We obtained information regarding behaviors and level of concern at a single point in time, since this study focused on identifying the immediate concerns a parent might have regarding therapeutic support and referral. Therefore, information on changes in behavior, extinction of behavior, changes in parental concern, and intervention outcome was not collected.</p> <p>In conclusion, this study delivers much-needed information about the scope and severity of behavioral challenges faced by children and young adults with Down syndrome and the need to develop a standardized measure to capture these behaviors. It also identifies the potential benefit of targeting expressive language development to prevent and reduce challenging, interfering behaviors. While many of these behaviors may go unreported by families because they believe these behaviors are synonymous with a diagnosis of Down syndrome, quality of life and access to learning could be greatly improved if these interfering behaviors were treated and reduced. Providers in the community would also be better equipped to make appropriate referrals to specialists, further supporting the overall development and well-being of individuals with Down syndrome.</p> <hd id="AN0130263669-22">Acknowledgments</hd> <p>We would like to thank the Global Down Syndrome Foundation and the Anna and John J. Sie Foundation for their financial support of research conducted at the Sie Center for Down Syndrome at Children’s Hospital Colorado.</p> <hd id="AN0130263669-23">Disclosure statement</hd> <p>No potential conflict of interest was reported by the authors.</p> <ref id="AN0130263669-24"> <title>References</title> <blist> <bibl id="bib1" idref="ref1" type="bt">1</bibl> <bibtext>Achenbach, T. 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  Data: Routledge. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
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  Data: <searchLink fieldCode="DE" term="%22Down+Syndrome%22">Down Syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Client+Characteristics+%28Human+Services%29%22">Client Characteristics (Human Services)</searchLink><br /><searchLink fieldCode="DE" term="%22Behavior+Patterns%22">Behavior Patterns</searchLink><br /><searchLink fieldCode="DE" term="%22Behavior+Problems%22">Behavior Problems</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Attitudes%22">Parent Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Child+Relationship%22">Parent Child Relationship</searchLink><br /><searchLink fieldCode="DE" term="%22Expressive+Language%22">Expressive Language</searchLink><br /><searchLink fieldCode="DE" term="%22Gender+Differences%22">Gender Differences</searchLink><br /><searchLink fieldCode="DE" term="%22Age+Differences%22">Age Differences</searchLink><br /><searchLink fieldCode="DE" term="%22Behavior+Rating+Scales%22">Behavior Rating Scales</searchLink><br /><searchLink fieldCode="DE" term="%22Psychometrics%22">Psychometrics</searchLink><br /><searchLink fieldCode="DE" term="%22Children%22">Children</searchLink><br /><searchLink fieldCode="DE" term="%22Young+Adults%22">Young Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Clinics%22">Clinics</searchLink><br /><searchLink fieldCode="DE" term="%22Child+Behavior%22">Child Behavior</searchLink><br /><searchLink fieldCode="DE" term="%22Questionnaires%22">Questionnaires</searchLink><br /><searchLink fieldCode="DE" term="%22Statistical+Analysis%22">Statistical Analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Aggression%22">Aggression</searchLink><br /><searchLink fieldCode="DE" term="%22Anxiety%22">Anxiety</searchLink><br /><searchLink fieldCode="DE" term="%22Regression+%28Statistics%29%22">Regression (Statistics)</searchLink><br /><searchLink fieldCode="DE" term="%22Self+Destructive+Behavior%22">Self Destructive Behavior</searchLink>
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  Data: 10.1080/19315864.2018.1481473
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  Data: Introduction: Children and young adults with Down syndrome can demonstrate increased behavior problems compared to their typically developing peers through childhood and adolescence. Though current tools measure behavior problems in persons with intellectual disabilities, they do not capture all the behavioral problems that can occur in individuals with Down syndrome. We: (1) identify new behavioral problems observed by parents of persons with Down syndrome that are not included on standard measures of behavior, but observed by parents; (2) examine the degree to which these behaviors may be impacted by expressive language, gender, and age; and (3) suggest the need to create a new measure. Methods: This investigation examines the identified behaviors and level of parental concern of 274 children and young adults with Down syndrome receiving care at a single medical center. Results: Ninety-four percent of children with Down syndrome engaged in behavioral problems, which was significantly correlated with age and expressive language abilities. Conclusions: Early detection of problem behaviors provides an opportunity for parent resources and professional support to reduce long-term adverse effects and prevent the occurrence of additional problematic behaviors. Results from this study indicate that a measure to more effectively capture and differentiate problem behaviors in children and adolescents with Down syndrome is greatly needed.
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