Parent-report Measures Research Articles

Early diagnostic indicators of childhood apraxia of speech in young children with 7q11.23 duplication syndrome: preliminary findings

ABSTRACT Limited evidence for early indicators of childhood apraxia of speech (CAS) precludes reliable diagnosis before 36 months, although a few prior studies have identified several potential early indicators. We examined these possible early indicators in 10 toddlers aged 14–24 months at risk for CAS due to a genetic condition: 7q11.23 duplication syndrome (Dup7). Phon Vocalisation analyses were conducted on phonetic transcriptions of each child’s vocalisations during an audio-video recorded 30-minute play session with a caregiver and/or a trained research assistant. The resulting data were compared to data previously collected by Overby from similar-aged toddlers developing typically (TD), later diagnosed with CAS (LCAS), or later diagnosed with another speech sound disorder (LSSD). The Dup7 group did not differ significantly from the LCAS group on any measure. In contrast, the Dup7 group evidenced significant delays relative to the LSSD group on canonical babble frequency, volubility, consonant place diversity, and consonant manner diversity and relative to the TD group not only on these measures but also on canonical babble ratio, consonant diversity, and vocalisation structure diversity. Toddlers with Dup7 also demonstrated expressive vocabulary delay as measured by both number of word types orally produced during the play sessions and primary caregivers’ responses on a standardised parent-report measure of early expressive vocabulary. Examining babble, phonetic, and phonotactic characteristics from the productions of young children may allow for earlier identification of CAS and a better understanding of the nature of CAS.

Mental health of children with and without special healthcare needs and of their caregivers during COVID-19: a cross-sectional study

ObjectiveTo describe mental health outcomes and measures of pandemic burden of children with and without special healthcare needs, and their caregivers following the second wave of the COVID-19 pandemic in...

Family functioning within the context of families with adolescent children in urban India.

Research on family functioning within given cultural contexts is needed. This study aims to describe salient dimensions of family functioning in two urban contexts in India and to examine differences in family functioning by sociodemographic groups. We measured differences in family functioning using cross-sectional survey questionnaire data collected from 13 to 15-year-old adolescents and one of their parents/primary caregivers in Mumbai (n=843) and Kolkata (n=913) during 2019-2020. We drew a multi-stage sample representative of neighborhoods and households in both cities. We assessed a multi-dimensional family functioning latent factor that included parent-reported measures (parent-adolescent communication, family cohesion, and parent monitoring of peers) and adolescent-reported measures (parent support, family cohesion, and parent supervision). Our results support an overall measure of family functioning manifested by multiple dimensions for parent- and adolescent-reported data. Families with male adolescents had worse adolescent-reported family functioning in Mumbai and parent-reported family functioning in Kolkata. Higher socioeconomic status was associated with better parent-reported family functioning in both cities and better adolescent-reported family functioning in Kolkata. Muslim religious identification in Kolkata and the Hindi native language in both cities were associated with better adolescent-reported family functioning. Our findings indicate heterogeneity in family functioning across demographic and social-cultural groups within the two urban contexts of India. This study may inform the development of culturally congruent prevention interventions for families with adolescents in India.

The parent-reported ADHD symptom infrequency scale (PRASIS): a parent report measure of ADHD symptom exaggeration

ABSTRACT The present article outlines the development of the parent-reported ADHD symptom infrequency scale (PRASIS), a novel stand-alone questionnaire designed to discriminate between parents exaggerating ratings of ADHD symptoms of their child from parents more accurately reporting symptoms. The PRASIS includes an Infrequency scale (INF) to measure infrequently reported symptoms of ADHD and a clinical scale to measure Diagnostic and Statistical Manual of Mental Disorders-5th Edition (DSM-5) defined ADHD symptoms (ADHD Total). An initial list of infrequency and clinical items was revised over the course of three studies, each conducted on a different sample of participants (n 1 = 154, n 2 = 203, n 3 = 167) recruited via CloudResearch and consisting of mothers of children 4–12 years old. Analyses on the final version of the measure demonstrated good to excellent internal consistency (INF α = .87 , ADHD Total α = .94) and high convergent validity of the PRASIS ADHD Total scores with ADHD Rating Scale-5 Total scores (r = .87, p < .001). Omnibus ANOVA comparisons demonstrated excellent group discrimination of both the PRASIS Infrequency scale and the PRASIS ADHD scale (Cohen’s f = 0.81-0-90). Specificity was above the minimum requirement set a priori (≥.80) and resulting sensitivity was similar or higher than other non-ADHD measures in the symptom validity literature. Specificity and sensitivity are reported for multiple cutoff scores, and positive predictive values (PPV) and negative predictive values (NPV) are presented for several base rates.

Parent-Reported Experience Measures of Care for Children With Serious Illnesses: A Scoping Review.

This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify and describe steps followed in the measure development process, including where gaps lie and how PaREMs may be improved in future efforts, and 4) help service providers choose a PaREM suitable for their service delivery setting and strategy. Relevant articles were systematically searched from PubMed, CINAHL, and Scopus EBSCOhost databases until June 10, 2021, followed by a manual reference list search of highly relevant articles. Abstracts were screened, followed by a full-text review using predetermined inclusion and exclusion criteria. A standardized data extraction tool was used. Sixteen PaREMs were identified. There were large variances in the development processes across measures, and most have been developed in high-income, English-speaking Western countries. Most only assess the quality of acute inpatient care. Few measures can be used by multiple service providers or chronic care, and many do not capture all relevant domains of the parent experience. Service providers should integrate PaREMs into their settings to track and improve the quality of care. Given the multidisciplinary nature of pediatric care and the often-unpredictable disease trajectories of seriously ill children, measures that are applicable to multiple providers and varying lengths of care are essential for standardized assessment of quality of care and coordination among providers. To improve future PaREM development, researchers should follow consistent and methodologically robust steps, ideally in more diverse sociocultural and health systems contexts. Future measures should widen their scope to be applicable over the disease trajectory and to multiple service providers in a child's network of care for a comprehensive evaluation of experience.

Parenting Acceptance and Commitment Therapy: An RCT of an online course with families of children with CP

AimTo test an online course Parenting Acceptance and Commitment Therapy (PACT) in an RCT with families of children with cerebral palsy (CP), predicting improvements in emotional availability and parent and child adjustment. Method67 families of children (2–10 years) with CP participated. Families were randomly assigned to waitlist control or PACT. Assessments at baseline, post-intervention and at six-month follow up (durability of intervention effects) focussed on emotional availability, adjustment and quality of life. Analysis consisted of repeated measure linear regression models. ResultsAt postintervention (T2), an intervention effect was demonstrated for two aspects of observed emotional availability: parental non-intrusiveness MD = 0.68 (−0.56 to 1.92), p = 0.050 and child involvement, MD = 0.91 (−0.36 to 2.18), p = 0.011. An intervention effect was also found for the parent-reported emotional availability in terms of child involvement. Further intervention effects were found in parent-report measures of child quality of life (social wellbeing and acceptance, participation and physical health), parental mindfulness, parental acceptance, support, social connection, and meaning. No effects were found on parent or child adjustment. Analyses focussed on durability of intervention effect, collapsed across groups, indicated that effects persisted at 6 month follow up (T4). InterpretationPACT demonstrated an intervention effect for two aspects of emotional availability−parental non-intrusiveness and child involvement−as well as parental mindfulness and child quality of life. Parents reported increased comfort with the CP diagnosis, higher likelihood to seek support, higher likelihood to stay connected to others and greater meaningful living. PACT is an effective online/telehealth parenting support intervention for parents of children with CP.

0188 Associations between Preschoolers’ Behavioral Difficulties and Variability in Sleep Duration and Bedtime

Abstract Introduction Variability in children’s sleep patterns has been linked with health outcomes including obesity, poor mood, and behavioral difficulties. However, much of this evidence stems from parent-reported measures of sleep. Understanding these associations in preschool-age children using device-based measures is important as sleep habits tend to develop and stabilize during this time. The purpose of this study was to examine associations between parent-reported behavioral difficulties and device-measured sleep among preschoolers. Methods Ninety-five preschool-aged children (3-5 years, 51% female, 30% Black) with at least two valid nights of sleep were in included in this analysis. Children were asked to wear an Axivity AX3 accelerometer on their non-dominant wrist for 30 days. Parents completed the Strengths and Difficulties Questionnaire which assessed child behaviors over the past 6 months. Raw accelerometry data were processed with GGIR (v2.3). We used MixWild to conduct mixed effects location scale models with a random intercept and scale predicting nocturnal duration variability and bedtime variability. Time invariant behavior subscales (conduct problems, hyperactivity/inattention, peer relationship problems, emotional symptoms, prosocial behavior, and total difficulties) were included as predictors of child sleep duration and bedtime variability. Results Children had an average of 13.4 ± 7.4 (range 2-29) nights of valid data. Average nocturnal sleep duration was 9.7 ± 1.4 hours and average bedtime was 9:48 PM. There were no statistically significant associations between any SDQ subscales and variability in children’s sleep duration and bedtime. There was an association between random location and scale such that participants with later average bedtimes also had more variability in their bedtime (p &amp;lt; 0.001). Conclusion Variability in nocturnal sleep was not associated with parent reported behavioral difficulties, which is contrary to recent findings. It is unclear if sleep duration and bedtime variability are associated with day-level changes in children’s behavior. Additional work that emphasizes aspects of sleep beyond sleep duration is needed to advance our understanding of preschool-age children’s sleep. Support (If Any) This was supported by the National Institute of General Medical Sciences of the NIH for the UofSC Research Center for Child Well-Being (P20GM130420) and by the National Heart, Lung, and Blood Institute (F32HL154530).

Effects of comorbid asthma and eczema on child and family quality of life.

Paediatric chronic health conditions are associated with poorer psychological wellbeing and quality of life for children and families. This study investigated differences in child and parent/family quality of life between families of children with asthma only, eczema only, or both asthma and eczema, and tested predictors of child and parent/family quality of life. A convenience sample of 106 families completed parent-report measures of child and parent/family quality of life, child emotional and behavioural difficulties, parent adjustment and parenting practices. Between-groups ANOVAs indicated no differences for child quality of life, whereas parent/family quality of life was worse for those with eczema only compared to asthma only. Multiple linear regression revealed that child emotional difficulties predicted worse child quality of life, whereas worse parent adjustment, child emotional difficulties and eczema only (compared to both asthma and eczema) predicted worse parent quality of life. Results suggest that families of children with eczema may be at particular risk for impaired parent/family quality of life. Interventions that take a family-centred approach to improving child and parent adjustment should be investigated as an adjunct to medical treatment to reduce the impact of chronic health conditions on quality of life for children and families.

The co-occurrence of motor and language impairments in children evaluated for autism spectrum disorder. An explorative study from Norway.

BackgroundCurrent research suggest that motor and language impairments are common and closely related in infants with autism spectrum disorder (ASD). In older children, less is known about how these impairments are related to each other. AimsThe current study explored the co-occurrence and potential impact of motor and language impairments in a sample of school-aged children evaluated for ASD by Norwegian specialist health services. MethodsBesides clinical evaluation for ASD, all participants (N = 20, mean age 10.7 (SD = 3.4) years) underwent a standardized test of motor performance (MABC-2), parent report measures of current motor (DCDQ’07), language (CCC-2), and social (SRS) skills, and a caregiver interview on everyday functioning, providing an overall impairment score (DD-CGAS). ResultsThe majority (85%) had motor and/or structural language deficits in addition to their social impairment. All children identified with motor impairment on both measures (39%) also had structural language deficits. Better motor performance was strongly correlated with better structural language skills (r = .618, p = .006). ConclusionsOur findings suggest that co-occurring motor and structural language deficits should be anticipated and assessed when evaluating children for ASD. These deficits may need specific interventions that complement those targeting social skills deficits and other ASD core symptoms.

A mobile health intervention to encourage physical activity in children: a randomised controlled trial

BackgroundDespite immense benefits of physical activity on health and developmental outcomes, few children achieve recommended daily levels of physical activity. Given more than half of families with children own a dog, we investigated the effect of a mobile health (mHealth) intervention to encourage dog-facilitated physical activity through increased family dog walking and children’s active play with their dog.MethodsThe PLAYCE PAWS study was a three-armed randomised pilot trial conducted in Perth, Western Australia. Children aged 5-10 years with a family dog were randomised to 4 weeks of either 1) SMS-only intervention, 2) ‘SMS + pedometer’ intervention or 3) ‘usual care’ control. The mHealth intervention involved SMS messages to parents; the ‘SMS + pedometer’ group also received a dog pedometer and personalised dog steps diary. Parent-reported measures were collected at baseline, 1- and 3-months post intervention. The primary outcome was weekly frequency of family dog walking and dog play; secondary outcomes were child attachment to the dog and feasibility of the intervention.ResultsA total of 150 children were randomised in staggered blocks to SMS-only (n = 50), ‘SMS + pedometer’ (n = 50) or usual care (n = 50). No differences were observed in family dog walking and dog play at 1-month. SMS-only children (OR 2.6, 95% CI 1.17, 5.83, P = 0.019) and all intervention children (OR 1.97, 95% CI 1.01, 3.86, P = 0.048) were more likely to increase total dog-facilitated physical activity (sum of family dog walking and dog play responses) at 3-months. The positive associations with total dog-facilitated physical activity disappeared (all P > 0.05) after adjusting for socio-demographic factors.ConclusionsThe PLAYCE PAWS mHealth intervention did not significantly affect dog-facilitated physical activity in children. Given high levels of dog ownership in the community, SMS prompts could be a low-cost intervention to encourage more physical activity in children. Further research is needed to understand how increased interaction with the family dog impacts on children’s overall physical activity and other health and development outcomes.Trial registrationANZCTR, ACTRN12620000288921, retrospectively registered on 4/3/2020.

Valid points and looks: Reliability and validity go hand‐in‐hand when improving infant methods

AbstractIn this commentary, we suggest that infancy researchers should carefully consider validity when taking steps to improve reliability. Zooming in to focus on looking‐time methods, we argue that limitations in validity represent perhaps an even more fundamental issue than reliability. At the same time, focusing single‐mindedly on reliability comes with two possible pitfalls: maximizing reliability at the expense of construct validity, and overvaluing parental report measures compared to direct measures of infant behaviour. Finally, we articulate several promising avenues for improving validity in infant research: experimental and modelling efforts to characterize the functional relationship between measures such as looking time and infant cognition, using multiple measures to establish convergent validity, and improving our understanding of how measures vary across a broader set of stimulus characteristics.

Evaluation of the impact of the MECSH programme in England: A mixed methods study

The Maternal Early Childhood Sustained Home-visiting (MECSH) programme is a proven, structured intervention from pregnancy or up to 8 weeks after the infant comes home until child age 2, delivered to universal partnership plus or targeted families on each health visitor's caseload. The aim of the study was to show how the MECSH programme, developed in Australia, impacts families in England. The study employed mixed methods including: client demographic data gathered by record audit; parent report data; health visitor focus group; and written testimonies from health visitors and clients. A small comparative study was conducted in one site. The programme reached a diverse range of families. Programme parent-reported measures met quality standards and were higher than in control sites. Health visitors and clients perceived multiple positive parent and child impacts. These positive results support the ongoing implementation of MECSH in England, and warrant further study in a population level trial.

Children's shyness and frontal electroencephalogram delta–beta correlation in the pediatric surgical setting

The prospect of surgery is a unique psychologically threatening context for children, often leading to experiences of preoperative anxiety. Recent research suggests that individual differences in children's temperament may influence responses to the surgical setting. In the present study, we examined whether individual differences in shyness were related to differences in frontal electroencephalogram (EEG) delta-beta correlation, a proposed neural correlate of emotion regulation and dysregulation, among children anticipating surgery. Seventy-one children (36 boys, Mage =10.3 years, SDage =1.7 years) undergoing elective surgery self-reported on their own shyness, and their parents also reported on their child's shyness. Using a mobile, dry sensor EEG headband, frontal EEG measures were collected and self- and observer-reported measures of state anxiety were obtained at the children's preoperative visit (Time 1) and on the day of surgery (Time 2). A latent cluster analysis derived classes of low shy (n=37) and high shy (n=34) children using the child- and parent-reported shyness measures. We then compared the two classes on frontal EEG delta-beta correlation using between- and within-subjects analyses. Although children classified as high versus low in shyness had higher self- and observer-reported state anxiety across both time periods, frontal EEG delta-beta correlation increased from T1 to T2 only among low shy children using a between-subjects delta-beta correlation measure. We discuss the interpretation of a relatively higher delta-beta correlation as a correlate of emotion regulatory versus dysregulatory strategies for some children in a "real-world," surgical context.

Measuring PROMIS® Well-Being in Early Childhood.

Expand the current Patient-Reported Outcome Measurement Information System (PROMIS®) well-being measures to early childhood (1-5 years) using best practices from PROMIS and developmental science. Qualitative methods included expert input, literature and measure review, and parent interviews to confirm measure frameworks, item understandability, and developmental appropriateness. Quantitative methods included two waves of field testing and item response theory (IRT)-based psychometric evaluation of reliability and validity, as well as IRT centering and item calibration. Correlational analyses with other PROMIS Early Childhood (EC) Parent Report measures and known-group differences analyses by health status were conducted to evaluate construct validity. All measures were normed to the general U.S. population. Qualitative results suggested three primary early childhood well-being domains: Positive Affect, Engagement, and Self-Regulation. Quantitative results revealed a unidimensional factor structure for Positive Affect and multidimensional factor structures for Engagement and Self-Regulation, both of which had two factors accounting for >10% of modeled variance reflecting unique unidimensional domains. This resulted in five final PROMIS EC well-being measures: Positive Affect, Engagement-Curiosity, Engagement-Persistence, Self-Regulation-Flexibility, and Self-Regulation-Frustration Tolerance. Correlations and known-groups differences analyses showed robust construct validity across a range of chronic health conditions. The new PROMIS EC Parent Report well-being measures offer clinicians and researchers a brief, efficient, and precise way to evaluate young children's well-being. All five measures include only positively valanced item content, which pushes the field to evaluate the presence of children's positive assets rather than the absence of problems.

Measuring PROMIS® Emotional Distress in Early Childhood.

Create and validate developmentally sensitive parent-report measures of emotional distress for children ages 1-5 years that conceptually align with the Patient-Reported Outcome Measurement Information System (PROMIS®) pediatric measures. Initial items were generated based on expert and parent input regarding core components of emotional distress in early childhood and review of theoretical and empirical work in this domain. Items were psychometrically tested using data from two waves of panel surveys. Item response theory (IRT) was applied to develop item calibration parameters (Wave 1), and scores were centered on a general U.S. population sample (Wave 2). Final PROMIS early childhood (EC) instruments were compared with existing measures of related constructs to establish construct validity. Experts and parents confirmed the content validity of the existing PROMIS Pediatric emotional distress domains (i.e., anger, anxiety, and depressive symptoms) as developmentally salient for young children. Existing items were adapted and expanded for early childhood by employing best practices from developmental measurement science. Item banks as well as 4- and 8-item short forms, free from differential item functioning across sex and age, were constructed for the three domains based on rigorous IRT analyses. Correlations with subscales from previously validated measures provided further evidence of construct validity. The PROMIS EC Anger/Irritability, Anxiety, and Depressive Symptoms measures demonstrated good reliability and initial evidence of validity for use in early childhood. This is an important contribution to advancing brief, efficient measurement of emotional distress in young children, closing a developmental gap in PROMIS pediatric emotional distress assessment.

Oral Health and Academic Achievement of Children in Low-Income Families

Low-income children have higher rates of unmet oral health needs. Prior research suggests that poor oral health is associated with lower academic performance but uses cross-sectional and mostly parent-reported measures. This study examined the association between oral health during the first 5 y of life and subsequent academic achievement for low-income children. Birth certificates of children born in Iowa in 1999–2009 were linked to Medicaid enrollment and dental claims data in 1999–2014 and reading and math standardized school test scores for grades 2 through 11. The following oral health measures were examined: having minor dental treatments (mostly surface fillings), major dental treatments (mostly crowns and pulpotomy) or extractions, and comprehensive dental exams during the first 5 y of life. Regression models were estimated adjusting for sociodemographic factors, early infant health, and school district effects. The sample included 28,859 children and 127,464 child-grade observations. In total, 21%, 12%, and 62% of children had at least 1 minor dental treatment, 1 major treatment or extraction, and 1 comprehensive dental exam in the first 5 y of life, respectively. Children who received a minor dental treatment had higher reading and math scores by 1 percentile (95% CI, 0.09–1.9) and 0.9 percentiles (95% CI, 0.02–1.8), respectively. Children who had a major dental treatment or extraction had lower reading and math scores by 2.4 (95% CI, −3.5 to −1.4) and 1.8 (95% CI, −2.8 to −0.8) percentiles. Children who had a comprehensive oral exam had higher reading and math scores by 0.7 (95% CI, 0.06–1.4) and 1.2 (95% CI, 0.6–1.9) percentiles. The findings suggest that children’s oral health before school age is associated with academic achievement later during school years.

Associations Among Food Delay of Gratification, Cognitive Measures, and Environment in a Community Preschool Sample.

Much of the work on the development of appetite self-regulation in early childhood employs tasks assessing Delay of Gratification (DoG). While this skill is thought to rely on “cool” cognitive processes like effortful control, executive functioning, and self-regulation, demonstration of how laboratory measures of food DoG relate to common assessments of those cognitive processes in community samples of children is needed. This study presents secondary data investigating the associations between two laboratory tasks of food DoG, the Snack Delay and Tongue Tasks, and an array of laboratory and parent-report cognitive measures in a sample of 88 children ages 3-6 (M age = 4.05, SD = 0.76), as well as how four measures of the child's environment were associated with food DoG. Results indicated that both measures of food DoG were positively correlated with performance on the cognitive tasks, with stronger associations observed for the Tongue Task. Family income was positively associated with food DoG as measured by the Tongue Task, and child negative life events in the past year were negatively correlated with food DoG as measured by the Snack Delay Task. These findings present the pattern of associations between cognitive tasks and food DoG, the development of which may be meaningfully affected by specific aspects of family environment.

Development and initial validation of a parent report measure of youth belongingness and burdensomeness.

The Interpersonal Theory of Suicide (ITS) implicates thwarted belongingness and perceived burdensomeness as casually related to suicide desire. The self-report Interpersonal Needs Questionnaire (INQ) is the most commonly used measure to assess belongingness and burdensomeness, including in youth. No parent-report version of the INQ exists. The current study adapted the ten-item version of the INQ (INQ-10) for parent report of youth belongingness and burdensomeness, thereby moving ITS research in youth to a multi-informant measurement approach, and examined its factor structure and convergent and concurrent validity. Participants were 168 clinic-referred youths ages 9-17years (58.9% female; Mage =11.91) and their parents. Findings supported a two-factor structure of the parent INQ. In support of convergent and concurrent validity, parent-reported belongingness and burdensomeness were significantly associated with youth-reported belongingness and burdensomeness, suicide ideation, anxiety symptoms, depressive symptoms, and impairment. The current study provides initial support the INQ-parent version as a valid measure to complement youth self-reports of belongingness and burdensomeness.

Psychometric Considerations in Developing PROMIS® Measures for Early Childhood.

The early expression of lifespan health and disease states can often be detected in early childhood. Currently, the Patient-Reported Outcome Measurement Information System (PROMIS®) includes over 300 measures of health for individuals ages 5 years and older. We extended PROMIS to early childhood by creating developmentally appropriate, lifespan coherent parent-report measures for 1-5-year-olds. This paper describes the psychometric approaches used for these efforts. 2 waves of data from parents of children ages 1-5 were collected via 2 internet panel companies. Wave 1 data (n = 1,400) were used to evaluate item pool unidimensionality, model fit, and initial item parameters. Combined data from wave 1 and wave 2 (reference sample; n = 1,057) were used to estimate final item parameters. Using item response theory methods, we developed and tested 12 item pools: Global Health, Physical Activity, Sleep Disturbance, Sleep-related Impairment, Anger/Irritability, Anxiety, Depressive Symptoms, Positive Affect, Self-Regulation, Engagement, Family Relationships, and Peer Relationships. Wave 1 analyses supported the unidimensionality of Physical Activity, Positive Affect, Anger/Irritability, Anxiety, Depressive Symptoms, and Global Health. Family Relationships and Peer Relationships were combined to form "Social Relationships"; Sleep Disturbance and Sleep-related Impairment were combined to form "Sleep Problems." Self-Regulation was divided into "Flexibility" and "Frustration Tolerance"; Engagement was divided into "Curiosity" and "Persistence." Short forms were developed for item banks with more than 10 items; and. Using rigorous mixed-methods, we successfully extended PROMIS to early childhood (1-5-year-olds). Measures are now publicly available in English and Spanish (www.healthmeasures.net).

The Impact of Physical Activity Restrictions on Health-Related Fitness in Children with Congenital Heart Disease.

Children with congenital heart disease (CHD) are often restricted from some types of physical activity (PA) despite the lack of evidence regarding the need to restrict recreational PA, apart from those with rhythm disorders. This study retrospectively investigated the associations between parent-reported activity restrictions (on-going need to restrict exertion, body contact or competition) and measures of health-related fitness among 236 children (8.2 ± 2.1 years, range 4–12 years) treated for single ventricle (n = 104), tetralogy of Fallot (n = 48), transposition of the great arteries (n = 47) or atrial septal defect (n = 37). Body mass index (BMI), moderate-to-vigorous physical activity (MVPA; 7 day accelerometry), strength, flexibility, and movement skill assessment results were collected from the baseline assessment research records for two studies completed in Ontario, Canada. A subset of 62 children also had physician-reported activity restrictions. Regression models empirically tested the goodness of fit between the dependent and independent variables. Participants with body contact restrictions from both parents and physicians had significantly higher BMI z-scores (0.23 ± 1.19 vs. −0.32 ± 0.85; t = 2.55; p = 0.04 and 0.66 ± 1.33 vs. −0.02 ± 0.98; t = 2.25; p = 0.02 for CDC and WHO scores, respectively). Otherwise, BMI z-score was not associated with patient variables (p > 0.36; sex, cardiac diagnosis, age, or activity restriction). Children with any type of parent-reported restriction (0.98 ± 2.06 vs. −0.08 ± 1.99; t = 3.77; p = 0.0002) were less flexible. Movement skill (TGMD-2) scores were 50% lower (25.1 ± 31.2 vs. 52.6 ± 28.6; F = 6.93; p = 0.009) among children with parent-reported competitive sport restrictions. Weekly MVPA (p > 0.18) and strength (p > 0.05) were not associated with activity restriction. Children whose parents reported PA restrictions were less flexible, and had decreased movement skill and increased BMI z-scores if the restrictions impacted competitive sport or body contact, respectively. Future research is recommended to confirm these results among larger samples of children who have both parent- and physician-specified PA restrictions.