A comparison of children and adolescent's self-report and parental report of the PedsQL among those with and without autism spectrum disorder.

PURPOSE: Children and adolescents with autism spectrum disorders (ASD) are understood to experience a reduced quality of life compared to typically developing (TD) peers. The evidence to support this has largely been derived from proxy reports, in turn which have been evaluated by Cronbach's alpha and interrater reliability, neither of which demonstrate unidimensionality of scales, or that raters use the instruments consistently. To redress this, we undertook an evaluation of the Pediatric Quality of Life Inventory™ (PedsQL), a widely used measure of children's quality of life. Three questions were explored: (1). do TD children or adolescents and their parents use the PedsQL differently; (2). do children or adolescents with ASD and their parents use the PedsQL differently, and (3). do children or adolescents with ASD and TD children or adolescents use the PedsQL differently? By using the scales differently, we mean whether respondents endorse items differently contingent by group. METHODS: We recruited 229 children and adolescents with ASD who had an IQ greater than 70, and one of their parents, as well as 74 TD children or adolescents and one of their parents. Children and adolescents with ASD (aged 6-20 years) were recruited from special primary and secondary schools in the Amsterdam region. Children and adolescents were included based on an independent clinical diagnosis established prior to recruitment according to DSM-IV-TR criteria by psychiatrists and/or psychologists, qualified to make the diagnosis. Children or adolescents and parents completed their respective version of the PedsQL. RESULTS: Data were analysed for unidimensionality and for differential item functioning (DIF) across respondent for TD children and adolescents and their parents, for children and adolescents with ASD and their parents, and then last, children and adolescents with ASD were compared to TD children and adolescents for DIF. Following recoding the data, the unidimensional model was found to fit all groups. We found that parents of and TD children and adolescents do not use the PedsQL differently ([Formula: see text] = 64.86, p = ns), consistent with the literature that children and adolescents with ASD and TD children and adolescents use the PedsQL similarly ([Formula: see text] = 92.22, p = ns), though their score levels may differ. However, children and adolescents with ASD and their parents respond to the PedsQL differently ([Formula: see text] = 190.22, p < 0.001) and contingently upon features of the child or adolescent. CONCLUSIONS: We suggest this is due to children or adolescents with ASD being less forthcoming with their parents about their lives. This, however, will require additional research to confirm. Consequently, we conclude that parents of high-functioning children with ASD are unable to act as reliable proxies for their children with ASD.

Reciprocity in autistic and typically developing children and adolescents with and without mild intellectual disabilities.

The assessment of autism in individuals with mild intellectual disabilities (MID) is complicated because of the overlap between autistic traits and intellectual limitations. Impaired social emotional reciprocity is a core diagnostic criterion for autism. However, it is unknown whether reciprocal behaviour differs between MID individuals with or without an autism spectrum disorder (ASD). This study explored differences in reciprocal behaviour of 35 children and adolescents with MID (intelligence quotient 50-85): 15 with ASD (ASD-MID) and 20 with typical development (TD-MID) using the Interactive Drawing Test (IDT). ASD-MID participants showed a lower quality of reciprocal behaviour compared with TD-MID participants. The difference in quality of reciprocal behaviour between ASD-MID and TD-MID participants was not significantly related with Peabody Picture Vocabulary Test scores and thus not attributable to verbal capacity. The IDT is likely to reflect the child's inclination to display reciprocal behaviour in everyday situations, as its scale scores were meaningfully associated with the level of social cognition assessed with the Social Responsiveness Scale. Thus, the IDT seems well suited for measuring impairments in reciprocal behaviour in children and adolescents with MID.

Discrepancies Between Perceptions of the Parent-Adolescent Relationship and Early Adolescent Depressive Symptoms: An Illustration of Polynomial Regression Analysis.

Adolescence is a critical period for the development of depressive symptoms. Lower quality of the parent-adolescent relationship has been consistently associated with higher adolescent depressive symptoms, but discrepancies in perceptions of parents and adolescents regarding the quality of their relationship may be particularly important to consider. In the present study, we therefore examined how discrepancies in parents' and adolescents' perceptions of the parent-adolescent relationship were associated with early adolescent depressive symptoms, both concurrently and longitudinally over a 1-year period. Our sample consisted of 497 Dutch adolescents (57 % boys, M age = 13.03 years), residing in the western and central regions of the Netherlands, and their mothers and fathers, who all completed several questionnaires on two occasions with a 1-year interval. Adolescents reported on depressive symptoms and all informants reported on levels of negative interaction in the parent-adolescent relationship. Results from polynomial regression analyses including interaction terms between informants' perceptions, which have recently been proposed as more valid tests of hypotheses involving informant discrepancies than difference scores, suggested the highest adolescent depressive symptoms when both the mother and the adolescent reported high negative interaction, and when the adolescent reported high but the father reported low negative interaction. This pattern of findings underscores the need for a more sophisticated methodology such as polynomial regression analysis including tests of moderation, rather than the use of difference scores, which can adequately address both congruence and discrepancies in perceptions of adolescents and mothers/fathers of the parent-adolescent relationship in detail. Such an analysis can contribute to a more comprehensive understanding of risk factors for early adolescent depressive symptoms.

Assessing diabetes support in adolescents: factor structure of the modified Diabetes Social Support Questionnaire (DSSQ-Friends).

AIMS: To determine the underlying factor structure of friends' enacted support behaviours for adolescents with Type 1 diabetes, confirm it in a second sample, delineate distinctive aspects of friends' support and test the reliability of resulting scale. METHODS: The study included a total of 434 adolescents (54.8% girls), mean age 14.7 years, mean duration of diabetes 6.1 years. RESULTS: Results from the exploratory factor analysis, including data from a random half of the participants revealed a five-factor solution explaining approximately 48.4% of the item variance. The five factors emerged Guidance and Encouragement (13 items; α=0.91), Help in Critical Situations (7 items; α=0.92), Nourishment (11 items; α=0.88), Empathy (6 items; α=0.83) and Help in Exercise (5 items; α=0.76). Confirmatory factor analysis on the remainder of the sample showed good indices of model fit. Comparison of the factor structure across gender and age also presented an excellent fit. In a second-order factor analysis all five factors loaded on one overall factor, Diabetes Social Support-Friends. Construct validity of the resulting scales was supported by predicted associations of Modified Diabetes Specific Support Questionnaire-Friends scale scores with HbA(1c) , treatment adherence and responsibility, and well-being. CONCLUSION: The 42-item Modified Diabetes Specific Support Questionnaire-Friends emerged as a reliable and valid scale for Dutch adolescents with Type 1 diabetes and measures five factors of diabetes-specific support from close friends.

The role of stressful events in the development of behavioural and emotional problems from early childhood to late adolescence.

BACKGROUND: There is growing evidence on the importance of experiences of stressful events in the development of psychopathology. This study aimed to investigate the role of stressful events in the continuity of internalizing and externalizing problems, as well as the cross-influence of these problems from early childhood to late adolescence. METHOD: Data came from a general population sample of 396 children followed from the ages of 3 to 18 years. Parent-ratings of internalizing and externalizing problems at ages 3, 5, 10 and 18 years were used. Parents also reported on the presence of stressful events between the ages of 3 and 5 years, and 5 and 10 years. Adolescent reports on stressful events over the ages of 10-18 years were used. Structural equation models were used to disentangle/analyse the role of stressful events in the development of internalizing and externalizing problems. RESULTS: From the age of 3 years onwards externalizing symptoms predicted experiences of stressful events. In turn, these experiences predicted later externalizing problems. Stressful events also explained part of the continuity of internalizing problems from the age of 10 years onwards, but not during childhood. From childhood onwards, cross-influences from externalizing problems to subsequent internalizing problems were found to run through stressful events. Only in adolescence cross-influences from internalizing problems to externalizing problems were found, again via stressful events. CONCLUSIONS: From childhood onwards to late adolescence, stressful events play a significant role in both the continuity and the co-occurrence of externalizing and internalizing problems. Theoretical and methodological implications of these findings are discussed.

Does visual impairment lead to additional disability in adults with intellectual disabilities?

BACKGROUND: This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). METHOD: In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with observant-based questionnaires, prior to expert assessment of visual function. With linear regression analysis the percentage of variance, explained by levels of visual function, was calculated for the total population and per ID level. RESULTS: A total of 107/269 participants were visually impaired or blind (WHO criteria). On top of the decrease by ID visual impairment significantly decreased daily living skills, communication & language, recognition/communication. Visual impairment did not cause more self-absorbed and withdrawn behaviour or anxiety. Peculiar looking habits correlated with visual impairment and not with ID. In the groups with moderate and severe ID this effect seems stronger than in the group with profound ID. CONCLUSION: Although ID alone impairs daily functioning, visual impairment diminishes the daily functioning even more. Timely detection and treatment or rehabilitation of visual impairment may positively influence daily functioning, language development, initiative and persistence, social skills, communication skills and insecure movement.

The role of stress reactivity in the long-term persistence of adolescent social anxiety symptoms.

Social Anxiety Disorder (SAD) symptoms demonstrate a marked persistence over time, but little is known empirically about short-term processes that may account for this long-term persistence. In this study, we examined how self-reported and physiological stress reactivity were associated with persistence of SAD symptoms from early to late adolescence. A community sample of 327 adolescents (56% boys, Mage=13.01 at T1) reported their SAD symptoms for 6 successive years and participated in a public speaking task, during which self-reported (i.e., perceived nervousness and heart rate) and physiological (i.e., cortisol and heart rate) measures of stress were taken. Overall, our results point to a developmental process in which adolescents with a developmental history of higher SAD symptoms show both heightened perceived stress reactivity and heart rate reactivity, which, in turn, predict higher SAD symptoms into late adolescence.

The reliability and validity of the COMFORT scale as a postoperative pain instrument in 0 to 3-year-old infants.

The aim of this study was to test the reliability and validity of the COMFORT scale as a postoperative pain instrument for children aged 0-3 years. Subjects were 158 neonates and toddlers after major abdominal or thoracic surgery. Trained nurses rated the children's pain at 3, 6 and 9 h postoperative on the Pediatric Surgical Intensive Care Unit using the COMFORT and a VAS for pain. Interrater reliability of the COMFORT items proved to be good (Kappa 0.63-0.93) for all items with the exception of the item 'Respiratory response', which was moderate (Kappa 0.54). LISREL analyses showed that the structure of the COMFORT data was best represented by three latent variables: COMFORT 'behaviour' with loadings from the behavioural items (Alertness, Calmness, Respiratory response/Crying, Physical movement, Muscle tone and Facial tension) and separate latent variables for 'Heart rate baseline' (HR) and 'Mean arterial blood pressure baseline' (MAP). Factor loadings of the items were invariant across time, indicating stability of the structure. The latent variables COMFORT 'behaviour' and VAS pain were highly interrelated indicating congruent validity. Stability of COMFORT 'behaviour' and VAS pain was moderate which might be due to varying painful episodes in this sample. HR and MAP, although stable across time, were weakly related to VAS pain and COMFORT 'behaviour'. These findings support the use of the COMFORT 'behaviour' scale to assess postoperative pain in neonates and infants.

Longitudinal research in child and adolescent psychiatry.

An indispensable approach to the study of variations in individual development and of causal mechanisms and processes underlying the course of psychopathology is the longitudinal method. In this introductory review, the strengths and weaknesses of longitudinal research are discussed, and factors hampering progress in this field are outlined. The many advantages of this approach warrant continuing efforts to develop strategies that minimize its drawbacks.

Early preschool predictors of preadolescent internalizing and externalizing DSM-IV diagnoses.

OBJECTIVE: To investigate the independent predictive value of parent-reported psychopathology and family risk factors in early preschool in relation to parent-reported internalizing and externalizing psychopathology in preadolescence. METHOD: Subjects were participants in a longitudinal study of 420 two- to three-year-olds from the general population of Zuid-Holland, the Netherlands, which started in 1989. At a second follow-up 8 years later (ages 10-11 years), 358 children participated. For this study, 332 children were included for whom DSM-IV diagnoses (derived from the Diagnostic Interview Schedule for Children-Version 4-Parent Version) were obtained at age 10 to 11 years. Preschool risk factors were obtained through the Child Behavior Checklist for ages 2 to 3 years and a parent interview. RESULTS: Early preschool internalizing and externalizing problems were predictive of their DSM-IV counterparts 8 years later, independent of the influence of early parent-reported family risk factors. Preschool child physical problems were independently predictive of both internalizing and externalizing diagnoses in preadolescence. Of the environmental risk factors, only stressful life events contributed independently to the prediction of later externalizing problems. CONCLUSION: Early adverse family circumstances and parenting characteristics do not contribute to the prediction of later psychopathology once child characteristics are accounted for.

Child-reported depression and anxiety in preadolescence: I. Associations with parent- and teacher-reported problems.

OBJECTIVE: To examine a wide range of parent- and teacher-reported behaviors in relation to child-reported depression and anxiety in preadolescence. METHOD: Subjects were participants in a longitudinal study of 420 preschool children from the general population that started in 1989. At second follow-up 8 years later (ages 10-11 years), usable parent information was obtained for 358 children. For this study, 274 children for whom complete child, parent, and teacher reports were obtained at age 10 to 11 years were included. Measures included the Dimensions of Depression Profile for Children, the State-Trait Anxiety Inventory for Children, the Child Behavior Checklist/4-18, and the Teacher's Report Form. RESULTS: Of 120 parent-reported problem items, only 11 and 9 were associated with child-reported depression and anxiety, respectively. For teachers, 33 and 20 items (of 120) were significantly associated with child-reported depression and anxiety, respectively, including items referring to withdrawal, anxiety, depression, social problems, and academic problems. CONCLUSIONS: Teachers are more likely than parents to notice internalizing problems and related problems such as social and academic problems in children reporting depression or anxiety.

Child-reported depression and anxiety in preadolescence: II. Preschool predictors.

OBJECTIVE: To examine the predictive association of parent- and teacher-reported behaviors at age 2 to 3 years in relation to child-reported depression and anxiety at age 10 to 11 years. METHOD: Subjects were participants in a longitudinal study of 420 children aged 2 to 3 years from the general population first assessed in 1989 and again in 1991 (n = 397) and 1997 (n = 358). For the present study, 249 children were included for whom all relevant measures were obtained. These measures include the Child Behavior Checklist (CBCL) for 2- to 3-year-olds at time 1, the CBCL for 4- to 18-year-olds and the Teacher's Report Form at time 2, and the Dimensions of Depression Profile for Children and the State-Trait Anxiety Inventory for Children at time 3. RESULTS: Only 5 and 8 of 220 parent-reported preschool problem items were significantly related to later child-reported depression and anxiety, respectively, and only 3 of 120 teacher-reported problem items were related to later anxiety. Of 120 teacher-reported preschool problem items, 21 were significantly related to later depression, including items referring to early signs of depression and social and academic problems. CONCLUSIONS: Teachers, but not parents, can provide valuable information regarding preschool signals of preadolescent depression, but not anxiety. These signals include early social and academic problems.

Four-year follow-up of an epidemiological sample.

In this 4-year follow-up of behavioral/emotional problems in an epidemiological sample of 1,200 children originally aged 4 to 12 years assessed with the Achenbach Child Behavior Checklist (CBCL), high stability in the level of CBCL total problem scores was found. Stability of problem behavior was equally substantial for ages 4 to 12 and both sexes. Aggressive and other externalizing behaviors showed the highest stability. Even in children as young as 4 to 5 years, aggressive and attentional problems showed considerable stability. The results of the present study were informative with respect to methodology in indicating clearly that employing a mailing survey for obtaining parent reports on behavioral/emotional problems resulted in the selective exclusion of a group of especially problematic children who were recovered when parents were interviewed at home.

Continuity of psychopathology in youths referred to mental health services.

OBJECTIVE: To investigate the stability and predictive strength of behavioral and emotional problems in childhood and adolescence. METHOD: A referred sample (N = 1,652), aged 4 to 18 years at initial assessment, was followed up after a mean interval of 6.2 years. Problem scores derived from Child Behavior Checklist, Youth Self-Report, and Teacher's Report Form at initial assessment (T1) were related to scores on the same instruments at follow-up (T2). RESULTS: Correlations between T1 and corresponding T2 problem scores averaged 0.41 intrainformant (range 0.22-0.61) and 0.22 interinformant (range -0.09-0.57). Stabilities were similar across gender, and larger for Externalizing versus Internalizing scores, except on youths' self-reports. Psychopathology scores at follow-up were predicted by corresponding T1 scores. Girls were predicted to have higher T2 Somatic Complaints, Anxious/Depressed, Thought Problems, and Internalizing scores than boys. Children younger at intake were predicted to have higher scores than older children on T2 Social and Attention Problems. CONCLUSIONS: Findings indicate continuity of specific behavioral and emotional problems in clinically referred children and adolescents.

Common and specific correlates of preadolescent internalizing and externalizing psychopathology.

The specificity of various child characteristics and environmental correlates of childhood internalizing and externalizing problems was examined using both cross-sectional and longitudinal analyses (from ages 2-3 and 4-5 years) in a general population sample of 10-11-year-olds. Specificity was defined according to a between-subjects and a within-subjects method, using parent and teacher reports of psychopathology. Temperamental withdrawal, parental internalizing psychopathology, and early single parenthood (for girls) were identified as correlates that are specific for internalizing problems, whereas temperamental high general activity level was identified as externalizing-specific. Further, parenting stress, poor school results (only for boys), and stressful life events (only for girls) were found to be common correlates of psychopathology. Research implications regarding the findings and the use of a within-subjects method are discussed.

The association between physiological and behavioral pain measures in 0- to 3-year-old infants after major surgery.

To estimate the association between behavioral and physiological pain measures and to identify determinants predicting the level of association, the COMFORT 'behavior' scale, heart rate (HR), mean arterial pressure (MAP), and the variability of HR and MAP (HRV and MAPV) were assessed every 3 hours after major abdominal or thoracic surgery. Subjects were 204 infants aged 0-3 years. The within-subject correlations, using the repeated measures, were 0.37, 0.44, 0.48, and 0.49 for COMFORT 'behavior' with HRV, HR, MAP, and MAPV, respectively. Neonates had lower behavior-physiology correlations than the older infants, due to low pain scores. Pain characteristics significantly predicted the COMFORT 'behavior'-HR/MAP correlations, suggesting that the behavior-physiology correlations increase with increasing pain. The behavior-physiology correlations were not greatly affected by physical condition. These data demonstrate large interindividual differences in behavior-physiology correlations after major surgery in 0- to 3-year-old infants. These differences should be further explored in future research.

Differential predictive value of parents' and teachers' reports of children's problem behaviors: a longitudinal study.

This study investigated the prediction of signs of disturbance in 946 children originally aged 4 to 11 years from the general population across a 6-year period. Parents' and teachers' ratings obtained via the Child Behavior Checklist (CBCL) and Teacher's Report Form (TRF) were tested as predictors of (a) academic problems, (b) school behavior problems, (c) receipt of mental health services, (d) child's need for professional help, (e) suicidal behavior, and (f) police contacts. Total problem scores in the deviant range on the CBCL or TRF were significantly associated with poor outcomes 6 years later. The combination of deviant scores on both the CBCL and TRF was a powerful predictor of poor outcomes with 56% of the girls, and 36% of the boys with total problem scores in the deviant range on both instruments maladjusted 6 years later. The CBCL syndromes Attention Problems and Delinquent Behavior, and the TRF syndromes Delinquent Behavior, Somatic Complaints, and Social Problems significantly predicted poor outcomes. Teachers' reports predicted poor outcomes equally well or even somewhat better than parents' reports. It is important to include teacher information in the diagnostic assessment of children.

Cross-cultural generalizability of the Youth Self-Report and Teacher's Report Form cross-informant syndromes.

Exploratory factor analyses on 569 Youth Self-Reports and 1,221 Teacher's Report Forms of clinically referred Dutch children revealed six and eight factors respectively, very similar to the eight YSR and TRF cross-informant syndromes derived by Achenbach (1991c, 1991d). Mean cross-cultural correlations were .89 for YSR syndromes and .95 for TRF syndromes. In confirmatory factor analyses of the Dutch and American YSR and TRF factor models in cross-validation samples of 570 YSRs and 1,221 TRFs, goodness-of-fit indices were only slightly better for Dutch factor models. The American cross-informant Social Problems and Attention Problems syndromes had the poorest fit. The application of the eight American cross-informant syndromes to Dutch self- and teacher reports was supported.

Behavioral and emotional problems in young preschoolers: cross-cultural testing of the validity of the Child Behavior Checklist/2-3.

The cross-cultural validity of the Child Behavior Checklist for Ages 2-3 (CBCL/2-3) was tested in three Dutch samples of children referred to mental health services, from the general population, and from a twin study. Six scales were derived from factor analyses and labeled Oppositional, Aggressive, and Overactive, which constituted a broadband Externalizing grouping; Withdrawn/Depressed and Anxious, which constituted a broadband Internalizing grouping; and Sleep Problems. Internal consistencies of the scales, their test-retest reliabilities, interparent agreement, discriminative power, predictive relations with problem ratings 2 years later, and relations to other instruments designed to measure general development and behavior problems were adequate, and highly comparable to psychometric properties in American samples. It was concluded that across languages and cultures behavioral/emotional problems of young preschoolers may be adequately assessed with the CBCL/2-3.

Long-term physical, psychological, and social functioning of children with esophageal atresia.

BACKGROUND/PURPOSE: Little is known about the long-term psychosocial functioning of children with esophageal atresia (EA). The physical, psychological, and social functioning of children with EA was studied using standardized assessment procedures, and relations between medical and social background variables and outcome were investigated. METHODS: Subjects were 36 children (20 boys, 16 girls; mean age 10.2 years) with EA. Fourteen children had minor and 11 children had major associated congenital anomalies. According to the "Montreal" classification, eight children with major congenital anomalies who also had been dependent on artificial ventilation as newborns fell into the high-risk class. The children were subjected to an intelligence test. Parents completed standardized questionnaires concerning emotional and behavioral problems, psychosocial stress, and family functioning; children completed questionnaires concerning depression and self-esteem; and teachers completed questionnaires concerning emotional and behavioral problems. Results were compared with normative data from the general population, and correlations between background and outcome variables were computed. RESULTS: According to Desjardins' classification, 16 children had excellent, nine children had good, and four children had fair outcome. The mean intelligence quotient (IQ) of the children was 90.2, which is almost 10 points lower than the standardized norm of 100 (P < .01). High-risk children (n = 7) had a significantly lower IQ (mean IQ, 79.4; P < .05). Five times as many children (n = 8; 22%) as in the general population (4%) required special education (P < .001). More than twice as many children (30% to 35%) as in the general population (15%) showed elevated rates of emotional and behavioral problems as reported by parents and teachers (P < .02). The children did not report more negative self-esteem or more depressive symptoms than children in the general population. Children with a lower IQ reported lower scholastic competence (r = .38, P < .05) and showed more emotional and behavioral problems as reported by teachers (r = -.43, P < .05). Family functioning and levels of psychosocial stress were the same as in the general population. Children in worse functioning families showed more emotional and behavioral problems as reported by parents (r = .37, P < .05) and higher depression scores as reported by themselves (r = .47, P < .01). CONCLUSIONS: In a follow-up study using standardized assessment procedures, it was shown that children with EA have more learning, emotional, and behavioral problems than children in the general population. A high-risk group of children with major associated congenital anomalies who had been ventilated as a newborn, were at special risk for cognitive problems.