Psychosocial Issues in Families Affected by Maple Syrup Urine Disease

The primary aim of this study was to ascertain the psychosocial issues faced by families affected by maple syrup urine disease (MSUD). The psychosocial adjustment and quality of life of children with MSUD were also described. Participants included 55 families and their children (ages 5 to 18 years) and teachers. Measures included a MSUD Family Survey, the Behavior Assessment System for Children (BASC) and the Pediatric Quality of Life Inventory (PedsQL). Parents reported via the MSUD Family Survey that the greatest sources of stress were financial and emotional. Many parents reported difficulty interacting with the medical staff and with schools. On the BASC, half of the children fell within the average range in psychosocial adjustment, although there were elevations in scales measuring attention, hyperactivity, and learning problems. On the PedsQL, the mean quality of life scores were closer to children with cancer than to a healthy sample. Despite the emotional and financial burden, parents reported that MSUD has also had a positive influence on their lives, leading to a world-view that is more compassionate and caring.     

Anomalies in Measuring Health-Related Quality of Life: Using the PedsQL 4.0™ with Children Who Have Peanut Allergy and Their Parents

The purpose of this study was to examine the relationship between health-related quality of life, using the PedsQL? 4.0, and peanut allergy in children. As part of a larger study, 51 parents completed a demographics questionnaire, a Pediatric Quality of Life Inventory? (PedsQL 4.0), and a series of questions regarding their child’s peanut allergy. 48 child participants, ages 6 to 12, completed a PedsQL? 4.0, and some specific questions regarding their peanut allergy. Parents of children with peanut allergy reported higher scores for their children for physical functioning (t (50)?=?3.6, p?<?.001) and lower scores for emotional functioning (t (50)?=??4.88, p?<?.001) compared to published norms for healthy controls. Further analysis, as explored in this paper, showed differences in functioning based on school placement. Children who were homeschooled reported lower physical functioning scores. These reports appear anomalous given that peanut allergy should not affect physical strength or stamina and may be tapping into another reason that these children are homeschooled. The anomalous results of the current study, in the area of physical functioning for children with peanut allergy, support the current trend of more disease-specific health-related quality of life measures for children.     

Factorial Invariance of the PedsQL™ 4.0 Generic Core Scales Child Self-Report Across Gender: A Multigroup Confirmatory Factor Analysis with 11,356 Children Ages 5 to 18

The measurement of health-related quality of life (HRQOL) in pediatric medicine and health services research has grown significantly over the past decade. The paradigm shift toward patient-reported outcomes (PROs) in clinical trials and population studies has provided the opportunity to emphasize the value and critical need for pediatric patient self-report. In order for HRQOL/PRO outcome comparisons to be meaningful for gender group analyses, it is essential to demonstrate the factorial invariance of an instrument. This study examined factorial invariance of the 23-item PedsQL? 4.0 Generic Core Scales across gender groups for child self-report ages 5–18. Multigroup Confirmatory Factor Analysis (MGCFA) was performed specifying a five-factor model across gender groups. The analyses were based on 11,356 children recruited from clinic, school, and community populations. Strict factorial invariance across gender groups was demonstrated based on stability of the Comparative Fit Index (CFI) between the models, and indices of practical fit including the Root Mean Squared Error of Approximation (RMSEA), the Non-Normed Fit Index (NNFI), and the Parsimony Normed Fit Index (PNFI). The findings support an equivalent five-factor structure on the PedsQL? 4.0 Generic Core Scales across gender groups. Based on these data, it can be concluded that boys and girls studied interpreted items on the PedsQL? 4.0 Generic Core Scales in a similar manner. These findings have implications for studies of gender differences in health outcomes.     

Speech and Language Difficulties Along with Other Child and Family Factors Associated with Health Related Quality of Life of Australian Children

Speech and/or language difficulties (SaLD) can potentially compromise a child’s health-related quality-of-life (HRQoL). Very few studies have examined associations between SaLD, other child and family factors and HRQoL and none have been undertaken in Australia. We explore these associations using data from a nationally representative Australian sample of 4–5 year old children, extracted from the Longitudinal Study of Australian Children (LSAC) (n?=?4386). The Disability-Stress-Coping Model informed variable selection. Three domains of HRQoL were examined, and assessed on physical, emotional and social functioning subscales of the Pediatric Quality of Life Inventory (PedsQL). SaLD measures included parent concern about speech/language (Parents’ Evaluation of Developmental Status) and receptive vocabulary ability (adapted Peabody Picture Vocabulary Test-III). Multiple regression analyses revealed that various child and family factors representing all constructs from the Disability-Stress-Coping Model were significantly associated with HRQoL. Specifically, HRQoL was positively associated with parental warmth and child’s general health and negatively associated with parent speech/language concerns and maternal depression across all domains. Parents with concerns about their pre-school child’s speech and language rate the quality of their child’s health more poorly across physical, emotional and social domains. Associations between parent speech/language concerns and HRQoL were notable for being apparent in a (non-clinical) population sample and for persisting independent of factors such as maternal depression, parenting style and the child’s general health.     

Matching adolescents with foster mothers and fathers: An evaluation of the role of temperament

We tested the notion that better foster care adjustment would be observed when the temperaments of mothers and fathers were matched with those of adolescent foster children. We hypothesized that families in which foster parents and foster children had high (easy) scores on subscales of the Revised Dimensions of Temperament Scale (DOTS-R) would also report higher family functioning and higher foster care adjustment than parents and children from families in which one or both family members had low (difficult) scores on these scales. The hypotheses were supported when the mothers and fathers family assessments were used but rejected when the observations of the case managers and adolescents were tested. Methodological and substantive explanations for the findings are discussed and recommendation for foster care practice and continuing research are provided.     

Comparing Maltreating and Foster Families in Italy

Maltreating and foster families belong to different research areas and have rarely been considered together. This exploratory study compared maltreating and foster families to demonstrate an integrated approach that overcomes the dichotomic view that often separates problematic families from those who have resources. This study had 81 participants: 48 maltreating parents and 33 foster parents and the children who were in foster care. We examined family functioning (FES), adult attachment styles (ASQ) and foster children’s strengths and difficulties (SDQ) in maltreating and foster families to examine the differences and similarities between families. Both types of families had significant differences on the FES and ASQ scales. Maltreating families had a stronger orientation to succeed and a family profile that was more orientated towards independence. Maltreating parents had higher scores on the scale that measured discomfort with closeness than foster families. However, both family types had a high level of confidence. Many foster children had SDQ scores that were in the borderline and problem categories. These components may promote a theoretical view of an integrated model for family and children’s problems that promotes children’s welfare and supports maltreating parents. Practitioners can build on parent’s strengths or protective factors and provide services to address less developed areas.     

Adoption Is a Successful Natural Intervention Enhancing Adopted Children's IQ and School Performance

ABSTRACT— Is the cognitive development of adopted children different from that of (a) children who have remained in institutional care or in their birth families or (b) their current (environmental) nonadopted siblings or peers? We attempt to answer these questions on the basis of a meta-analysis of 62 studies including 17,767 adopted children. Compared to their nonadopted siblings or peers who stayed behind, adopted children scored substantially higher on IQ tests and they performed much better at school. Compared to their current nonadopted environmental peers or siblings, adopted children showed similar IQ scores but their school performance and language abilities lagged somewhat behind. Most importantly, we found a twofold increase in special-education referrals in adopted children compared to their nonadopted peers. Taken together, the findings document the positive impact of adoption on children's cognitive development and adopted children's remarkably normal cognitive competence but somewhat delayed school performance.     

Parent rating of executive function in fetal alcohol spectrum disorder: A review of the literature and new data on Aboriginal Canadian children

Aboriginal children in Canada are at high risk of fetal alcohol spectrum disorder (FASD) but there is little research on the cognitive impact of prenatal alcohol exposure (PAE) in this population. This paper reviews the literature on parent report of executive functioning in children with FASD that used the Behavior Rating Inventory of Executive Function (BRIEF). New data on the BRIEF is then reported in a sample of 52 Aboriginal Canadian children with FASD for whom a primary caregiver completed the BRIEF. The children also completed a battery of neuropsychological tests. The results reveal mean scores in the impaired range for all three BRIEF index scores and seven of the eight scales, with the greatest difficulties found on the Working Memory, Inhibit and Shift scales. The majority of the children were reported as impaired on the index scores and scales, with Working Memory being most commonly impaired scale. On the performance-based tests, Trails B and Letter Fluency are most often reported as impaired, though the prevalence of impairment is greater for parent ratings than test performance. No gender difference is noted for the parent report, but the boys had slightly slower intellectual functioning and were more perseverative than the girls on testing. The presence of psychiatric comorbidity is unrelated to either BRIEF or test scores. These findings are generally consistent with prior studies indicating that parents observe considerable executive dysfunction in children with FASD, and that children with FASD may have more difficulty with executive functions in everyday life than is detected by laboratory-based tests alone.     

Sociodemographic and Lifestyle Correlates of Health-Related Quality of Life in Croatian University Students

The purpose of this study was to assess the health-related quality of life (HRQoL) in a sample of Croatian university students and to determine its association with sociodemographic and lifestyle characteristics. The study was conducted on a random sample of 1750 students in Zagreb, Croatia. We used the 12-item Short-Form Health Survey (SF-12v2) and separate questions on sex, age, body mass index (BMI), settlement size, disposable income, cigarette consumption, alcohol consumption, and exercise frequency. The HRQoL scale on which Croatian students scored the highest was Physical Functioning. High mean scores were also found for other physical health measures, while the scores in mental health scales were somewhat lower. Male students scored significantly higher than females on all SF-12 scales (p?<?0.05). The regression analysis showed that Physical Component Summary score (PCS) is negatively related to BMI (partial r?=??0.09) and cigarette consumption (partial r?=??0.06), and positively related to alcohol consumption and exercise frequency (partial r?=?0.08, for both), while Mental Component Summary score (MSC) is positively related to BMI (partial r?=?0.07) and exercise frequency (partial r?=?0.10). Although HRQoL-scores for the Croatian students were higher than in the general population of Croatia and student populations in several other countries, there is still room for improvement, especially in the mental health aspect. In general, HRQoL was found to be significantly lower among females and smokers, but positively related with exercise frequency. In order to improve students’ HRQoL, university authorities should consider initiating health-promotion programs with emphasis on females, smokers and non-exercisers.     

Peabody Picture Vocabulary Test-Revised and luria-Nebraska Neuropsychological Battery for Children: intercorrelations for normal youngsters

The relationship between scores on the PPVT-R and Luria-Nebraska Neuropsychological Battery for Children was examined utilizing 86 normal children, including 55 females and 31 males from middle-class families. Correlation coefficients were computed between the standard scores obtained on the PPVT-R and the T scores from the summary scales on the Luria-Nebraska. Significant relationships were predicted between the PPVT-R and the Receptive scale on the Luria-Nebraska. Significant but small correlations were found between the PPVT-R and this scale as well as the Intelligence, Visual, Arithmetic, Memory scales on the Luria-Nebraska.     

Do the Wechsler scales underestimate the difference between verbal and performance abilities in children with language–related disorders?

The present paper examines the validity of the Wechsler scales with children with language-related disorders, with whom the scales were not originally normed. The general question is whether we can take measures of IQ, normed with a normal sample, and then validly use them as indicators of the same constructs with samples significantly different from the normed sample. In previous papers it was pointed out that the pattern structurally simple > moderately complex > complex tests can be observed in their IQ profiles within both the Verbal scale and the Performance scale. In this paper, it is hypothesized that this scatter of scores leads to an underestimation of the global V-P IQ differences for children with language-related disorders because there are more structurally complex tests on the Performance scale than on the Verbal scale. To test this hypothesis, "purer" V-P IQ differences were calculated by comparing the scores on Verbal and Performance tests of equal structural complexity. WPPSI and WISC-R data from four groups of children were analyzed: language-impaired children (n = 128), reading-impaired children (n = 112), children from dyslexic families (n = 51), and normal children (n = 49). When the effect of the difference in structural complexity was controlled for, it was found that the distribution of the revised V-P IQ difference was significantly more toward the negative end of the spectrum than the traditional V-P IQ differences for language-impaired and reading-impaired children, and approaching a significant level for children from dyslexic families. As hypothesized, there were no significant differences between the two distributions of V-P IQ differences for normal children. Practical and theoretical implications are discussed.     

Characterization of Memory Impairment Following Closed-Head Injury in Children Using the Rey Auditory Verbal Learning Test (AVLT)

Memory impairment following closed-head injury (CHI) in children is well documented. Characterization of the memory deficits of children with CHI could contribute to the prediction of academic performance and rehabilitation of these children. Twenty-five children who sustained closed-head injury and 25 matched controls were administered the Rey Auditory Verbal Learning Test (AVLT). The advantage of this memory test is that a number of memory components are measured simultaneously, thus enabling us to study the relations between different aspects of memory within the same patient sample. The findings indicate that the Rey AVLT is a good test for characterization of impaired verbal memory in children following CHI. Transformation of scores derived from the Rey AVLT to Z-scores enables us to determine the relative effect of CHI in children on different memory scores. Raw scores were more vulnerable than relational ones, derived as the difference between two raw scores (e.g., learning, Trial 5?1), to closed-head injury in children, and scores reflecting word span were the least vulnerable. The results are discussed in terms of the possible contribution of the frontal lobes, which are frequently affected in closed-head injuries, to memory performance.     

Clinic-Referred Mothers’ Autobiographical Narratives as Markers of Their Parenting Styles

Forty clinic-referred mothers completed questionnaires describing their children’s problems and the mothers’ parenting styles. In addition, each mother told three stories about their personal experiences in child care and one story about being cared for in their families of origin. Each story was transcribed and rated for coherence on six dimensions describing narrative clarity and richness. Results showed the narrative ratings to be fairly reliable and internally consistent, and the questionnaires proved to be psychometrically sound except for one of the parenting style scales that we dropped from further data analyses. Results showed the two remaining scales (authoritative and authoritarian styles) covaried with mothers’ reports about problems with their children. Correlations between mothers’ narrative coherence scores and their parenting style scores showed mixed results: authoritative style was not correlated with narrative coherence, but authoritarian style was negatively correlated with this narrative measure. Regression analyses using the six coherence scales and the authoritarian style scale showed the causality scale to account for most of the variance in authoritarian style. We speculated on the nature of this latter covariation.     

Brief Book,Software, and Test Announcements

After reviewing literature detailing the ubiquity of error in research and assessment data, I describe mistakes found with MMPI-2 and Rorschach scores in an earlier publication (Meyer, 1993). The mistakes emerged from several sources, including hand-scoring the assessment measures, manually retrieving scores from patient files, and manually entering information for statistical analyses. The proportion of erroneous scores in the original study (MMPI-2 = 5.88%, Rorschach = 1.56%) was relatively small and reliability coefficients between the original and corrected scales were uniformly high (i.e., > .940). Consequently, the findings detailed in the original publication were not greatly affected by the mistakes that were made. Nonetheless, because this will not always be the case, I discuss the discrepancies as a way to sensitize researchers, clinicians, and students to the presence of error and then suggest several strategies for minimizing its impact on assessment data and research.     

Health-related quality of life in chronic fatigue syndrome: predictors of physical functioning and psychological distress

This study investigated health-related quality of life (HRQoL; physical functioning and psychological distress) in an Australian chronic fatigue syndrome (CFS) population. The aims of the study were to compare HRQoL in those with CFS to the normal population, and to investigate the extent to which sociodemographic (age, gender, partner status, education), illness-related (illness duration, symptom frequency), and fatigue severity (physical, mental) variables predicted HRQoL. A total of 139 people meeting CFS criteria completed questionnaires. HRQoL was assessed using standardised measures of distress and physical functioning. Compared with norms, those with CFS obtained significantly lower scores on all physical functioning areas, whereas 63% of participants reported clinically significant psychological distress. Hierarchical regression analyses indicated that physical fatigue severity and symptom frequency were the strongest predictors of deficits in physical domain HRQoL. Physical HRQoL outcomes were also predicted by mental fatigue severity, older age, and female gender. All predictors were unrelated to psychological distress apart from weak positive associations with physical fatigue and symptom frequency. Results identify a potent set of predictors of HRQoL and show that CFS has a pervasive negative impact on quality of life, particularly physical and psychological functioning.     

Quality of Life Before and After Cataract Surgery: Research in a Sample of Polish Patients

The goal of this paper is to present possible change in quality of life (QoL) in older sample of people with vision disturbances. The patients were investigated twice: before (N = 193) and 4 month after the cataract surgery (N = 69), by means of the scale for vision functioning, and the Life Quality Questionnaire (Schalock & Keith, 1993) extend with the items measuring health related quality of life (HRQoL). Two problems were formulated: To what extent are visual defects associated with the decreased subjective QoL? What changes are observed in perceived QoL during the period of treatment of visual defects? The patients reported significant increase of HRQoL, however they did not report similar increase of a general QoL. Few reasons are considered: overlapping of the content of visual function scales and HRQoL and different indices of a general QoL and HRQoL, lack of a proper postoperative care, low socio-economic status of the participants, and too high expectation concerning better functioning after the surgery.     

Determination of Weights for Health Related Quality of Life Indicators among Kidney Patients: A Fuzzy Decision Making Method

Health-Related Quality of Life (HRQoL) is one of the significant current discussions in the health fraternity. It encompasses multidimensional indicators and serves the purpose of evaluating health quality among patients. Patients’ perceptions of the impact of disease and treatment and the indicators such as physical, psychological, social function and well being are normally investigated. However there is no clear suggestion of which indicators contributed more than others. The arbitrary nature of HRQoL paves the way for fuzzy theory in evaluation of indicators. This paper describes the application of a fuzzy decision making method in ranking indicators of HRQoL among kidney patients. Four experts in health fraternity were selected as decision makers to elicit information regarding health related status of chronic kidney disease patients over eight HRQoL indicators. The decision makers were required to rate the regularity of experiencing health-related problems in linguistic judgment among the patients. The five linguistics variables were used as input data to a modified version of Fuzzy Simple Additive Weight decision making model. The modified six-step method was possible to tap the extent of decision makers’ opinions on the severity of HRQoL experienced by the patients. It is shown that the indicator of role-physical recorded the lowest problematic level while the indicator of mental health recorded the highest problematic level experienced by the patients. The ranking signifies the impact of the indicators to health quality specifically the chronic kidney disease patients.     

A psychometric study of the Family Adaptability and Cohesion Evaluation Scales

The Family Adaptability and Cohesion Evaluation Scales (FACES), a measure of family functioning, contains three scales: cohesion, adaptability, and social desirability. These were slightly modified (FACES- R) on the basis of pilot data and were administered to 42 clinic families (families seeking or receiving psychological services) and 206 nonclinic families. Support for the scales was found in high coefficient alpha reliabilities and similarity of the sample means and standard deviations to those of the standardization sample. However, there was little agreement among family members' scale scores. Therapists' ratings of cohesion and adaptability did not correlate with scale scores among clinic families. There was no difference between clinic and nonclinic samples on the cohesion or adaptability scales, although the social desirability scale did discriminate between groups. Factor analysis suggested that cohesion, adaptability, and social desirability cannot be clearly differentiated using this measure.This work was supported by the American Association of University Women and by Grant R01HD13820 from the National Institute of Child Health and Human Development.     

The relationship between children's overweight and quality of life: A comparison of Sizing Me Up,PedsQL and Kid-KINDL

Background/Objective: Overweight and obese children are likely to encounter negative impact on psychological well-being and quality of life (QoL). Hence, for overweight and obese children, measuring QoL could go beyond simply assessing objective medical parameters and cover their physical health, psychological well-being, and social interaction. Generic (Kid-KINDL and Pediatric Quality of Life Inventory [PedsQL]) and weight-related (Sizing Me Up) measures are two major types of QoL measurement instruments; however, little is known about the differences between them. Method: We recruited 569 3rd to 6th graders from eleven schools in Southern Taiwan. In addition to the three QoL questionnaires, the Child Depression Inventory and Rosenberg Self-Esteem Scale were applied. Results: Depression had significantly negative associations with all three QoL questionnaires. Self-esteem was only associated with Kid-KINDL. Body mass index had a significantly stronger relationship with Sizing Me Up than its relationships with PedsQL and Kid-KINDL. In other words, the items related to body size concerns in Size Me Up significantly contributed to impaired overweight/obese children’s QoL. Conclusions: The study further identified the characters and strength of these QoL measures for better suggestions on evaluating physical and psychological issues for overweight/obese children.