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PubMed1989

Reliability and validity of the Childhood Autism Rating Scale--Tokyo version (CARS-TV).

A Japanese translation of the Childhood Autism Rating Scale (CARS) (the Tokyo version of the CARS, CARS-TV) was used with 167 developmentally disabled children under age 16. Cronbach's coefficient alpha was .87. The interrater reliability (r) for each of the 15 scales based on 128 children ranged from .43 to .77 with an average of .62. Based on the 167 children, the total CARS-TV score demonstrated a satisfactory level of taxonomic validity (Thorndike, 1982) on DSM-III diagnostic groups. The total score discriminated infantile autism and other pervasive developmental disorders more efficiently from mental retardation without an additional diagnosis of pervasive developmental disorder than an IQ. The total score also showed a satisfactory concurrent validity on the overall rating of autism.

Adolescent↗

PubMed2001

The adverse neuro-developmental effects of postnatal steroids in the preterm infant: a systematic review of RCTs.

BACKGROUND: Recent reports have raised concerns that postnatal steroids may cause neuro-developmental impairment in preterm infants. This systematic review was performed with the objective of determining whether glucocorticoid therapy, to prevent or treat bronchopulmonary dysplasia, impairs neuro-developmental outcomes in preterm infants. METHOD: A systematic review of the literature was performed. Medline was searched and articles retrieved using predefined criteria. Data from randomized controlled trials with adequate neuro-developmental follow up (to at least one year) were entered into a meta-analysis to determine the effects of postnatal treatment of preterm infants with glucocorticoids. Cerebral palsy rates, and neuro-developmental impairment (developmental score more than 2SD below the mean, or cerebral palsy or blindness) were analyzed. The studies were divided into 2 groups according to the extent of contamination of the results by treatment of controls with steroids after the initial study period, those with less than 30% contamination, and those with more than 30% contamination or size of contamination not reported. RESULTS: Postnatal steroid therapy is associated with an increase in cerebral palsy and neuro-developmental impairment. The studies with less contamination show a greater effect of the steroids, consistent with a real direct toxic effect of steroids on the developing central nervous system. The typical relative risk for the development of cerebral palsy derived from studies with less than 30% contamination is 2.86 (95% CI 1.95, 4.19). The typical relative risk for the development of neuro-developmental disability among followed up infants from studies with less than 30% contamination is 1.66 (95% CI 1.26, 2.19). From this subgroup of studies, the number of premature infants who need to be treated to have one more infant with cerebral palsy (number needed to harm, NNH) is 7; to have one more infant with neuro-developmental impairment the NNH is 11. CONCLUSIONS: Postnatal pharmacologic steroid treatment for prevention or treatment of bronchopulmonary dysplasia is associated with dramatic increases in neuro-developmental impairment. As there is no clear evidence in the literature of long term benefit, their use for this indication should be abandoned.

Adrenal Cortex Hormones↗

PubMed1994

Aberrant behaviors of young boys with fragile X syndrome.

To determine whether aberrant behaviors described in boys with fragile X syndrome distinguish them from other boys with developmental disabilities, we asked the primary caregivers of 55 boys with fragile X and 57 matched controls to complete five behavioral questionnaires. Twenty-one items distinguished the groups. Principal components analysis (PCA) yielded five behavioral clusters: abnormal language, tactile defensiveness, poor self-control, poor eye contact/shyness, and hand flapping. Boys with fragile X were found times more likely to have both tactile defensiveness and abnormal language. The presence of these abnormal behaviors in boys with developmental delays warrants further assessment for fragile X.

Autistic Disorder↗

PubMed2000

Epilepsy in rural South African children--prevalence, associated disability and management.

OBJECTIVE: To determine the prevalence of epilepsy and its associated disabilities in rural South African children aged 2-9 years. SETTING: Eight villages in the district of Bushbuckridge, Northern Province, South Africa. DESIGN: A two-phase design was used. The first phase involved screening children on a house-to-house basis by interviewing mothers or caregivers using an internationally validated questionnaire for detecting childhood disability in developing countries. The second phase consisted of a paediatric/neurodevelopmental assessment of the children who screened positive. RESULTS: A total of 6,692 children were screened; 722 (10.8%) had a paediatric evaluation and 49 (0.73%) had epilepsy. The lifetime and active prevalences of epilepsy in these children were 7.3/1,000 and 6.7/1,000 respectively. Associated developmental disability was recorded in 35 affected children (71.4%), including 8 (16.3%) in whom this was moderate to severe. More than a half of the children with epilepsy (57.1%) did not receive anticonvulsant medication. CONCLUSION: The prevalence of epilepsy in the rural childhood population investigated is higher than that recorded in most similar studies from sub-Saharan Africa, and the poor utilisation of appropriate anticonvulsant treatment is cause for concern. This study highlights the paucity of relevant information on the epidemiology of epilepsy in South Africa and that the system available for its management, especially in rural areas, appears to have functional deficiencies. Appropriate research is needed to identify the problems in service delivery and to enable the planning and implementation of an appropriate primary health care-based system for the diagnosis and management of epilepsy in children.

Child↗

PubMed2005

Psychotropic medication use among Kansas Medicaid youths with disabilities.

Knowledge of current patterns of psychotropic medication use by disabled youths is an important starting point for targeting future efforts to improve prescribing practices. This study provides a retrospective, descriptive analysis of the prevalence and patterns of psychotropic medication among 1022 Kansas Medicaid youths in 2001 who were enrolled with either Supplemental Security Income (SSI) or Medically Needy benefits and who were having clearly defined mental and neurological disabilities. Rates of psychotropic medication use were generally higher for the Medically Needy than for the SSI youths: Central nervous system (CNS) stimulants (24.6% versus 20.0%), antidepressants (30.9% versus 13.7%), anticonvulsants (22.0% versus 13.9%), and antipsychotics (23.3% versus 11.5%). Use of the four major drug classes varied among children with attention-deficit/hyperactivity disorder (ADHD) and disruptive disorders, pervasive developmental disabilities, mental retardation (MR) and learning disabilities, mood and anxiety disorders, and adjustment disorders. Future work should explore the appropriateness and effectiveness of these medications within specifically targeted subgroups.

Adolescent↗

PubMed2002

Community integration and statewide systems change: qualitative evaluation research in community life and disability.

As the disability field moves to the next generation of community life, this article describes the findings of a qualitative state policy research study on deinstitutionalization and community integration. New Hampshire was selected as a leading national example in the United States based, in part, upon the closure of its only public institution showing community leadership in the field of mental retardation and developmental disabilities. Drawing on the disciplines of politicial science, sociology, psychology and rehabilitation (Majchrzak, 1980), the research design uses a multi-case, multi-site study approach (Yin, 1989), and on-site, semi-structured interviewing of key informants using a research field guide (Taylor & Bogdan, 1984/1998). The qualitative research reflects an indepth version of state formative evaluation research studies on community integration (e.g, Taylor, Racino, & Rothenberg, 1988), and the use of coded data and multiple analytic techniques (e.g., Glaser & Strauss, 1967) congruent with the emerging support and empowerment paradigm (Racino, 1992). The article highlights four sets of research findings (i.e., state characteristics and community integration practices, thematic case studies of change, comparative roles in the change process, and a theoretical framework for understanding change) which form the basis for further statewide study of change toward community life in the United States.

Community Mental Health Services↗

PubMed2002

Chronic illness as a family process: a social-developmental approach to promoting resilience.

This paper describes a social-developmental approach to interventions in chronic illness using naturally occurring processes of change during family life-cycle transitions to promote more positive developmental outcomes. Clinical interventions can help build resilience by creating a therapeutic collaboration designed to help patients improve their use of existing and new resources in multiple systems. They can then better meet demands of the illness as it impacts on shared development. A case example of a 13-year-old daughter with complex, chronic health problems and developmental disabilities illustrates clinical interventions designed to promote family resilience during the entry into adolescence and a transition in schooling. This approach involves focusing on the family's own definition of the current problem and relevant history, constructing a multidimensional, coherent story of the illness and its impact that recognizes stressors yet highlights strengths, and normalizing their strategies for stability under circumstances of developmental stress. These interventions with mother, daughter, and family helped improve health efficacy, communication toward mutual understanding and shared problem solving, and better use of existing and new resources to enhance current and future developmental adaptation.

Adaptation, Psychological↗

PubMed1996

Predictors of mortality in children with severe mental retardation: the effect of placement.

OBJECTIVES: This study was undertaken to assess the predictors of mortality in severely disabled children with mental retardation, and to compare risk-adjusted mortality rates for those living in institutions with rates for those living in the community. METHODS: Statistical analysis was performed on a set of 24,469 person-years, derived from a population of all children with severe mental retardation and a fragile medical condition who are registered with the California Department of Developmental Services. Variables included age, several measures of mobility, the presence or absence of tube feeding, the level of retardation, and certain adaptive skills. RESULTS: Reduced mobility and the use of tube feeding were associated with a large increase in mortality risk. Own home residence and community care facilities have an estimated 25% higher risk-adjusted odds on mortality than institutions and health facilities. CONCLUSIONS: The differential mortality in the placements points to a possible effect of quality of care. One consequence of the current trend toward deinstitutionalization may be an increased mortality rate in children with severe developmental disability.

Adolescent↗

PubMed1984

Neuropsychological approaches to children: towards a developmental neuropsychology.

Neuropsychologists working with children commonly infer a CNS basis for many developmental disabilities on the basis of test performance and behavioral observations. While there is nothing inherently wrong with such inferences, the fact that there exists no specific set of brain-behavior relationships validating these inferences is frequently overlooked. In this respect, CNS inferences on the basis of the child's performance can lead to four potential fallacies concerning relationships between brain and behavior. Each of these fallacies involves a failure to recognize important behavioral and biological differences between children and adults, or simply rests on faulty logic and inadequate research. In an effort to outline a truly developmental neuropsychology for children--as opposed to diverse approaches that apply adult-based techniques to children--we propose a functional organization approach. This approach separates the different types of variables underlying a developmental neuropsychology and focuses on behavioral theory and research addressing the development of children's abilities. A specific emphasis of this approach is on processes of change--one of the primary psychological characteristics separating children and adults. The use of this approach as a general research strategy for children whose disabilities are associated with demonstrable or presumed CNS aberrations may lead to a set of behavioral laws that can be systematically related to a biological substrate.

Attention Deficit Disorder with Hyperactivity↗

PubMed2002

Public health issues related to infection in pregnancy and cerebral palsy.

Cerebral palsy is the most common neuromotor developmental disability of childhood, affecting as many as 8,000 to 12,000 children born in the U.S. each year (corresponding to a prevalence rate of between 2 and 3 per 1000 children). Recent improvements in neonatal care have not resulted in a decline in the overall prevalence of cerebral palsy and, in fact, greater numbers of very preterm/very low birth weight infants are surviving with cerebral palsy and other developmental problems. Infection in pregnancy may be an important cause of the disorder. In preterm infants, there appears to be about a 2-fold increased risk for cerebral palsy from chorioamnionitis, and in term infants the estimated increased risk is about 4-fold. Provisionally, chorioamnionitis might account for 12% of spastic cerebral palsy in term infants and 28% of cerebral palsy in preterm infants. Studies of biochemical markers of fetal inflammation typically associated with infection also suggest that an inflammatory response may be an important independent etiologic factor. If a substantial proportion of cerebral palsy is attributable to acute amnionitis infection and/or neonatal sepsis, cerebral palsy should have decreased in the United States after administration of intrapartum antibiotics became widespread in response to publication of public health consensus guidelines for Group B streptococcus in 1996. However, failure to detect declines could have a number of explanations and these explanations illustrate the many public health challenges related to intrauterine infection and cerebral palsy. Given the gaps in our current knowledge about intrauterine infection and cerebral palsy, public health recommendations for timely and specific prevention activities are limited at this time.

Anti-Bacterial Agents↗

PubMed2006

Nondisjunction and transmission ratio distortion ofChromosome 2 in a (2.8) Robertsonian translocation mouse strain.

Aneuploidy results from nondisjunction of chromosomes in meiosis and is the leading cause of developmental disabilities and mental retardation in humans. Therefore, understanding aspects of chromosome segregation in a genetic model is of value. Mice heterozygous for a (2.8) Robertsonian translocation were intercrossed with chromosomally normal mice and Chromosome 2 was genotyped for number and parental origin in 836 individuals at 8.5 dpc. The frequency of nondisjunction of this Robertsonian chromosome is 1.58%. Trisomy of Chromosome 2 with two maternally derived chromosomes is the most developmentally successful aneuploid karyotype at 8.5 dpc. Trisomy of Chromosome 2 with two paternally derived chromosomes is developmentally delayed and less frequent than the converse. Individuals with maternal or paternal uniparental disomy of Chromosome 2 were not detected at 8.5 dpc. Nondisjunction events were distributed randomly across litters, i.e., no evidence for clustering was found. Transmission ratio distortion is frequently observed in Robertsonian chromosomes and a bias against the transmission of the (2.8) Chromosome was detected. Interestingly, this was observed for female and male transmitting parents.

Aneuploidy↗

PubMed1991

Guidelines for safe transportation of children in wheelchairs.

Advocacy efforts by health care professionals have prompted state legislative changes mandating the use of car seats and seat belts by children. These initiatives have greatly improved the level of safety in transportation of nonhandicapped children. Despite these positive changes, the transportation needs of nonambulatory children have not been addressed. In addition, implementation of Public Law 99-457 will result in larger numbers of young children with motor impairments requiring transportation to preschool early intervention programs. This study sought to describe how safely children in wheelchairs are transported. Observations of subjects were made as they were transported by their families or agencies at a residential summer camp, a preschool program for children with developmental disabilities, and a school for children with cerebral palsy. A safety score system was developed based on laboratory studies conducted on wheelchair restraint systems. This observation tool described the position of the wheelchair in the vehicle, the occupant restraint system, and the wheelchair restraint system. These structured observations revealed inadequate safety measures. Comparisons of safety scores of subjects transported by families with those transported by agencies were not found to have statistically significant differences. The findings of this study demonstrate a gap between minimal safety standards in wheelchair transportation and actual observed practices. In an effort to promote safe transportation practices of children regardless of their developmental differences, we present guidelines for health care providers for monitoring safe wheelchair practices in family, school, and community settings.

Adolescent↗

PubMed1989

A comparative study of vocational development of able bodied and disabled persons.

The vocational development of 547 disabled students in the United States and the Federal Republic of Germany was compared with a group of able bodied students in the U.S. on the Goldberg Scale of Vocational Development (GSVD), measuring plans, realism, initiative, work values, commitment, and occupational awareness. The students were classified into 8 groups, and covaried by age. The average scores from high to low on vocational development were: able bodied, cystic fibrosis, congenital heart, orthopedic, facial burns, delinquent, developmental disability, learning or mental retardation. The German students made plans specifically tailored to training courses whereas the American students made more varied and open ended plans with higher aspirations for the future. All 7 disabled groups scored lower than the able bodied group, with only the cystic fibrosis group approaching normality.

Adolescent↗

PubMed2004

Life events and psychiatric symptoms in adults with intellectual disabilities.

BACKGROUND: Previous research has indicated that children and adults with intellectual disabilities (ID) may respond to traumatic and other life events in a similar way to the general population. However, few studies have charted the extent of exposure to recent life events in samples of adults with ID and the association of such exposure with general psychiatric problems. METHODS: Adults with ID (n = 1155) in community and residential services in a county district in North-east England were assessed using the Psychiatric Assessment for Adults with Developmental Disabilities Checklist (PAS-ADD Checklist), which includes a checklist of recent life events. Data were provided by informants who knew the index client well. RESULTS: Within the 12 months before data collection, the five most frequently experienced life events were: moving residence (15.5% of sample), serious illness of close relative or friend (9.0%), serious problem with close friend, neighbour or relative (8.8%), serious illness or injury to self (8.5%), and death of close family friend or other relative (8.3%). Overall, 46.3% had experienced one or more significant life events in the previous 12 months and 17.4% had experienced two or more. Logistic regression analysis revealed that the presence of one or more life events in the previous 12 months added significantly to the classification of psychiatric caseness predicted by demographic variables (age, sex, residence in community or hospital) on the PAS-ADD Affective Disorder scale. Overall, the odds ratio for affective disorder given exposure to one or more life events was 2.23 [95% confidence interval (CI) = 1.56, 3.18]. CONCLUSIONS: Small, but potentially significant relationships were found between life events exposure and psychiatric problems in adults with ID. Further research is needed to explore the causal direction of this relationship and also to develop more sensitive measures of life events relevant to the situation of adults in residential and community service environments.

Adolescent↗

PubMed2005

Screening for autism in young children: The Modified Checklist for Autism in Toddlers (M-CHAT) and other measures.

The literature on the importance of early identification and early intervention for children with developmental disabilities such as autism continues to grow. The increased prevalence of autistic spectrum disorders has fostered research efforts on the development and validation of autism-specific screening instruments for use with young children. There are currently several such autism-specific screening tools meant to be used with young children in various stages of development. Data from a few of these screening instruments have been published, and they include the Checklist for Autism in Toddlers (CHAT), Pervasive Developmental Disorders Screening Test (PDDST), Screening Tool for Autism in Two year olds (STAT), Checklist for Autism in Toddlers-23 (CHAT-23), and the Modified Checklist for Autism in Toddlers (M-CHAT). In this review, these five tools designed for use with children under three years old will be highlighted. In particular, the Modified Checklist for Autism in Toddlers (M-CHAT) will be discussed.

Age Factors↗

PubMed1997

The international consensus process on psychopharmacology and intellectual disability.

The present authors invited 115 scientists, practitioners and consumers from 11 nations to form an international consensus panel on best practices and clinical effects regarding psychoactive medicines and intellectual disability. Co-sponsors included the American Association on Mental Retardation, the American Psychiatric Association, the American Psychological Association, the National Institute of Mental Health, the National Association on Dual Diagnosis and The Arc of the United States. The panel developed 21 reports that were revised to reflect comments from 351 participants at a 1995 Ohio State University conference in Columbus, OH, USA. The reports will be published as chapters in a forthcoming book entitled Psychotropic Medication and Developmental Disabilities: The International Consensus Handbook. The need for research and training programmes is discussed.

Diagnostic Errors↗

PubMed1997

Serious hearing impairment among children aged 3-10 years--Atlanta, Georgia, 1991-1993.

Hearing impairment without appropriate intervention among young children can delay the acquisition of speech and language skills that, in turn, can result in learning and other problems at school age. Interventions to reduce the occurrence of communication disabilities associated with hearing impairment are most successful if affected children are identified early, ideally during the first few months of life. Technologies are now available to accurately and routinely screen all newborns for hearing impairment before hospital discharge. One of the national health objectives for the year 2000 is to reduce the average age at which children with serious hearing impairment are identified to no more than 12 months (objective 17.16). Since 1991, CDC's Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) has monitored the prevalence of serious hearing impairment among children aged 3-10 years in the metropolitan Atlanta area. This report presents findings from MADDSP for 1991-1993 (the most recent years for which data were available) about the age of diagnosis of serious bilateral hearing impairment among children born from 1981 through 1990 and highlights the public health intervention opportunity of universal newborn hearing screening programs for the earlier identification of and intervention for children with hearing impairment.

Child↗

PubMed1991

Development of a clinical measure of postural control for assessment of adaptive seating in children with neuromotor disabilities.

The primary purposes of this article are to review the literature on seating assessment and to describe the development of a clinical evaluation scale, the Seated Postural Control Measure (SPCM), for use with children requiring adaptive seating systems. The SPCM is an observational scale of 22 seated postural alignment items and 12 functional movement items, each scored on a four-point, criterion-referenced scale. A secondary purpose of this article is to report the reliability of the seven-point Level of Sitting Scale (LSS). Interrater and test-retest reliability of the SPCM items and the one-item LSS were evaluated on a sample of 40 children with developmental disabilities who sat with and without their seating systems. Kappa values of .75 or higher were considered excellent, .40 to .74 as fair to good, and less than .40 as poor. The interrater reliability tests for the two seated conditions and the two test sessions conducted 3 weeks apart yielded overall item Kappa coefficient means of .45 for the alignment section and .85 for the function section. Test-retest results for the SPCM items were less satisfactory, with item Kappa coefficient means for the two seating conditions and raters of .35 and .29 for alignment and function, respectively. Reliability results did not appear to be consistently better among seating conditions, raters, or test sessions. Kappa coefficients for the LSS were fair to good for both interrater and test-retest reliability. Plans for future development of the SPCM and LSS are discussed.

Adolescent↗