The Center for Epidemiologic Studies Depression Scale: factor validity and reliability in a French sample of adolescents with Intellectual Disability

The purpose of this study was to test the factor validity and reliability of the Center for Epidemiologic Studies Depression Scale (CES-D) within a sample of adolescents with mild to moderate Intellectual Disability (ID). A total sample of 189 adolescents (121 boys and 68 girls), aged between 12 and 18 years old, with mild to moderate ID were involved in two studies. In study 1, the content, phrasing and answering format of the CES-D were adapted for adolescents with ID. This instrument was renamed CES-D for ID (CES-D-ID) and two different versions based on two alternative answer scales (Likert and Likert-graphical) were developed and their psychometric properties were verified in study 2. The results provided support for the factor validity, reliability and invariance across gender and age of a 14-item version of the CES-D-ID based on a Likert-graphical answer scale.     

Psychopathology in Children and Adolescents with Autism Compared to Young People with Intellectual Disability

Autism is a neurodevelopmental disorder with a specific pattern of behavioural, communication and social problems. Additional mental health problems are often poorly understood and undetected. This study investigates the level and pattern of emotional and behavioural problems in young people with autism compared with children with intellectual disability (ID). Subjects were 381 young people with autism and a representative group of 581 Australian young people with ID aged 4–18 years. Parents/carers provided details of the emotional and behavioural problems of their child using the Developmental Behaviour Checklist (DBC-P). Young people with autism were found to suffer from significantly higher levels of psychopathology than young people with ID. The implications of this finding are discussed.     

Sociodemographic Characteristics,Risk Factors,and Prevalence of Comorbidity among Children and Adolescents with Intellectual Disability: A Cross-sectional Study

ABSTRACT

Introduction: Intellectual disability (ID) is characterized by limitations in cognitive and adaptive functioning. The aim of this study is to examine sociodemographic characteristics, perinatal and childhood risk factors, and prevalence of psychiatric and biomedical comorbidities in children with ID.

Methods: 260 patients with ID were included in the study (mean age: 8.42 ± 3.59, 61% male, 75% mild ID). The Ankara Developmental Screening Inventory, the Wechsler Intelligence Scale for Children–Revised, and the Porteus Maze Test were used to assess the intelligence of the participants. An additional questionnaire was used to investigate their sociodemographic characteristics and birth, developmental, and medical histories.

Results: Adverse perinatal/neonatal events (p < .001), biomedical comorbidities (p < .001) and seizure/convulsion history (p < .001) were strongly associated with the moderate-severe ID. The children with mild ID had more emotional-social deprivation (p = .022). Low socioeconomic situation, parental education, and teenage parenthood were risk factors for stimulus deficiency. While internalizing disorders were more common in those with mild ID and among girls, externalizing disorders were more common in those with moderate-severe ID and among boys.

Conclusion: Interventions to perinatal/neonatal events may reduce the rate of moderate-severe ID. Evaluation of psychiatric and medical comorbidities and elimination of emotional-social deprivation should be fundamental components of the services offered to children with ID.     

Initial validation of the Brief Assessment of Service Satisfaction in Persons with an Intellectual Disability (BASSPID)

Individuals with an intellectual disability often require intensive services to promote their social participation to the fullest extent. As such, measuring satisfaction with these services appears essential to enhance the quality of life of individuals with an intellectual disability and to improve service delivery within agencies. Thus, the purpose of the study was to conduct an initial validation of the Brief Assessment of Service Satisfaction in Persons with an Intellectual Disability (BASSPID), a 15-item questionnaire designed to assess service satisfaction. To examine the structure, reliability, and validity of the BASSPID, we interviewed 98 individuals with an intellectual disability and 23 parents. Overall, the BASSPID contained one scale, which had strong content and convergent validity as well as items easily understandable for individuals with an intellectual disability. Furthermore, the questionnaire had good internal consistency and adequate test-retest reliability. However, parents generally overestimated the perceived satisfaction of their child. The study suggests that the BASSPID may be useful to assess the satisfaction of individuals with an intellectual disability, but more research is needed to examine its potential impact on improving service quality.     

Prevalence and Correlates of Pica Among Adults with Intellectual Disability in Institutions

Increased knowledge of complex behaviors such as pica is needed to improve the support and services in the community for individuals with intellectual disability (ID). Though the prevalence of pica has been documented extensively in institutionalized settings, few studies have explored its etiology. The aim of this study is to explore the correlates of pica among institutionalized adults with ID. Secondary data analysis was performed on census-level data on 1,008 persons with ID residing in Ontario's remaining specialized institutions. All persons had been assessed using the interRAI Intellectual Disability (interRAI ID; Martin, Hirdes, Fries, & Smith, 2007 Martin, L., Hirdes, J. P., Fries, B. E and Smith, T. F. 2007. Development and psychometric properties of an assessment for persons with intellectual disability—The interRAI ID. Journal of Policy and Practice in Intellectual Disabilities, 4(1): 23–29.  [Google Scholar]) assessment instrument—a comprehensive and standardized instrument that supports service planning. Bivariate and multivariate analyses were used to explore the relation between pica and demographic, functional, and clinical characteristics. The overall prevalence of pica was 21.8%. Logistic regression analysis showed that being male, a diagnosis of autism, and use of nonverbal means of communication were associated with a higher likelihood of pica, whereas impairment in activities of daily living reduced that likelihood. A curvilinear relation was observed between cognitive functioning and pica. The prevalence of pica is quite high in Ontario's institutions, and nonverbal communication emerged as the strongest correlate of the behavior. The implications for education, training, and interventions are discussed.     

The French version of the Reiss Screen for Maladaptive Behavior: Factor structure,point prevalence and associated factors

The main aims of the present study were to examine the factor structure and the internal consistency of the factors in the French version of the Reiss Screen of Maladaptive Behavior in a French-speaking European sample. The prevalence of psychopathology and the influence of associated factors were also examined. The Reiss Screen was administered to 467 adults (age range: 18–73) with intellectual disability living in the French-speaking regions of Switzerland and Belgium. A confirmatory factor analysis was performed to replicate the original factor structure. Internal consistency was examined by using Cronbach's alpha. Analyses of variance were computed to study the influence of gender, age and Down syndrome etiology. The original factor structure of the Reiss Screen was replicated. The overall rate of psychopathology in the sample was 37%. No linear relationship between age and psychopathology was found. However, adults aged less than 26 years had lower scores than older adults on several psychopathological domains. Males had higher scores than females on the Autism and the Avoidant Disorder subscales. Participants with Down syndrome had lower scores on all domains, with the exception of the Autism subscale. The results of this study suggest that the French version of the Reiss Screen can be a useful tool to detect psychopathology in adults with intellectual disability.     

The Prevalence and Characteristics of Intellectual and Borderline Intellectual Disabilities in a Sample of Inpatients with Substance Use Disorders: Preliminary Clinical Results

Introduction: There is reason to believe that many individuals with substance use disorders (SUD), who are in contact with services, have an undiagnosed intellectual disability. The aim of the present study was to investigate the prevalence of intellectual and borderline intellectual disabilities (ID/BID) among inpatients with SUD and to further explore their characteristics. Methods: Ninety-one SUD inpatients aged 19–64 participated in the study. SUD was diagnosed according to the ICD-10. ID/BID was diagnosed through the Wechsler Adult Intelligence Scale, the Vineland Adaptive Behavior Scale, and self-reported childhood learning difficulties. Results: ID/BID prevalence was up to 30%. There were significant differences between ID/BID and non-ID groups for several social variables. With the exception of substance-use relapse, there were no significant differences in substance-related factors. Conclusions: ID/BID prevalence in SUD might be high. These conditions often go undiagnosed in SUD treatment. The conditions and associated difficulties should be identified for better understanding and individually adapted treatment.     

Comparing Rates of Psychiatric and Behavior Disorders in Adolescents and Young Adults with Severe Intellectual Disability with and without Autism

Eight males and four females with an Autism Diagnostic Interview-Revised (ADI-R) diagnosis of autism (mean age of 16.3 years) and severe intellectual disability (IQ < 40) were individually matched to controls on the basis of chronological age, gender, and nonverbal IQ. The dependent measure was the Diagnostic Assessment for the Severely Handicapped-II, which is used to screen for psychiatric and behavior disorders in lower-functioning individuals. Participants with autism showed significantly greater disturbances as measured by the Diagnostic Assessment for the Severely Handicapped-II total score and seven of 13 subscales. They also averaged 5.25 clinically significant disturbances compared with 1.25 disturbances for participants without autism. Specific vulnerabilities to anxiety, mood, sleep, organic syndromes, and stereotypies/ tics were found in the participants with comorbid autism.     

Comparing Observations and Perceptions of Mother-adolescent Conflict: Youth with Typical Development,Intellectual Disability,or Autism Spectrum Disorders

ABSTRACT

Introduction: While transitioning to adulthood presents challenges for youth with developmental disabilities (DD), opportunities to develop adult social roles and communication skills may foster more optimal outcomes. One such opportunity is developing conflict resolution skills within parent-adolescent relationships.

Methods: We examined how reported conflict and observed conflict resolution behaviors differed between adolescents with typical development or DD, specifically intellectual disability (ID) and/or autism spectrum disorder, and their mothers. Participants (n = 167) were mid-adolescents (age 15) from a longitudinal study of how psychopathology develops in youth with or without DD.

Results: While mothers’ Reported Conflict was similar across groups, Mother Problem Solving was highest, and Youth Problem Solving lowest, in families of youth with ID. Higher Reported Conflict related to more negative observed conflict resolution behaviors across all groups.

Conclusions: Results are considered in the context of transitioning to adulthood.     

Male-Specific cAMP Signaling in the Hippocampus Controls Spatial Memory Deficits in a Mouse Model of Autism and Intellectual Disability

Background

The prevalence of neurodevelopmental disorders is biased toward male individuals, with male-to-female ratios of 2:1 in intellectual disability and 4:1 in autism spectrum disorder. However, the molecular mechanisms of such bias remain unknown. While characterizing a mouse model for loss of the signaling scaffold coiled-coil and C2 domain-containing protein 1A (CC2D1A), which is mutated in intellectual disability and autism spectrum disorder, we identified biochemical and behavioral differences between male and female mice, and explored whether CC2D1A controls male-specific intracellular signaling.

The effects of gender and age on repetitive and/or restricted behaviors and interests in adults with autism spectrum disorders and intellectual disability

Frequency of repetitive and/or restricted behaviors and interests (RRBIs) was assessed in 140 adults with autism spectrum disorders (ASDs) and severe or profound intellectual disability (ID). The associations of gender and age range were analyzed with RRBI frequency which was obtained using the Stereotypies subscale of the Diagnostic Assessment for the Severely Handicapped-II (DASH-II). A significant main effect of gender was found. Male participants had higher frequency of RRBIs than females regardless of age range. There was not a significant main effect of age range or a significant interaction between gender and age range. Results and implications are discussed.     

The intellectual disability version of the very short form of the physical self-inventory (PSI-VS-ID): cross-validation and measurement invariance across gender, weight, age and intellectual disability level

Recently Maïano, Bégarie, Morin, and Ninot (2009) developed and validated an intellectual disability (ID) version of the very short form of the physical self-inventory (PSI-VS-ID). In a recent review of the various physical self-concept instruments Marsh and Cheng (in press) noted that the short and very short versions of the French PSI represent an important contribution to applied research but that further research was needed to investigate the robustness of their psychometric properties in new and diversified samples. Thus, this study is specifically designed to investigate the robustness of the PSI-VS-ID psychometric properties in a new independent sample of 248 adolescents and young adults with ID. In particular, tests of measurement invariance were conducted across the present sample and the original sample from Maïano et al. (2009) study in order to more precisely assess the degree of replication of the results. Overall, results from a series of confirmatory factor analyses of the PSI-VS-ID provided support for its: (i) factorial validity and reliability; (ii) factorial invariance across gender and weight status; (iii) partial (strict or strong) factorial invariance across age, ID level and samples; and (iv) latent mean differences across gender, weight status and ID level groups.     

Reliability and Validity of the HoNOS-LD and HoNOS in a Sample of Individuals with Mild to Borderline Intellectual Disability and Severe Emotional and Behavior Disorders

In this study, psychometric properties of the Health of the Nation Outcome scales (HoNOS) and Health of the Nation Outcome Scales for People with Learning Disabilities (HoNOS-LD) were investigated in a sample (n = 79) of (young) adults with mild to borderline intellectual disability (ID) and severe behavior and mental health problems who were admitted for treatment. Informant pairs were 14 direct care staff and 15 psychiatrists/psychologists who completed both the HoNOS and HoNOS-LD as well as other scales (i.e., Social Functioning Scale for the Mentally Retarded [SRZ-P], Adult Behavior Checklist [ABCL]). Generally, internal consistency was fair to good for both scales, and intraclass coefficients for (sub)scales ranged from fair to good. Low Intraclass Correlation Coefficients (ICCs) were found for several items from both scales. Outcomes pertaining to criterion validity were mixed. Finally, although we found a positive relationship between scores on the HoNOS and HoNOS-LD and those of the ABCL, the relationships between scores of both HoNOS and HoNOS and the SRZ-P were negative. It is concluded that both HoNOS and HoNOS-LD may be used in clients with mild to borderline ID and that outcomes may depend on the type of rater. The HoNOS-LD may be more suitable for assessing general functioning of clients with mild to borderline ID than the HoNOS.     

The association between behavioural and emotional problems and age in adults with Down syndrome without dementia: Examining a wide spectrum of behavioural and emotional problems

The literature on the association between behavioural and emotional problems and ageing in adults with Down syndrome (DS) without dementia is limited and has generally not reported on a wide range of behavioural and emotional problems. This research aimed to extend the field by examining the associations between age and a wide spectrum of behavioural and emotional problems in adults with DS without dementia. A preliminary analysis of the association between potential covariates and behavioural and emotional problems was also undertaken.Parents and caregivers completed a questionnaire on behavioural and emotional problems for 53 adults with DS aged between 16 and 56 years. Twenty-eight adults with DS and their caregivers were part of a longitudinal sample, which provided two time points of data approximately four years apart. Additionally, 25 participants with DS and their caregivers were from a cross sectional sample, which provided one time point of data. Random effects regression analyses were used to examine the patterns in item scores for behavioural and emotional problems associated with age.No significant associations between age and the range or severity of any behavioural and emotional items were found. This suggested a more positive pattern for ageing adults with DS than has been previously described. Given that behavioural and emotional problems were not associated with age, investigation into other factors that may be associated with the behavioural and emotional difficulties for adults with DS is discussed.     

Mental Disorders and Problem Behavior in a Community Sample of Adults with Intellectual Disability: Three-Month Prevalence and Comorbidity

The aim of this study was to investigate the prevalence of mental disorders in a Norwegian sample of adults with intellectual disability (ID) using the Psychopathology Checklists for Adults With Intellectual Disability (P-AID; Hove & Havik, 2008 Hove, O. and Havik, O. E. 2008. Psychometric properties of Psychopathology Checklists for Adults With Intellectual Disability (P-AID) on a community sample of adults with intellectual disability. Research in Developmental Disabilities, 29: 467–482.  [Google Scholar]), a screening instrument adopting diagnostic criteria from the Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Intellectual Disability/Mental Retardation (DC-LD; Royal College of Psychiatrists, 2001 Royal College of Psychiatrists. 2001. DC-LD: Diagnostic criteria for psychiatric disorders for use with adults with learning disabilities/mental retardation, London: Gaskell.  [Google Scholar]). The P-AID checklists, comprising 10 psychiatric diagnoses and 8 types of problem behaviors, were completed by staff at community-based homes for adults with ID in Western Norway. One in three adults with ID showed indices of a mental disorder. Problem behavior was the most prevalent single diagnosis next to anxiety and affective disorder, and there was a high frequency of comorbidity among the disorders. The findings extend previous reports on mental disorders and comorbidity and support the use of DC-LD in epidemiological research.     

Identification of Post-Traumatic Stress Disorder in Individuals with Autism Spectrum Disorder and Intellectual Disability: A Systematic Review

Introduction: autism spectrum disorder (ASD) and intellectual disability (ID) seem to influence the risk of and vulnerability to exposure to trauma and adverse events. While assessment of a psychiatric disorder in ASD and ID generally is challenging, identification of post-traumatic stress disorder (PTSD) seems particularly so, and knowledge does not seem easily accessible. Methods: This article provides a systematic review of studies describing trauma reactions in individuals with both ASD and ID, including studies involving any single case with the combination of ASD, ID, and PTSD. To systematically explore PTSD symptom presentation in the group, all reported symptoms from studies were assigned by DSM-5 criteria. Results: Eighteen studies met the inclusion criteria, eight group studies and 10 case studies. Assessment methodology in studies varied, as did the format of symptom report. DSM-5 criteria provided a useful framework for integrating findings across studies, indicating that PTSD may be identified in individuals with ASD and ID. However, symptoms involving alterations in arousal and negative alterations in thought and behavior seem more easily identified than symptoms of reexperiencing and avoidance. Conclusions: There is an urgent need to identify behavioral equivalents to PTSD symptoms in this group, making it possible to identify warning signs of trauma and abuse even if such incidents are not known to family or professional carers.     

A White Paper on the medical and social needs of people with epilepsy and intellectual disability: The Task Force on Intellectual Disabilities and Epilepsy of the International League Against Epilepsy

This White Paper builds on the publication of the International League Against Epilepsy (ILAE) and International Bureau for Epilepsy (IBE) report “Listening for a change—medical and social needs of people with intellectual disability who have epilepsy” (Listening for a change the medical and social needs of people with epilepsy and intellectual disability, ILAE, 2013). The Paper presents an overview of the recommendations of the report, which aim to improve the health and social care of this important population of people with epilepsy worldwide. Actions in four domains are indicated: (1) the development of standards and initiatives that would enhance diagnosis, pathways to investigation, and treatment; (2) the development of guidelines for treatment, specifically best practice in the management of antiepileptic drugs including rescue medication; (3) the development of standards for primary care, multidisciplinary teamwork, and clinical consultations, with emphasis on the need to enhance communication and improve access to information; and (4) the enhancement of links among different stakeholders including medical services, educational establishments, employment services, organizations providing opportunities for social engagement, and family members. The breadth of needs of this population is a challenge to the epilepsy world, spanning all the professional groupings, care providers, and the research modalities in epilepsy.