A psychometric evaluation of a Swedish version of the psychopathology inventory for mentally retarded adults (PIMRA)

Given the difficulties with symptom identification and the assessment of mental health problems in persons with intellectual disabilities (ID) there has been a focus on the development of relevant assessment schedules for persons with ID. A Swedish version of the psychopathology inventory for mentally retarded adults (PIMRA, informant version), an instrument designed for identification of specific mental health problems in persons with ID, was evaluated in terms of inter-rater reliability, internal consistency, item grouping, criterion and concurrent validity based on a sample of 101 adults with different levels of ID. The Swedish version of the PIMRA had low inter-rater agreement on specific items but good agreement on low or high total score. In order to investigate internal validity, principal component analyses (PCA) were conducted in steps. Consequently, the majority of the 26 items, which remained after three PCA analyses, were grouped in a pattern approximating five of the original PIMRA subscales. The present analysis identified no item grouping matching the original Affective disorder subscale. Based on these results a revised Swedish version was developed. The concurrent validity analysis yielded a strong association between the total scores of the PIMRA and Reiss Screen for Maladaptive Behaviour (RSMB), between subscales on both instruments describing psychotic symptoms and between the RSMB subscale Aggressive behaviour and the PIMRA subscale Adjustment problems. The outcome of the criterion validity analysis indicated that individuals with a clinical diagnosis obtained higher total PIMRA scores than individuals without a clinical diagnosis and a comparison between the PIMRA subscale Psychosis and the clinical diagnosis indicating psychoses according to DSM-III-R or DSM-IV yielded a higher specificity than sensitivity measure. The results indicate that the PIMRA had a potential to identify individuals with mental health problems in persons with different levels (mild, moderate and severe) of ID and identify individuals with a specific mental disorder. Thus, professionals might use the PIMRA as a complement in the diagnostic process.     

Psychometric evaluation of a Dutch version of the Mini PAS‐ADD for assessing psychiatric disorders in adults with different levels of intellectual disability

Background People with intellectual disabilities (ID) have an increased vulnerability to develop psychiatric problems. Moreover, the early recognition and the accurate diagnosis of psychiatric disorders in the population of persons with ID are challenging. Method A Dutch version of the Mini PAS‐ADD, which is a screening instrument for identification of mental health problems in people with ID, was evaluated in terms of internal consistency, interinformant reliability, item grouping and criterion validity based on a large‐scale random sample (n = 377) and a clinical sample (n = 99) of adults with ID. Results The Dutch version of the Mini PAS‐ADD showed moderate internal consistency, and moderate concordance among informants. Both aspects of the reliability were comparable for different levels of ID. A factor analysis largely confirmed the scale structure. Concurrent validity with the Reiss Screen for Maladaptive Behavior was high for the Depression, Psychosis and Autism scale. The outcome of the criterion‐validity analysis indicated high specificity. The sensitivity for specific psychiatric disorders by the corresponding scales was moderate, but the general sensitivity for the presence of psychopathology on the basis of any of the scales was satisfying. Conclusions The present research reconfirmed the use of the Mini PAS‐ADD as a primary screening device for the identification of mental health problems among people with ID.     

Validation of the Subjective and Objective Family Burden Interview (SOFBI/ECFOS) in primary caregivers to adults with intellectual disabilities living in the community

Background There is little information on the psychometric properties of instruments for assessing family care burden in adults with intellectual disabilities (ID). The aim of this study is therefore to analyse the usefulness of the ‘Subjective and Objective Family Burden Interview’ (SOFBI) in the assessment of principal caregivers in Spain. Methods The SOFBI was administered to 166 principal caregivers of adults with ID in a vocational centre. The psychometric analysis included: internal consistency, inter‐rater and test–retest reliability, construct validity, convergent validity with the World Health Organization's Disability Assessment Schedule II, and feasibility. Results The Cronbach's alpha was 0.88 for the overall interview and always above 0.7 in the quantitative subdomains. The Kappa coefficients for test–retest were between 0.5 and 0.8, whereas inter‐rater agreement was nearly perfect. Maximum‐likelihood factor analysis showed four well‐defined factors, which fitted the previously designed domains. Feasibility was also good. Conclusions The SOFBI is a multi‐domain, modular instrument which is feasible, reliable and valid for measuring the burden of family caregivers to adults with ID living in the community.     

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.     

Mental health problems in children with intellectual disability: use of the Strengths and Difficulties Questionnaire

Background The assessment of mental health problems in children with intellectual disability (ID) mostly occurs by filling out long questionnaires that are not always validated for children without ID. The aim of this study is to assess the differences in mental health problems between children with ID and without ID, using a short questionnaire, the Strengths and Difficulties Questionnaire (SDQ). Methods We studied 260 children (6–12 years) selected from special education schools for trainable children (response: 57%). Parents completed the extended Dutch version of the SDQ, questions on background characteristics and on the care provided. A non‐ID control group of 707 children (response: 87%) was included to compare mental health problems. Results In total, 60.9% of children with ID had an elevated score on the SDQ, compared with 9.8% of children without ID. Only 45% of the children with ID and an elevated SDQ score had visited a healthcare professional for these problems in the last 6 months. Discussion The SDQ or an adapted version could contribute to the early identification of mental health problems in children with ID. Further research is needed to confirm the validity of the SDQ when used in a sample of children with ID.     

Feasibility, reliability and validity of the Spanish version of Psychiatric Assessment Schedule for Adults with Developmental Disability: a structured psychiatric interview for intellectual disability

Background Over 30% of people with intellectual disability (ID) have a comorbid psychiatric disorder. However, there are few assessment instruments available for international use and cross‐cultural validation studies of these instruments are rare. The aim of the present study was to standardize the Spanish version of the Psychiatric Assessment Schedule for Adults with Developmental Disability (PAS‐ADD‐10), a semi‐structured interview for people with ID. Methods After a conceptual translation, feasibility (i.e. applicability, acceptability and practicality) and reliability analyses were carried out. The predictive validity of the PAS‐ADD‐10 CATEGO‐5 codings was also examined (i.e. positive and negative predictive values). Four independent raters with wide‐ranging experience in quantitative evaluation and psychiatric assessment of ID evaluated a sample of 80 subjects with ID and borderline intellectual functioning at the AFANAS occupational centre in Jerez, Southern Spain. The ICD‐10 codes were used for psychiatric diagnosis. Results The practicality of the PAS‐ADD‐10 is limited because of the need for previous standardization of SCAN interviews. Nevertheless, its overall feasibility was judged adequate by raters and the PAS‐ADD‐10 was considered extremely useful for training. Test–retest and inter‐rater reliability kappa values were moderate to high. The CATEGO coding showed limited validity because of overdiagnosis of anxiety disorders and underdiagnosis of mood and psychotic disorders (positive predictive value = 74%, negative predictive value = 76%). Conclusions The PAS‐ADD‐10 is a useful tool for standard psychiatric assessment of people with ID; however, CATEGO codings show low validity and a series of modifications should be considered before this instrument is used extensively in Spain. In this regard, a study on the clinical usefulness of the PAS‐ADD‐10 in patients with ID and severe mental disorders has been undertaken.     

The ComFor: an instrument for the indication of augmentative communication in people with autism and intellectual disability

Background The ComFor (Forerunners in Communication) is an instrument to explore underlying competence for augmentative communication. More specifically, it measures perception and sense‐making of non‐transient forms of communication at the levels of presentation and representation. The target group consists primarily of individuals with autism and intellectual disability (ID) without or with only limited verbal communication. The ComFor is suitable for children and adults with a developmental level between 12 and 60 months. This paper describes the theoretical framework and structure of the ComFor, the results of a study on its psychometric properties and its clinical uses. Method The ComFor was tested on a sample of 623 children and adults from the Netherlands and Flanders: a group with autism and ID (n = 310); a group with ID without autism (n = 174); and a control group of typically developing children (n = 139). Results The data generally support the reliability and validity of the ComFor. Internal consistency, inter‐rater and test–retest reliability were found to be good. Construct validity (internal structure, convergent and divergent patterns) was established in different ways. The criterion‐related validity has yet to be established, as predictive data are not available at the moment. Conclusion Taken together, the results indicate that the ComFor is a promising instrument to explore underlying competence for augmentative communication. Areas for future research are outlined and the clinical relevance is discussed.     

The association between repetitive behaviours, impulsivity and hyperactivity in people with intellectual disability

Background There is a need for assessments of psychological difference and disorder in people who have more severe intellectual disability (ID). Hyperactivity and impulsivity are two behavioural domains of importance as they are correlated with self‐injury and aggression and this alludes to a shared cognitive correlate of compromised behavioural inhibition. Additionally, compromised behavioural inhibition is demonstrably related to repetitive behaviour and the latter might be expected to be associated with impulsivity and hyperactivity. Methods The Activity Questionnaire (TAQ) was developed for this study. Three sub‐scales with high levels of face validity were supported by factor analysis of the scoring of 755 intellectually disabled participants on the TAQ items. These sub‐scales mapped onto the constructs of Overactivity, Impulsivity and Impulsive Speech. Test–retest, inter‐rater reliability and internal consistency were robust. TAQ scores and scores on the Repetitive Behaviour Questionnaire (RBQ) were collected for a sample of 136 participants with varying degrees of ID. Results Scores on the TAQ at sub‐scale and full‐scale level were not related to level of adaptive functioning. There were significant positive associations between overactivity (TAQ) and stereotyped behaviour (RBQ), impulsivity (TAQ) and restricted preferences (RBQ), and impulsive speech (TAQ) and repetitive speech (RBQ). Conclusions The TAQ is a reliable assessment of hyperactivity and impulsivity for people with ID with robust factor structure. Validity requires evaluation. The relationship between impulsivity and restricted preferences may result from a common cognitive impairment in inhibition, which may underpin these two classes of behaviour.     

Validity and reliability of the Spanish version of the diagnostic assessment for the severely handicapped (DASH-II)

Background and objectivesThe DASH-II scale is a specific instrument for measuring psychopathological symptoms in people with severe and profound intellectual disability (ID). The aim of the study is the validation of the Spanish version, evaluating its reliability and validity. At the same time we examine the prevalence of mental disorders in our sample.Material and methodsTwo reviewers independently passed the Spanish version of the DASH-II (DASH-II-S) to 83 users to establish inter-rater reliability. To assess inter-rater reliability or test–retest reliability, fifty participants were reassessed by the same rater within 7 days.ResultsDASH-II-S showed good internal consistency (Cronbach's α = 0.879) and good reliability, both intra and inter-rater reliability. The prevalence of psychopathology in the sample is 94%, and the use of psychotropic drugs is also high, with 61.4% receiving one or more antipsychotics.ConclusionsDASH-II-S is a valid and reliable instrument that can be used for the assessment of psychopathology in people with ID. The translated version retains the psychometric properties of the original English version. Moreover, the high prevalence of mental disorders in this population may explain the widespread use of psychotropic drugs, but it forces us to continuous reassessment and justification.     

Psychiatric diagnosis in persons with intellectual disability in India

BACKGROUND: This study examines the rate of psychiatric diagnosis as per ICD-10 and Reiss Screen for Maladaptive Behaviours (RSMB), and distribution of psychiatric diagnosis with regard to the severity of intellectual disability (ID). It also explores the degree of agreement between Reiss screen and clinical diagnosis (ICD-10) in relation to dual diagnosis. METHODS: In this study Intelligence (IQ) and Social Quotient (SQ) were estimated on Indian adaptation of Binet's scale and Vineland Social Maturity Scales, respectively, in 60 consecutive persons with ID. Both ICD-10 and RSMB were used independently to determine the presence of psychiatric diagnosis. RESULTS: Clinically, according to ICD-10, about 60% of the sample was found to have dual diagnosis as compared to 48% on RSMB. Agreement between ICD-10 and RSMB about psychiatric comorbidity was 82%. Commonest psychiatric diagnosis was unspecified psychosis followed by bipolar affective disorders. CONCLUSION: Persons with ID do suffer from various psychiatric disorders. RSMB is a useful tool for differentiating between psychiatric problems and maladaptive behaviours. Hence RSMB can be used in the Indian context.     

Family impact in intellectual disability, severe mental health disorders and mental health disorders in ID. A comparison

Family impact (or family burden) is a concept born in the field of mental health that has successfully been exported to the ambit of intellectual disability (ID). However, differences in family impact associated with severe mental health disorders (schizophrenia), to ID or to mental health problems in ID should be expected. Seventy-two adults with intellectual disability clients of the Carmen Pardo-Valcarce Foundation's sheltered workshops and vocational employment programmes in Madrid (Spain), 203 adults diagnosed with schizophrenia from four Spanish Community Mental Health Services (Barcelona, Madrid, Granada and Navarra) and 90 adults with mental health problems in ID (MH-ID) from the Parc Sanitari Sant Joan de Déu Health Care Site in Sant Boi de Llobregat, Barcelona (Spain) were asked to participate in the present study along with their main caregivers. Family impact experienced by caregivers was assessed with the ECFOS-II/SOFBI-II scale (Entrevista de Carga Familiar Objetiva y Subjetiva/Objective and Subjective Family Burden Interview). In global terms, results showed that the higher family impact was found between caregivers to people with MH-ID. The interaction of both conditions (ID and mental health problems) results in a higher degree of burden on families than when both conditions are presented separately. There was also an impact in caregivers to people with schizophrenia, this impact being higher than the one detected in caregivers to people with intellectual disability. Needs of caregivers to people with disability should be addressed specifically in order to effectively support families.     

Validation of personal digital photography to assess dietary quality among people with intellectual disabilities

Background Dietary assessment is a challenge in general, and specifically in individuals with intellectual disabilities (ID). This study aimed to evaluate personal digital photography as a method of assessing different aspects of dietary quality in this target group. Method Eighteen adults with ID were recruited from community residences and activity centres in Stockholm County. Participants were instructed to photograph all foods and beverages consumed during 1 day, while observed. Photographs were coded by two raters. Observations and photographs of meal frequency, intake occasions of four specific food and beverage items, meal quality and dietary diversity were compared. Evaluation of inter‐rater reliability and validity of the method was performed by intra‐class correlation analysis. Results With reminders from staff, 85% of all observed eating or drinking occasions were photographed. The inter‐rater reliability was excellent for all assessed variables (ICC ≥ 0.88), except for meal quality where ICC was 0.66. The correlations between items assessed in photos and observations were strong to almost perfect with ICC values ranging from 0.71 to 0.92 and all were statistically significant. Conclusion Personal digital photography appears to be a feasible, reliable and valid method for assessing dietary quality in people with mild to moderate ID, who have daily staff support.     

Reliability and validity of the Mini PAS-ADD for assessing psychiatric disorders in adults with intellectual disability

The Mini PAS-ADD is an assessment schedule for psychiatric disorders in people with an intellectual disability. It is designed to provide a link between the mental health expertise of psychiatrists and psychologists, and the detailed knowledge of individual service users possessed by support staff. In broad terms, the aim of the Mini PAS-ADD is to enable non-psychiatrists accurately to recognize clinically significant psychiatric disorders in the people who they care for, so that they can make informed referral decisions, The instrument comprises 86 psychiatric symptoms and generates a series of subscores on: depression, anxiety and phobias, mania, obsessive-compulsive disorder, psychosis, unspecified disorder (including dementia), and pervasive developmental disorder (autism). The present paper reports the results of a study investigating internal consistency, inter-rater agreement and validity in relation to clinical opinion, using a sample of 68 people with intellectual disability who were in contact with psychiatric services. In terms of the instrument fulfilling its main intended function, i.e. accurate case recognition, the crucial question was whether the support workers, with their lesser knowledge of psychopathology, were also able to correctly identify cases identified by expert clinicians. The validity results in this respect (81% agreement on case recognition) were sufficiently good that it is to be anticipated that the Mini PAS-ADD should have a significant impact on the identification of psychiatric disorders in the community of people with intellectual disability.     

Screening for intellectual disability in persons with a substance abuse problem: Exploring the validity of the Hayes Ability Screening Index in a Dutch-speaking sample

There is an increasing interest in screening instruments to detect intellectual disability (ID) in a quick and accurate way in mental health services as well as in the criminal justice system in order to provide appropriate support for people with undetected needs caused by ID. An instrument that has been proven to be useful in both settings is the Hayes Ability Screening Index (HASI). This study assessed the validity of the Dutch version of the HASI in persons with a substance abuse problem residing in mental health services, whether or not mandated to treatment by court order. The HASI was conducted along with the Wechsler Adult Intelligence Scale III as the criterion for validity to 90 participants. Additionally, the influence of psychiatric disorder and medication use on the HASI result was examined. A significant positive relationship was found between the two instruments, demonstrating convergent validity. Using a Receiver Operating Characteristic (ROC) curve analysis, the discriminative ability of the HASI with a cut-off score of 85 was found to be adequate, yielding in a good balance between sensitivity and specificity. The HASI was not distorted by the presence of the substance abuse problem or other psychiatric illnesses and medication did not influence the HASI scores in this study. These findings indicate that the HASI provides a time-efficient and resource-conscious way to detect ID in persons with a substance problem, thus addressing a critical need in mental health settings.     

Reliability and validity of the PAS-ADD Checklist for detecting psychiatric disorders in adults with intellectual disability

The PAS-ADD Checklist is a screening instrument specifically designed to help staff recognize mental health problems in the people with intellectual disability for whom they care, and to make informed referral decisions. The instrument consists of a life-events checklist and 29 symptom items scored on a four-point scale. Scores are combined to provide three threshold scores. The crossing of any of these thresholds indicates the need for a fuller assessment. The items are worded in everyday language, making the Checklist suitable for use by individuals who do not have a background in psychopathology. The present paper presents the results of a number of studies evaluating the reliability and validity of the Checklist. Factor analysis of Checklists completed on a community sample of 201 individuals yielded eight factors, of which seven were readily interpretable in diagnostic terms. Internal consistency of the scales was generally acceptable. Inter-rarer reliability in respect to individual items gave a fairly low average Kappa of 0.42. However, agreement on case identification, the main purpose of the Checklist, was quite good, with 83% of the decision being in agreement. Validity in relation to clinical opinion was also satisfactory, case detection rising appropriately with the clinically judged severity of disorder. The PAS-ADD Checklist is published and distributed by the Hester Adrian Research Centre, Manchester, England, from where further information and order forms are available on request.     

A pilot study of the reliability and validity of the Caregiver Activity Survey – Intellectual Disability (CAS-ID)

Background People with Down's syndrome (DS) are at increased risk of Alzheimer‐type dementia (AD) when compared to the general population. Despite AD being a serious progressive disorder, little attention has been paid to the impact of the illness on formal caregivers. In the general population, the Caregiver Activity Survey (CAS) is used to measure time spent by family caregivers assisting people with AD in their day‐to‐day activities of living. In order to plan appropriate models of health and social care effectively for people with AD and DS, it is imperative that the care requirements of individuals at different stages of dementia are realized. An amended version of this survey, the Caregiver Activity Survey – Intellectual Disability (CAS‐ID), was developed and tested for use by professional caregivers in the present study. Methods The CAS‐ID was administered to 30 people with DS and their caregivers. Convergent validity was tested by comparing the results of the CAS‐ID to other validated tests for cognitive and functional impairment in individuals with DS. Test–retest and inter‐rater reliability were investigated. Results The final version of the CAS‐ID consists of eight items: dressing, bathing/showering, grooming, toileting, eating and drinking, housekeeping, nursing care‐related activities, and supervision/ behaviour management. The scale had excellent test–retest reliability, and correlated strongly with the Down Syndrome Mental Status Examination (DSMSE; r = ?0.770), the Test for Severe Impairment (TSI; r = ?0.881) and the Daily Living Skills Questionnaire (DLSQ; r = ?0.855). Conclusions The present authors provide preliminary evidence for the validity and reliability of the CAS‐ID. This instrument offers a means of identifying and measuring care and resources requirements as this population experiences symptoms of dementia. Such information may help assist healthcare professionals in planning supports and services to address the care challenges evidenced at different stages of the disease process.     

The behavioural profile of psychiatric disorders in persons with intellectual disability

Background Problems associated with psychiatric diagnoses could be minimized by identifying behavioural clusters of specific psychiatric disorders. Methods Sixty persons with intellectual disability (ID) and behavioural problems, aged 12–55 years, were assessed with standardized Indian tools for intelligence and adaptive behaviour. Clinical diagnoses were conferred as per International Classification of Diseases – 10th Revision (ICD-10) criteria. Subsequently Reiss Screen for Maladaptive Behaviors (RSMB) and AAMD Adaptive Behavior Scale-Part II were administered independently. Results Aggression and rebellious behaviours were more common in affective disorders and personality disorders. Psychotic and paranoid features were significantly more in psychosis group. Those with behavioural problems had significantly low scores on the sub-scales of RSMB. Conclusion RSMB and AAMD Adaptive Behavior Scale-Part II will be useful to identify behavioural clusters, which will complement clinical psychiatric diagnoses in individuals with ID.     

Reliability and utility of the Behaviour Support Plan Quality Evaluation tool (BSP‐QEII) for auditing and quality development in services for adults with intellectual disability and challenging behaviour

Background Having an objective means of evaluating the quality of behaviour support plans (BSPs) could assist service providers and statutory authorities to monitor and improve the quality of support provided to people with intellectual disability (ID) who exhibit challenging behaviour. The Behaviour Support Plan Quality Evaluation Guide II (BSP‐QEII) was developed to monitor and assess BSPs prepared by teachers to support children with disability in the school system. This study investigated the application of the BSP‐QEII to the assessment of BSPs for adults with ID in community support services. Method The inter‐rater reliability of the BSP‐QEII was assessed. The utility of the BPS‐QEII was then investigated with reference to a time series study of matched pairs of BSPs, developed for the same clients over a period of approximately 3 years. Differences in plan quality measured across a number of service and systemic variables were also investigated. Results The BSP‐QEII was found to have good inter‐rater reliability and good utility for audit purposes. It was able to discriminate changes in plan quality over time. Differences in plan quality were also evident across different service types, where specialist staff had or had not been involved, and in some instances where a statutory format for the plan had or had not been used. There were no differences between plans developed by government and community sector agencies, nor were there any regional differences across the jurisdiction. Conclusions The BSP‐QEII could usefully be adopted as an audit tool for measuring the quality of BSPs for adults with ID. In addition to being used for research and administrative auditing, the principles underpinning the BSP‐QEII could also be useful to guide policy and educational activities for staff in community based services for adults with ID.     

The Prudhoe Cognitive Function Test, a scale to assess cognitive function in adults with Down's syndrome: inter-rater and test–retest reliability

Background The Prudhoe Cognitive Function Test (PCFT) was designed to measure cognitive function in subjects with all degrees of intellectual disability (ID) and to be administered by non‐specialist raters. The aim of the present study was to measure the test–retest and inter‐rater reliability of the PCFT. Methods Three raters, one a specialist and two non‐specialists, administered the PCFT to 14 subjects with Down's syndrome on two occasions separated by 4 weeks. Results The intra‐class correlation coefficients (ICCs) between the rater pairs (n = 3) were 0.99, 0.99 and 0.98 (P < 0.01). Floor effects were recorded for two items. The ICC for test–retest reliability was 0.99 (P < 0.01). Conclusions The PCFT is a highly reliable instrument when used by either specialist or non‐specialist raters. It has excellent temporal stability.