Elisabeth L. Zeilinger

The P15 - a multinational assessment battery for collecting data on health indicators relevant to adults with intellectual disabilities.

BACKGROUND Health disparities between adults with intellectual disabilities (ID) and the general population have been well documented but, to date, no dedicated assessment battery for measuring health disparity has been available. This paper reports on the development and testing of a multinational assessment battery for collecting data on a range of health indicators relevant to adults with ID. METHODS An assessment battery (the P15) was developed following piloting, and administered to samples of adults with ID, in 14 EU countries. Samples were neither random, nor representative of the countries from which they were drawn. However, within the local health administration areas selected in each country, efforts were made to ensure samples were broadly representative of the typical living circumstances, ages and ability levels of the administrative population of adults with ID. The total sample comprised 1269 adults with ID, of whom 49% were female. The mean age was 41 years (range 19 to 90). RESULTS Overall, feasibility, internal consistency and face validity of the P15 was acceptable. CONCLUSIONS With some refinement the P15 could be useful for collecting data on health indicators known to be particularly important for adults with ID. It is useable in a range of countries and has the potential to highlight health inequity for adults with ID at a national or local level. Larger scale epidemiological studies are needed to exploit the potential of the P15 to address health inequity in this group.

A systematic review on assessment instruments for dementia in persons with intellectual disabilities.

AIM This work describes an extensive systematic literature review on assessment instruments for dementia in persons with intellectual disability (ID). Existing instruments for the detection of dementia in persons with ID were collected and described systematically. This allows a direct and quick overview of available tools. Additionally, it contributes to the availability and usability of information about these instruments, thus enhancing further developments in this field. METHODS A systematic literature search in five databases (CINAHL, PsycInfo, PubMed, Scopus, and Web of Science) was conducted. In order to include gray literature an invisible college approach was used. Relevant studies were identified and selected using defined inclusion and exclusion criteria. After the selection process all instruments were coded and classified. It was determined which concepts they assess, whether they were especially developed or adapted for persons with ID, and whether they were designed to assess dementia. The selection of relevant papers, as well as the coding of instruments was done independently by two researchers. RESULTS In total, 97 records met the search criteria. Out of these, 114 different instruments were extracted. There were 79 instruments to be completed by the person with ID, and 35 informant-based instruments. Additionally, four test batteries were found. Some of these instruments were neither designed for the assessment of dementia, nor for persons with ID. CONCLUSIONS There are a variety of different tools used for the assessment of dementia in ID. Nevertheless, an agreed-upon approach or instrument is missing. Establishing this would improve the quality of assessment in clinical practice, and benefit research. Data collected would become comparable and combinable, and allow research to have more informative value.

Psychometric Properties and Norms of the German ABC-Community and PAS-ADD Checklist.

AIM The aim of the present study was to standardize and generate psychometric evidence of the German language versions of two well-established English language mental health instruments: the Aberrant Behavior Checklist-Community (ABC-C) and the Psychiatric Assessment Schedule for Adults with Developmental Disabilities (PAS-ADD) Checklist. New methods in this field were introduced: a simulation method for testing the factor structure and an exploration of long-term stability over two years. METHODS The checklists were both administered to a representative sample of 270 individuals with intellectual disability (ID) and, two years later in a second data collection, to 128 participants of the original sample. Principal component analysis and parallel analysis were performed. Reliability measures, long-term stability, subscale intercorrelations, as well as standardized norms were generated. Prevalence of mental health problems was examined. RESULTS Psychometric properties were mostly excellent, with long-term stability showing moderate to strong effects. The original factor structure of the ABC-C was replicated. PAS-ADD Checklist produced a similar, but still different structure compared with findings from the English language area. The overall prevalence rate of mental health problems in the sample was about 20%. CONCLUSION Considering the good results on the measured psychometric properties, the two checklists are recommended for the early detection of mental health problems in persons with ID.

Sexual violence by occupational forces during and after World War II: influence of experiencing and witnessing of sexual violence on current mental health in a sample of elderly Austrians

BACKGROUND Wartime rape is an atrocity with long-lasting impacts not only on victims but whole societies. In this brief report, we present data on experience and witness of sexual violence during World War II (WWII) and subsequent time of occupation and on indicators of mental health in a sample of elderly Austrians. METHODS Interviews of 298 elderly Austrians from a larger epidemiological study on WWII traumatization were analyzed for the impact of experience and witness of sexual violence during the wartime committed by occupational forces. Interviews comprised a biographical/historical section and psychological measures (BSI, TLEQ, PCL-C). Participants were recruited in all nine provinces of Austria with respect to former zones of occupation (Western Allied/Soviet). RESULTS Twelve persons reported direct experience of sexual violence, 33 persons witnessed such atrocities. One third of the victims and 18.2% of the witnesses reported post-traumatic stress disorder (PTSD full/subthreshold). Sexual violence occurred more often in the former Soviet zone. Victims and witnesses displayed higher odds of post-traumatic symptoms and symptoms of depression and phobic fear than non-victims. Furthermore, witnesses displayed higher levels of aggression compared to victims and non-witnesses. CONCLUSIONS Our results corroborate previous findings that wartime rape has long-lasting effects over decades on current mental health and post-traumatic distress in victims and witnesses. We recommend integration of psychotraumatological knowledge on consequences of sexual violence on mental health into geriatric care and the education of dedicated personnel.

The Vienna Frailty Questionnaire For Persons with Intellectual Disabilities--Revised.

Frailty is a theoretical concept used to track individual age-related declines. Persons with intellectual disabilities (ID) often present with pre-existing deficits that would be considered frailty markers in the general population. The previously developed Vienna Frailty Questionnaire for Persons with ID (VFQ-ID) was aimed at assessing frailty in this specific population. However, findings of the initial frailty study in 2007 revealed some weaknesses. This paper reports on the development of the Vienna Frailty Questionnaire for Persons with ID - Revised (VFQ-ID-R) as well as its first application and psychometric evaluation. The authors re-administered the VFQ-ID-R to participants with ID who had been assessed with the VFQ-ID in 2007. The goal was to study the factor structure and reliability of the revised test. Internal consistency of the VFQ-ID-R was found to be very good for the entire scale and was moderate for the four domains of the scale. Inter-rater reliability and retest reliability were found to be good. The revisions made to the VFQ-ID will be useful in assessing and supporting ageing individuals with ID.

CAPs-IDD: Characteristics of Assessment Instruments for Psychiatric Disorders in Persons with Intellectual Developmental Disorders

BACKGROUND Assessment of psychiatric disorders in persons with an intellectual developmental disorder (IDD) can be performed with a variety of greatly differing instruments. This makes the choice of an instrument best suited for the intended purpose challenging. In this study, we developed a comprehensive set of characteristics for the evaluation and description of assessment instruments for psychiatric disorders in adult persons with IDD. This simplifies the search for an instrument as it makes an easy and direct comparison possible and hereby allows a more thorough and appropriate decision making when selecting assessment tools. METHOD A mixed-methods approach was used. First, a systematic literature search was conducted to identify existing tools for the description and evaluation of assessment instruments. Second, the content of these tools was combined and missing features and IDD-specific attributes were added. Finally, expert consultations were performed. RESULTS The Characteristics of Assessment Instruments for Psychiatric Disorders in Persons with Intellectual Developmental Disorders (CAPs-IDD) lists characteristics to evaluate and describe instruments for psychiatric disorders in persons with IDD. It comprises two sections: first, the conceptual and measurement model; second, the psychometric properties. Each section consists of various subsections and a detailed response format for coding instruments. CONCLUSIONS The use of the CAPs-IDD helps to identify and choose instruments that best suit the respective purpose. Filled with information, it could be made accessible via new technologies to researchers and practitioners and be updated when new information is available. Thus, it contributes to a more reliable and valid assessment of possible psychiatric disorders in persons with IDD.

Lateral preferences for hand clasping and arm folding are associated with handedness in two large-sample latent variable analyses

Hand clasping (HC) and arm folding (AF) are bilateral limb postures which are subject to lateral preferences. Previous research suggested that left HC and left AF are “canonical” among European populations, i.e., generally preferred by right-handers. However, evidence on the associations of handedness with HC and AF to date is sparse and inconsistent, with studies mostly relying on relatively small sample sizes and arbitrary classifications of handedness. Utilizing latent class analysis for handedness classification, we present data from two large and independent middle-European samples, a discovery (n = 7,658) and replication (n = 5,062) sample. Our results indicate that right HC, not left HC, is overall preferred and that right-handedness is associated with right HC/left AF, and left- and mixed-handedness with left HC/right AF. Moreover, lateral preferences increased with age, and men had a higher preference of right HC, independent of handedness. We discuss our findings with regard to the generalizability of previous results.

Practical applications of the NTG-EDSD for screening adults with intellectual disability for dementia: A German-language version feasibility study

ABSTRACT Background In this study, we evaluated the feasibility of using the German-language version of a recently developed screening tool for dementia for persons with intellectual disability (ID): the National Task Group – Early Detection Screen for Dementia (NTG-EDSD). Method Some 221 paid carers of ageing persons with ID were asked to use the NTG-EDSD and report back on its utility and on 4 feasibility dimensions, and to provide detailed feedback on aspects deemed critical or missing. Results All feasibility dimensions were rated good to very good, and 80% of respondents found the NTG-EDSD useful or very useful for the early detection of dementia. This highlights a high acceptability of this instrument by the main target group. Conclusions The positive feasibility evaluation of the NTG-EDSD indicates the usability and adequacy of this instrument for application of early detection of dementia in persons with ID.