Germain Weber

Ageing and health status in adults with intellectual disabilities: Results of the European POMONA II study

Abstract Background POMONA II was a European Commission public health-funded project. The research questions in this article focus on age-specific differences relating to environmental and lifestyle factors, and the 17 medical conditions measured by the POMONA Checklist of Health Indicators (P15). Method The P15 was completed in a cross-sectional design for a stratified sample of 1,253 adults with ID across 14 European member states. Results Older people (55+) were more likely to live in larger residential homes. Rates of smoking and use of alcohol were lower than in the general population but were higher with older age. More than 60% of older adults had a sedentary lifestyle. Cataract, hearing disorder, diabetes, hypertension, osteoarthritis/arthrosis, and osteoporosis were positively associated with advancing age; allergies and epilepsy, negatively associated. Conclusions Some evidence of health disparities was found for older people with ID, particularly in terms of underdiagnosed or inadequately managed preventable health conditions.

Evaluation of an integrated system for classification, assessment and comparison of services for long-term care in Europe: the eDESDE-LTC study

BackgroundThe harmonization of European health systems brings with it a need for tools to allow the standardized collection of information about medical care. A common coding system and standards for the description of services are needed to allow local data to be incorporated into evidence-informed policy, and to permit equity and mobility to be assessed. The aim of this project has been to design such a classification and a related tool for the coding of services for Long Term Care (DESDE-LTC), based on the European Service Mapping Schedule (ESMS).MethodsThe development of DESDE-LTC followed an iterative process using nominal groups in 6 European countries. 54 researchers and stakeholders in health and social services contributed to this process. In order to classify services, we use the minimal organization unit or “Basic Stable Input of Care” (BSIC), coded by its principal function or “Main Type of Care” (MTC). The evaluation of the tool included an analysis of feasibility, consistency, ontology, inter-rater reliability, Boolean Factor Analysis, and a preliminary impact analysis (screening, scoping and appraisal).ResultsDESDE-LTC includes an alpha-numerical coding system, a glossary and an assessment instrument for mapping and counting LTC. It shows high feasibility, consistency, inter-rater reliability and face, content and construct validity. DESDE-LTC is ontologically consistent. It is regarded by experts as useful and relevant for evidence-informed decision making.ConclusionDESDE-LTC contributes to establishing a common terminology, taxonomy and coding of LTC services in a European context, and a standard procedure for data collection and international comparison.

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.

Sampling and ethical issues in a multicenter study on health of people with intellectual disabilities

OBJECTIVES To study health inequalities in persons with intellectual disabilities, representative and unbiased samples are needed. Little is known about sample recruitment in this vulnerable group. This study aimed to determine differences in ethical procedures and sample recruitment in a multicenter research on health of persons with intellectual disabilities. Study questions regarded the practical sampling procedure, how ethical consent was obtained in each country, and which person gave informed consent for each study participant. STUDY DESIGN AND SETTING Exploratory, as part of a multicenter study, in 14 European countries. After developing identical guidelines for all countries, partners collected data on health indicators by orally interviewing 1,269 persons with intellectual disabilities. Subsequently, semistructured interviews were carried out with partners and researchers. RESULTS Identification of sufficient study participants proved feasible. Sampling frames differed from nationally estimated proportions of persons with intellectual disabilities living with families or in residential settings. Sometimes, people with intellectual disabilities were hard to trace. Consent procedures and legal representation varied broadly. Nonresponse data proved unavailable. CONCLUSION To build representative unbiased samples of vulnerable groups with limited academic capacities, international consensus on respectful consent procedures and tailored patient information is necessary.

Care Staff Awareness Training on Mental Health Needs of Adults with Learning Disabilities Results from a Greek sample

The mental health needs of adults with learning disabilities have not been adequately addressed in many European countries. Although carers can play a significant role in identification and referral, they usually lack the expertise necessary to identify signs of mental disorders. This study evaluated a care staff training programme aiming at improving awareness on issues of dual diagnosis in a group of 36 care staff from residential and community centres in Greece. Training was based on the British Mental Health in Learning Disabilities Training Pack and the PAS–ADD Checklist. The overwhelming majority of staff were very satisfied with training. Staff from institutional work settings, with no previous training on dual diagnosis and with a lower level of education, benefited to a significant degree. Changes occurred mostly in their knowledge and attitudes rather than practice. Supervised practical training is vital to transfer, strengthen and maintain positive changes at work.

Moving beyond intelligence in the revision of ICD‐10: specific cognitive functions in intellectual developmental disorders

A lower level of intelligence, as measured by IQ, has historically been the central defining criterion of mental retardation (MR). The use of IQ scores in terms of standard deviation units from the mean is the basis for defining MR in the ICD-10 and DSM-IV-TR, and more recently for defining intellectual disability (ID) in the DSM-5. Similarly, ID is defined by the American Association on Intellectual and Developmental Disabilities as an IQ score approximately two standard deviations below the mean 1. However, in recent years, an increasing number of researchers and clinicians have expressed the view that measurements of IQ fail to capture individual differences in cognitive dysfunction. The heterogeneity of cognitive dysfunction and consequent adaptive behavior profile in persons with MR is one of the reasons leading the working group in charge of this issue within the revision of the ICD-10 to propose a new definition for intellectual developmental disorders (IDD) in the upcoming 11th edition of the diagnostic system 2. In 2011, the WPA Section on Psychiatry of Intellectual Disability started a mini-Delphi process with an international panel of experts to produce a consensus document on this issue. The present letter reports the results of the systematic mapping 3 of the international literature included in this process, focusing on current models of intelligence, multi-component and specific cognitive functions, and the relationship between intellectual and affective assessment, as relevant for defining IDD. A total of 7,948 articles matched the key words. After titles were checked, 3,179 were selected. After abstracts were read, 2,497 were excluded as they were not relevant to the mapping topic, and 114 were excluded because they were not in English. After reading the remaining articles in full, 177 papers were included as relevant to search questions. The mapping of current theoretical approaches identified limitations of IQ as an indicator of the adaptive complexity and dynamism of human intellectual functioning and pointed out the need for a shared model and comprehensive definition of intelligence. Of the available approaches, the most frequently used refers to a unitary capacity, articulated in complex functions. A second evolving group of theories identifies a key role of interdependent but specialized factors, such as specific cognitive functions. There is a neuro-bio-psychological evidence in support of both approaches, but multi-component models seem to prevail. Experimental data indicate that the same IQ score can correspond to very different cognitive profiles, and that functional limitations and problem behaviors associated with IDD correlate with impairment of specific cognitive functions more than with IQ 4,5. To address the limitations of the current conceptualization of MR, the ICD-11 working group proposed revised diagnostic criteria for IDD, based on a more articulated model of cognitive impairment. This approach juxtaposes a new concept of cognitive characterization to that of intelligence and complements the measurement of IQ with the assessment of specific cognitive functions and a contextualised description of consequent adaptive and learning difficulties 2. Within this new approach, cognitive skills should be assessed through tests, semi-structured observations, and direct clinical examination. The tests should combine the measurement of IQ with that of several aspects of executive functioning, including perceptual reasoning, processing speed, verbal comprehension, as well as the assessment of attention, perception and working memory. The evaluation should aim to identify the cognitive dysfunctions that have the greatest negative impact in terms of behavior, adjustment, autonomy, and above all quality of life, across the lifespan. The instruments to assess specific cognitive functions should have a low cost, in order to allow fast assimilation by professionals practicing in low-income countries 6. Production and distribution by international non-profit organizations could greatly facilitate this effort. In conclusion, within the proposed ICD-11 framework for characterization of IDD, there is a need for neuropsychological measures that can be readily adapted to different levels of severity, and that are easy to apply in clinical and research practice. The evolving understanding of how environmental and cultural factors influence development should promote a continuing search for assessment models and practices that capture developmental pathways of cognition in persons with IDD. Naturalistic, multidisciplinary and multicentric studies could provide useful data to this purpose 7.

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.

The situation of older people with intellectual disability in Nepal: a pilot study

In Nepal, the longevity of people with intellectual disability (ID) has increased during recent decades due to improvements in nutrition, sanitary conditions and health services. Definite national demographic information is unavailable on older adults with ID. This study draws from the case reports of nine adults and describes the general situation of adults and older adults with ID in Nepal. Data were collected using in-depth interviews with parents and professionals, site visits, observations, document reviews, and direct interaction with people with ID. The people chosen for inclusion, five women and four men, were the two or three oldest persons with ID within several catchment areas in the country. The findings were that the family is the prime resource for support for older people with ID, that the familys attitude plays a central role for the use of existing service provision, and that most parents of people with ID have made no plans for the future situation of their adult children (except that parents of adult sons with ID have often arranged or are planning a marriage for their son in order to assure his social security in adulthood and old age). Special services for older people with ID, as such, are not available in Nepal. Service structures do exist for children and adolescents with ID, although these services do not meet the demand and are not yet anticipating an adult or ageing client population.