<scp>CAPs</scp>‐<scp>IDD</scp>: <scp>C</scp>haracteristics of <scp>A</scp>ssessment <scp>I</scp>nstruments for <scp>P</scp>sychiatric <scp>D</scp>isorders in <scp>P</scp>ersons with <scp>I</scp>ntellectual <scp>D</scp>evelopmental <scp>D</scp>isorders

Nader, Ingo W.; Brehmer-Rinderer, Barbara; Koller, Ingrid; Weber, Germain

doi:10.1111/jir.12003

Cited by 17 publications

(10 citation statements)

References 23 publications

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“…Terminologies and classifications usually precede and provide the framework for developing questionnaires and other health instruments [39]. DESDE-LTC has followed a reverse sequence: this classification was preceded by the development of instruments for assessing mental health services (ESMS) [20], services for elders (DESDAE) [40] and services for persons with disabilities (DESDE) [3].…”

Section: Discussionmentioning

confidence: 99%

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

Salvador‐Carulla

Álvarez‐Gálvez

Romero³

et al. 2013

BMC Health Serv Res

120

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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.

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Section: Discussionmentioning

confidence: 99%

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

Salvador‐Carulla

Álvarez‐Gálvez

Romero³

et al. 2013

BMC Health Serv Res

120

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“…30 31 We will adhere to the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines 32 and complement them with a set of characteristics especially developed for assessment instruments for persons with ID, the Characteristics of Assessment Instruments for Psychiatric Disorders in Persons with Intellectual Developmental Disorders (CAPs-IDD). 33 The systematic review has been registered with the International Prospective Register of Systematic Reviews (PROS-PERO) with registration number CRD42020181773. If amendments to the protocol are needed, we will register these in PROSPERO, including date and rationale.…”

Section: Methods and Analysismentioning

confidence: 99%

Informant-based assessment instruments for dementia and their measurement properties in persons with intellectual disability: systematic review protocol

et al. 2020

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IntroductionPersons with intellectual disability (ID) are at a higher risk of developing dementia than persons without ID, with an expected earlier onset. Assessment methods for the general population cannot be applied for persons with ID due to their pre-existing intellectual and functional impairments. As there is no agreed-upon measure to assess dementia in persons with ID, multiple instruments for this purpose have been developed and adapted in the past decades. This review aimed to identify all available informant-based instruments for the assessment of dementia in persons with ID, to evaluate and compare them according to their measurement properties, and to provide a recommendation for the most suitable instruments. Additionally, an overview of the amount and quality of research on these instruments will be provided.Methods and analysisThis review will be conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. We will adhere to the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines and use a set of characteristics developed for assessment instruments for persons with ID, the Characteristics of Assessment Instruments for Psychiatric Disorders in Persons with Intellectual Developmental Disorders. Two comprehensive, systematic literature searches will be applied in 10 international databases, including ASSIA, CINAHL, Cochrane Library, ERIC, MEDLINE, PsycINFO, Scopus, Web of Science, OpenGrey and ProQuest Dissertations and Theses Global. Risk of bias and quality assessment will be done according to COSMIN guidelines. We will apply the modified Grading of Recommendations, Assessment, Development and Evaluation approach to rate the overall quality of the available evidence.Ethics and disseminationNo ethics statement is needed for this study. The results will be submitted to a peer-reviewed journal and will be presented at international conferences.

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“…Moreover, genetic syndromes are often accompanied by co‐morbid medical conditions, which may change the clinical presentation of ASD [Thurm et al, ]. The Characteristics of Assessment Instruments for Psychiatric Disorders in Persons with Intellectual Developmental Disorders (CAPs‐IDD) was developed as a set of Intellectual and Developmental Disability‐specific guidelines to aid in the evaluation and adaptation of instruments for use in these populations [Zeilinger, Nader, Brehmer‐Rinderer, Koller, & Weber, ]. These guidelines delineate a methodology for the evaluation of existing PROs by compiling the most informative measurement properties and evaluating the quality of the various statistical tests used to evaluate the properties.…”

Section: Introductionmentioning

confidence: 99%

Psychometric Study of the Social Responsiveness Scale in Phelan–McDermid Syndrome

et al. 2020

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The Social Responsiveness Scale‐2 (SRS‐2) is a quantitative measure used to characterize symptoms of autism spectrum disorder (ASD). However, research suggests that SRS‐2 scores are significantly influenced by language ability and intellectual disability (ID). Efforts to refine the SRS‐2 by Sturm, Kuhfeld, Kasari, and Mccracken [Journal of Child Psychology and Psychiatry, 58(9), 1053–1061] yielded a shortened form, yet its psychometric properties in populations with severe ID remain unknown. This study aims to examine the psychometric properties of the SRS‐2 in Phelan–McDermid syndrome (PMS), a genetic condition associated with ASD and ID, thereby guiding score interpretation in this population and future development of targeted scales. Analyses, including Item Response Theory (IRT), were conducted on a sample of individuals with PMS (n = 91) recruited at six sites nationally. Psychometric properties evaluated include measures of reliability (internal consistency, test–retest reliability) and validity (structural, construct, content). While both SRS‐2 forms are reliable, the shortened SRS‐2 shows superior validity to the full SRS‐2 for measuring ASD symptoms in PMS. On IRT analysis, the shortened SRS‐2 shows excellent discrimination and precisely evaluates respondents across a wide range of ASD symptomatology but interpretation is limited by uncertain content validity and small sample size. The shortened SRS‐2 shows some promise for use in PMS, but future refinements and additions are needed to develop items that are tailored to identify ASD in children with severe ID and specifically PMS. Lay Summary This study determined that a shortened form of the Social Responsiveness Scale, Second Edition (SRS‐2) shows both promise and limitations for the characterization of autism symptomatology in individuals with Phelan–McDermid syndrome (PMS), a population characterized by intellectual disability (ID). Caution should be used when interpreting SRS‐2 scores in individuals with ID and future research should modify existing items and develop new items to improve the SRS‐2's ability to accurately characterize autism symptomatology in PMS. Autism Res 2020, 13: 1383–1396. © 2020 International Society for Autism Research, Wiley Periodicals, Inc.

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

Cited by 17 publications

References 23 publications

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

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

Informant-based assessment instruments for dementia and their measurement properties in persons with intellectual disability: systematic review protocol

Psychometric Study of the Social Responsiveness Scale in Phelan–McDermid Syndrome

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