Dataset Information

Inventory of assessment practices in people with profound intellectual and multiple disabilities in three European countries.

ABSTRACT:

Background

Knowledge about the quality of assessment methods used in the support of people with profound intellectual and multiple disabilities (PIMD) is scarce. This study aimed to provide an overview of the assessment methods used in practice and to examine whether these instruments were studied for their psychometric properties for people with PIMD.

Method

Professionals (N = 148) from three European countries completed a survey on assessment practices. We performed a literature search to find information about the psychometric properties of the instruments that were identified in the survey.

Results

Of the participants, 78.1% used assessments that were not developed for people with PIMD. Documentation on psychometric properties was found for 8 out of 116 instruments.

Conclusions

Most of the instruments in use were not designed for people with PIMD, and information about their quality is lacking. Guidelines are needed regarding the use and development of assessment methods for people with PIMD.

SUBMITTER: Wessels MD

PROVIDER: S-EPMC8596661 | biostudies-literature | 2021 Nov

REPOSITORIES: biostudies-literature

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Publications

Inventory of assessment practices in people with profound intellectual and multiple disabilities in three European countries.

Wessels Marleen D MD van der Putten Annette A J AAJ Paap Muirne C S MCS

Journal of applied research in intellectual disabilities : JARID 20210616 6

<h4>Background</h4>Knowledge about the quality of assessment methods used in the support of people with profound intellectual and multiple disabilities (PIMD) is scarce. This study aimed to provide an overview of the assessment methods used in practice and to examine whether these instruments were studied for their psychometric properties for people with PIMD.<h4>Method</h4>Professionals (N = 148) from three European countries completed a survey on assessment practices. We performed a literature ...[more]

PMID: 34137122

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Project description:IntroductionOdors are closely linked to emotions, play an important role in the well-being of individuals and can influence mood. Despite these crucial properties, the hedonic responses to odors of people with profound intellectual and multiple disabilities (PIMD) remain little explored.AimThis within-subjects study aims to examine whether children and young people with PIMD react in a differentiated way to odors evaluated as pleasant or unpleasant by neurotypical adults and, if so, with which behaviors. The influence of their global mood on their emotional responses to odors is also examined.MethodTwenty children and young people (7-18 years old) with PIMD were exposed to four pairs of hedonically contrasted odors. A control stimulus was presented before each odorant. Five emotional responses, one physiological reaction (nausea reactions), and three responses reflecting approach toward or avoidance of the stimulus were recorded throughout the duration of the stimulus exposure. The participants' global mood status was measured before the start of the research with the French version of the Mood, Interest and Pleasure Questionnaire (Ross and Oliver, 2003).ResultsThe results show that when exposed to pleasant odorants, participants kept their heads aligned with the odorant source longer, smiled longer, and produced more positive vocalizations. In contrast, unpleasant odorants elicit more pouts and grimaces. Nausea reactions occurred in the presence of unpleasant odorants. The hedonic responses were more marked during the second presentation of the stimuli. Participants with a higher MIPQ score showed significantly more emotional reactions to odors.ConclusionThe results confirm the presence of olfactory preferences in participants with PIMD and the existence of a link between their mood, emotions and olfactory hedonic processing. They prompt the use of odors to support not only the cognitive development of this population, but also their mood and their emotional regulation abilities.

Project description:BackgroundCancers are as common in individuals with intellectual disabilities as in the general population (GP). For the subgroup of people with profound and multiple disabilities (PMD) who present with both severe intellectual disability and major motor disorders, the frequency and distribution of cancers are currently not known, preventing proper cancer surveillance.MethodsWe carried out a systematic and synthetic review of the medical literature, including a focused search of Japanese data.ResultsThe total risk of cancer in individuals with PMD is thought to be lower than in the GP, possibly due to a shorter life expectancy. They have reduced exposure to cancer risk factors, such as alcohol, tobacco, sunlight, human papillomavirus infection, occupational toxins, and being overweight. On the other hand, individuals with PMD present a greater frequency of gastroesophageal reflux disease, Helicobacter pylori gastritis, chronic cystitis, and cryptorchidism, which increase the risk for cancer of the esophagus, stomach, urinary bladder, and testes. In addition, certain genetic disorders underlying compromised motor and cognitive functions are associated with higher risk of childhood cancers. An analysis of 135 cancers in persons with PMD in Japan suggested that they present a particular tumor profile, with certain cancers rarer than in the GP, whereas cancers of the digestive tract are frequent. Cancers of the digestive tract occurred significantly earlier than in the GP (colon: average age 48.3 years vs. 71.3 years in the GP, esophagus: 39 years vs. 72 years in the GP). An increasing number of therapeutic successes in children and adults with PMD have been reported in different countries when cancers are discovered early.ConclusionIndividuals with PMD must be appropriately monitored for cancer. Screenings for breast and colon cancer, as well as regular monitoring of the esophagus, stomach, urinary bladder, and testicles, are necessary. Population-based epidemiological studies are needed to better understand risk factors, frequency, and distribution of cancers in the PMD population.

Project description:This study aims to investigate and categorize health problems in children with profound intellectual and multiple disabilities (PIMD). We conducted a scoping review in five electronic databases (PubMed, Embase, Medline, PsychInfo, and Web of Science), including peer-reviewed studies that describe health problems in children with PIMD. Articles on PIMD were included when mentioning children with severe or profound intellectual disability (IQ/DQ < 35 or developmental age < 24 months) AND severe/profound motor impairment (GMFCS IV/V, non-ambulatory/not walking without support or gross motor function measure (GMFM-66) score < 40). Health problems were divided into 11 different categories based on literature and the experiences of the authors. Both health problems reported by caregivers and diagnosed by health professionals were included. A data extraction tool was developed using the JBI checklist recommendations. The review included 22 studies, with a total of 894 patients across all the articles. The most reported health problems in children with PIMD were epilepsy, respiratory infections, feeding difficulties, GERD, scoliosis, and visual impairment. There was no uniformity in the definition and terminology of PIMD.ConclusionThe studies in this review covered a wide range of health problems, with only a few focusing on the entire range. Given the lack of knowledge about children with PIMD, further research is required on the presence of health problems, the age of onset, and appropriate treatments. Awareness, early detection, and treatment of the health problems could optimize the medical care and quality of life of children with PIMD.What is known• Children with profound intellectual and multiple disabilities (PIMD) have severe intellectual and motor disabilities and various comorbidities. • Children often visit the hospital and provided care is complex and fragmented.What is new• Children with PIMD develop a wide range of health problems; most reported are epilepsy, respiratory infections, and feeding difficulties. • Little is known about treatment of health problems in children with PIMD.

Dataset Information

Inventory of assessment practices in people with profound intellectual and multiple disabilities in three European countries.

Background

Method

Results

Conclusions

Publications

Inventory of assessment practices in people with profound intellectual and multiple disabilities in three European countries.

Similar Datasets

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