Personal outcomes-related quality of life provides information about the impact of individualized supports and services that are provided to people with intellectual disability. The Personal Outcomes Scale (POS) is a valid and reliable instrument that measures these outcomes using two parts, self-report and report by others. Based on the POS, the aim of this study is to provide a new psychometric study of the instrument that allows the evaluation of the three principal informers involved in the enhancement of individual's quality of life: individual with intellectual disability, professional and family member. This approach overcomes the limitations of the POS. For the self-report were involved 529 people with intellectual disability. A professional (N = 522) and a family member (N = 462) separately participated for the report by others versions to assess personal outcomes for each participant. The reliability study provides appropriate values for the first and second order factors with α values being higher than .82. The construct validity analysis provides an adjustment of the theoretical model, particularly regarding the assessments from professionals. Results show this instrument is adequate to evaluate personal outcomes and giving the guidelines for making policy and practice decisions.
Background/Objective: Literature shows that practicing physical activity improves the general health and quality of life of people with intellectual disabilities. However, there is little empirical research on the specific benefits physical activity provides and to what extent these benefits occur. The goal of this study was to examine the impact of perceptions of physical activity and the individualized support on each of eight quality of life-related domains and three higher-order quality of life factors. Method: The sample consisted of adults with intellectual disability (n = 529), their assigned professionals (n = 522), and a family member (n = 462). Most participants attended day and residential services, and we applied the Personal Outcomes Scale and the Support Needs and Strategies for Physical Activity Scale to all of them. Results: The structural model parameter estimation showed high values, especially for the factor of well-being. These data allowed us to confirm that perceptions of physical and individualized supports in the field of physical activity act as predictors of quality of life improvement. Conclusions: The results suggest that organizations devoted to enhancing personal outcomes should include physical activity in their programs, and revise both their own services and the use of physical activity resources available in the community.
Background Down syndrome (DS) is a chromosomal disorder that causes intellectual disability. Few studies have been conducted on functional connectivity using resting‐state fMRI (functional magnetic resonance imaging) signals or more specifically, on the relevant structure and density of the default mode network (DMN). Although data on this issue have been reported in adult DS individuals (age: >45 years), the DMN properties in young DS individuals have not been studied. The aim of this study was to describe the density and structure of the DMN network from fMRI signals in young DS (age: <36 years). Method A sample of 22 young people with DS between the ages of 16 and 35 ( M = 25.5 and SD = 5.1) was recruited in various centers for people with intellectual disability (ID). In addition to sociodemographic data, a six‐minute fMRI session was recorded with a 3. T Philips Ingenia scanner. A control group of 22 young people, matched by age and gender, was obtained from the Human Connectome Project (to compare the networks properties between groups). Results The values of the 48 ROIs that configured the DMN were obtained, and the connectivity graphs for each subject, the average connectivity graph for each group, the clustering and degree values for each ROI, and the average functional connectivity network were estimated. Conclusions A higher density of overactivation was identified in DS group in the ventral, sensorimotor, and visual DMN networks, although within a framework of a wide variability of connectivity patterns in comparison with the control group network. These results extend our understanding of the functional connectivity networks pattern and intrasubject variability in DS.
Background: In the last few years, many investigations have focused on brain activity in general and in populations with different pathologies using non-invasive techniques such as electroencefalography (EEG), positron emission tomography (PET), functional magnetic resonance imaging (fMRI) and magnetic resonance imaging (MRI). However, the use of non-invasive techniques to detect brain signals to evaluate the cognitive activity of people with Down syndrome (DS) has not been sufficiently addressed. The objective of this study is to describe the state-of-the-art in fMRI techniques for recording brain signals in people with DS. Method: A systematic review was performed based on PRISMA recommendations; only nine papers on this topic have been published. Three independent researchers selected all relevant information from each paper. Analyses of information concordance showed a high value of agreement between researchers. Results: Although few relevant works have been published, the use of fMRI in people with DS is becoming an appropriate option to study brain function in this population. Of the nine identified papers, five used task designs, and four used resting-state paradigms. Conclusion: Thus, we emphasize the need to incorporate rigorous cognitive activity procedures in evaluations of the DS population. We suggest several factors (such as head correction movements and paired sample techniques) that must be considered when designing an fMRI study with a task or a resting-state paradigm in a DS population.
Background: The study of the Default Mode Network (DMN) has been shown to be sensitive for the recognition of connectivity patterns between the brain areas involved in this network. It has been hypothesized that the connectivity patterns in this network are related to different cognitive states. Purpose: In this study, we explored the relationship that can be estimated between these functional connectivity patterns of the DMN with the Quality-of-Life levels in people with Down syndrome, since no relevant data has been provided for this population. Methods: 22 young people with Down syndrome were evaluated; they were given a large evaluation battery that included the Spanish adaptation of the Personal Outcome Scale (POS). Likewise, fMRI sequences were obtained on a 3T resonator. For each subject, the DMN functional connectivity network was studied by estimating the indicators of complexity networks. The variability obtained in the Down syndrome group was studied by taking into account the Quality-of-Life distribution. Results: There is a negative correlation between the complexity of the connectivity networks and the Quality-of-Life values. Conclusions: The results are interpreted as evidence that, even at rest, connectivity levels are detected as already shown in the community population and that less intense connectivity levels correlate with higher levels of Quality of Life in people with Down syndrome.
The relation between self-determination and intellectual functioning is complex, as other contextual factors may also play significant roles in explaining variability in self-determination. This study used meta-analytic techniques to assess how self-determination measures vary between people with disabilities classified as having intellectual disability (ID) or not, and contextual variables that moderate this relation. The literature search yielded 16 eligible studies, whose variables of interest were coded and analyzed. The results showed that when comparing self-determination measures among disability classification groups, gender, disability label and race/ethnicity were associated with the effect size estimation. These findings empirically support the relevance of personal variables when understanding self-determination levels and their impact in the operational classification of ID.
Background: People with intellectual disabilities (ID) have low levels of physical activity (PA) together with accelerated aging profiles. Adherence to PA interventions for persons with ID is low based on barriers such as motivation. The IDEA study aims to determine the effect of two types of exercise programs, continuous aerobic (CAEP) vs sprint interval training (SIT), designed for seniors with ID on health-related physical fitness, cardiovascular parameters, quality of life (QoL), and emotional and cognitive function. Methods: In this trial, ninety seniors with ID between the ages of 40 and 75 yrs. from occupational health centers from the Autonomous Region of Catalonia (Spain) will be recruited. Participants will be randomly allocated to the CAEP, SIT, and control group. Both intervention groups will train 3 days/week, 1.5 h/day over 6 months. Outcome variables will be assessed at baseline, 6 months and 12 months. The outcome variables include weight, height, body composition, cardiorespiratory fitness, muscle strength, balance, flexibility, cardiovascular parameters (blood pressure, pulse-wave velocity, pulse-wave analysis), QoL and cognitive function. The intervention effect will be determined with mixed models with repeated measures to assess changes in the outcome variables over time (baseline to month 12) and between study arms. Relationship between variables will be analyzed with appropriate regression analyses. Discussion: Various studies reported on CAEP and SIT as exercise interventions for persons with ID with beneficial outcomes on body composition, fitness and blood pressure. To our knowledge, this is the first trial designed to analyse the positive changes on fitness, PA levels, cardiovascular, QoL and cognitive function promoted by CAEP training and SIT in seniors with ID. The findings of this study will assist in the development of more effective exercise interventions to ensure better compliance and adherence to exercise in seniors with ID. Trial registration: The trial is registered at the ISRCTN registry. Registration number: ISRCTN43594228. Registered 11 February 2019-Retrospectively registered.
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