{"title":"Anxiety, Depression and Stress in Parents and Siblings of People Who Have Prader-Willi Syndrome: Morbidity Prevalence and Mitigating Factors","authors":"Kristina Micallef Pulè, Brian M. Hughes","doi":"10.1111/jir.13223","DOIUrl":"10.1111/jir.13223","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individuals with PWS need constant support and/or supervision, which creates a high caregiver burden on their parents and siblings. Previous research has identified adverse stress outcomes in relatively small and country-specific samples. This study's aims were to examine stress outcomes in a large multi-country sample of parents and siblings and to expand upon previous research by incorporating data on psychosocial factors that may mitigate stress outcomes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The sample comprised 135 parents of a child with PWS, with additional data for 45 siblings as reported by parents. Participants were recruited from 31 countries, spanning Europe, North and South America, Africa, Asia and Australasia, who participated by completing an online questionnaire that included standardised psychometric measures of depression and anxiety (HADS), life stress (PSS), PTSD symptoms (CATS-C) and family cohesion (FACES II). Outcomes were compared to published population norms, and multiple regression was used to investigate the role of potential exacerbating and mitigating factors.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Findings revealed high rates of mental pathologies in both parents and siblings. Parents' scores for depression and anxiety indicated high rates of caseness: 67.4% of parents exhibited ‘abnormal’ levels of anxiety, while 15.6% exhibited ‘borderline abnormal’ levels; 34.8% exhibited ‘abnormal’ levels of depression, with 22.2% exhibiting ‘borderline abnormal’ levels. Younger parents exhibited higher anxiety than older parents (<i>p</i> = 0.007); younger male parents reported higher depression than older male parents (<i>p</i> = 0.029). Parents whose child with PWS lived in the family home exhibited higher depression scores than parents whose child with PWS lived away from home (<i>p</i> = 0.035). Family cohesion was inversely associated with parental depression (<i>p</i> < 0.001) and parental anxiety (<i>p</i> = 0.012), even when statistically controlling for age of parent, age of child with PWS and parental education level. Scores for life stress were markedly higher than population norms, with 88.7% of parents exhibiting ‘high’ or ‘moderate’ life stress. Parental life stress was significantly correlated with temper outburst severity in their child with PWS (<i>p</i> < 0.001) and with food problem severity (<i>p</i> < 0.001). All siblings exhibited at least one symptom of PTSD, with 28.9% of siblings exhibiting ‘clinically relevant’ levels of PTSD symptoms. Sibling PTSD symptom levels were significantly associated with temper outburst severity in the child with ","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 5","pages":"417-427"},"PeriodicalIF":2.1,"publicationDate":"2025-02-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13223","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143458274","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Laura Armas Junco, Juan Antonio Posada Corrales, Laura Alonso Martínez
{"title":"Attitudes Towards Sexuality and Sexual Orientation in People With Intellectual Disabilities: A Systematic Review.","authors":"Laura Armas Junco, Juan Antonio Posada Corrales, Laura Alonso Martínez","doi":"10.1111/jir.13219","DOIUrl":"https://doi.org/10.1111/jir.13219","url":null,"abstract":"<p><p>Over time, sexuality has become a crucial aspect in people's lives, regardless of physical, intellectual or social conditions, ranging from sex and sexually transmitted diseases to gender identity and sexual orientation. The aim of this study was to carry out a review of the scientific literature on sexual orientation in people with intellectual disabilities from the Education and Health Sciences and to analyse how sex education is addressed in this group. To this end, a systematic review of research on sexual orientation in people with intellectual disabilities was carried out. The results obtained reveal that there is hardly any scientific corpus on this subject, so emphasis should be placed on the attitudes towards LGTBIQA+ people with intellectual disabilities, as well as on the training and understanding of the different sexual orientations they may have. It is essential to face the obstacles, stigmas and prejudices established in society to normalise the sexual needs of these people, improving, consequently, their quality of life.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143449294","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Cristina Orío-Aparicio, Carmen López-Escribano, Cristina Bel-Fenellós
{"title":"Borderline Intellectual Functioning: A Scoping Review","authors":"Cristina Orío-Aparicio, Carmen López-Escribano, Cristina Bel-Fenellós","doi":"10.1111/jir.13221","DOIUrl":"10.1111/jir.13221","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Borderline intellectual functioning (BIF) is a condition that involves limitations in cognitive skills that affect the daily functioning of people who present it. BIF has lost visibility in diagnostic manuals such as the DSM-5-TR and ICD-11, which relegate it to complementary categories of aspects requiring attention, rather than recognising it as a category of its own. This lack of recognition as well as unclear criteria for diagnosis underscores the need for a deeper understanding of BIF.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>The study conducted a scoping review to map the available evidence in the field of BIF. Following the PRISMA-ScR framework, ProQuest, WoS, SCOPUS and EBSCOhost databases were searched. Documents were selected based on inclusion criteria: date of publication (since 2012), study of BIF as a specific group and language (English or Spanish). A total of 138 documents were included, both academic and grey literature.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The review mapped the literature into key categories: intellectual functioning, adaptive functioning and additions for a comprehensive evaluation. Most research focused on comorbid psychiatric, emotional and behavioural disorders associated with BIF, as well as cognitive aspects. Very few addressed adaptive functioning explicitly, a crucial area for diagnosing and supporting individuals with BIF, though many covered its domains (conceptual, social and practical). Studies predominantly used quantitative methodologies, with only a few incorporating qualitative methods and directly involving people with BIF.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The review emphasises the need for a clearer definition of BIF. Future studies should incorporate the perspectives of individuals with BIF to fully understand their needs and challenges across various life domains.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 6","pages":"437-456"},"PeriodicalIF":2.1,"publicationDate":"2025-02-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13221","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143433333","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Esra Kınacı-Biber, Lis Gys, Anna C. Jansen, An-Sofie Schoonjans, Anke Van Dijck, R. Frank Kooy, Patricia Van de Walle, Ann Hallemans
{"title":"Investigation of Gait Characteristics and Kinematic Deviations in Rare Genetic Disorders with Instrumented Gait Analysis","authors":"Esra Kınacı-Biber, Lis Gys, Anna C. Jansen, An-Sofie Schoonjans, Anke Van Dijck, R. Frank Kooy, Patricia Van de Walle, Ann Hallemans","doi":"10.1111/jir.13218","DOIUrl":"10.1111/jir.13218","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Dravet Syndrome (DS), Helsmoortel-Van Der Aa Syndrome (HVDAS) and Tuberous Sclerosis Complex (TSC) are rare genetic syndromes, sharing intellectual disability (ID) and motor delay. In DS, two distinct gait patterns, crouch and non-crouch, have been described using instrumented 3D gait analysis (i3DGA). This cross-sectional study measures gait in participants with TSC and HVDAS. The findings are compared to the known crouch and non-crouch gait patterns observed in DS and to typical gait.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Participants (6–22 years) with DS (<i>n</i> = 37; 19 crouch and 18 non-crouch), HVDAS (<i>n</i> = 12) or TSC (<i>n</i> = 8) were compared with typically developing (TD) peers (<i>n</i> = 33). All participants underwent i3DGA (Plugin Gait model processed with Vicon Nexus and MATLAB®) to investigate spatiotemporal and lower-limb kinematics.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>All three genetic syndromes showed increased step width. Participants with HVDAS and DS, but not participants with TSC walked with decreased step length and velocity compared to TD. HVDAS demonstrated increased knee flexion during the stance phase, lack of hip extension during pre-swing, and increased ankle dorsiflexion during some phases of the gait cycle (<i>p</i> < 0.001). Additionally, HVDAS showed similar kinematic deviations to DS-NonCrouch. No significant differences were found in terms of kinematics between TSC and TD peers (<i>p</i> > 0.05).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The current study reveals differences in gait characteristics from typical functional gait in rare genetic disorders. DS-Crouch, DS-NonCrouch and HVDAS display a more impaired gait from a biomechanical perspective than TSC. The variability of clinical and genetic features might explain heterogeneity in gait deviations and should be further explored.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 5","pages":"383-392"},"PeriodicalIF":2.1,"publicationDate":"2025-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13218","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143414327","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Madison Brodeur, Ariel Schwartz, Katherine McDonald
{"title":"A Scoping Review of the Ways Gatekeepers May Hinder or Promote Opportunities for People With Intellectual and/or Developmental Disabilities to Learn About Research Participation","authors":"Madison Brodeur, Ariel Schwartz, Katherine McDonald","doi":"10.1111/jir.13216","DOIUrl":"10.1111/jir.13216","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adults with intellectual and/or developmental disabilities are disproportionately excluded from participation in research, consequently increasing disparities experienced by this group. Gatekeepers, individuals who control access to research participation opportunities, may either support or pose a barrier to inclusion in research. We sought to understand how gatekeepers serve as supports and barriers to the participation of people with intellectual and/or developmental disabilities in research and the factors that may drive their actions. We also sought to identify approaches to interacting with gatekeepers that promoted the sharing of research participation opportunities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We conducted a scoping review of manuscripts published between January 2009 and September 2024 describing gatekeeping during recruitment for adults with intellectual and/or developmental disabilities in social/behavioural research. We conducted content analysis of 22 manuscripts to identify ‘gate opening’ actions (actions that support research participation) and ‘gate closing’ actions (actions that pose a barrier to research participation) at the point of recruitment. We also identified approaches researchers took when interacting with gatekeepers to promote gate opening actions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Gatekeepers' attitudes (e.g., valuing research) and knowledge about prospective participants were associated with gate opening actions. Gatekeepers' attitudes of mistrust of researchers and/or research, deprioritisation of research and presumed incapacity of people with intellectual and/or developmental disabilities to consent to, participate in and/or benefit from research participation were associated with gate closing actions. Gatekeepers' lack of information (e.g., about research and prospective participants) was also associated with gate closing actions. Restrictive organisational policies and gatekeepers' lack of resources (e.g., time) were also associated with gate closing actions. Approaches for interacting with gatekeepers that may foster gate opening actions included: addressing gatekeeper concerns, educating gatekeepers about the benefits of research participation and developing relationships with gatekeepers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>We identified several malleable factors that may drive gate opening and gate closing actions. Enhanced collaboration between researchers and gatekeepers may foster greater opportunities for individuals with i","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 5","pages":"329-344"},"PeriodicalIF":2.1,"publicationDate":"2025-02-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13216","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143399178","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Brianna Piro-Gambetti, Sharon Krinsky-McHale, Cynthia Kovacs, Benjamin Handen, Bradley Christian, Charles M. Laymon, Davneet Minhas, Weiquan Luo, Dasoo Milton Yoon, Victoria L. Fleming, Emily Schworer, Heather Kirkorian, Sigan L. Hartley, Alzheimer Biomarkers Consortium-Down Syndrome
{"title":"Eye Tracking as a Tool for Detecting Alzheimer's Disease in People With Down Syndrome","authors":"Brianna Piro-Gambetti, Sharon Krinsky-McHale, Cynthia Kovacs, Benjamin Handen, Bradley Christian, Charles M. Laymon, Davneet Minhas, Weiquan Luo, Dasoo Milton Yoon, Victoria L. Fleming, Emily Schworer, Heather Kirkorian, Sigan L. Hartley, Alzheimer Biomarkers Consortium-Down Syndrome","doi":"10.1111/jir.13214","DOIUrl":"10.1111/jir.13214","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adults with Down syndrome (DS) experience an increased risk of Alzheimer's disease (<span>AD</span>). Valid cognitive assessments for adults with DS with severe/profound intellectual disability (ID) are needed. It is unclear whether eye tracking is feasible for detecting <span>AD</span> in DS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Fifty-three adults with DS completed a visual paired comparison (VPC) task, a battery of cognitive measures, and underwent PET scanning. Study partners reported on the participant's dementia symptoms. Bivariate correlations assessed associations between eye-tracking metrics and <span>AD</span>-related pathology and symptomatology. Analyses included the full sample (<i>n</i> = 53) and a subgroup with an IQ ≤ 45 (<i>n</i> = 33).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Greater fixation duration during the habituation phase was associated with better cognitive performance on the Modified Cued Recall Test (mCRT) (intrusions: <i>r</i> = −0.39, <i>p</i> = 0.011) and less PET tau (<i>r</i> = −0.47, <i>p</i> = 0.014). Larger saccadic amplitudes during the test phase were associated with younger age (<i>r</i> = −0.45, <i>p</i> < 0.001), better cognitive performance on the mCRT (total: <i>r</i> = 0.31, <i>p</i> = 0.041; intrusions: <i>r</i> = −0.33, <i>p</i> = 0.032) and less PET Aβ (<i>r</i> = −0.40, <i>p</i> = 0.025). Greater preference to fixate on the novel image was associated with fewer dementia symptoms (count: <i>r</i> = −0.44, <i>p</i> = 0.002; duration: <i>r</i> = −0.38, <i>p</i> = 0.009). This pattern of significance remained for the subgroup with lower IQ scores.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The VPC task is a potentially useful method for assessing <span>AD</span>-related cognitive impairments in adults with DS across varying ID levels.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 5","pages":"370-382"},"PeriodicalIF":2.1,"publicationDate":"2025-02-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13214","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143391020","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Amanallah Soltani, Susan Wiley, Pamela Williams-Arya, Emily K. Hoffman, Anna J. Esbensen
{"title":"Examining the Relation Between Sleep Problems and Behavioural Challenges in Youth With Down Syndrome","authors":"Amanallah Soltani, Susan Wiley, Pamela Williams-Arya, Emily K. Hoffman, Anna J. Esbensen","doi":"10.1111/jir.13213","DOIUrl":"10.1111/jir.13213","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The connection between sleep problems and behavioural challenges in individuals with Down syndrome (DS) has been a central focus of research across different age groups. However, uncertainty remains regarding this association, particularly when relying solely on daily-based assessments. This study aimed to examine the relationship between sleep problems and behavioural challenges at both overall (macro) and daily (micro) levels among youth with DS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Sleep disturbances were measured in a sample of 65 youth with DS aged 6–17 years using the Children's Sleep Habits Questionnaire (CSHQ) and actigraph watches assessing sleep efficiency, sleep duration and wake after sleep onset. Behavioural challenges were evaluated through externalising and internalising subscales of the Child Behavior Checklist (CBCL) and of the Scales of Independent Behavior, Revised (SIB-R).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The findings demonstrated that over a period of time, sleep problems are significantly associated with both externalising and internalising behaviours as measured by CSHQ and CBCL, even after accounting for the effects of IQ and SIB-R Broad Independence. No significant correlations were observed on a daily basis over seven consecutive days, as measured by actigraphy and both externalising and internalising indices of SIB-R.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The results highlight the complexity of the sleep–behaviour relationship in DS, indicating that while chronic sleep issues impact long-term behaviours, nightly variations do not predict immediate behavioural changes.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 4","pages":"310-317"},"PeriodicalIF":2.1,"publicationDate":"2025-02-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13213","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143391065","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Brian C. Helsel, Joseph R. Sherman, Amy E. Bodde, Richard A. Washburn, Lauren T. Ptomey
{"title":"A Comparison of Commonly Used Prediction Equations for Estimating Resting Metabolic Rate in Adults With Down Syndrome","authors":"Brian C. Helsel, Joseph R. Sherman, Amy E. Bodde, Richard A. Washburn, Lauren T. Ptomey","doi":"10.1111/jir.13215","DOIUrl":"10.1111/jir.13215","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Resting metabolic rate (RMR), the energy required by the body at rest, is the largest part of total daily energy expenditure. Commonly used prediction equations may overestimate RMR in adults with Down syndrome (DS). The purpose of this study was to assess the equivalency of prediction equations for estimating RMR in adults with DS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Twenty-five adults with DS (24 ± 5 years of age, 64% female) completed RMR assessments at an academic medical centre in the United States between November 2021 and July 2023. Measured RMR (kilocalories per day) was compared to estimated RMR from eight prediction equations using a null hypothesis significance (i.e., a paired <i>t</i>-test) and equivalence (i.e., a two one-sided test) tests. Bland–Altman plots, Pearson correlations and linear regressions were used to evaluate the bias between the measured and predicted RMR values.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Measured RMR in adults with DS was 1090 ± 136 kcal/day. Prediction equations overestimated RMR by 8 ± 16% (76 ± 165 kcal/day) to 45 ± 16% (488 ± 165 kcal/day) except for the Bernstein fat-free mass equation which underestimated RMR by 0.2 ± 11.5% (8 ± 123 kcal/day) and was statistically equivalent to measured RMR in our sample (<i>p</i> = 0.027).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The Bernstein fat-free mass equation offers better accuracy in adults with DS than other RMR prediction equations, but the equation needs to be evaluated in larger, more diverse samples of adults with DS.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 5","pages":"428-436"},"PeriodicalIF":2.1,"publicationDate":"2025-02-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143374204","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Proprioceptive Training Induced Adaptations of Static Balance Control: An RCT Study in Adults With Intellectual Disability","authors":"Konstantinos Rallis, Elisavet Konstantinidou, Vassilia Hatzitaki, Georgios Mavrommatis, Eleni Fotiadou","doi":"10.1111/jir.13212","DOIUrl":"10.1111/jir.13212","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adults with intellectual disability (ID) experience injurious falls that may affect their quality of life. The present randomised control trial (RCT) study examined the efficacy of a 10-week proprioceptive training programme, on static balance performance, in adults with mild to moderate ID.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Participants were voluntarily recruited from a day care centre and randomly assigned into the intervention (IG; <i>n</i> = 14; 36.4 ± 3.8 years; males/females = 8/6) and the control group (CG; <i>n</i> = 13; 37.6 ± 4.8 years; males/females = 7/6). The IG trained three times per week with the proprioceptive training programme, whereas both groups followed the regular adapted physical activity programme of the day care centre. Static balance was assessed before and after the intervention with three static balance tests [bipedal stance (60″), Tandem Romberg stance (30″) and single leg stance (15″)] performed on a force platform, whereas the Mini-BESTest was also used to assess aspects of static and dynamic balance in the field.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The IG significantly improved (<i>p</i> < 0.05) test scores of the Mini-BESTest and decreased the range and the root mean square of the centre of pressure displacement during the bipedal, Tandem Romberg and single leg stance, in contrast to the CG who showed no improvement.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The specific proprioceptive training programme improved the static balance of adults with ID and this could have a positive, significant impact in their daily life, as it may reduce the incidence of falls and relative injuries.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 4","pages":"298-309"},"PeriodicalIF":2.1,"publicationDate":"2025-02-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13212","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143374215","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
A. Durbin, R. Balogh, E. Lin, L. Palma, L. Plumptre, Y. Lunsky
{"title":"Community and Hospital Healthcare Use by Adults With and Without Intellectual and Developmental Disabilities in Ontario, Canada, During the First 2 Years of the COVID-19 Pandemic","authors":"A. Durbin, R. Balogh, E. Lin, L. Palma, L. Plumptre, Y. Lunsky","doi":"10.1111/jir.13209","DOIUrl":"10.1111/jir.13209","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study describes the proportion of Ontario adults with and without intellectual and developmental disabilities (IDD) who used community- and hospital-based healthcare in the first 2 years of the pandemic compared with the year pre–COVID-19.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Linked health administrative databases identified 87 341 adults with IDD and also adults without IDD living in Ontario, Canada. For each cohort, counts and proportions of adults who used different types of healthcare services were reported for the pre–COVID-19 year (16 March 2019 to 14 March 2020) and the first two COVID-19 years (15 March 2020 to 14 March 2021 and 15 March 2021 to 14 March 2022).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Compared with the year prior to COVID-19, the proportion of adults with and without IDD who used health services was lower during the first COVID-19 year, but the likelihood of all types of visits increased during the second year. The likelihood of using homecare and of being hospitalized nearly returned to pre-pandemic levels. Virtual physician visits increased in each COVID-19 year from 5.2% prior to the pandemic to 13.0% in year 1 and 58.7% in year 2. For all years, the proportion of adults who used each service type was higher for those with IDD than without IDD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>For adults with and without IDD in Ontario, Canada, during the first two COVID-19 years healthcare use decreased for all service types, except for virtual physician visits. In the second year, healthcare use increased but did not reach pre–COVID-19 levels. In all years, adults with IDD were more likely to use services than other adults.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 4","pages":"318-327"},"PeriodicalIF":2.1,"publicationDate":"2025-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13209","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143059170","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}