Journal of Intellectual Disability Research最新文献

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Cognitive and Adaptive Functioning of CTNNB1 Syndrome Patients: A Comparison With Autism Spectrum Disorder and Cerebral Palsy.
IF 2.1 2区 医学
Journal of Intellectual Disability Research Pub Date : 2025-03-27 DOI: 10.1111/jir.13235
Mercè Pallarès-Sastre, Imanol Amayra, Rafael Pulido, Caroline E Nunes-Xavier, Sonia Bañuelos, Fabio Cavaliere, Maitane García
{"title":"Cognitive and Adaptive Functioning of CTNNB1 Syndrome Patients: A Comparison With Autism Spectrum Disorder and Cerebral Palsy.","authors":"Mercè Pallarès-Sastre, Imanol Amayra, Rafael Pulido, Caroline E Nunes-Xavier, Sonia Bañuelos, Fabio Cavaliere, Maitane García","doi":"10.1111/jir.13235","DOIUrl":"https://doi.org/10.1111/jir.13235","url":null,"abstract":"<p><strong>Background: </strong>The CTNNB1 syndrome is a neurodevelopmental disorder considered an ultra-rare disease, first discovered in 2012. Given its comorbidity of symptoms with more prevalent diseases, such as ASD or CP, many CTNNB1 syndrome patients had previously received those diagnosis. Therefore, the aim of this study is to establish differences on the cognitive and adaptive functioning of the CTNNB1 syndrome compared with ASD and CP.</p><p><strong>Methods: </strong>A total of 55 paediatric patients-25 CTNNB1 syndrome, 17 ASD and 13 PC-were assessed with an extensive protocol for neuropsychological domains through in-person assessments and online meetings for the parent-reported questionnaire.</p><p><strong>Results: </strong>No cognitive differences were found among verbal tasks between groups, even though CTNNB1 syndrome patients obtained significantly lower scores in visuospatial and logical tasks. Regarding adaptive functioning, ASD patients outperformed the CTNNB1 syndrome group in most domains, whereas CP patients did not differ as much, obtaining only lower scores in gross motor ability. Externalizing problems were more prevalent in the CTNNB1 syndrome group compared with the control groups. Also, correlations indicated improvement of cognitive and adaptive functioning over the years for the CTNNB1 syndrome patients.</p><p><strong>Conclusions: </strong>This is the first study to compare the cognitive and adaptive functioning of CTNNB1 syndrome patients with control diseases and detect significant difference. Although intellectual disability is one of the main manifestations of the CTNNB1 syndrome, patients performed better on verbal cognitive tasks than in visuospatial and logical thinking exercises, while adaptive functioning performances did not differ from control groups.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143719842","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}
引用次数: 0
The Effect of SPECTROM Training on Support Staff Knowledge of Psychotropic Medicine and Attitude Towards Behaviours That Challenge in Adults With Intellectual Disabilities to Help Implement the STOMP Initiative.
IF 2.1 2区 医学
Journal of Intellectual Disability Research Pub Date : 2025-03-26 DOI: 10.1111/jir.13236
B Limbu, S Deb, J Bradshaw, V Cooper
{"title":"The Effect of SPECTROM Training on Support Staff Knowledge of Psychotropic Medicine and Attitude Towards Behaviours That Challenge in Adults With Intellectual Disabilities to Help Implement the STOMP Initiative.","authors":"B Limbu, S Deb, J Bradshaw, V Cooper","doi":"10.1111/jir.13236","DOIUrl":"https://doi.org/10.1111/jir.13236","url":null,"abstract":"<p><strong>Background: </strong>Overmedication of adults with intellectual (learning) disabilities, particularly the off-licence use of psychotropic medicines for behaviours that challenge in the absence of a psychiatric disorder, is a major public health concern and an example of health inequalities. In the United Kingdom, we coproduced online training resources backed up by face-to-face training for support staff (direct care workers) called SPECTROM involving all stakeholders, including adults with intellectual disabilities and their families, to help reduce the overmedication and implement NHS England's STOMP initiative.</p><p><strong>Method: </strong>In a feasibility cluster randomised controlled trial, we trained service managers and support staff using two core modules of SPECTROM, namely, (a) Medicine/STOMP and (b) Alternatives to Medicine (ATM) using an online platform. These two core modules introduced 12 other modules and other online resources. We assessed trainees' knowledge of psychotropic medicines using the Psychotropic Knowledge Questionnaire-Revised (PKQ-R) and their attitude to behaviours that challenge using the Management of Aggression and Violence Attitude Scale-Revised-Intellectual Disabilities (MAVAS-R-ID) using a pre-post training design.</p><p><strong>Results: </strong>The research team delivered SPECTROM training to 18 service managers and 122 support staff. Of the 140 trainees, 126 completed PKQ-R at baseline before and within 4 weeks after the training. There was a post-training improvement in PKQ-R scores in 42 of the 43 questions (97.7%), 22 of which were statistically significant differences (p < 0.001). The MAVAS-R-ID was completed at baseline and within 4 weeks of training by 125 trainees. The MAVAS-R-ID total score showed statistically significant post-training improvements (p < 0.01). Individual domain score analysis showed a statistically significant improvement in one of the five domains related to attitude regarding the use of medicine for behaviours that challenge.</p><p><strong>Conclusions: </strong>The SPECTROM training seems to improve staff knowledge of psychotropic medicine, at least in the short-term, and attitude towards behaviours that challenge, particularly concerning the use of psychotropic medicine.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143719846","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}
引用次数: 0
Impact of Obesity on Hypoxemia During Deep Dental Sedation for Paediatric and Adult Patients With Intellectual Disabilities: CT90 as an Outcome.
IF 2.1 2区 医学
Journal of Intellectual Disability Research Pub Date : 2025-03-20 DOI: 10.1111/jir.13232
Aki Kawauchi, Shigeru Maeda, Yasushi Nagao, Hidenori Kubo, Miki Yokoyama, Yasunori Sato, Shiroh Isono
{"title":"Impact of Obesity on Hypoxemia During Deep Dental Sedation for Paediatric and Adult Patients With Intellectual Disabilities: CT90 as an Outcome.","authors":"Aki Kawauchi, Shigeru Maeda, Yasushi Nagao, Hidenori Kubo, Miki Yokoyama, Yasunori Sato, Shiroh Isono","doi":"10.1111/jir.13232","DOIUrl":"https://doi.org/10.1111/jir.13232","url":null,"abstract":"<p><strong>Objective: </strong>Using cumulative time spent with SpO<sub>2</sub> < 90% (CT90) as an indicator, this retrospective observational study aimed to assess the incidence and severity of hypoxemia during deep intravenous sedation for patients with intellectual disabilities. Additionally, it intended to identify patient characteristics and anaesthesia-related factors independently associated with CT90.</p><p><strong>Study design: </strong>The pulse oximetry data were collected every 5 s during intravenous dental sedation in 144 patients with intellectual disabilities. Hypoxemia and severe hypoxemia were defined as SpO<sub>2</sub> < 90% and CT90 > 1%, respectively. Multiple linear regression analysis was performed to identify independent risk indicators associated with the occurrence of hypoxemia.</p><p><strong>Results: </strong>More than one episode of hypoxemia occurred in 62% (89/144) of patients. CT90 was 1.9 ± 4.8% during sedation and severe hypoxemia developed in 35% (50/144) of patients. BMI was a significant independent patient risk indicator for severe hypoxemia but accounted for only 28% of the variability in its incidence. Notably, the use of a BIS monitor, an appropriate dose of propofol and an extra suctioning device were identified as independent factors that could improve SpO<sub>2</sub> level.</p><p><strong>Conclusion: </strong>Severe hypoxemia frequently occurred during intravenous sedation, particularly in obese patients with intellectual disabilities. Technical and pharmacological improvements of sedation strategies are essential.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143663386","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}
引用次数: 0
Predictive Validity of the Brøset Violence Checklist in a Secured Institution for Offenders With Intellectual Disabilities. 布罗塞特暴力检查表在智障罪犯看守所中的预测效力。
IF 2.1 2区 医学
Journal of Intellectual Disability Research Pub Date : 2025-03-20 DOI: 10.1111/jir.13233
Jacob Hvidhjelm, Søren Holst
{"title":"Predictive Validity of the Brøset Violence Checklist in a Secured Institution for Offenders With Intellectual Disabilities.","authors":"Jacob Hvidhjelm, Søren Holst","doi":"10.1111/jir.13233","DOIUrl":"https://doi.org/10.1111/jir.13233","url":null,"abstract":"<p><strong>Background: </strong>The integration of systematic risk assessments into care settings for offenders with intellectual disabilities (IDs) is a growing priority, yet evidence on the validity of existing tools in this population remains limited. The Brøset Violence Checklist (BVC) is widely used to assess short-term violence risk, but its predictive accuracy in individuals with IDs remains uncertain. This study investigates the predictive validity of the BVC in a specialized institutional context for offenders with IDs, focusing on its performance across different shifts and demographic subgroups.</p><p><strong>Method: </strong>A retrospective observational design was used to analyse 153 262 BVC assessments and 1325 documented severe violent incidents over 2.5 years in a secured Danish institution for offenders with IDs. Sensitivity, specificity, positive predictive value (PPV) and negative predictive value (NPV) were calculated across different BVC thresholds. Generalized linear mixed models (GLMMs) were applied to assess the influence of sex and time of day on predictive performance.</p><p><strong>Results: </strong>The BVC demonstrated high specificity and NPV across all shifts, confirming its utility in identifying low-risk scenarios. However, sensitivity and PPV were limited, particularly during night shifts and at higher score thresholds. Predictive accuracy was highest during evening shifts, aligning with periods of increased staff-resident interactions. GLMM analyses indicated that the relationship between BVC scores and violence risk was moderated by sex and time of day, with female residents and low-activity periods presenting unique challenges to prediction.</p><p><strong>Conclusions: </strong>The findings underscore the need for population-specific adaptations to the BVC, particularly to address contextual and demographic factors influencing aggression in ID populations. Recommendations include supplemental assessment strategies for low-activity shifts, sex-specific behavioural indicators and the development of tailored tools for ID care settings. This study advances the understanding of violence risk dynamics in ID populations and informs interventions to enhance safety for residents and staff.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143670076","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}
引用次数: 0
Prospective Characterisation of Age-Related Changes in Self-Injurious Behaviour in a Sample of Children With Global Developmental Delay Aged 2-12 Years.
IF 2.1 2区 医学
Journal of Intellectual Disability Research Pub Date : 2025-03-19 DOI: 10.1111/jir.13228
Breanne J Byiers, Jaclyn Gunderson, Andrea Huebner, Frank J Symons
{"title":"Prospective Characterisation of Age-Related Changes in Self-Injurious Behaviour in a Sample of Children With Global Developmental Delay Aged 2-12 Years.","authors":"Breanne J Byiers, Jaclyn Gunderson, Andrea Huebner, Frank J Symons","doi":"10.1111/jir.13228","DOIUrl":"https://doi.org/10.1111/jir.13228","url":null,"abstract":"<p><strong>Background: </strong>Self-injurious behaviour (SIB) is a common problem among individuals with intellectual and developmental disabilities (IDDs) with important impacts on quality of life. Although some evidence suggests that SIB may increase with age, perhaps in a curvilinear pattern, this is primarily based on cross-sectional studies. Therefore, the purpose of the current study was to conduct a prospective, longitudinal analysis of age-related changes in a high-risk cohort of children with developmental disabilities/delays.</p><p><strong>Methods: </strong>A total of 110 participants, between 2 and 12 years of age at enrolment (70% male), were followed for between 2 and 4 years. Caregivers completed the RBS-EC SIB subscale annually, for a total of 317 assessments. The SIB total score, SIB interference ratings and endorsement of specific topographies were selected as dependent measures. Generalised linear models evaluating linear, quadratic and cubic age-related changes and differences by intellectual disability (ID) status (no or mild ID vs. moderate to profound ID) were created for each outcome.</p><p><strong>Results: </strong>For SIB total scores, the model suggested complex developmental patterns that varied by degree of ID. For SIB interference ratings, the model suggested that individuals with moderate to profound ID showed relatively high and stable levels of SIB interference across ages, whereas individuals with no or mild ID showed an increasing trend with age. Patterns varied across the specific SIB topographies.</p><p><strong>Discussion: </strong>The results suggest that age-related changes in SIB are complex and may vary across topographies. Overall, the results are concerning in that they indicate a potentially increasing trend in frequency of SIB and its impact on daily activities as individuals approach adolescence, indicating the need for further longitudinal work across the lifespan.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143657439","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}
引用次数: 0
Psychometric Properties of the Nine-Item Personal Health Questionnaire (PHQ-9) Seven-Item Generalised Anxiety Disorder Scale (GAD-7), and the Work and Social Adjustment Scale (WSAS) With People With Intellectual Disabilities.
IF 2.1 2区 医学
Journal of Intellectual Disability Research Pub Date : 2025-03-17 DOI: 10.1111/jir.13231
Dave Dagnan, Rob Saunders, Joshua Stott, Richard Thwaites, Chris Hatton
{"title":"Psychometric Properties of the Nine-Item Personal Health Questionnaire (PHQ-9) Seven-Item Generalised Anxiety Disorder Scale (GAD-7), and the Work and Social Adjustment Scale (WSAS) With People With Intellectual Disabilities.","authors":"Dave Dagnan, Rob Saunders, Joshua Stott, Richard Thwaites, Chris Hatton","doi":"10.1111/jir.13231","DOIUrl":"https://doi.org/10.1111/jir.13231","url":null,"abstract":"<p><strong>Background: </strong>The nine-item Physical Health Questionnaire (PHQ-9), the seven-item Generalised Anxiety Disorder scale (GAD-7) and the Work and Social Adjustment Scale (WSAS) are, respectively, self-report measures of depression, generalised anxiety, and the impact of mental health on the person's personal functioning that are widely used in mainstream mental health services in England. The psychometric properties of these scales when used with people with intellectual disabilities have not been established.</p><p><strong>Method: </strong>Item level data for the PHQ-9 (n = 128), GAD-7 (n = 124) and WSAS (n = 133) for people with intellectual disabilities in an English NHS Talking Therapies for anxiety and depression (NHSTT) service in the north of England were analysed using internal reliability statistics and confirmatory factor analysis.</p><p><strong>Results: </strong>In this study, the full PHQ-9, GAD-7 and WSAS have Cronbach's α of 0.81, 0.84 and 0.81, respectively, and have acceptable ranges of corrected item-total correlations. The two-factor structures for the PHQ-9 and the GAD-7 were a better fit than single-factor structures, although the single-factor fit and the correlation between the two factors within each scale suggest that their use as a single scale is justified. The single-factor structure for the WSAS was a good fit.</p><p><strong>Conclusions: </strong>In this study, the widely used PHQ-9, GAD-7 and WSAS demonstrate internal consistency values and factor analysis structure similar to those for individuals without intellectual disabilities. The data support the use of these measures for people with intellectual disabilities attending routine primary care mental health services.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143648794","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}
引用次数: 0
Views and Experiences of Dementia in People With Intellectual Disabilities: A Systematic Review of Qualitative Research.
IF 2.1 2区 医学
Journal of Intellectual Disability Research Pub Date : 2025-03-16 DOI: 10.1111/jir.13227
Joanna Carter, Aimee Spector, Afia Ali, Amelia McFeeters, Sarah Butt, Georgina Charlesworth
{"title":"Views and Experiences of Dementia in People With Intellectual Disabilities: A Systematic Review of Qualitative Research.","authors":"Joanna Carter, Aimee Spector, Afia Ali, Amelia McFeeters, Sarah Butt, Georgina Charlesworth","doi":"10.1111/jir.13227","DOIUrl":"https://doi.org/10.1111/jir.13227","url":null,"abstract":"<p><strong>Background: </strong>It is important to hear the perspectives of people with intellectual disabilities on dementia. This review aimed to explore views and experiences of dementia from the perspective of people with intellectual disabilities and methodologies enabling people with intellectual disabilities and dementia to participate in qualitative research.</p><p><strong>Methods: </strong>Studies were identified in database searches, along with reference and citation searches. Qualitative data were reviewed using thematic synthesis and risk of bias assessed using the Critical Appraisal Skills Programme (2018). Methodologies used to include participants with intellectual disabilities and dementia were reviewed.</p><p><strong>Results: </strong>Findings from 11 studies, with a total of 47 participants, highlighted loss of ability, relationships and connection associated with dementia, counteracted by support from others, and maintenance of a sense of self through choice, relational connection and competence. A range of methodologies were identified to enable participants with intellectual disabilities and dementia to participate in research.</p><p><strong>Conclusions: </strong>This review highlights emerging, albeit demographically limited, qualitative research in this field. It suggests ways to build on this including methodologies to facilitate inclusion of people with intellectual disabilities and dementia in further research.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143639448","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}
引用次数: 0
'Mind the Gap'-A Survey on Care Gaps and Priorities for the Transition to Adult Healthcare According to Caregivers of Young People With Rare Conditions Associated With Intellectual Disability.
IF 2.1 2区 医学
Journal of Intellectual Disability Research Pub Date : 2025-03-14 DOI: 10.1111/jir.13229
Mirthe J Klein Haneveld, Klea Vyshka, Charlotte M W Gaasterland, Tomasz Grybek, Katarzyna Świeczkowska, AnneLoes Van Staa, Agnies M Van Eeghen
{"title":"'Mind the Gap'-A Survey on Care Gaps and Priorities for the Transition to Adult Healthcare According to Caregivers of Young People With Rare Conditions Associated With Intellectual Disability.","authors":"Mirthe J Klein Haneveld, Klea Vyshka, Charlotte M W Gaasterland, Tomasz Grybek, Katarzyna Świeczkowska, AnneLoes Van Staa, Agnies M Van Eeghen","doi":"10.1111/jir.13229","DOIUrl":"https://doi.org/10.1111/jir.13229","url":null,"abstract":"<p><strong>Background: </strong>For young people with rare conditions associated with intellectual disability, the transfer from paediatric to adult healthcare providers is often complicated. European Reference Network ERN-ITHACA (Intellectual disability, TeleHealth, Autism and Congenital Anomalies) on Rare Congenital Malformations and Rare Intellectual Disability aims to develop a clinical practice guideline to improve this transition. The aim of this study was to identify which aspects of the transition to adult care matter most and to describe the current care gap as experienced by European caregivers to inform the guideline scope.</p><p><strong>Methods: </strong>An international web-based survey was conducted by ERN-ITHACA in January-February 2023. Priorities for a good transition process and current care gaps in Europe were identified using the 'Mind the Gap' scale. The surveys were created in plain and easy-to-read language and available in nine European languages.</p><p><strong>Results: </strong>One hundred fifty-seven caregivers from 15 European countries completed the survey, representing over 40 conditions, including the Phelan-McDermid, Rubinstein-Taybi, 22q11.2 deletion and Kleefstra syndromes. Care gaps were identified, particularly related to process issues such as the preparation for and adaptation to adult healthcare, supporting independence and planning for the future. Items considered essential for optimal healthcare were related to individualised approaches, information provision and coordination of care.</p><p><strong>Discussion: </strong>Coordinated, specialised, individualised and multidisciplinary care is required to support youth with rare conditions and intellectual disability in the transitional age. Supporting young people's independence, orchestrating multidisciplinary care and ensuring effective communication are particularly challenging in the transition to adult healthcare for this population.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143624774","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}
引用次数: 0
Factors Associated With Alzheimer's Dementia Diagnosis and Survival in Down Syndrome.
IF 2.1 2区 医学
Journal of Intellectual Disability Research Pub Date : 2025-03-12 DOI: 10.1111/jir.13230
Olivia Pounds, Kate Theodore, Karen Dodd
{"title":"Factors Associated With Alzheimer's Dementia Diagnosis and Survival in Down Syndrome.","authors":"Olivia Pounds, Kate Theodore, Karen Dodd","doi":"10.1111/jir.13230","DOIUrl":"https://doi.org/10.1111/jir.13230","url":null,"abstract":"<p><strong>Background: </strong>People with Down syndrome (DS) have an increased risk for Alzheimer's disease (AD). Identifying factors associated with dementia onset and subsequent survival will support in understanding the disease profile, improving timely diagnosis, management, and care planning.</p><p><strong>Method: </strong>Variables associated with age at dementia onset and survival times were assessed in 279 adults with DS who accessed a community learning disability service. After outliers were removed, regression and hazard regression models were used for disease onset (n = 265) and survival times (n = 180), respectively.</p><p><strong>Results: </strong>Earlier age at first assessment and living with family predicted earlier age at diagnosis, which led to longer survival, post-diagnosis. Epilepsy and living in a long-stay hospital were associated with earlier mortality.</p><p><strong>Conclusion: </strong>Implications for clinical practice include reflections on the importance of early baseline assessments and caregiver awareness. Suggestions for future research include investigating intersectionality of social factors with genetics to better understand AD trajectories.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143615593","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}
引用次数: 0
Using National Survey Data to Estimate Healthcare Communication Disparities for Adults With Intellectual and Developmental Disabilities.
IF 2.1 2区 医学
Journal of Intellectual Disability Research Pub Date : 2025-03-11 DOI: 10.1111/jir.13224
Jamie Koenig, Lauren Bishop
{"title":"Using National Survey Data to Estimate Healthcare Communication Disparities for Adults With Intellectual and Developmental Disabilities.","authors":"Jamie Koenig, Lauren Bishop","doi":"10.1111/jir.13224","DOIUrl":"https://doi.org/10.1111/jir.13224","url":null,"abstract":"<p><strong>Background: </strong>Previous studies have identified considerable health outcome disparities for adults with intellectual and developmental disabilities (IDD) as well as poor or ineffective communication between adults with IDD and their medical providers.</p><p><strong>Methods: </strong>Using National Health Interview Survey (NHIS) data, this paper uses logistic regression to estimate disparities in healthcare communication and satisfaction between adults with IDD, adults with non-IDD disabilities, and adults with no reported disabilities, controlling for sociodemographic characteristics. Communication quality is measured with survey questions about whether medical providers are respectful, ask for patients' opinions, and offer understandable medical information.</p><p><strong>Results: </strong>We identified sizeable disparities in communication quality and satisfaction between adults with non-IDD disabilities and no reported disabilities. Adults with IDD experienced significantly lower odds of receiving understandable information compared to adults with no reported disabilities. There are suggestive evidence that adults with IDD have lower odds of being satisfied with healthcare, having their opinion asked, and feeling respected.</p><p><strong>Conclusions: </strong>There are healthcare communication and satisfaction disparities between adults with and without IDD or other disabilities. Future research should characterise the size and exact nature of these disparities in communication quality and satisfaction for those with IDD. These findings can inform interventions and trainings to improve communication quality and satisfaction for those with all forms of disability.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143605184","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}
引用次数: 0
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