B. F. Barrett, M. Wehmeyer, J. Kolb, T. Ostermann, T. Sappok
Background
Compared with the general population, adults with an intellectual developmental disorder (IDD) are more likely to develop mental health problems and to receive high levels of psychotropic medication, particularly antipsychotics. The emotional development (ED) approach may help to better understand the nature of challenging behaviour (CB) and tailor treatment and support accordingly. The aim of this retrospective study was to investigate the impact of the ED approach on the prescription of psychotropic medication during inpatient psychiatric treatment.
Methods
The clinical data of 1758 patients were analysed within a retrospective study design over a period of 12 years. ED level was assessed (1) for the first time (INITIAL-SEO), (2) during a previous hospital stay (PAST-SEO) or (3) not at all (NO-SEO). The effects of the ED assessment and the respective intervention during the current admission on the number of psychotropics and the number and dosage of antipsychotics were analysed for the total sample, including those with CB, autism spectrum disorders and psychosis. Group differences were analysed by a chi-square test and a one-factorial analysis of variance. For analysing the impact of the application of the ED approach on psychotropic medication, a covariance model was applied. Changes between the subsamples were analysed by t-tests for dependent samples.
Results
The ED approach had a significant impact on reducing the overall amount of psychotropic medication and the dosage of antipsychotics in all patients with IDD. These effects were mainly attributable to those showing CB. In patients with autism spectrum disorders, the developmental approach reduced the number of antipsychotics. No effects could be observed in patients with psychosis; in this subsample, both the number and dosage of antipsychotics increased.
Conclusions
The application of the ED approach in the current hospital stay reduced the number of psychotropic drugs and the number and dosage of antipsychotics, especially in those patients with IDD and CB, but also in those with autism spectrum disorders.
背景：与普通人群相比，患有智力发育障碍（IDD）的成年人更容易出现心理健康问题，并接受大量的精神药物治疗，尤其是抗精神病药物。情绪发展（ED）方法可能有助于更好地了解挑战性行为（CB）的性质，并据此调整治疗和支持。这项回顾性研究旨在调查情绪发展法对精神病住院治疗期间精神药物处方的影响：方法：采用回顾性研究设计，分析了 1758 名患者 12 年来的临床数据。对急诊室水平进行了评估：(1) 首次评估（INITIAL-SEO）；(2) 前次住院期间评估（PAST-SEO）；(3) 完全未评估（NO-SEO）。我们对包括 CB、自闭症谱系障碍和精神病患者在内的所有样本进行了分析，以了解 ED 评估和本次入院期间的相应干预措施对精神药物使用数量以及抗精神病药物使用数量和剂量的影响。组间差异通过卡方检验和单因子方差分析进行分析。为了分析 ED 方法的应用对精神药物治疗的影响，采用了协方差模型。子样本之间的变化通过因果样本 t 检验进行分析：结果：ED 方法对减少所有 IDD 患者的精神药物总量和抗精神病药物剂量有显著影响。这些效果主要归功于那些表现为CB的患者。在自闭症谱系障碍患者中，发展疗法减少了抗精神病药物的用量。在精神病患者中未观察到任何效果；在该子样本中，抗精神病药物的数量和剂量均有所增加：结论：在目前的住院治疗中，采用发展性治疗方法减少了精神药物的数量以及抗精神病药物的数量和用量，尤其是在IDD和CB患者以及自闭症谱系障碍患者中。
{"title":"Impact of the emotional development approach on psychotropic medication in adults with intellectual and developmental disabilities: a retrospective clinical analysis","authors":"B. F. Barrett, M. Wehmeyer, J. Kolb, T. Ostermann, T. Sappok","doi":"10.1111/jir.13136","DOIUrl":"10.1111/jir.13136","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Compared with the general population, adults with an intellectual developmental disorder (IDD) are more likely to develop mental health problems and to receive high levels of psychotropic medication, particularly antipsychotics. The emotional development (ED) approach may help to better understand the nature of challenging behaviour (CB) and tailor treatment and support accordingly. The aim of this retrospective study was to investigate the impact of the ED approach on the prescription of psychotropic medication during inpatient psychiatric treatment.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The clinical data of 1758 patients were analysed within a retrospective study design over a period of 12 years. ED level was assessed (1) for the first time (INITIAL-SEO), (2) during a previous hospital stay (PAST-SEO) or (3) not at all (NO-SEO). The effects of the ED assessment and the respective intervention during the current admission on the number of psychotropics and the number and dosage of antipsychotics were analysed for the total sample, including those with CB, autism spectrum disorders and psychosis. Group differences were analysed by a chi-square test and a one-factorial analysis of variance. For analysing the impact of the application of the ED approach on psychotropic medication, a covariance model was applied. Changes between the subsamples were analysed by <i>t</i>-tests for dependent samples.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The ED approach had a significant impact on reducing the overall amount of psychotropic medication and the dosage of antipsychotics in all patients with IDD. These effects were mainly attributable to those showing CB. In patients with autism spectrum disorders, the developmental approach reduced the number of antipsychotics. No effects could be observed in patients with psychosis; in this subsample, both the number and dosage of antipsychotics increased.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The application of the ED approach in the current hospital stay reduced the number of psychotropic drugs and the number and dosage of antipsychotics, especially in those patients with IDD and CB, but also in those with autism spectrum disorders.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 8","pages":"941-953"},"PeriodicalIF":2.1,"publicationDate":"2024-03-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13136","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140305904","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}
PTEN is primarily known as a tumour suppressor gene. However, research describes higher rates of difficulties including intellectual disability and difficulties relating to autism spectrum conditions (ASCs) in people with germline PTEN mutations. Other psychological characteristics/experiences are less often reported and are explored in this study.
Methods
The parents of 20 children with PTEN mutations completed an online survey exploring adaptive behaviour, ASC-associated behaviours, anxiety, mood, hypermobility, behaviours that challenge, sensory experiences, quality of life and parental wellbeing. Published normative data and data from groups of individuals with other genetic neurodevelopmental conditions were used to contextualise findings.
Results
Overall levels of adaptive behaviour were below the ‘typical’ range, and no marked relative differences were noted between domains. Higher levels of ASC-related difficulties, including sensory experiences, were found in comparison with ‘typically developing’ children, with a possible peak in restrictive/repetitive behaviour; ASC and sensory processing atypicality also strongly correlated with reported joint hypermobility. A relative preservation of social motivation was noted. Anxiety levels were found to be elevated overall (and to relate to sensory processing and joint hypermobility), with the exception of social anxiety, which was comparable with normative data. Self-injurious behaviour was common.
Conclusions
Results suggest a wide range of possible difficulties in children with PTEN mutations, including elevated anxiety. Despite elevated ASC phenomenology, social motivation may remain relatively strong. Firm conclusions are restricted by a small sample size and potential recruitment bias, and future research is required to further explore the relationships between such characteristics.
{"title":"Behavioural, developmental and psychological characteristics in children with germline PTEN mutations: a carer report study","authors":"K. Cummings, R. P. Dias, R. Hart, A. Welham","doi":"10.1111/jir.13130","DOIUrl":"10.1111/jir.13130","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p><i>PTEN</i> is primarily known as a tumour suppressor gene. However, research describes higher rates of difficulties including intellectual disability and difficulties relating to autism spectrum conditions (ASCs) in people with germline <i>PTEN</i> mutations. Other psychological characteristics/experiences are less often reported and are explored in this study.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The parents of 20 children with <i>PTEN</i> mutations completed an online survey exploring adaptive behaviour, ASC-associated behaviours, anxiety, mood, hypermobility, behaviours that challenge, sensory experiences, quality of life and parental wellbeing. Published normative data and data from groups of individuals with other genetic neurodevelopmental conditions were used to contextualise findings.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Overall levels of adaptive behaviour were below the ‘typical’ range, and no marked relative differences were noted between domains. Higher levels of ASC-related difficulties, including sensory experiences, were found in comparison with ‘typically developing’ children, with a possible peak in restrictive/repetitive behaviour; ASC and sensory processing atypicality also strongly correlated with reported joint hypermobility. A relative preservation of social motivation was noted. Anxiety levels were found to be elevated overall (and to relate to sensory processing and joint hypermobility), with the exception of social anxiety, which was comparable with normative data. Self-injurious behaviour was common.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Results suggest a wide range of possible difficulties in children with <i>PTEN</i> mutations, including elevated anxiety. Despite elevated ASC phenomenology, social motivation may remain relatively strong. Firm conclusions are restricted by a small sample size and potential recruitment bias, and future research is required to further explore the relationships between such characteristics.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 8","pages":"916-931"},"PeriodicalIF":2.1,"publicationDate":"2024-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13130","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140174974","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}
E. Fucà, F. Costanzo, P. Galassi, L. Celestini, D. Valentini, S. Vicari
Background
Individuals with Down syndrome (DS) exhibit higher risk for celiac disease (CD) than general population. Although literature suggests CD could be associated with behavioural problems in both paediatric and adult age, such association has been poorly explored in children and adolescents DS. Therefore, the current study aimed to investigate differences in emotional/behavioural difficulties, adaptive skills and sleep problems between children with DS with and without CD.
Methods
Data were retrospectively collected from a database including data from 381 individuals with DS (3–18 years). The final sample included 65 participants, 27 with co-occurring CD and 38 age, IQ, sex and body mass index-matched controls without CD. Emotional/behavioural difficulties, adaptive skills and sleep problems were assessed through parent report questionnaires.
Results
No group differences emerged in emotional/behavioural difficulties, whereas participants in the CD group showed better adaptive skills in the practical domain than control group. Weak differences emerged in sleep problems.
Conclusions
Youth with DS and co-occurring CD do not exhibit more emotional and behavioural problems than youth with DS without co-occurring CD but exhibit better adaptive skills in the practical domain.
背景：唐氏综合征（DS）患者罹患乳糜泻（CD）的风险高于普通人群。尽管有文献表明，腹腔疾病可能与儿童和成人的行为问题有关，但在儿童和青少年唐氏综合征患者中，这种关联性的研究还很少。因此，本研究旨在调查患有和未患有 CD 的 DS 儿童在情绪/行为障碍、适应能力和睡眠问题方面的差异：方法：研究人员从数据库中回顾性收集了 381 名 DS 患者（3-18 岁）的数据。最终样本包括 65 名参与者，其中 27 人同时患有 CD，38 人在年龄、智商、性别和体重指数方面与未患有 CD 的对照组相匹配。情绪/行为障碍、适应能力和睡眠问题通过家长报告问卷进行评估：结果：在情绪/行为障碍方面没有出现组间差异，而在实际领域的适应能力方面，儿童疾病组的参与者要优于对照组。睡眠问题方面的差异较小：结论：与没有合并 CD 的 DS 青少年相比，合并 CD 的 DS 青少年没有表现出更多的情绪和行为问题，但在实践领域表现出更好的适应能力。
{"title":"Celiac disease in children and adolescents with Down syndrome: behavioural, adaptive and sleep profiles","authors":"E. Fucà, F. Costanzo, P. Galassi, L. Celestini, D. Valentini, S. Vicari","doi":"10.1111/jir.13135","DOIUrl":"10.1111/jir.13135","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individuals with Down syndrome (DS) exhibit higher risk for celiac disease (CD) than general population. Although literature suggests CD could be associated with behavioural problems in both paediatric and adult age, such association has been poorly explored in children and adolescents DS. Therefore, the current study aimed to investigate differences in emotional/behavioural difficulties, adaptive skills and sleep problems between children with DS with and without CD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Data were retrospectively collected from a database including data from 381 individuals with DS (3–18 years). The final sample included 65 participants, 27 with co-occurring CD and 38 age, IQ, sex and body mass index-matched controls without CD. Emotional/behavioural difficulties, adaptive skills and sleep problems were assessed through parent report questionnaires.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>No group differences emerged in emotional/behavioural difficulties, whereas participants in the CD group showed better adaptive skills in the practical domain than control group. Weak differences emerged in sleep problems.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Youth with DS and co-occurring CD do not exhibit more emotional and behavioural problems than youth with DS without co-occurring CD but exhibit better adaptive skills in the practical domain.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 8","pages":"932-940"},"PeriodicalIF":2.1,"publicationDate":"2024-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13135","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140174975","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}
M. N. Böhmer, A. Oppewal, P. J. E. Bindels, E. J. W. van Someren, D. A. M. Festen
Background
Sleep–wake problems and depressive symptoms are common in people with intellectual disabilities (IDs) and are thought to be related to the unstable sleep–wake rhythm in this population. Previously, we showed that after increasing environmental light exposure, mid-sleep and sleep onset advanced, and mood improved over a period of 14 weeks after installing environmental dynamic light installations in the living room of people with IDs. We invited participants of that short-term study to take part in the current study on sleep–wake rhythm, mood and behaviour in older adults with IDs 1 year after installing environmental dynamic light installations in the common living rooms of six group homes.
Methods
A pre–post study was performed from October 2017 to February 2019. We included 45 participants (63.5 ± 8.5 years, 67% female) from six group home facilities who provided data at baseline (9, 4 and 1 weeks prior to installing light installations), short term (3, 7 and 14 weeks after installing light installations) and 1 year (54 weeks after installing light installations). Wrist activity was measured with actigraphy (GENEActiv) to derive the primary outcome of interdaily stability of sleep–wake rhythms as well as sleep estimates. Mood was measured with the Anxiety, Depression and Mood Scale. Behaviour was measured with the Aberrant Behaviour Checklist.
Results
One year after installing dynamic lighting, we did not find a change in interdaily stability. Total sleep time decreased (β = −25.40 min; confidence interval: −10.99, −39.82), and sleep onset time was delayed (β = 25.63 min; confidence interval: 11.18, 40.08). No effect on mood or behaviour was found.
Conclusions
We did not find a change in sleep–wake rhythm, mood or behaviour in older persons with IDs living in care facilities 1 year after installing the light. We did find evidence for a long-term effect on sleep duration and sleep timing. The results have to be interpreted with care as the current study had a limited number of participants. The need for more research on the long-term effects of enhancing environmental light in ID settings is evident.
{"title":"Long-term effects of environmental dynamic lighting on sleep–wake rhythm, mood and behaviour in older adults with intellectual disabilities","authors":"M. N. Böhmer, A. Oppewal, P. J. E. Bindels, E. J. W. van Someren, D. A. M. Festen","doi":"10.1111/jir.13133","DOIUrl":"10.1111/jir.13133","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Sleep–wake problems and depressive symptoms are common in people with intellectual disabilities (IDs) and are thought to be related to the unstable sleep–wake rhythm in this population. Previously, we showed that after increasing environmental light exposure, mid-sleep and sleep onset advanced, and mood improved over a period of 14 weeks after installing environmental dynamic light installations in the living room of people with IDs. We invited participants of that short-term study to take part in the current study on sleep–wake rhythm, mood and behaviour in older adults with IDs 1 year after installing environmental dynamic light installations in the common living rooms of six group homes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A pre–post study was performed from October 2017 to February 2019. We included 45 participants (63.5 ± 8.5 years, 67% female) from six group home facilities who provided data at baseline (9, 4 and 1 weeks prior to installing light installations), short term (3, 7 and 14 weeks after installing light installations) and 1 year (54 weeks after installing light installations). Wrist activity was measured with actigraphy (GENEActiv) to derive the primary outcome of interdaily stability of sleep–wake rhythms as well as sleep estimates. Mood was measured with the Anxiety, Depression and Mood Scale. Behaviour was measured with the Aberrant Behaviour Checklist.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>One year after installing dynamic lighting, we did not find a change in interdaily stability. Total sleep time decreased (<i>β</i> = −25.40 min; confidence interval: −10.99, −39.82), and sleep onset time was delayed (<i>β</i> = 25.63 min; confidence interval: 11.18, 40.08). No effect on mood or behaviour was found.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>We did not find a change in sleep–wake rhythm, mood or behaviour in older persons with IDs living in care facilities 1 year after installing the light. We did find evidence for a long-term effect on sleep duration and sleep timing. The results have to be interpreted with care as the current study had a limited number of participants. The need for more research on the long-term effects of enhancing environmental light in ID settings is evident.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 6","pages":"620-638"},"PeriodicalIF":3.6,"publicationDate":"2024-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13133","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140174976","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}
J. C. Cabrera-Linares, P. Á. Latorre Román, J. A. Párraga Montilla, K. E. Andrade-Lara, F. J. Ruiz-Peralvarez, C. Gutierrez-Cruz
Background
The main objective of this study was to evaluate gait parameters in people with intellectual disability (ID) and without intellectual disability (WID) in two different walking conditions [single task vs. dual task (DT)]. A secondary aim was to evaluate the dual-task cost (DTC) that the DT causes in each group.
Methods
A total of 119 participants joined in this study: 56 ID (30 men) and 63 WID (30 men). The OptoGait system was used to assess gait. In addition, Witty photocells were added to assess gait under the DT condition.
Results
Single support time was lower for participants with ID (P < 0.01), while double support time was higher (P < 0.05). All coefficients of variation for gait parameters were higher in participants with ID. Additionally, changes in gait were observed in both groups during the DT condition compared with the single-task condition. These changes were larger for participants with ID in step length, double support time and gait speed (P < 0.001), resulting in a higher DTC in these variables in the ID group (P < 0.01).
Conclusions
Both groups reduced gait performance in the DT condition. However, greater gait variability occurred in the ID group. In addition, DTC was higher for the ID group in all variables analysed. Therefore, people with ID show worse gait performance during a DT than people WID.
{"title":"Effects of a dual-task activity on gait parameters of people with and without intellectual disabilities","authors":"J. C. Cabrera-Linares, P. Á. Latorre Román, J. A. Párraga Montilla, K. E. Andrade-Lara, F. J. Ruiz-Peralvarez, C. Gutierrez-Cruz","doi":"10.1111/jir.13134","DOIUrl":"10.1111/jir.13134","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The main objective of this study was to evaluate gait parameters in people with intellectual disability (ID) and without intellectual disability (WID) in two different walking conditions [single task vs. dual task (DT)]. A secondary aim was to evaluate the dual-task cost (DTC) that the DT causes in each group.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A total of 119 participants joined in this study: 56 ID (30 men) and 63 WID (30 men). The OptoGait system was used to assess gait. In addition, Witty photocells were added to assess gait under the DT condition.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Single support time was lower for participants with ID (<i>P</i> < 0.01), while double support time was higher (<i>P</i> < 0.05). All coefficients of variation for gait parameters were higher in participants with ID. Additionally, changes in gait were observed in both groups during the DT condition compared with the single-task condition. These changes were larger for participants with ID in step length, double support time and gait speed (<i>P</i> < 0.001), resulting in a higher DTC in these variables in the ID group (<i>P</i> < 0.01).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Both groups reduced gait performance in the DT condition. However, greater gait variability occurred in the ID group. In addition, DTC was higher for the ID group in all variables analysed. Therefore, people with ID show worse gait performance during a DT than people WID.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 6","pages":"610-619"},"PeriodicalIF":3.6,"publicationDate":"2024-03-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13134","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140158334","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}
T. Hilgenkamp, R. Lum, C. Roys, T. Souza, D. Stopka, S. Mann, K.-Y. Ho
Background
Altered gait patterns and reduced walking speed are commonly reported in adults with Down syndrome (DS). Research on the effects of DS-specific exercise programmes on adults with DS is lacking. The purpose of this quasi-experimental study was to evaluate the changes in gait deviations and walking speed in adults with DS after a DS-specific exercise programme.
Methods
Twenty participants underwent a 12-week, DS-specific exercise programme in a telehealth format. Before and after the intervention, gait deviations were assessed with the Ranchos Los Amigos Observational Gait Analysis form, and comfortable walking speed was evaluated with the 4-m walk test.
Results
We observed increased comfortable walking speed and reduced gait deviations in the whole gait cycle in adults with DS after the intervention. There were fewer gait deviations during single-leg stance and swing-limb advancement and at the hip, knee and ankle joints after the 12-week exercise programme.
Conclusions
Gait speed and observable gait impairments in adults with DS significantly improved following a 12-week telehealth exercise programme.
{"title":"Effects of a 12-week telehealth exercise intervention on gait speed and gait deviations in adults with Down syndrome","authors":"T. Hilgenkamp, R. Lum, C. Roys, T. Souza, D. Stopka, S. Mann, K.-Y. Ho","doi":"10.1111/jir.13132","DOIUrl":"10.1111/jir.13132","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Altered gait patterns and reduced walking speed are commonly reported in adults with Down syndrome (DS). Research on the effects of DS-specific exercise programmes on adults with DS is lacking. The purpose of this quasi-experimental study was to evaluate the changes in gait deviations and walking speed in adults with DS after a DS-specific exercise programme.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Twenty participants underwent a 12-week, DS-specific exercise programme in a telehealth format. Before and after the intervention, gait deviations were assessed with the Ranchos Los Amigos Observational Gait Analysis form, and comfortable walking speed was evaluated with the 4-m walk test.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We observed increased comfortable walking speed and reduced gait deviations in the whole gait cycle in adults with DS after the intervention. There were fewer gait deviations during single-leg stance and swing-limb advancement and at the hip, knee and ankle joints after the 12-week exercise programme.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Gait speed and observable gait impairments in adults with DS significantly improved following a 12-week telehealth exercise programme.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 6","pages":"598-609"},"PeriodicalIF":3.6,"publicationDate":"2024-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140119799","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}
Expenditure on residential placements for people with intellectual disability (ID) in Ireland is considerable and expected to increase. Despite this, there is limited evidence on the factors driving variation in privately provided ‘out-of-area’ residential placement costs, including across Community Health Organisations (CHOs)/regions. This is important to help inform the delivery of services at best value.
Methods
We analyse unit cost data from 2019 for a sample of 278 high-cost publicly funded privately provided out-of-area residential placements for people with ID in Ireland. We undertake univariate analysis of the relationship between costs and a wide range of variables using t-tests and one-way analysis of variance. We employ multivariable regression analysis to examine how raw differentials in unit costs across regions can be accounted for by individual-level characteristics.
Results
We estimate average unit costs of €264 170 per annum in our sample. The univariate analysis shows considerable variation in costs across a range of personal, disability, psychiatry/psychological, forensic issues, behaviour and supports and plans related variables. We also find wide variation in average unit costs across CHOs/regions (F = 4.58, P < 0.001), ranging from €213 380 to €331 880. The multivariable analysis shows that regional differences remain even after accounting for a wide range of individual characteristics that influence costs.
Conclusions
Our analysis shows that while the majority of differences in costs across regions can be explained, there is potential for cost savings in the provision of high-cost publicly funded out-of-area residential placements in Ireland. Overall this can help to develop and implement a more sustainable disability residential funding model in a context of rising demand for services. It also has potential implications for the approach to procurement of services.
{"title":"What explains regional variation in privately provided out-of-area residential placement costs for people with intellectual disability in Ireland?","authors":"J. Cullinan, T. O'Brien, E. Yacoub","doi":"10.1111/jir.13129","DOIUrl":"10.1111/jir.13129","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Expenditure on residential placements for people with intellectual disability (ID) in Ireland is considerable and expected to increase. Despite this, there is limited evidence on the factors driving variation in privately provided ‘out-of-area’ residential placement costs, including across Community Health Organisations (CHOs)/regions. This is important to help inform the delivery of services at best value.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We analyse unit cost data from 2019 for a sample of 278 high-cost publicly funded privately provided out-of-area residential placements for people with ID in Ireland. We undertake univariate analysis of the relationship between costs and a wide range of variables using <i>t</i>-tests and one-way analysis of variance. We employ multivariable regression analysis to examine how raw differentials in unit costs across regions can be accounted for by individual-level characteristics.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We estimate average unit costs of €264 170 per annum in our sample. The univariate analysis shows considerable variation in costs across a range of personal, disability, psychiatry/psychological, forensic issues, behaviour and supports and plans related variables. We also find wide variation in average unit costs across CHOs/regions (<i>F</i> = 4.58, <i>P</i> < 0.001), ranging from €213 380 to €331 880. The multivariable analysis shows that regional differences remain even after accounting for a wide range of individual characteristics that influence costs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Our analysis shows that while the majority of differences in costs across regions can be explained, there is potential for cost savings in the provision of high-cost publicly funded out-of-area residential placements in Ireland. Overall this can help to develop and implement a more sustainable disability residential funding model in a context of rising demand for services. It also has potential implications for the approach to procurement of services.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 5","pages":"537-551"},"PeriodicalIF":3.6,"publicationDate":"2024-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13129","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140039504","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}
The study aimed to translate and validate the Prolonged Grief Disorder (PG-13) scale from English into Urdu language. This involved examining its psychometric properties, evaluating its factor structure and assessing both convergent and discriminant validity. The study was conducted within the cultural context of Pakistan and focused on the assessment of manifestations of grief, including symptoms of prolonged grief, in adolescents with mild-to-moderate intellectual disability (ID). The PG-13 scale was selected for this study due to its demonstrated accuracy in measuring prolonged grieving symptoms in bereaved population.
Method
A total of 140 adolescents, aged 10–19 years according to the World Health Organization (WHO) 2018 criteria, were selected from 14 cities in Pakistan. These participants had lost loved ones within the time span of the last 4 years. The WHO (2018) guidelines for translation, adaptation, and validation were followed.
Results
The findings suggest that the translated and validated PG-13 scale has adequate psychometric properties, with Cronbach alpha coefficient of .97. Confirmatory factor analysis supports a single-factor structure for the scale, with factor loadings ranging from .80 to .95.
Conclusion
The PG-13 Urdu version is a reliable and validated scale available for assessing grieving symptoms in the Pakistani context.
{"title":"Translation and validation of prolonged grief disorder (PG-13) scale in Urdu among bereaved adolescents with intellectual disability","authors":"N.-u.-a. Haider, N. I. Zaman","doi":"10.1111/jir.13131","DOIUrl":"10.1111/jir.13131","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The study aimed to translate and validate the Prolonged Grief Disorder (PG-13) scale from English into Urdu language. This involved examining its psychometric properties, evaluating its factor structure and assessing both convergent and discriminant validity. The study was conducted within the cultural context of Pakistan and focused on the assessment of manifestations of grief, including symptoms of prolonged grief, in adolescents with mild-to-moderate intellectual disability (ID). The PG-13 scale was selected for this study due to its demonstrated accuracy in measuring prolonged grieving symptoms in bereaved population.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A total of 140 adolescents, aged 10–19 years according to the World Health Organization (WHO) 2018 criteria, were selected from 14 cities in Pakistan. These participants had lost loved ones within the time span of the last 4 years. The WHO (2018) guidelines for translation, adaptation, and validation were followed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The findings suggest that the translated and validated PG-13 scale has adequate psychometric properties, with Cronbach alpha coefficient of .97. Confirmatory factor analysis supports a single-factor structure for the scale, with factor loadings ranging from .80 to .95.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The PG-13 Urdu version is a reliable and validated scale available for assessing grieving symptoms in the Pakistani context.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 6","pages":"585-597"},"PeriodicalIF":3.6,"publicationDate":"2024-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140039503","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}
D. Rana, S. Westrop, N. Jaiswal, E. Germeni, A. McGarty, L. Ells, P. Lally, M. McEwan, C. Melville, L. Harris, O. Wu
<div> <section> <h3> Background</h3> <p>Adults with intellectual disabilities (IDs) are susceptible to multiple health risk behaviours such as alcohol consumption, smoking, low physical activity, sedentary behaviour and poor diet. Lifestyle modification interventions can prevent or reduce negative health consequences caused by these behaviours. We aim to determine the effectiveness of lifestyle modification interventions and their components in targeting health risk behaviours in adults with IDs.</p> </section> <section> <h3> Methods</h3> <p>A systematic review and meta-analysis were conducted. Electronic databases, clinical trial registries, grey literature and citations of systematic reviews and included studies were searched in January 2021 (updated February 2022). Randomised controlled trials and non-randomised controlled trials targeting alcohol consumption, smoking, low physical activity, sedentary behaviours and poor diet in adults (aged ≥ 18 years) with ID were included. Meta-analysis was conducted at the intervention level (pairwise and network meta-analysis) and the component-level (component network meta-analysis). Studies were coded using Michie's 19-item theory coding scheme and 94-item behaviour change taxonomies. Risk of bias was assessed using the Cochrane Risk of Bias (ROB) Version 2 and Risk of Bias in Non-randomised Studies of Interventions (ROBINS-I). The study involved a patient and public involvement (PPI) group, including people with lived experience, who contributed extensively by shaping the methodology, providing valuable insights in interpreting results and organising of dissemination events.</p> </section> <section> <h3> Results</h3> <p>Our literature search identified 12 180 articles, of which 80 studies with 4805 participants were included in the review. The complexity of lifestyle modification intervention was dismantled by identifying six core components that influenced outcomes. Interventions targeting single or multiple health risk behaviours could have a single or combination of multiple core-components. Interventions (2 RCTS; 4 non-RCTs; 228 participants) targeting alcohol consumption and smoking behaviour were effective but based on limited evidence. Similarly, interventions targeting low physical activity only (16 RCTs; 17 non-RCTs; 1413 participants) or multiple behaviours (low physical activity only, sedentary behaviours and poor diet) (17 RCTs; 24 non-RCTs; 3164 participants) yielded mixed effectiveness in outcomes. Most interventions targeting low physical activity only or multiple behaviours generated positive effects on various outcomes while some interventions led to no change or worsened outcomes, which
{"title":"Lifestyle modification interventions for adults with intellectual disabilities: systematic review and meta-analysis at intervention and component levels","authors":"D. Rana, S. Westrop, N. Jaiswal, E. Germeni, A. McGarty, L. Ells, P. Lally, M. McEwan, C. Melville, L. Harris, O. Wu","doi":"10.1111/jir.13098","DOIUrl":"10.1111/jir.13098","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adults with intellectual disabilities (IDs) are susceptible to multiple health risk behaviours such as alcohol consumption, smoking, low physical activity, sedentary behaviour and poor diet. Lifestyle modification interventions can prevent or reduce negative health consequences caused by these behaviours. We aim to determine the effectiveness of lifestyle modification interventions and their components in targeting health risk behaviours in adults with IDs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A systematic review and meta-analysis were conducted. Electronic databases, clinical trial registries, grey literature and citations of systematic reviews and included studies were searched in January 2021 (updated February 2022). Randomised controlled trials and non-randomised controlled trials targeting alcohol consumption, smoking, low physical activity, sedentary behaviours and poor diet in adults (aged ≥ 18 years) with ID were included. Meta-analysis was conducted at the intervention level (pairwise and network meta-analysis) and the component-level (component network meta-analysis). Studies were coded using Michie's 19-item theory coding scheme and 94-item behaviour change taxonomies. Risk of bias was assessed using the Cochrane Risk of Bias (ROB) Version 2 and Risk of Bias in Non-randomised Studies of Interventions (ROBINS-I). The study involved a patient and public involvement (PPI) group, including people with lived experience, who contributed extensively by shaping the methodology, providing valuable insights in interpreting results and organising of dissemination events.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Our literature search identified 12 180 articles, of which 80 studies with 4805 participants were included in the review. The complexity of lifestyle modification intervention was dismantled by identifying six core components that influenced outcomes. Interventions targeting single or multiple health risk behaviours could have a single or combination of multiple core-components. Interventions (2 RCTS; 4 non-RCTs; 228 participants) targeting alcohol consumption and smoking behaviour were effective but based on limited evidence. Similarly, interventions targeting low physical activity only (16 RCTs; 17 non-RCTs; 1413 participants) or multiple behaviours (low physical activity only, sedentary behaviours and poor diet) (17 RCTs; 24 non-RCTs; 3164 participants) yielded mixed effectiveness in outcomes. Most interventions targeting low physical activity only or multiple behaviours generated positive effects on various outcomes while some interventions led to no change or worsened outcomes, which","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 5","pages":"387-445"},"PeriodicalIF":3.6,"publicationDate":"2024-02-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13098","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139983067","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}
L. Humphreys, C. Bigby, T. Araten-Bergman, T. Iacono
Background
Active Support is a person-centred practice that enables people with intellectual disabilities (IDs) to engage in meaningful activities and social interactions. The Active Support Measure (ASM) is an observational tool designed to measure the quality of support that people with IDs living in supported accommodation services receive from staff. The aim of the study was to explore the underlying constructs of the ASM.
Methods
Multilevel exploratory factor analysis was conducted on ASM data (n = 884 people with IDs across 236 accommodation services) collected during a longitudinal study of Active Support in Australian accommodation services.
Results
Multilevel exploratory factor analysis indicated that 12 of the ASM's 15 items loaded on two factors, named Supporting Engagement in Activities and Interacting with the Person.
Conclusions
The 12-item ASM measures two dimensions of the quality of staff support. Both technical and interpersonal skills comprise good Active Support.
{"title":"Active Support Measure: a multilevel exploratory factor analysis","authors":"L. Humphreys, C. Bigby, T. Araten-Bergman, T. Iacono","doi":"10.1111/jir.13126","DOIUrl":"10.1111/jir.13126","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Active Support is a person-centred practice that enables people with intellectual disabilities (IDs) to engage in meaningful activities and social interactions. The Active Support Measure (ASM) is an observational tool designed to measure the quality of support that people with IDs living in supported accommodation services receive from staff. The aim of the study was to explore the underlying constructs of the ASM.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Multilevel exploratory factor analysis was conducted on ASM data (<i>n</i> = 884 people with IDs across 236 accommodation services) collected during a longitudinal study of Active Support in Australian accommodation services.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Multilevel exploratory factor analysis indicated that 12 of the ASM's 15 items loaded on two factors, named Supporting Engagement in Activities and Interacting with the Person.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The 12-item ASM measures two dimensions of the quality of staff support. Both technical and interpersonal skills comprise good Active Support.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 6","pages":"564-572"},"PeriodicalIF":3.6,"publicationDate":"2024-02-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13126","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139983066","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}
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