What aspects do we overlook in the rehabilitation of patients with inflammatory bowel disease?

In this editorial, we comment on the article by Stafie et al. Inflammatory bowel disease (IBD) constitutes a cluster of chronic and progressive inflammatory disorders affecting the digestive system. IBD can impede an individual's capacity to perform daily activities, hinder work productivity, limit physical capabilities, and negatively impact medical outcomes. Although physical activity and structured exercise programs are becoming increasingly important in many chronic inflammatory diseases, they are not being sufficiently implemented in IBD patients. Effective prevention of future disability and drug dependence in IBD patients requires timely diagnosis and treatment of musculoskeletal problems, including sarcopenia, as well as decreased muscle strength, aerobic capacity, and bone mineral density. To improve treatment outcomes for IBD patients, it is crucial to develop individualized rehabilitation programs tailored to their unique needs. Equally critical is the active participation of pertinent departments in this process. It is imperative to highlight the significance of creating a personalized rehabilitation program with a multidisciplinary approach in IBD management.

Impact of disabilities in activities of daily living on opioid use for chronic pain in older adults: an exploratory secondary analysis from ELSI-Brazil.

OBJECTIVES: Problematic use of opioids by older adults is associated with adverse effects and has become a public health crisis worldwide. Ageing-related disabilities in activities of daily living (ADL) could promote unnecessary use of opioids in this population. This study evaluates the association between ADL disability and opioid consumption in Brazilian older adults. STUDY DESIGN: Study design- cross-sectional secondary data analysis of the second wave of the Brazil Longitudinal Study of Ageing (ELSI-Brazil). METHODS: Data from the second wave of the Brazil Longitudinal Study of Ageing (ELSI-Brazil) were used. Older adults with chronic pain were included. ADL disability was measured using the Katz Index. The primary outcome was opioid consumption for chronic pain. The primary association was explored using logistic regression models adjusting for predetermined confounders. Sensitivity analyses evaluating model performance were done by calibrating and validating the model using randomly split equal sets. RESULTS: In those who reported presence of chronic pain (n = 2865), the prevalence of opioid use was 29% (95% CI:23.1%-35.6%). In adjusted models, participants with moderate and severe ADL disability had 1.6 (95% CI:1.13-2.32; P = 0.009) and 3.8 (95% CI: 1.80-7.90; P < 0.001) times higher odds of opioid consumption compared to no disability, respectively. Being female, alcohol consumption, higher pain intensity, history of dementia, fractures, and presence of ≥2 comorbidities were significantly associated with increased opioid use (P < 0.05). CONCLUSION: Nearly one-third of the Brazilian elderly population experiencing chronic pain reported using opioids. The functional decline during the process of ageing appears to be a risk factor for pain intolerance and opioid use. Multidisciplinary approaches to detect early ADL disabilities and improve mobility and access to assistive technologies need to be established to prevent opioid overuse and addiction in elderly populations.

Retroperitoneal and lower extremities muscle bleeding in acquired haemophilia A (AHA): Risk factors and implications in disability and survival.

AIM: To assess risk factors of retroperitoneal and lower extremity musculoskeletal bleed in acquired haemophilia (AHA) and perform an objective assessment of disability and influence on survival. METHODS: We included 49 patients with AHA from November 2017 to May 2023. The occurrence of any retroperitoneal or/and lower extremities bleeding manifestation was investigated. On clinical follow-up, we search for compressive femoral neuropathy and quadriceps amyotrophy. The lower extremity functional scale (LEFS) was carried out one year after the last bleeding event in all AHA patients. RESULTS: A 61.2% of patients in our AHA cohort presented with any retroperitoneal and/or lower extremities musculoskeletal manifestation. Those patients had higher percentage of major bleeding EACH2/ISTH criteria (90% vs. 57%, p = .01), needs of blood transfusions (86% vs. 57% of patients, p = .03), and haemostatic by-pass products (90% vs. 63%, p = .02). Hypertension (HR 2.6, 95% CI 1.1-5.9, p = .02), presence of autoimmune disease (HR 13, 95% CI 1.7-99, p = .01), and inhibitor level > 20 BU (HR 2.6 95% CI 1.0-6.8, p = .04) significantly predicted retroperitoneal/lower extremities clinical manifestations. Most frequent sequelae were quad atrophy (30.6%) and femoral nerve palsy (20.4%). Quad atrophy and LEFS scores under 50 were associated with increased mortality (HR 3, 95% CI 1.1-8.6 and HR 12, 95% CI 3.3-45, respectively). CONCLUSION: AHA with retroperitoneal/lower extremities bleeding involvement is of greater severity and shows high disability and worst survival outcomes. Quadriceps atrophy and LEFS scale scoring under 50 predicted mortality in our AHA patients.

Headache-related disability as a function of migraine aura: A daily diary study.

OBJECTIVE: To examine the unique role of migraine aura in predicting day-to-day levels of headache-related disability. BACKGROUND: Migraine symptoms and psychological variables contribute to headache-related disability. Migraine aura may be associated with more severe symptom profiles and increased risk of psychiatric comorbidities, but the impact of aura on daily functioning is unknown. The present study sought to evaluate the role of migraine aura in predicting same-day and subsequent-day migraine-related disability while accounting for demographic, headache, and psychological variables. METHODS: This was an observational prospective cohort study among 554 adults with migraine. For each participant, data on migraine symptoms and psychological variables were collected daily for 90 days using the N-1 Headache™ digital app (N = 11,156 total migraine days). Analyses assessed whether the presence of aura predicted daily ratings of migraine-related disability independently of other headache and psychological variables. Given the number of predictors examined, statistical significance was set at p < 0.01. RESULTS: The mean (standard deviation, range) patient-level Migraine Disability Assessment questionnaire score across days of the migraine episode was 1.18 (1.03, 0-3). Aura was significantly associated with higher disability ratings on all days of the migraine episode (odds ratio [OR] 1.40, 99% confidence interval [CI] 1.13-1.74; p < 0.001). This relationship remained unchanged after adjusting for patient-level variables (OR 1.40, 99% CI 1.13-1.73; p < 0.001) and day-level psychological variables (OR 1.39, 99% CI 1.12-1.73; p < 0.001) but was fully negated after controlling for day-level headache variables (OR 1.19, 99% CI 0.95-1.49; p = 0.039). Aura on the first day of the episode was associated with increased odds of allodynia (OR 1.87, 99% CI 1.22-2.86; p < 0.001), phonophobia (OR 1.62, 99% CI 1.17-2.25; p < 0.001), photophobia (OR 1.89, 99% CI 1.37-2.59; p < 0.001), and nausea/vomiting (OR 1.54, 99% CI 1.17-2.02; p < 0.001) on all days of the episode, but not episode duration (p = 0.171), peak severity (p = 0.098), or any examined psychological variables (sleep duration [p = 0.733], sleep quality [p = 0.186], stress [p = 0.110], anxiety [p = 0.102], or sadness [p = 0.743]). CONCLUSION: The presence of aura is predictive of increased headache-related disability during migraine episodes, but this effect is attributable to associated non-pain symptoms of migraine.

Posterior Sacroiliac Fusion Surgery: A Retrospective Single Center Study.

BACKGROUND: Chronic sacroiliitis has variable etiologies with numerous treatments of varying efficacy. In recent years, a novel posterior approach utilizing bone matrix has been developed although to date, there is limited data in the literature regarding efficacy and safety through this approach. Benefits described include reduced adverse outcomes and quicker recovery when compared to the lateral approach. OBJECTIVE: The present investigation focused on sacroiliac joint fusion through the posterior approach and outcomes including disability, pain, and use of analgesics post-surgery. STUDY DESIGN: This retrospective, single-center study was conducted evaluating safety and efficacy of sacroiliac fusion allograft implants (LinQ Implant System from PainTEQ; PsiF System from Omnia Medical). METHODS: A total of 72 posterior approach sacroiliac joint fusions were performed. Fifty-three individuals were enrolled and followed at LSU Health Shreveport as the sole investigational site between August 2020 and June 2024. Selected participant age ranged between 28 and 79 years, with a mean age of 53.4 years. The LinQ Implant System was the primary surgical hardware selected for implantation (83.0%), with the PsiF System chosen in the remaining cases. OUTCOME MEASURES: VAS Scores, disability changes, adverse outcomes, and analgesic use were compared after sacroiliac joint fusion via the posterior approach. RESULTS: Mean VAS Scores for SIJ Pain Intensity significantly decreased by 3.6 cm from a baseline score of 9.5 cm by the Specified End (June 1st, 2024). In this regard, 65.4% of patients experienced a 20% or greater improvement in pain, 38.5% of patients experienced a 50% or greater improvement in pain, and 26.9% of patients experienced a 70% or greater improvement in pain.  Zero (0) procedure-related adverse events nor intra- or post-operative complications occurred throughout the duration of the investigation. LIMITATIONS: Retrospective nature of the study without a control group. Fifty-four percent (39 of 72) completed minimum one year follow up. Further, the withdrawal rate was 26%. CONCLUSION: The results of the present investigation demonstrated effective outcomes with minimal adverse effects and improvements in disability over a three-year period in the largest single center study to date involving posterior approach sacroiliac joint fusion.

A systematic review and pooled analysis of penetrance estimates of copy number variants associated with neurodevelopment.

PURPOSE: Many copy number variants (CNVs) are reported to cause a variety of neurodevelopmental disabilities including intellectual disability, developmental delay, autism and other phenotypes with incomplete penetrance, so not all individuals with a pathogenic CNV are affected. Penetrance estimates vary between studies. A systematic review was conducted to clarify CNV penetrance for 83 recurrent CNVs. METHODS: A systematic review using PRISMA guidelines (PROSPERO #CRD42021253955) was conducted to identify penetrance estimates for CNVs associated with neurodevelopment. Pooled analysis was performed using forest plots. The Ottawa Risk of Bias Assessment facilitated evaluation. RESULTS: Fifteen studies were reviewed in detail with nine affected cohorts pooled and compared against the gnomAD v4.0 CNV control cohort of 269,885 individuals. Several CNVs previously associated with non-statistically significant penetrance estimates now exhibit statistically significant differences, contributing to emerging evidence for their pathogenicity (15q24 duplication [A-D breakpoints], 15q24.2q24.5 deletion and duplication (FBXO22), 17q11.2 duplication (NF1), 17q21.31 duplication (KANSL1) and 22q11.2 distal duplication). Additionally, evidence is presented for the benign nature of some CNVs (15q11.2 duplication (NIPA1) and 2q13 proximal duplication (NPHP1)). CONCLUSION: This is a large-scale systematic review of CNVs associated with neurodevelopment. A synopsis analysing penetrance and pathogenicity is provided for each of the 83 recurrent CNVs.

Linking Multi-Dimensional Religiosity in Childhood and Later Adulthood: Implications for Later Life Health.

This study examines religiosity patterns across childhood and later adulthood and their associations with later-life health using an experimental module from the 2016 Health and Retirement Study (N = 1649; Mean Age = 64.0). Latent class analysis is used to categorize individuals by commonalities in religious attendance, religious identity, and spiritual identity. Cross-sectional and longitudinal associations are then explored using probable depression, disability, and mortality as health indicators. Results reveal complex patterns, often characterized by declining attendance and fluctuating identity. Relationships with health appear stronger in cross-sectional analyses, suggesting that some associations may be non-causal. Individuals with consistently strong religiosity show significantly better psychological health compared to their relatively non-religious counterparts. Moreover, the absence of religiosity in later adulthood is associated with an increased risk of mortality. Overall, the findings support the promotion of religiosity whilst acknowledging individual variations and highlighting the need for more individualistic approaches to the study of religion and health.

The home literacy environment of school-age autistic children with high support needs.

BACKGROUND: As a group, autistic children with high support needs (with adaptive functioning in the range of an intellectual disability) are at risk of significant literacy difficulties. We investigated the parent-reported home literacy environment of this group of children. METHOD: Sixty-two parents of autistic children (4.5 to 18.25 years) attending an autism-specific school completed a home literacy survey reporting on their child's: (1) alphabet knowledge, (2) interest in reading, (3) activities/interactions around books, (4) reading ability, and (5) writing ability. RESULTS: We found significant positive correlations between parent-reported child interest in reading and literacy-related interactions and skills, but not with child age. Children using spoken words to communicate obtained significantly greater scores on four home-literacy subscales, but not on reading interest. CONCLUSIONS: A better understanding of the home literacy activities of autistic children with high-support needs is needed to inform educational practices aimed at promoting literacy development in this vulnerable population.

Effects of Texas State Agency Integration on Mental Health Service Use Among Individuals with Co-occurring Cognitive Disabilities and Mental Health Conditions.

This study uses Texas's 2017 integration of the state disability and mental health agencies as a case study, combining interviews with Texas agency and advocacy organization leaders to examine perceptions of agency integration and augmented synthetic control analyses of 2014-2020 Medical Expenditure Panel Survey to examine impacts on mental health service use among individuals with co-occurring cognitive disabilities (including intellectual and developmental disabilities) and mental health conditions. Interviewees described the intensive process of agency integration and identified primarily positive (e.g., decreased administrative burden) impacts of integration. Quantitative analyses indicated no effects of integration on receipt of mental health-related services among people with co-occurring conditions. While leaders identified some potentially beneficial impacts of state agency integration, the limited impact of integration beyond the agency suggests that interventions at multiple levels of the service system, including those targeting providers, are needed to better meet the mental health service needs for this population.

Mortality trends in people with disabilities before and during the COVID-19 pandemic in South Korea, 2017-2022.

Objective: To investigate temporal trends in mortality rates and underlying causes of death in persons with disabilities before and during the coronavirus disease 2019 (COVID-19) pandemic. Methods: Annual mortality rates and causes of death were analyzed using data covering the 2017-2022 period. Results: The mortality rate among people with disabilities increased from 2017 to 2022; the rate was five times higher during COVID-19 in this population than in the general population. When analyzing the cause of death, the incidence of infectious diseases and tuberculosis decreased after COVID-19. In contrast, the incidence of other bacillary disorders (A30-A49) increased. The incidence of respiratory system diseases (J00-J99), influenza and pneumonia (J09-J18), and other acute lower respiratory infections (J20-J22) decreased before COVID-19, while the incidence of lung diseases due to external agents (J60-J70), other respiratory diseases principally affecting the interstitium (J80-J84), and other diseases of the pleura (J90-J94) increased during the pandemic. The risk of COVID-19 death among people with disabilities was 1.1-fold higher for female patients (95% CI = 1.06-1.142), 1.41-fold for patients aged 70 years and older (95% CI = 1.09-1.82), and 1.24-fold higher for people with severe disabilities (95% CI = 1.19-1.28). Conclusions: The mortality rate in people with disabilities significantly increased during COVID-19, compared with that before the pandemic. People with disabilities had a higher mortality rate during COVID-19 compared with the general population. Risk factors must be reduced to prevent high mortality rates in this population.

Diagnosis of common health conditions among autistic adults in the UK: evidence from a matched cohort study.

Background: Autistic people are disproportionately likely to experience premature mortality and most mental and physical health conditions. We measured the incidence of diagnosed conditions accounting for the most disability-adjusted life years in the UK population according to the Global Burden of Disease study (anxiety, depression, self-harm, harmful alcohol use, substance use, migraine, neck or back pain, and gynaecological conditions). Methods: Participants were aged 18 years or above and had an autism diagnosis recorded in the IQVIA Medical Research Database between 01/01/2000 and 16/01/2019. We included 15,675 autistic adults without intellectual disability, 6437 autistic adults with intellectual disability, and a comparison group matched (1:10) by age, sex, and primary care practice. We estimated crude incidences and incidence rate ratios (IRRs) adjusted for age and sex. Findings: Autistic adults without intellectual disability experienced a higher incidence (IRR, 95% CI) of self-harm (2.07, 1.79-2.40), anxiety (1.91, 1.76-2.06), depressive disorders (1.79, 1.67-1.92), and substance use (1.24, 1.02-1.51) relative to comparison participants. Incidences of harmful alcohol use (1.01, 0.85-1.18), migraine (0.99, 0.84-1.17), and gynaecological conditions (1.19, 0.95-1.49) did not differ. Neck or back pain incidence was lower (0.88, 0.82-0.95). Autistic adults with intellectual disability experienced a higher incidence of self-harm (2.08, 1.69-2.56). Incidences of anxiety (1.14, 1.00-1.30), gynaecological conditions (1.22, 0.93-1.62), and substance use (1.08, 0.80-1.47) did not differ, and lower incidences were found for depressive disorders (0.73, 0.64-0.83), harmful alcohol use (0.65, 0.50-0.84), migraine (0.55, 0.42-0.74), and neck or back pain (0.49, 0.44-0.55). Interpretation: Although our findings cannot be directly compared to previous prevalence studies, they contrast with the higher frequency of mental and physical health conditions in autistic adults reported in studies that directly assessed and/or surveyed autistic people about co-occurring conditions. The present findings may suggest under-diagnosis of common conditions in autistic people, particularly those with intellectual disability. Improved detection should be a clinical and policy priority to reduce health inequalities. Funding: Dunhill Medical Trust, Economic and Social Research Council, National Institute of Health and Care Research.

"Pain is not typically taken into consideration due to him being nonverbal"- emergency department experiences among persons with disabilities: a mixed methods study in Kingston, Ontario.

Background: Persons with disabilities (PWD) are more likely to visit the emergency department (ED) and often have complex health needs when accessing care in the ED. Yet there is limited understanding of ED care experiences among PWD, especially in a Canadian context. The aim of this study was to examine the ED care experiences of PWD in contrast to a comparison group in Kingston, Ontario to better understand their health care needs. Methods: A mixed-methods study with a community-based participatory approach examining participants' past ED care experiences (within 24 months) was conducted in Kingston, ON. Quantitative data from those with disabilities and those from the comparison group were compared using chi squared tests to identify differences between groups. An inductive and deductive thematic analysis approach was used to identify themes in the shared qualitative data. Convergence of findings across quantitative and qualitative data was undertaken. Results: A total of 175 participants identified as having a disability. In contrast with the comparison group (N = 949), PWD were more likely to report being given too little attention to their needs (p < 0.001), that it was more important to be treated with kindness/respect than to receive the best possible medical care (p < 0.001), to report feelings of disrespect and/or judgement (p < 0.001), and that better understanding of personal identity/situation/culture and better communication would improve ED care. Qualitative analysis highlighted the following themes: poor communication between PWD and health care providers (HCP), compassionate medical care received, perceived HCP negative attitudes/beliefs related to having a disability and substance misuse, and perceived HCP lack of knowledge/skill to treat the unique health needs of PWD. Conclusion: Findings highlight the need to improve ED care for PWD. Future quality improvement initiatives should focus on incorporating a deeper understanding of disability into medical education and emergency medicine (EM) residency education, designing curricula that emphasize cultural humility, and implementing community-based placements providing opportunities for health professionals to work with and learn from PWD.

Comparing Relationships Between Pain Coping Levels and Pain, Functional Capacity, and Disability Among Patients with Fibromyalgia and Healthy Controls.

We compared the relationships between pain coping levels and pain, functional capacity, and disability among 48 patients with fibromyalgia and 48 healthy control participants. Specific characteristics of those diagnosed with fibromyalgia syndrome were documented. Participants were evaluated with the Visual Analog Scale (VAS), Pain Coping Scale (PCQ), Pain Disability Index (PDI), and Fibromyalgia Impact Questionnaire (FIQ). According to the 10 cm long VAS, fibromyalgia patients recorded pain intensity at 7 cm, significantly higher than in the control group (p < .001). All sub-scores of the PDI score were higher among patients with fibromyalgia compared to controls (p < .001). Scores on the PCQ score were higher for patients with fibromyalgia than controls on the sub-parameters of helplessness (p < .001) and medical remedies (p < .001). Functionality was lower among patients than controls (p < .001). Pain coping and pain-related disability (in areas of recreation, social activity, sexual behavior, total score) were significantly related in patients with fibromyalgia. These findings underscore the importance of comprehensive pain management and customized interventions for fibromyalgia patients to address their elevated pain intensity, reduced functionality, increased pain-related disability, and variable coping mechanisms compared to healthy controls. Understanding these correlations between pain coping strategies, functional status, and disability levels can help optimize treatment approaches and improve the quality of life for individuals living with fibromyalgia.

Drive away neck pain: Transformative motor control therapeutic neck exercises and tailored programs redefine posture for automotive workers.

BACKGROUND: Neck discomfort, arising from strained muscles, poor posture, accidents, or underlying medical conditions, significantly impacts daily activities and overall well-being, presenting a substantial healthcare challenge. OBJECTIVE: This study aims to evaluate the efficacy of motor control therapeutic neck exercise and a Structured Exercise Program on neck pain and posture among automobile industrial workers. METHODS: Using a lottery technique, 106 participants aged 20 to 45 were selected from the vicinity of Chennai's auto industries based on predetermined eligibility and exclusion criteria. Subsequently, participants were randomly assigned to either the motor control therapeutic neck exercise group or the structured exercise program group, each comprising 53 individuals. Participants received a comprehensive overview of the study and respective interventions, and their informed consent was obtained. Demographic details, Neck Injury and Disability scores, and Assessment of Postural and Ergonomic Characteristics data were then collected. RESULTS: Statistical analysis revealed a significant difference between the groups, with the Motor Control Therapeutic Neck Exercise group demonstrating superior outcomes in reducing pain and improving posture, with p-values less than 0.001. CONCLUSIONS: This study highlights the efficacy of Motor Control Therapeutic Neck Exercise over Structured Exercise in improving neck pain and posture among automobile industrial workers. These findings contribute valuable insights for the development of targeted interventions in occupational health settings.

Revisiting unstable disability and the fluctuations of frailty: a measurement burst approach.

BACKGROUND: It has been hypothesised that frailty is the root cause of clinically observed but rarely systematically measured unstable disability among older adults. In this study, we measure the extent of short-term disability fluctuations and estimate their association with frailty using intensive longitudinal data. METHODS: Repeated measurements of disability were collected under a measurement burst design in the FRequent health Assessment In Later life (FRAIL70+) study. A total of 426 community-dwelling older adults (70+) in Austria were interviewed about difficulties with basic, instrumental and mobility-related activities of daily living biweekly up to a total of 14 times in two measurement bursts (2891 and 2192 observations). Baseline frailty was assessed with both physical frailty (FP) and the frailty index (FI). Disability fluctuations were measured with the intra-individual interquartile range (iIQR) and estimated with a two-step generalised mixed regression procedure. RESULTS: Fewer participants were frail at baseline according to FP (11%) than FI (32%). Frail study participants reported not only more severe disability but also had more short-term disability fluctuations (iIQR = 1.0-1.5) compared with their robust counterparts (iIQR = 0). Regression models indicated that baseline frailty was associated with 2-3 times larger short-term disability fluctuations, which were also more prevalent among women, and increased with age and disability severity. CONCLUSION: Compared with those who were robust, frail older adults were characterised by not only more severe but also more unstable disability. Short-term disability fluctuations are closely tied to disability severity. Future studies should assess both stressors that may cause disability fluctuations among frail older adults as well as their potential consequences to inform frailty-centred care.

The All Together Group: Co-Designing a Toolkit of Approaches and Resources for End-of-Life Care Planning With People With Intellectual Disabilities in Social Care Settings.

INTRODUCTION: Support staff within social care settings have expressed a need for resources to facilitate end-of-life care planning with people with intellectual disabilities. This study aimed to co-design a preliminary toolkit of end-of-life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. METHODS: An adapted Experience-Based Co-Design process was applied to develop a toolkit for end-of-life care planning with people with intellectual disabilities. A co-design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co-facilitated the workshops), five family members, five intellectual disability support staff, two intellectual disability service managers, and five healthcare professionals. RESULTS: The All Together Group tested resources for and approaches to end-of-life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy-read end-of-life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation-starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end-of-life care planning with people with intellectual disabilities. CONCLUSION: Through an iterative, flexible, inclusive, and comprehensive co-design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end-of-life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. PATIENT OR PUBLIC CONTRIBUTION: The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.-B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co-design group as well. Two of these representatives were also co-applicants in the overall project (N.P. and S.S.). The co-design group included people with intellectual disabilities, families, intellectual disability support staff and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations, and policymakers.

Impact of dietary risk on global ischemic heart disease: findings from 1990-2019.

Ischemic heart disease (IHD) is a condition in which the heart is starved of oxygen. Knowing the dietary risk factors implementing appropriate nutritional interventions in this regard seems essential. Therefore, the present study was carried out to determine the epidemiological features of IHD affected by dietary risks. This study used data from the Global Burden of Disease (GBD) study. In this study, we collected information on death, years lived with disability (YLD), and disability-adjusted life years (DALYs) of IHD affected by dietary risks in one hundred thousand people with 95% confidence based on the direct Age Standard Rate (ASR). We applied these data based on the Socio-demographic Index (SDI). In 2019, the number of IHD deaths, YLDs, and DALYs attributable to dietary risks was 62.43 million (95% UI [50.97-73.63] per 100,000 population), 36.88 (95% UI [23.87-53.32] per 100,000 population), and 1271.32 (95% UI [1061.29-1473.75] per 100,000 population), respectively. We found that the lowest DALYs of IHD affected by dietary risks by ASR are for high SDI countries. Most dietary risk factors related to IHD in countries with high and high middle SDI were related to a diet high in red and processed meat, sodium, and low in legumes, but in countries with low and low middle SDI, it was related to a diet low in fiber, fruit, nuts and seeds, PUFA, seafood W3 fatty acids, vegetables and whole grain. Considering that the dietary risk factors related to IHD are different based on SDI, it is necessary to consider nutritional interventions according to SDI.

Performance of a Tic Screening Tool (MOVeIT) in Comparison to Expert Clinician Assessment in a Developmental-Behavioral Pediatrics Clinic Sample.

Youth with intellectual and developmental disabilities typically have higher rates of tics and stereotypies compared to children with otherwise typical development. Differentiating between these two pediatric movement disorders can be challenging due to overlapping clinical features, but is relevant due to distinct treatment modalities. The current study evaluated sensitivity and specificity of a tic screening measure, the Motor or Vocal Inventory of Tics (MOVeIT) in a pediatric sample enriched for stereotypy and tics. Children (n=199, age 2-15 years old) receiving care in a developmental-behavioral pediatrics clinic underwent a gold-standard diagnostic assessment by a tic expert; these evaluations were compared to the MOVeIT. The MOVeIT demonstrated good sensitivity (89.8%) and relatively lower specificity (57.1%) compared to tic expert for detecting tics in the overall sample. Specificity of the MOVeIT to identify tics improved to 75% when excluding children with co-occurring stereotypy. For children with tics and co-occurring stereotypy, sensitivity remained high (91.9%) but specificity was low (39.1%). The area under the curve (AUC) value to detect tics on the MOVeIT compared to the tic expert gold standard was significantly higher for children without stereotypy (AUC=85.7%) than those with stereotypy (AUC=64.3%, p <0.01). Overall, the ability to detect tics was better in those without co-occurring stereotypy symptoms. Further work is needed to establish the utility of the MOVeIT in populations where there is a high likelihood of co-occurring tics and stereotypy and in general population settings. Accurate distinction between tics and stereotypy will guide choices for intervention and anticipatory guidance for families.

Oral hygiene changes & compliance with telemonitoring device in individuals with intellectual/developmental disabilities: a randomized controlled crossover trial.

OBJECTIVE: Advances in mobile technology are helping with health management practices, and smart toothbrushes provide proper dental care by collecting and analyzing users' toothbrushing data. The purpose of this study is to assess the effect of a telemonitoring device on oral hygiene management in individuals with intellectual or developmental disabilities and its role in promoting oral health. MATERIALS AND METHODS: Participants were split into two groups: one initially using the telemonitoring device (telemonitoring device/manual toothbrush) and the other using it later (manual toothbrush/telemonitoring device), with a one-month washout period. The study compared plaque index, halitosis, changes in oral microbiota, and guardian questionnaire responses between the groups. RESULTS: In period 1, the QHI index score significantly decreased from 1.93 to 0.83 in the group using the remote monitoring device, compared to an increase from 1.75 to 2.01 in the manual toothbrush group. Additionally, toothbrushing frequency, time, and cooperation increased by 0.82 ± 0.60, 0.82 ± 1.16, and 1.09 ± 0.94, respectively, with initial telemonitoring device use. However, these measures decreased by -1.45 ± 0.68, -1.09 ± 0.70, and - 1.00 ± 1.00 after switching to a manual toothbrush, and decreased by -0.64 ± 0.67, -0.27 ± 1.19, and 0.09 ± 0.94 overall, respectively. However, there were no significant differences in oral microbiota between the groups at these different time points. CONCLUSIONS: The study shows that telemonitoring devices effectively reduce plaque index and improve toothbrushing frequency, time, and cooperation. However, these benefits decrease after switching to a manual toothbrush. Follow-up is needed to assess satisfaction and compliance with telemonitoring device use. CLINICAL RELEVANCE: Using telemonitoring devices in the oral health management of individuals with intellectual and developmental disabilities can improve their oral health quality.

Requirements for and Barriers to Rehabilitation Services for Children With Disabilities in Middle- and High-Income Countries: Scoping Review.

BACKGROUND: The rehabilitation of children with disabilities has received considerable attention from the United Nations. However, the state of rehabilitation services for children with disabilities worldwide remains far from optimistic, even in economically affluent middle- and high-income countries. OBJECTIVE: This scoping review aimed to identify the rehabilitation needs of children with disabilities and their barriers to rehabilitation services in middle- and high-income countries. METHODS: A systematic search was conducted using MEDLINE and Web of Science for papers published from January 2013 to December 2023. Studies were included if they were peer-reviewed, full-text articles related to children with disabilities, reporting on their access to rehabilitation services, and conducted in countries classified by the World Bank 2023 as middle- and high-income economies. Exclusion criteria included duplicates, unavailable full texts, and studies without distinct outcomes. A total of 27 studies were selected following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, focusing on children, their families, or service providers. RESULTS: The suitability, availability, and affordability of rehabilitation services were identified as the major needs and barriers for children with disabilities in middle- and high-income countries. This included communication barriers, a need for more personnel and facilities, and the stagnation and inadequacy of economic subsidies. CONCLUSIONS: Middle- and high-income countries have relatively well-established rehabilitation infrastructure and support systems. They are nevertheless insufficient for meeting the needs of children with disabilities. More attention should be paid to these issues to improve the well-being of children with disabilities. The data provided by this review can help raise awareness of rehabilitation needs and barriers at the policy level.