UNASSIGNED: Post-pandemic, use of digital technologies (e.g., mobile app, Zoom, virtual reality, and videogaming) to promote physical activity (PA) in populations with intellectual and developmental disabilities (IDD) has increased. The efficacy of various digital technologies in promoting PA in individuals with IDD varies. We conducted a systematic review to examine current literature findings on the efficacy of digital PA interventions on PA outcomes in individuals with IDD.
UNASSIGNED: Articles published between 1900 and 2024 that examined effects of technology-based PA interventions on PA levels/fitness of individuals with IDD using experimental or quasi-experimental study designs were included. Sixteen articles were retrieved from four health databases PubMed (914), PsycInfo (1201), SCOPUS (1910), and CINAHL (948).
UNASSIGNED: Findings based on 604 participants (Autism: 383; Down Syndrome: 106; Developmental Disability: 83, Developmental Coordination Disorder: 37) provide the most support for exergaming/digital PA intervention benefits for populations with ID, Down Syndrome, and Autism; however, there was limited support for its use in those without ID (e.g., DCD).
UNASSIGNED: Digital technology is an effective tool to promote improvements in PA/fitness, motor, cardiovascular performance in individuals with ID. Future studies need to build on this evidence to support the use of PA outcomes in individuals with different IDD diagnoses.
Individuals with intellectual and developmental disabilities (IDD) are more physically inactive compared to peers without IDD.Exercise and physical activity are effective modalities to improve health and well-being of individuals with IDD.Exergaming/digital technologies are a promising option to promote physical activity in individuals with IDD, specifically, in children with Down Syndrome and Autism Spectrum Disorder.This is the first review comparing effects of exergaming/digital technologies on physical activity outcomes of individuals with and without intellectual disabilities.

The field of disabilities is being challenged to adopt a paradigm that can be used to guide the transformation of services, supports, and research practices to ensure and enhance the personal autonomy, rights, and community inclusion of people with disabilities. This article describes strategies associated with the systematic diffusion and sustainability of an innovation such as the emerging Shared Citizenship Paradigm (SCP), which has the potential to guide the transformation. The systematic diffusion process incorporates five components: knowledge, persuasion, decision, implementation, and confirmation. The systematic process also addresses the risks of dissonance, backlash, unintended consequences, and backsliding that can emerge when the sustainability of a paradigm is not supported. Throughout the article, we stress that meaningful change in organizations and systems requires use of a paradigm such as the SCP and its principles and foundation pillars to guide the change, and a systematic process such as that described in this article to bring about and sustain the change.

UNASSIGNED: There is increased focus on the negative impact of the overprescribing of medication, specifically psychotropic medication, including anti-seizure medications (ASM), in people with Intellectual Disability (ID). This is particularly important for the older adult population, where multi-morbidity and polypharmacy are more common. ASMs are associated with psychiatric and behavioral adverse effects. Furthermore, there is growing awareness of the anticholinergic burden for older adults with epilepsy and ID and the relationship with behaviors that challenge (BtC).
UNASSIGNED: This review defines the older adult population and outlines the relationship between epilepsy and ID. BtC is outlined in the context of the population and the relationship with ASMs. The evidence base to guide prescribing and de-prescribing for newer ASMs is also presented, including pragmatic data.
UNASSIGNED: Polypharmacy, particularly psychotropics, are a mortality risk factor for older adults with epilepsy and ID. Therefore, any BtC requires a holistic assessment with a multi-disciplinary approach. This includes specific consideration of all prescribed medicines in the context of polypharmacy. There should be routine reviews, at least annually, for those aged 40 years and over particularly focused on anticholinergic burden and/or polypharmacy.

BACKGROUND: The purpose of this scoping review was to systematically synthesize barriers and facilitators for physical activity (PA) among children and youth with autism spectrum disorders (ASD) across the socioecological model.
METHODS: Five electronic databases were searched in March 2022 for studies examining barriers and facilitators for PA among children and youth with ASD. An updated search was performed in April 2024. The framework synthesis method was utilized, and the socioecological model was the chosen framework.
RESULTS: Fifty-four studies published from 2008 to 2024 were included. Among the included studies, 57% included the perspectives of children and youth with ASD alone or together with proxies (eg, parents, teachers, and coaches), while 43% included only the perspectives of proxies. Barriers and facilitators on the intrapersonal and interpersonal levels were most substantial. The analysis led to 2 main categories of barriers and facilitators, those unique to children and youth with ASD, and those similar to what had been identified through research on children and youth, both typically developing and with other disabilities.
CONCLUSIONS: This comprehensive scoping review shows the complexity of factors contributing to barriers and facilitators for PA among children and youth with ASD, and highlights both the factors unique to this population and more general factors affecting PA participation. The findings from this synthesis might be used to guide the development of inclusive PA in physical education, organized sports, and other community PA arenas.

OBJECTIVE: PCDH19 gene variants, termed PCDH19 clustering epilepsy, represent a distinct etiology of epilepsy. This study aimed to elucidate the clinical manifestations and explore the genotypes and phenotypes of children affected by PCDH19 clustering epilepsy.
METHODS: This retrospective study included medical history, magnetic resonance imaging, video-electroencephalography, and genetic analysis of patients diagnosed with PCDH19 Clustering Epilepsy at the Neurology Department of Beijing Children\'s Hospital from 2015 to 2023. Chi-square tests and logistic regression analyses were conducted to study the factors associated with developmental delay in patients.
RESULTS: The age at seizure onset ranged from 5 to 61 months among all 30 patients (median 14 months; IQR 9.25-22.5 months). Among the 30 patients, 29 were female and 1 was male. Clusters of seizures and fever-triggered seizures were observed, with the most prevalent seizure types being focal to bilateral tonic-clonic seizures (FBTCS). Seizures were successfully controlled in 15 patients. Unfortunately, one patient experienced a sudden unexpected death in epilepsy (SUDEP). Additionally, 14 patients had hereditary mutations, 14 had de novo mutations, 1 had both hereditary and de novo mutations, and 1 male patient had a mosaic component mutation of 0.64 due to a somatic mutation. Developmental delays were identified in 17 patients (56.7 %), and 6 patients (20 %) were diagnosed with autism spectrum disorder (ASD). Among the 17 patients, 9 experienced developmental delays before the onset of epilepsy, while 8 were initially normal but later developed developmental delays during disease progression. Statistical analysis revealed that the presence of drug-resistant epilepsy was an independent risk factor for the occurrence of developmental delays (P = 0.020, OR = 9.758, 95 % CI (1.440-66.111)).
CONCLUSIONS: In this study, 13 new potential rare pathogenic variations in PCDH19 clustering epilepsy were identified. The clinical features observed in patients are consistent with known phenotypic features, and we found that patients with drug-resistant epilepsy are more likely to have developmental delays. The severity of the phenotype in patients with PCDH19 variants ranged from drug-responsive seizures to refractory epilepsy.

BACKGROUND: Individuals with intellectual disabilities experience barriers to quality healthcare. To reduce this disparity, equipping medical trainees with the knowledge and skills required for treating this patient population is critical. Our aim is to describe the breadth of instructional interventions and identify gaps in intellectual disability medical education curricula.
METHODS: Using scoping review methods, the intellectual disability programmes described in 27 articles were evaluated and their coverage of the six core competencies on disability for health care education was examined.
RESULTS: The most frequently represented core competencies were disability conceptual frameworks, professionalism and communication, and clinical assessment, which were, in most programmes, fulfilled by activities involving individuals with intellectual disabilities. Uneven competency coverage warrants consideration.
CONCLUSIONS: Considerable variabilities exist in medical school curricula on intellectual disabilities. Using core competencies on disability for health care education for curricular design and evaluation would provide a coherent training experience in this important area.

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.
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.
CONCLUSIONS: Using telemonitoring devices in the oral health management of individuals with intellectual and developmental disabilities can improve their oral health quality.

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.

UNASSIGNED: To elicit experiences of parents of children with neurodevelopmental conditions using a new perioperative pathway.
UNASSIGNED: Parents of children accessing an adapted perioperative clinical pathway in a tertiary children\'s hospital between July 2019 and December 2020 were invited to participate. A mixed method study was conducted comprising a short survey questionnaire followed by telephonic interviews.
UNASSIGNED: From 67 postal surveys sent out, 20 were completed. Six out of 20 parents participated in phone interviews and one parent submitted written prose. Parents were positive about their experiences. Six themes emerged: Negative past experiences (highlighting the need for adapted perioperative pathways); Reasonable adjustments (improving child and parent\'s hospital journey); Facilitating communication, convenience and collaboration; Parent\'s satisfaction and relief; Barriers to overcome and Areas in need of improvement were discussed.
UNASSIGNED: Parents of children with neurodevelopmental conditions report great satisfaction and relief from their experiences of a more efficient, streamlined and stress-free way for their child to have tests or procedures done. Parents report improved communication, convenience and collaboration with staff resulted in timely, safe and high-quality care.

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.