Zhang Panpan , Liu Yang , Ma Tao , Tian Chong , Cao Fan , Sun Hao , Xiao Xuwu
{"title":"Effect of comorbid allergic diseases on attention-deficit hyperactivity disorder symptoms and sleep: A cross-sectional study","authors":"Zhang Panpan , Liu Yang , Ma Tao , Tian Chong , Cao Fan , Sun Hao , Xiao Xuwu","doi":"10.1016/j.ridd.2024.104907","DOIUrl":"10.1016/j.ridd.2024.104907","url":null,"abstract":"<div><h3>Introduction</h3><div>Recent studies have shown a close relationship between attention-deficit hyperactivity disorder (ADHD) and allergic diseases in children. Regrettably, few studies have investigated the effect of comorbid allergies on ADHD symptoms and sleep, in particular, it is unclear whether comorbid allergic conditions further exacerbate sleep problems in children with ADHD.</div></div><div><h3>Objective</h3><div>To investigate the effect of comorbid allergic on symptoms and sleep in children with ADHD.</div></div><div><h3>Methods</h3><div>This was a cross-sectional study, 222 ADHD children (aged 6–14 years) were enrolled in, of whom 93 had allergic diseases and 129 without allergic diseases. Collected all ADHD symptom severity and functional impairment scales, including: Swanson, Nolan and Pelham (SNAP) scale, Integrated Visual and Auditory Continuous Performance Test (IVA-CPT), Conners Parents Symptom questionnaire (PSQ) and Weiss Functional Impairment Rating Scale-Parent Form (WFIRS-P). Every guardian of children diagnosed with ADHD is required to complete the Children’s Sleep Habits Questionnaire (CSHQ).</div></div><div><h3>Results</h3><div>Compared to ADHD children without allergic diseases, we observed significantly higher hyperactivity and impulsivity scores on the SNAP-IV, higher hyperactivity index and impulsivity index on the PSQ, and higher risky activities on the WFIRS-P in ADHD children with comorbid allergic diseases (all <em>p</em> < 0.05). CSHQ total score and sleep disordered breathing were particularly prominent in ADHD children with comorbid allergic diseases (all <em>p</em> < 0.05), and changes in CSHQ correlate with ADHD symptoms and functional impairment. Further analyses revealed that ADHD symptoms and sleep did not worsen with increasing number of comorbid allergic diseases (all <em>p</em> > 0.05). The primary influence on ADHD symptoms and sleep was the type of allergic diseases, where food allergies predominantly influence ADHD symptoms, including attention deficit disorder and hyperactivity disorder (all <em>p</em> < 0.05); allergic rhinitis notably impacts parasomnias, sleep disordered breathing (all <em>p</em> < 0.05); and allergic asthma significantly affects sleep anxiety, daytime sleepiness, and sleep disordered breathing in children with ADHD (all <em>p</em> < 0.05).</div></div><div><h3>Conclusion</h3><div>The presence of comorbid allergic diseases affects both the hyperactivity and impulsivity symptoms of ADHD and sleep disordered breathing, predominantly influenced by the type of the allergic diseases.</div></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"157 ","pages":"Article 104907"},"PeriodicalIF":2.9,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142966607","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Bedouin fathers of children with developmental disabilities—Stress, stigma and collaboration with professionals","authors":"I. Manor-Binyamini","doi":"10.1016/j.ridd.2024.104902","DOIUrl":"10.1016/j.ridd.2024.104902","url":null,"abstract":"<div><h3>Background</h3><div>Research has not fully elucidated the challenges experienced by the caregivers of children with developmental disabilities (DDs) in different sociocultural contexts. Studies on parents, especially fathers, of children with DDs in the Middle East are especially rare. Similarly, the subject of collaboration between Bedouin fathers and professionals has seen little research. This study fills these gaps by highlighting the experiences of Bedouin fathers raising children with DDs.</div></div><div><h3>Aims</h3><div>This study answered the following questions: A) Do stigma and stress affect the collaboration between Bedouin fathers and professionals? B) Do relationships exist between stigma, stress and collaboration?</div></div><div><h3>Methods</h3><div>Eighty-eight Bedouin fathers of children with DDs completed questionnaires on sociodemographic details, stigma, stress and collaboration between parents and professionals. Data were analysed using Pearson correlations, a correlation matrix and hierarchical linear regression.</div></div><div><h3>Results</h3><div>The findings revealed a significant positive relationship between stigma and stress, a significant negative relationship between stigma and collaboration and a significant negative relationship between stress and collaboration. Three demographic characteristics were associated with greater influence on fathers’ collaboration with professionals: 1) comorbidity in s child’s diagnosis, 2) age of DD diagnosis and 3) father’s age.</div></div><div><h3>Conclusions and implications</h3><div>The findings emphasise the need to develop tailored intervention programmes to assist fathers in reducing their sense of stigma and stress and in increasing their competence in collaborating with professionals.</div></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"157 ","pages":"Article 104902"},"PeriodicalIF":2.9,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142928568","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}
Elizabeth S.M. Chan , Cathrin D. Green , Melissa R. Dvorsky , Amanda H. Steinberg , Stephen P. Becker , Joshua M. Langberg
{"title":"What dimensions of school climate promote adaptive functioning in adolescents with ADHD? A prospective longitudinal study","authors":"Elizabeth S.M. Chan , Cathrin D. Green , Melissa R. Dvorsky , Amanda H. Steinberg , Stephen P. Becker , Joshua M. Langberg","doi":"10.1016/j.ridd.2024.104903","DOIUrl":"10.1016/j.ridd.2024.104903","url":null,"abstract":"<div><h3>Background</h3><div>The study of ADHD has predominantly focused on individual-level risk-factors, and less is known about contextual factors that promote adaptive functioning. Aims: The present study is the first to evaluate the longitudinal association between five dimensions of school climate (academic expectations, student engagement, disciplinary structure, respect for students, willingness to seek help) and student outcomes, and whether ADHD symptom severity moderates those associations. Methods and Procedures: Participants included 274 adolescents (45 % female) who completed assessments in 8th (T1) and 10th (T2) grades. Results: Hierarchical regressions revealed that school climate predicted multiple outcomes over and above ADHD symptom severity, including academic motivation, homework performance, emotion dysregulation, internalizing symptoms, and close friendships. A fair but strict school disciplinary structure and respect for students were the most consistent predictors of study outcomes regardless of ADHD symptom severity. Further, higher levels of disciplinary structure and willingness to seek help attenuated the association between ADHD symptom severity to internalizing symptoms and emotion dysregulation, respectively. Conclusions and Implications: Interventions are needed that target school level contextual factors, such as applying fair and consistent discipline and demonstrating respect for students. Structural level school factors may partially mitigate the negative impact of ADHD symptoms.</div></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"157 ","pages":"Article 104903"},"PeriodicalIF":2.9,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142958457","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}
Shahar Zaguri-Vittenberg, Naomi Weintraub, Miri Tal-Saban
{"title":"Objective and subjective participation mediate the relationship between developmental coordination disorder (DCD) and well-being aspects","authors":"Shahar Zaguri-Vittenberg, Naomi Weintraub, Miri Tal-Saban","doi":"10.1016/j.ridd.2024.104901","DOIUrl":"10.1016/j.ridd.2024.104901","url":null,"abstract":"<div><h3>Purpose</h3><div>Developmental coordination disorder (DCD) is associated with poor well-being and objective participation (i.e., frequency of engagement in activities, performance level) and decreased subjective participation (i.e., pleasure in activities, occupational experience). However, the effect of participation on individuals with DCDs well-being remains unknown. This study examined the mediating effect of participation on the relationship between DCD and two well-being aspects - health related quality of life (HRQoL) and satisfaction with life (SWL).</div></div><div><h3>Methods</h3><div>Fifty-five adults with DCD and their 61 non-DCD peers underwent a test-battery to determine fulfillment of DSM-5's DCD criteria and completed participation and well-being questionnaires.</div></div><div><h3>Results</h3><div>Compared to their non-DCD peers, adults with DCD had significantly (<em>p</em> < 0.01) poorer HRQoL, SWL and participation, manifested by an elevated need for help in performing activities, poor performance, and reduced pleasure and global occupational experience. Path analysis showed that performance mediated the link between DCD and HRQoL, while pleasure mediated the link between DCD and SWL. Global occupational experience mediated the link between DCD and both well-being aspects.</div></div><div><h3>Conclusions</h3><div>Both objective and subjective participation are possible underling factors of poor well-being in DCD. Health-care professionals are encouraged to address both performance and subjective participation experiences to support the well-being of individuals with DCD.</div></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"157 ","pages":"Article 104901"},"PeriodicalIF":2.9,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142900257","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}
Evi Verbecque , Marisja Denysschen , Dané Coetzee , Ludvik Valtr , Emmanuel Bonney , Bouwien Smits-Engelsman
{"title":"Which items of the movement assessment battery for children are most sensitive for identifying children with probable developmental coordination disorder? Results from a large-scale study","authors":"Evi Verbecque , Marisja Denysschen , Dané Coetzee , Ludvik Valtr , Emmanuel Bonney , Bouwien Smits-Engelsman","doi":"10.1016/j.ridd.2024.104904","DOIUrl":"10.1016/j.ridd.2024.104904","url":null,"abstract":"<div><h3>Introduction</h3><div>Despite the widespread use of the Movement Assessment Battery for Children, 2nd edition (MABC-2), little is known about the sensitivity or specificity of the individual items to detect probable Developmental Coordination Disorder (p-DCD). This study examined which specific MABC-2 items were most sensitive to identify children with p-DCD and which items would predict p-DCD.</div></div><div><h3>Methods</h3><div>Based on a large dataset including European and African children aged 3–16 years (n = 4916, typically developing (TD, 49.6 % boys); n = 822 p-DCD (53.1 % boys), Hedges’ g was calculated to establish the standardized mean difference (SMD) between p-DCD/TD. SMDs were considered substantial when absolute values at or above 1.4. Sensitivity and specificity of the raw MABC-2 item scores predicting p-DCD/TD per age band (AB) were established with logistic regression analysis.</div></div><div><h3>Results</h3><div>AB1: Children with p-DCD performed substantially poorer on threading beads (SMD: −1.61) and jumping on mats (SMD: 1.61). By combining all items and the country of origin, the sensitivity was 61.7 % and specificity 98.6 %. AB2: Walking heel-to-toe forwards (SMD: 1.65) was substantially poorer in p-DCD. By combining all items and the country of origin, the sensitivity was 79.0 % and specificity 97.6 %. AB3: Catching a ball with the preferred (SMD: 1.8) or non-preferred (SMD: 1.61) hand, and for walking heel-to-toe backwards (SMD: 1.78) were substantially poorer in p-DCD. All items combined resulted in a sensitivity of 94.4 % and specificity of 99.6 %.</div></div><div><h3>Conclusion</h3><div>Not all MABC-2 items are equally sensitive to distinguish between performances of p-DCD and TD. Despite the good specificity, the sensitivity was only moderate in AB1–2, the age at which children learn culturally influenced motor skills.</div></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"157 ","pages":"Article 104904"},"PeriodicalIF":2.9,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142958514","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}
John T. Mitchell, Naomi O. Davis, Jessica R. Lunsford-Avery
{"title":"Trait mindfulness in adolescents with and without Attention-Deficit/Hyperactivity Disorder","authors":"John T. Mitchell, Naomi O. Davis, Jessica R. Lunsford-Avery","doi":"10.1016/j.ridd.2025.104926","DOIUrl":"10.1016/j.ridd.2025.104926","url":null,"abstract":"<div><h3>Background and objectives</h3><div>Mindfulness-based interventions (MBIs) are proposed to cultivate trait mindfulness through mindfulness practice, which may in turn to lead improved clinical outcomes. Individuals who report lower levels of this trait may be promising candidates for MBIs because they present with the opportunity for growth in this area. Attention-Deficit/Hyperactivity Disorder (ADHD) has been associated with low trait mindfulness, though facets of trait mindfulness and ADHD features beyond core symptoms have not been examined among youth with the disorder. The goal of this study was to examine trait mindfulness—including facets of trait mindfulness—in adolescents with and without ADHD in relation to ADHD symptoms and related ADHD characteristics.</div></div><div><h3>Methods</h3><div>Adolescents (29 ADHD, 30 non-ADHD) and their caregivers completed measures of ADHD symptoms and related characteristics. Adolescents completed a trait mindfulness measure.</div></div><div><h3>Results</h3><div>The ADHD group scored significantly lower than the non-ADHD group in trait mindfulness. ADHD symptoms and multiple related characteristics were also inversely associated with trait mindfulness. A series of regressions controlling for sex and age indicated that trait mindfulness—particularly acting with awareness—is inversely associated with ADHD symptoms, cognitive disengagement syndrome symptoms, executive functioning, and sleep.</div></div><div><h3>Conclusions</h3><div>Trait mindfulness, particularly acting with awareness, is lower among adolescents with ADHD and is inversely associated with ADHD and related characteristics. Because mindfulness is thought to be particularly therapeutic for those low in trait mindfulness, findings indicate the need to develop MBIs for adolescents with ADHD.</div></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"158 ","pages":"Article 104926"},"PeriodicalIF":2.9,"publicationDate":"2025-01-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143076498","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Does how I feel change how I move? The influence of anxiety, self-efficacy and resilience on movement in adults with Developmental Coordination Disorder","authors":"Sophie Harris , Clare J. Rathbone , Kate Wilmut","doi":"10.1016/j.ridd.2025.104927","DOIUrl":"10.1016/j.ridd.2025.104927","url":null,"abstract":"<div><h3>Background</h3><div>Anxiety and movement consistency both influence movement in individuals with Developmental Coordination Disorder (DCD).</div></div><div><h3>Aims</h3><div>This study investigated the influence of anxiety, self-efficacy, resilience and movement variability on perceptions and actions of adults with and without DCD.</div></div><div><h3>Methods</h3><div>17 adults with DCD and 17 adults with typical motor skills (TMS) (age and sex-matched) completed a questionnaire and three experimental tasks: two perceptual judgement tasks (static and dynamic conditions), and an executed action task involving judging and walking through different-sized gaps between doors.</div></div><div><h3>Results</h3><div>No significant relationships were detected between general or movement-specific anxiety, self-efficacy or resilience and perceptual judgement or movement behaviour; however, movement consistency did significantly relate to movement execution in both groups. Correlations showed adults with DCD with lower movement-specific self-efficacy left bigger safety margins, and indicated stronger links between perception and action in TMS adults. In the adults with DCD there was no significant correlation between the point of behaviour change (critical ratio) in the perceptual judgement and executed action tasks, suggesting a less smoothly linked perception-action cycle than in the TMS adults.</div></div><div><h3>Conclusions and implications</h3><div>Results highlight the importance of movement variability and motor control in the movement behaviour of adults with DCD, while illustrating the importance of studying perception and action together, especially when comparing populations, to elucidate how these may be constrained differently by individual-, task- and environmental-based constraints.</div></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"158 ","pages":"Article 104927"},"PeriodicalIF":2.9,"publicationDate":"2025-01-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143076484","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}
{"title":"Families’, practitioners’, and researchers’ experience in the trajectory for the diagnostic evaluation of developmental disorders in young children","authors":"Nadia Abouzeid , Mélina Rivard , Claudine Jacques , Catherine Mello , Nikolas Parent-Poisson , Élodie Hérault , Geneviève Saulnier","doi":"10.1016/j.ridd.2025.104918","DOIUrl":"10.1016/j.ridd.2025.104918","url":null,"abstract":"<div><h3>Background</h3><div>A collaborative initiative was undertaken to restructure diagnostic and support services for developmental disabilities (DD) in young children in the province of Québec. Representatives from multiple stakeholder groups, including researchers, parents, and clinicians, shared insights based on their experiences with diagnostic evaluation services.</div></div><div><h3>Aims</h3><div>The present study documented stakeholders’ experiences with existing DD services, with a focus on identifying barriers, facilitators, and gathering actionable recommendations for the creation of a new model for diagnostic evaluation.</div></div><div><h3>Method</h3><div>Twenty-nine stakeholders shared their experiences in focus group and individual interviews. Their discourse was analyzed according to the quality determinants of the ETAP framework (Rivard et al., 2020) and categorized as barriers, facilitators, or recommendations.</div></div><div><h3>Results</h3><div>Stakeholders described several barriers related to continuity and accessibility within the current system but also discussed some facilitators that promoted, e.g., the accessibility and validity of services. They made several recommendations to improve upon or clarify existing elements and identified what could be added.</div></div><div><h3>Conclusions</h3><div>These testimonials from stakeholders emphasize the need to conceptualize the DD service trajectory as a whole. This will require improving upon information-sharing and collaboration practices, formalizing procedures, and adding case navigation and parent support modalities.</div></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"158 ","pages":"Article 104918"},"PeriodicalIF":2.9,"publicationDate":"2025-01-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143071233","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}
Riccardo Cavallaro , Alessandro Carollo , Giulia Balboni , Laura E. Gómez , Dagmara Dimitriou , Gianluca Esposito
{"title":"Beyond disability: A scientometric review of quality of life in developmental disabilities","authors":"Riccardo Cavallaro , Alessandro Carollo , Giulia Balboni , Laura E. Gómez , Dagmara Dimitriou , Gianluca Esposito","doi":"10.1016/j.ridd.2025.104919","DOIUrl":"10.1016/j.ridd.2025.104919","url":null,"abstract":"<div><div>Quality of Life (QoL) is a crucial concept that pertains to an individual’s perception of their position in life. In the context of developmental disabilities, QoL is pivotal for improving evidence-based practices, providing support and organizing services for individuals, thereby enabling them to achieve their potential with dignity and equality. Despite its importance, QoL has often not been the primary focus in many studies on developmental disabilities and remains less developed compared to other research areas. This study aims to provide a comprehensive understanding of the existing knowledge in this thematic area. A document co-citation analysis was conducted to identify the most impactful publications and main thematic domains of research in the literature (<em>N</em> = 2141 documents and their 97,547 citations). A total of 21 impactful documents were identified, most of which focused on issues related to the conceptualization and assessment of QoL. Nine major thematic domains of research were outlined. In line with the impactful publications, some research themes focused on conceptual issues (e.g., self-reported QoL and QoL reported from others) and assessment approaches. Furthermore, the literature has transitioned towards broadening the QoL perspective in the context of family and social systems. The study provides an overview of how QoL has been studied in the context of developmental disabilities, highlighting the interdependence of individuals, families, and communities in ensuring a fulfilling life through the lens of QoL.</div></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"158 ","pages":"Article 104919"},"PeriodicalIF":2.9,"publicationDate":"2025-01-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143048490","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}
Jessica R. Dietch , John Richmond T. Sy , Ellie Anderson , Kathleen Bogart
{"title":"Sleep health of adults and children with Moebius syndrome","authors":"Jessica R. Dietch , John Richmond T. Sy , Ellie Anderson , Kathleen Bogart","doi":"10.1016/j.ridd.2025.104924","DOIUrl":"10.1016/j.ridd.2025.104924","url":null,"abstract":"<div><h3>Introduction</h3><div>Moebius syndrome is a rare congenital disorder with frequent anecdotal reports of sleep disturbances not sufficiently categorized by prior literature. The present mixed-methods, two-phase study aimed to characterize the sleep health and symptoms of a cohort of adults and children (via parent proxies) with Moebius syndrome.</div></div><div><h3>Methods</h3><div>In Phase 1, participants were 46 adults with Moebius Syndrome (<em>M</em><sub><em>age</em></sub>=33.5[13.0]; 72 % female) and 17 parent-proxies for children with Moebius Syndrome (child <em>M</em><sub><em>age</em></sub>=10.47[3.4]; 53 % female). Participants completed a self-reported questionnaire battery. In Phase 2, five adults (<em>M</em><sub><em>age</em></sub>=25.4[6.5]; 100 % female) from Phase 1 completed 2 weeks of sleep diary and actigraphy, 2 nights of single-channel EEG, and diagnostic and qualitative interviews.</div></div><div><h3>Results</h3><div>Adults endorsed elevated rates of self-reported sleep disorder symptoms including sleep apnea (26 %), insomnia (56 %), nightmares (35 %), excessive daytime sleepiness (30 %), cataplexy (26 %), REM sleep behavior disorder (61 %), and parasomnias (100 %). Children had elevated rates of sleep disturbances (71 %), sleep-related daytime impairment (82 %), parasomnias (76 %) and daytime sleepiness (53 %). Qualitative interviews revealed participants endorsed a history of sleep problems dating to childhood and continuing into adulthood that impacted social relationships and quality of life and had experienced little treatment success.</div></div><div><h3>Discussion</h3><div>These findings shed light on the constellation of sleep health experiences among individuals with Moebius syndrome. Poor sleep health may represent a modifiable treatment target to improve health and well-being in individuals with Moebius syndrome. The heterogenous nature of sleep problems among people with Moebius syndrome may not respond well to a one-size-fits-all intervention, instead necessitating personalized approaches.</div></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"158 ","pages":"Article 104924"},"PeriodicalIF":2.9,"publicationDate":"2025-01-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143048512","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}