Future care planning of adults with childhood-onset neurodevelopmental disabilities: A scoping review.

BACKGROUND: Advances in medicine have increased the life expectancy of adults with neurodevelopmental disabilities (ND). These individuals often reside with aging family caregivers, who also experience age-related health issues. However, many caregivers lack future care plans for their adult children. Thus, there is a pressing need for practical solutions for family-centered future care planning (FCP). AIMS: To summarize the literature on the key components of FCP for adults with ND and their familial caregivers. METHODS AND PROCEDURES: This scoping review adhered to the Joanna Briggs Institute guidelines. It utilized search terms related to ND and FCP and conducted searches in four databases. Data were analyzed thematically. OUTCOMES AND RESULTS: The initial search generated over unique 9000 articles. The review identified facilitators, such as preferences, family-centered approaches, advocacy, and formal support, which promote effective FCP. Barriers to FCP included caregiver hesitancy, limited resources, the emotional nature of future care planning. Recommendations for addressing these challenges included policy and practice support, healthcare professional education and training, and the active involvement of clients and caregivers in FCP discussions. CONCLUSIONS AND IMPLICATIONS: This review contributes to the understanding of FCP for adults with ND and offers insights for improving family-centered care planning processes. WHAT THIS PAPER ADDS?: This paper contributes to the literature by highlighting the pressing need for comprehensive future care planning (FCP) for adults with neurodevelopmental disabilities (ND) and their aging caregivers. With increasing life expectancy for adults with ND, there is a growing population of aging caregivers who often lack proactive FCP. The review identifies common FCP facilitators, barriers, and recommendations, emphasizing the emotional and financial challenges caregivers face. On the macro level, distrust of the public sector, a crisis-driven healthcare system, and a lack of funding and information present significant challenges. On the micro level, emotional attachment to adult children with ND can lead to family instabilities, uncertainties about the "right decision," and feelings of helplessness and guilt among caregivers. It underscores the importance of taking a family-centered approach, involving the adult with ND, and providing healthcare professionals with the necessary education and support to guide caregivers through the FCP process. The paper also highlights the limited existing interventions and calls for further research to address this critical issue. By reviewing a broad range of studies, the paper sets the stage for future research and practice in this area. It offers valuable insights into the components of FCP that can inform recommendations for healthcare professionals, caregivers, and individuals with ND to enhance the continuity of care. In doing so, it aims to address the gaps in the existing literature, particularly the lack of caregiver-informed recommendations for comprehensive FCP.

Quality of Life, Coping Strategies, and Psychosocial Support Status of Caregivers Having Children With Neurodevelopmental Disabilities: A Cross-Sectional Study From Bangladesh.

Background Although caregiving is considered a normal phenomenon for parents, delivering care to a child with neurodevelopmental disabilities can be taxing and disastrously impact parents' quality of life (QoL). This study explored the relationship between QoL, coping strategies, and psychosocial support status of caregivers of children with neurodevelopmental disabilities. Methodology This cross-sectional study included 906 caregivers of children having neurodevelopmental disabilities utilizing the World Health Organization Quality of Life Brief and Perceived Stress Scale. A tailored questionnaire gauged coping strategies and psychosocial support. Linear regression was used to identify significant contributors. Results Most caregivers (78.8%) experienced a moderate level of stress, and their QoL scores were 14.4 (SD = 2.5) for physical health, 12.0 (SD = 2.4) for psychological health, 14.6 (SD = 1.9) for social relationships, and 12.1 (SD = 2.1) for the environment. Mothers had the lowest QoL of all caregivers. Negative influences on QoL encompassed caregiver and child age, perceived stress, and lower socioeconomic status. A higher coping score positively predicted a high health-related QoL score. Gender differences were observed in psychosocial support sources. Conclusions The study underscores the need for policymaking considering findings to develop psychosocial intervention programs for enhancing the QoL of caregivers of children with neurodevelopmental disabilities.

Assessing and teaching job-related social skills to adults with neurodevelopmental disorders in Italy.

Social challenges in the work place can serve as an obstacle to regular employment for many individuals with neurodevelopmental disabilities (NDD). Nonetheless, few studies have focused on interventions to improve job-related social skills or included residents of countries outside of the United States. This study replicated and extended prior research by evaluating the acquisition of job-related social skills with three individuals with NDD residing in Italy. Results suggested that a package consisting of behavioral skills training and token reinforcement was effective for teaching the skills in the clinic and in extension to real work contexts. Furthermore, social validity surveys indicated that the participants, professionals, and caregivers of individuals with NDD considered the skills and interventions to be acceptable. These findings have implications for improving employment outcomes for individuals with NDD across the globe.

A Longitudinal Study of Aggression in People with Autism and Other Neurodevelopmental Disabilities.

Aggression is common in autism and neurodevelopmental disorders, but longitudinal research on aggression is lacking. We longitudinally tracked aggression in 254 individuals from toddlerhood to emerging adulthood. Our sample included participants with a range of cognitive abilities, with 39.9% classified as more-cognitively-abled (MCA; IQ ≥ 70) and 60.1% as less-cognitively-abled (LCA; IQ < 70). Aggression Composite scores were derived from data from the autism diagnostic observation schedule, autism diagnostic interview-revised, and child behavior checklist at ages 2, 9, and 18. Fifty-four percent, 69%, and 42% of the sample showed aggression in toddlerhood, school age, and emerging adulthood, respectively. LCA individuals had higher rates of aggression in school age (80%) and emerging adulthood (58%) compared to MCA individuals (48 and 22%, respectively). Longitudinal aggression profiles revealed distinct patterns of change over time: 31% displayed persistent aggression, 25% increased, 23% decreased, and 13% never displayed aggression. Higher autism symptoms, lower VIQ, NVIQ, and less-developed adaptive skills correlated with more aggression cross-sectionally. Nonverbal IQ and repetitive behaviors related to aggression longitudinally: people in decreasing or absent profiles had higher NVIQ and fewer RRBs than those with persistent or increasing profiles. Participants with aggression at 9 were four times likelier to exhibit aggression at 18. Aggression is common in autism and NDDs, peaking around age 9, and declining in emerging adulthood. Patterns of change varied widely, with evidence that higher NVIQ and fewer RRBs may be protective. Findings have implications for clinical practices, highlighting important developmental periods and high-risk subgroups.

Needs of children with neurodevelopmental disorders and medical complexity: Caregiver perspectives.

BACKGROUND: Caregivers of children with neurodevelopmental disorders and medical complexities (NDD-MC) coordinate care across complex multisectoral systems. Often NDD-MC children have complex behaviors, however there is limited information on coordination needs for families. AIM: The objective of this mixed methods study was to understand the needs of families with NDD-MC children. METHODS AND PROCEDURES:  This sequential exploratory study obtained the perspectives of 67 caregivers of NDD-MC children using semi-structured interviews and validated questionnaires to measure family quality of life, care integration, and resource use. An adapted model using Maslow's hierarchy of needs was integrated, to understand the impacts of caregiving on quality of life. OUTCOMES AND RESULTS: Lack of support in caring for NDD-MC children negatively impacted family quality of life, resulting in various unmet needs, including caregiver burden, behavioural challenges, financial losses, and mental health issues. Caregivers dealt with a fragmented healthcare system that offered limited support to address coordination challenges. CONCLUSIONS AND IMPLICATIONS: The implementation of a needs-based care coordination program is recommended to consider the health, educational, and social needs of NDD-MC children and their families. Effective care for children with complex needs should tailor support for families using Maslow's hierarchy to enhance quality of life.

Early Life Origins of Neurodevelopmental Disabilities in the Boston Birth Cohort: Research findings and future directions.

Neurodevelopmental disabilities (NDD) are a group of conditions with onset in early development period and is characterized by limitations in several functional domains. Autism spectrum disorder (ASD) and Attention-Deficit Hyperactivity Disorders (ADHD), the most common NDDs, have complex etiologies and possibly multiple pathways leading up to the manifestation of these disorders. Boston Birth Cohort (BBC) is a preterm enriched birth cohort, and over the years, researchers have used the BBC dataset to study a broad spectrum of early life protective and risk factors in the context of NDDs. Broadly, some of them include: 1) nutrition (e.g. maternal folate, vitamin B12, cord folate species, selenium), 2) metabolic factors (e.g. role of maternal diabetes, obesity, branched chain amino acids and other essential amino acids), 3) lipid metabolism (e.g. maternal cholesterol), 4) immune activation and/or systematic inflammation (including maternal immune activation, inflammation of the placenta, inflammatory markers, maternal antibiotic use and acetaminophen use), and 5) other factors associated with NDDs (e.g. maternal stress, sickle cell disease). The findings from these studies are discussed in this review. BBC studies have advanced the field of NDD in the following important ways: 1) generating evidence that sheds light on new exposures, 2) furthering the existing knowledge using better methodological approaches, 3) analyzing novel mechanistic pathways on already proven relationship, and 4) advancing knowledge on the under-studied minority population in the U.S. BBC researchers are involved in ongoing efforts to characterize NDD developmental trajectories across the life stages by integrating multi-omics data (genome, epigenome, and metabolome) to gain a deeper understanding of the molecular pathways by which early life factors drive or shape the developmental trajectories of NDDs.

Experiences of identifying pre-school children with disabilities in resource limited settings - an account from Malawi, Pakistan and Uganda.

Although access to effective medical care for acutely sick children has improved globally, the number of children surviving but who may not be thriving due to disability, is increasing. This study aimed to understand the views of health professionals, educators and caregivers of pre-school children with disabilities in Malawi, Pakistan and Uganda regarding early identification, referral and support. Using applied thematic analysis, we identified themes relating to; limited 'demand' by caregivers for services; different local beliefs and community perceptions regarding the causes of childhood disability. Themes relating to 'supply' of services included inability to respond to community needs, and inadequate training among professionals for identification and referral. Stepwise, approaches provided to the families, community health worker and higher-level services could include training for community and primary care health workers on basic identification techniques and enhanced awareness for families and communities on the importance of early identification of children with disabilities.

Lack of collaboration between the community and health services may lead to entrenched pessimistic views of what can be done to support children with disabilities - generating a greater mistrust and low parental take-up of vital health services.If parents do not receive help at the community and clinic level, then, there is a need to move away from trying to provide a 'specific diagnosis' to working more on a level of assessing the child's functioning in terms of what their limitations are and how they can be addressed.Any identification and referral programme needs to consider the varying local beliefs, the stigma of having a child with a disability and feelings of blame, right from the start.A stepwise, incremental approaches, ranging from the provision of basic information, such as using brief materials highlighting 'red flag' milestones and conditions which are linked to guidance for support to families, community health workers, as well as higher levels of medical services, are likely to work best.

A clinical-translational review of sleep problems in neurodevelopmental disabilities.

Sleep disorders are very common across neurodevelopmental disorders and place a large burden on affected children, adolescents, and their families. Sleep disturbances seem to involve a complex interplay of genetic, neurobiological, and medical/environmental factors in neurodevelopmental disorders. In this review, we discuss animal models of sleep problems and characterize their presence in two single gene disorders, Rett Syndrome, and Angelman Syndrome and two more commonly occurring neurodevelopmental disorders, Down Syndrome, and autism spectrum disorders. We then discuss strategies for novel methods of assessment using wearable sensors more broadly for neurodevelopmental disorders in general, including the importance of analytical validation. An increased understanding of the mechanistic contributions and potential biomarkers of disordered sleep may offer quantifiable targets for interventions that improve overall quality of life for affected individuals and their families.

Assessing the Role of Asthma on the Relationship between Neurodevelopmental Disabilities and Adverse Birth Outcomes.

BACKGROUND: Investigating asthma as an effect modifier between adverse birth outcomes and neurodevelopmental disabilities (NDDs) across different races is crucial for tailored interventions and understanding variable susceptibility among diverse populations. METHODS: Data were collected through the National Survey of Children's Health. This cross-sectional study included 131,774 children aged 0 to 17 years. Study exposures comprised adverse birth outcomes including preterm birth and low birth weight. Weighted prevalence estimates and odds ratios with 95% confidence intervals (CIs) among children with and without adverse birth outcomes were calculated for NDDs including attention-deficit/hyperactivity disorder, autism spectrum disorder, cerebral palsy, seizure, and several others including behavior problems. Adjusted odds ratios were stratified by asthma status and separate interactions were assessed for each outcome. RESULTS: Of 131,774 participants, 10,227 were born low birth weight (9.12%; 95% CI: 8.77% to 9.49%), 14,058 were born preterm (11.35%; 95% CI: 10.94% to 11.76%), and 16,166 participants had asthma (11.97%; 95% CI: 11.58% to 12.37%). There were 68,100 males (51.11%), 63,674 females (48.89%), 102,061 non-Hispanic Whites (NHW) (66.92%), 8,672 non-Hispanic Blacks (NHB) (13.97%), and 21,041 participants (19.11%) categorized as other. NHB children with adverse birth outcomes had higher prevalence of several NDDs compared to NHW children. CONCLUSIONS: Asthma was not shown to be an effect modifier of the association between adverse birth outcomes and NDDs. Nevertheless, these results suggest that NDDs are more prevalent within US children with adverse birth outcomes, with higher rates among NHB compared to NHW children. These findings support screening for NDDs in pediatric health care settings among patients with adverse birth outcomes, particularly among those from ethnic minority backgrounds.

Childhood disabilities and the cost of developmental therapies: the serviceprovider perspective.

PURPOSE: For children with neurodevelopmental disabilities (CWNDs), early diagnosis that leads to early intervention with regular targeted therapies is critical. In Qatar, private therapy centres that address this demand often have highly exclusive prices restricting families from availing them. This paper examines the challenges faced by families with CWNDs, as well as various financial and systemic obstacles, from the vantage point of these centres, all of which culminate in an extraordinarily high disability price tag for disability families in Qatar. METHODS: This study is based on qualitative, semi-structured, and in-depth interviews with private therapy centres and developmental paediatricians. RESULTS: Therapy centre representatives expressed common struggles in lengthy and cumbersome administration and licencing procedures, difficulty in hiring and retaining high quality staff, and expenses that need to be paid to the state. From their experience, families largely struggle with delayed diagnoses that significantly slow down intervention plans and therapies as well as staggeringly high financial costs with a dearth of funding options. CONCLUSIONS: We recommend sincere engagement, dialogue, and cooperation between multiple stakeholders; a supportive ecosystem to balance and distribute the demand that includes schools and parents; as well more efficient administrative procedures and recruitment strategies.

Prevalence and Risk Factors for Cerebral Palsy in Children With Congenital Heart Disease Based on Risk of Surgical Mortality.

BACKGROUND: Children with congenital heart disease (CHD) have a higher prevalence of motor impairment secondary to brain injury, resulting in cerebral palsy (CP). The purpose of this study is to determine the prevalence of CP in CHD in a single-center cohort, stratify risk based on surgical mortality using Society of Thoracic Surgeons-European Association for Cardio-Thoracic Surgery (STAT) categories and identify risk factors. METHODS: Retrospective cohort study of pediatric patients registered in the University of Florida (UF) Society of Thoracic Surgeons Congenital Heart Surgery database from 2006 to 2017 with a diagnosis of CHD who continued follow-up for more than two years at UF. RESULTS: A total of 701 children with CHD met inclusion criteria. Children identified to have CP were 54 (7.7%). Most common presentation was spastic hemiplegic CP with a Gross Motor Function Classification System of level 2. Analysis of surgical and intensive care factors between the two groups showed that children with CHD and CP had longer time from admission to surgery (P = 0.003), higher STAT categories 4 and 5 (P = 0.038), and higher frequency of brain injury and seizures (P < 0.001). Developmental disabilities and rehabilitation needs were significantly greater for children with CHD and CP when compared with those with CHD alone (P < 0.001). CONCLUSIONS: In our cohort, 7.7% children with CHD develop CP; this is significantly higher than the 2010 US population estimate of 0.3%. Our study suggests higher STAT categories, brain injury, and seizures are associated with developing CP in children with CHD.

Mental health in children with disabilities and their families: red flags, services' impact, facilitators, barriers, and proposed solutions.

Background: Children and youth with neurodevelopmental disabilities (NDDs) and their caregivers are at a high risk of experiencing mental health challenges, that in turn can significantly affect their functioning, productivity, and quality of life. In this already vulnerable population, mental health difficulties are now more frequently reported and pronounced secondary to the isolation and uncertainties experienced during the pandemic. Our previous work has shown important mental health services' gaps for children/youth with NDDs and their families, highlighting the need to optimize and tailor existing practices. Objective: To explore mental health services' barriers, facilitators, impact, and solutions from the perspectives of HCPs and CGs, and to describe common precursors to mental health challenges in children with NDDs from the perspectives of these two groups. Methods: In a triangulation mixed-method study design embedding quantitative and qualitative approaches, participants completed a survey and a semi-structured interview. Descriptive statistics and a hybrid inductive/deductive thematic approach were used for data analysis. Results: Over 700 utterances were analyzed (247 from caregivers [n = 10], 531 from clinicians [n = 16]) and included 143 and 173 statements related to the precursors and barriers/facilitators, respectively. Common precursors to mental health challenges (n = 7 categories) were identified and included reported feelings/perception of self, behavioral and physical manifestations, emotional dysregulation, and school-related factors, among others. Clinicians reported a widespread need for pediatric, family-centered mental health services and conveyed lacking mental health resources/training to meet the demand. Caregivers indicated being only moderately satisfied when care was received. Salient facilitators identified by clinicians were having an interdisciplinary team and caregiver's engagement in the therapeutic processes. Participants recommended improvements to increase accessibility to mediate the existing discrepancy between the emergence of precursors and care received; that services must target a broader population and be more comprehensive (e.g., family-centered care, addressing high-risk transition periods); and training/toolkits to support clinicians' evidence-based practice. Conclusion: Our findings emphasize the necessity of a systematic and standardized approach to mental health services for children with NDDs and their families. Enhancing caregiver support, addressing barriers, and adopting a proactive, family-centered approach are crucial for improving accessibility and quality. These proposed solutions provide valuable insights for shaping policies and practices in pediatric mental health services.

A biomarker-based solution for the limited access to early diagnosis and assessment of autism.

With the upsurge of community uptake in population-based early screening for autism, the main obstacle to increasing access to early treatment and intervention services is the extremely limited access to high quality diagnosis, specifically the shortage of expert clinicians. Diagnostic evaluation models deployed by academic centers of excellence, which typically require the investment of 6-10 hours by specialized multidisciplinary teams, is not a viable solution to the vast needs of communities, resulting in parents' "diagnostic odysseys" and delays, often of several years, for treatment, interventions and supports. Biomarker-based objective procedures for early diagnosis and assessment of autism are now available, clinically validated, and cleared for broad implementation by the US Food and Drug Administration (FDA). They are intended to increase access while maintaining high quality. Such solutions, however, will require change in entrenched models of diagnostic care, and aggressive prioritization of the needs of the community at large. If these innovations are successful, the number of children diagnosed in the first three years of life will double or triple. This will, in turn, require much greater investments in resources for treatment, including massive workforce training of providers capable of delivering community-viable caregiver-mediated interventions, and of early educators capable of serving autistic children in therapeutic inclusive preschool settings.

Con el aumento de la aceptación comunitaria de la detección temprana del autismo basada en la población, el principal obstáculo para aumentar el acceso al tratamiento temprano y a los servicios de intervención es el acceso extremadamente limitado a un diagnóstico de alta calidad, específicamente la escasez de médicos expertos. Los modelos de evaluación diagnóstica implementados por centros académicos de excelencia, que normalmente requieren la inversión de 6 a 10 horas por parte de equipos multidisciplinarios especializados, no son una solución viable para las vastas necesidades de las comunidades, lo que resulta en "odiseas diagnósticas" y retrasos, a menudo de gran importancia, para los padres varios años, para tratamiento, intervenciones y apoyos. Los procedimientos objetivos basados en biomarcadores para el diagnóstico temprano y la evaluación del autismo ya están disponibles, clínicamente validados y aprobados para su amplia implementación por la Administración de Alimentos y Medicamentos de EE. UU. (FDA). Su objetivo es aumentar el acceso manteniendo una alta calidad. Sin embargo, tales soluciones requerirán cambios en los modelos arraigados de atención de diagnóstico y una priorización agresiva de las necesidades de la comunidad en general. Si estas innovaciones tienen éxito, el número de niños diagnosticados en los primeros tres años de vida se duplicará o triplicará. Esto, a su vez, requerirá inversiones mucho mayores en recursos para el tratamiento, incluida la capacitación masiva de la fuerza laboral de proveedores capaces de brindar intervenciones comunitarias viables mediadas por cuidadores, y de educadores tempranos capaces de atender a niños autistas en entornos preescolares terapéuticos inclusivos.

Developing Workforce Skills and Capacity in Telehealth: What LEND Trainees Need to Know.

INTRODUCTION: The COVID-19 pandemic significantly impacted the way health-related services are delivered, rapidly shifting from in-person to telehealth visits. To ensure that future healthcare providers are fully prepared to deliver services to families of youth with neurodevelopmental disabilities (NDD), understanding telehealth's advantages and barriers is vital. To this end, data were gathered to inform the development of a nationally available telehealth curriculum aimed at training future healthcare professionals from the Leadership Education in Neurodevelopmental Disabilities (LEND) network. METHODS: Surveys were sent out nationally to current LEND trainees, practicing healthcare professionals, and family members of youth with NDD in November of 2020. Multiple choice and free response questions were completed and analyzed. A total of N = 208 surveys were completed (88 LEND trainees, 94 practicing professionals, 23 family members). RESULTS: Most survey respondents reported having positive experiences with telehealth. LEND trainees and current healthcare professionals cited increased access to care and engagement as the top benefit of telehealth. Most family members reported using telehealth services (78%) and felt it was superior to in-person visits in terms of location of visit, scheduling, and meeting transportation needs. Trainees and professionals agreed the top barriers to telehealth for families were lack of broadband access and complexity of implementation and use. LEND trainees agreed telehealth basics should be included in LEND curriculum. DISCUSSION: Trainees, professionals, and family members all agreed that knowing the basics of telehealth is essential for effective telehealth service delivery. Emerging healthcare professionals need to understand how those they will be serving engage with technology, their levels of experience in this area, and effective strategies for engaging children and youth with NDD through telehealth. This will bridge the engagement gap many families of children with disabilities face when not meeting in person. Findings from this study contributed to the design of learning materials that currently support LEND trainees across the country in developing these skills.

Parental Survey on Spanish­English Bilingualism in Neurotypical Development and Neurodevelopmental Disabilities in the United States.

Objectives: The cognitive and social benefits of bilingualism for children, including those with neurodevelopmental disabilities (NDDs), have been documented. The present study was designed to characterize and compare English and Spanish use in Hispanic families with and without NDDs residing in the U.S. as well as to understand parental perceptions of their child's bilingualism and of community and professional support. Methods: We conducted an online survey of 84 Spanish-speaking parents of 4- to 24-year-olds with (n = 44) and without NDDs (n = 40) who were born in and living in the U.S. Results: We found that bilingualism was a desired goal for 95% of our families. We also found, however, that 17.1% of parents of children with NDDs have raised them as monolinguals English-speakers, as they thought there were reasons for that, while all families from the NT group raised their children in both languages. In addition, nearly 40% of the NDD children only speak English, compared to a 5% in the NT group. Finally, parents of children with NDDs cite a lack of support for bilingualism in the community (47.6% do not feel supported, compared to a 7.9% in the NT group) and recommendation from professionals as major factors for not raising their children as bilingual. Conclusions: The results suggest a need to educate professionals from many disciplines about the benefits of bilingualism for children with NDDs and for implementation of inclusion policies that provide access to dual-language programs.

Tocolysis after preterm prelabor rupture of membranes and 5-year outcomes: a population-based cohort study.

BACKGROUND: The administration of tocolytics after preterm prelabor rupture of membranes remains a controversial practice. In theory, reducing uterine contractility should delay delivery and allow for optimal antenatal management, thereby reducing the risks for prematurity and adverse consequences over the life course. However, tocolysis may be associated with neonatal death or long-term adverse neurodevelopmental outcomes, mainly related to prolonged fetal exposure to intrauterine infection or inflammation. In a previous study, we showed that tocolysis administration was not associated with short-term benefits. There are currently no data available to evaluate the impact of tocolysis on neurodevelopmental outcomes in school-aged children born prematurely in this clinical setting. OBJECTIVE: This study aimed to investigate whether tocolysis administered after preterm prelabor rupture of membranes is associated with neurodevelopmental outcomes at 5.5 years of age. STUDY DESIGN: We used data from a prospective, population-based cohort study of preterm births recruited in 2011 (referred to as the EPIPAGE-2 study) and for whom the results of a comprehensive medical and neurodevelopmental assessment of the infant at age 5.5 years were available. We included pregnant individuals with preterm prelabor rupture of membranes at 24 to 32 weeks' gestation in singleton pregnancies with a live fetus at the time of rupture, birth at 24 to 34 weeks' gestation, and participation of the infant in an assessment at 5.5 years of age. Exposure was the administration of any tocolytic treatment after preterm prelabor rupture of membranes. The main outcome was survival without moderate to severe neurodevelopmental disabilities at 5.5 years of age. Secondary outcomes included survival without any neurodevelopmental disabilities, cerebral palsy, full-scale intelligence quotient, developmental coordination disorders, and behavioral difficulties. A propensity-score analysis was used to minimize the indication bias in the estimation of the treatment effect on outcomes. RESULTS: Overall, 596 of 803 pregnant individuals (73.4%) received tocolytics after preterm prelabor rupture of membranes. At the 5.5-year follow-up, 82.7% and 82.5% of the children in the tocolysis and no tocolysis groups, respectively, were alive without moderate to severe neurodevelopmental disabilities; 52.7% and 51.1%, respectively, were alive without any neurodevelopmental disabilities. After applying multiple imputations and inverse probability of treatment weighting, we found no association between the exposure to tocolytics and survival without moderate to severe neurodevelopmental disabilities (odds ratio, 0.93; 95% confidence interval, 0.55-1.60), survival without any neurodevelopmental disabilities (odds ratio, 1.02; 95% confidence interval, 0.65-1.61), or any of the other outcomes. CONCLUSION: There was no difference in the neurodevelopmental outcomes at age 5.5 years among children with and without antenatal exposure to tocolysis after preterm prelabor rupture of membranes. To date, the health benefits of tocolytics remain unproven, both in the short- and long-term.

COVID-19 and Neurodevelopmental Disabilities: Examining the Impact of the First 2 Years of the Pandemic on the Demand for Pediatric Inpatient Care.

The COVID-19 pandemic has strained the resources of the world's healthcare systems. Most individuals with neurodevelopmental disabilities (NDDs) experience significant mental health issues and face substantial barriers in accessing appropriate supports which have been exacerbated during the pandemic. It is unknown the extent to which COVID-19 impacted the demand for and effectiveness of inpatient care for those with NDDs. The impact of COVID-19 on the number of admissions of youth with NDDs to pediatric inpatient psychiatry units, as well as their functioning and length of stay during the first two years of the pandemic was analyzed using Bayesian structural time series models. Admission data of youth with NDDs from four pediatric inpatient units in Alberta, Canada (n = 2144) was examined. Inpatient admissions of youth with NDDs significantly increased following the onset of the pandemic. Compared to the period prior to the pandemic, patients with NDDs had significantly worse overall functioning and received fewer days of treatment. These findings highlight the need for increased resources to support the mental health needs of this vulnerable population and are consistent with other studies in the general population examining the utilization of inpatient psychiatric units during the pandemic.

Impact of consuming a Mediterranean-style diet during pregnancy on neurodevelopmental disabilities in offspring: results from the Boston Birth Cohort.

Background: While consuming a Mediterranean-style diet (MSD) among pregnant women is expected to affect offspring neurodevelopment, the current evidence is limited. This prospective birth cohort study aimed to explore the association of maternal MSD with neurodevelopmental disabilities (NDD) in offspring, especially among children born to mothers with overweight or obesity (OWO) and/or diabetes mellitus (DM) since they have a higher risk for oxidative stress and immune/metabolic disturbances. Methods: We analyzed data from a subgroup of mother-child dyads enrolled in the Boston Birth Cohort. Maternal dietary information (via food frequency questionnaires, Food frequency questionnaires [FFQ]) and sociodemographic information were obtained via in-person interviews within 24 to 72 hours postpartum. Maternal clinical information and child diagnosis of NDD including autism, attention-deficit/hyperactivity disorder (ADHD), and other developmental disabilities (DD) were extracted from medical records. A Mediterranean-style diet score (MSDS) was calculated using the FFQ. The association of maternal MSDS with NDD, autism, ADHD, and other DD was evaluated using multivariable logistic regression models adjusted for pertinent covariates. Results: This study included 3153 mother-child pairs, from which we identified diagnoses of 1362 (43.2%) NDD, including 123 (3.9%) case of autism, 445 (14.1%) ADHD, and 794 (25.2%) other DD. In the overall sample, women with a higher maternal MSDS (per standard deviation increase) were less likely to have offspring with NDD (adjusted odds ratio [OR]: 0.904, 95% confidence interval [CI]: 0.817-1.000; P value: 0.049). Using MSDS quintile 1 as the reference, being in the combined group of quintiles 3-5 was associated with a 26% lower likelihood of NDD (adjusted OR: 0.738, 95% CI: 0.572-0.951; P value: 0.019). When stratified by mothers with OWO/DM vs. without OWO/DM, the association between maternal MSDS and offspring NDD was greater in children born to mothers with OWO/DM. Conclusions: In this prospective birth cohort, a higher maternal MSDS was associated with a lower likelihood of NDD in the offspring. Furthermore, this association of maternal MSDS with offspring NDD was greater in children born to women with OWO/DM. More studies are needed to replicate the findings and further analyze NDD subgroups and explore underlying molecular pathways.

Headache in Individuals with Neurodevelopmental Disorders.

PURPOSE OF REVIEW: Migraine is a common condition affecting an estimated billion people across the world. The incidence in individuals with neurodevelopmental disorders or intellectual disabilities like those seen in severe autism spectrum disorder (ASD) is unknown. This is likely due to the limited capacity to communicate the specifics of pain. The expression of pain with maladaptive behaviors, such as self-injurious behavior (SIB), has been described and can alert the clinician to the presence of untreated pain. This review article serves to educate the reader about clinical and treatment considerations when managing headaches in individuals with severe or non-verbal neurodevelopmental disorders given their communication challenges. It will include some clinical experiences and the gaps in our current knowledge. RECENT FINDINGS: A comprehensive literature review was conducted using scientific databases, including PubMed, Medline, and Google Scholar. Only 1 article addressed the consideration for headaches in this population. The search was conducted using a combination of the following keywords: headache, intellectual disabilities, autism, pain, and behavior. Headache pain is likely underestimated and represents a disservice to this population of people. The consideration for headache pain should be explored when maladaptive behaviors are otherwise unexplainable. Further studies are needed in the area.