Children's Sleep During COVID-19: How Sleep Influences Surviving and Thriving in Families.

OBJECTIVE: The COVID-19 pandemic has the potential to disrupt the lives of families and may have implications for children with existing sleep problems. As such, we aimed to: (1) characterize sleep changes during the COVID-19 pandemic in children who had previously been identified as having sleep problems, (2) identify factors contributing to sleep changes due to COVID-19 safety measures, and (3) understand parents' and children's needs to support sleep during the pandemic. METHODS: Eighty-five Canadian parents with children aged 4-14 years participated in this explanatory sequential, mixed-methods study using an online survey of children's and parents' sleep, with a subset of 16 parents, selected based on changes in their children's sleep, participating in semi-structured interviews. Families had previously participated in the Better Nights, Better Days (BNBD) randomized controlled trial. RESULTS: While some parents perceived their child's sleep quality improved during the COVID-19 pandemic (14.1%, n = 12), many parents perceived their child's sleep had worsened (40.0%, n = 34). Parents attributed children's worsened sleep to increased screen time, anxiety, and decreased exercise. Findings from semi-structured interviews highlighted the effect of disrupted routines on sleep and stress, and that stress reciprocally influenced children's and parents' sleep. CONCLUSIONS: The sleep of many Canadian children was affected by the first wave of the COVID-19 pandemic, with the disruption of routines influencing children's sleep. eHealth interventions, such as BNBD with modifications that address the COVID-19 context, could help families address these challenges.

Health, Social, Education, and Justice Outcomes of Manitoba First Nations Children Diagnosed with Fetal Alcohol Spectrum Disorder: A Population-Based Cohort Study of Linked Administrative Data.

OBJECTIVE: To examine health services, social services, education, and justice system outcomes among First Nations children and youth with fetal alcohol spectrum disorder (FASD). METHODS: In this retrospective cohort study, health and social services, education, and justice data were linked with clinical records on First Nations (FN) individuals aged 1 to 25 and diagnosed with FASD between 1999 and 2010 (n = 743). We compared the FN FASD group to non-FN individuals with FASD (non-FN FASD; n = 315) and to First Nations individuals (matched on age, sex, and income) not diagnosed with FASD (FN non-FASD; n = 2229). Rates and relative risks (RRs) were calculated using generalized linear models. RESULTS: FN FASD individuals had similar health services use to non-FN FASD individuals but had greater involvement with child welfare (RR, 1.20; 95% confidence interval [CI], 1.02 to 1.41) and the justice system (RR, 1.37; 95% CI, 1.07 to 1.74) and were more likely to be charged with a crime (RR, 1.40; 95% CI, 1.05 to 1.86). There were no suicides/suicide attempts among the non-FN FASD individuals during the study, but the crude rate/100 person-years of suicides among FN FASD individuals (0.22 for females; 1.06 for males) was substantially higher than for FN non-FASD individuals (0.08 for females; 0.32 for males). There were no significant differences between groups in the education outcomes we measured. CONCLUSIONS: Young people with FASD are at risk for poor health, education, and social outcomes, but First Nations young people with FASD face comparably higher risks, particularly with child welfare and justice system involvement. The study emphasizes a critical need for appropriate resources for First Nations children with FASD.

Understanding and managing sleep disruption in children with fetal alcohol spectrum disorder.

Accumulating evidence has revealed high rates of sleep disruption among children with fetal alcohol spectrum disorder (FASD). Multiple animal and clinical studies have found a clear association between sleep problems and prenatal alcohol exposure, and recent research is beginning to characterize the types and extent of sleep disruption in FASD. Nevertheless, sleep disruption in children with FASD often goes unrecognized or is treated without referring to an evidence base. Children's disrupted sleep interferes with parental sleep and increases caregiver burden, which is of particular importance for families raising children with FASD, a group with very high levels of caregiving stress. The literature supporting an association between sleep problems and deficits in emotional, behavioral, and cognitive function in children is compelling, but needs further investigation in children with FASD. This paper will review the current state of knowledge on sleep in FASD and recommend a rational approach to sleep interventions for affected children and their families.

Translating to the Community (T2C): a protocol paper describing the development of Canada's first social epigenetic FASD biobank.

Translating to the Community (T2C) is a social biorepository designed to advance new diagnostic tools and realign community-clinical processes, with the aim to mitigate the short- and long-term impacts of fetal alcohol spectrum disorder (FASD) as well as prenatal alcohol exposure and its co-morbidities and behaviors. In this paper, we describe the evolution of this repository as a new translational partnership to advance a precision-medicine approach to FASD. Key to its evolution was a partnership between academic researchers, Indigenous communities, families, and a regional diagnostic clinic. We further describe the rationale for social biobanking, the type of banking, ethical engagement of families, communities, and clinics, their roles in repository design, governance, translation, and research activities, types of data collected from families, and how the study data are managed, reported, and accessed. The repository design includes biological samples, social-contextual health-survey data, and clinical data (which are linkable to administrative data) from community and clinical cohorts of diagnosed children, children prenatally exposed but not diagnosed, children suspected to have had a prenatal exposure, and related siblings, biological parents, and unrelated children and their parents. From these cohorts and families, potential studies drawing on this data will shed light on various risk factors, social and biological pathways, and service utilization issues, with the aim to implement primary and secondary prevention and intervention strategies.

The Psychiatric Morbidity of Women Who Give Birth to Children with Fetal Alcohol Spectrum Disorder (FASD): Results of the Manitoba Mothers and FASD Study.

OBJECTIVE: To investigate differences in physician-diagnosed psychiatric disorders between women who gave birth to children with a fetal alcohol spectrum disorder (FASD) diagnosis (study group) compared to women who gave birth to children without FASD (comparison group). METHODS: We linked population-level health and social services data to clinical data on FASD diagnoses to identify study group ( n = 702) and comparison group ( n = 2097) women matched 1:3 on date of birth of index child, region of residence, and socioeconomic status. Regression modeling produced relative rates (RRs) for outcomes. RESULTS: Mothers who gave birth to children with FASD had higher adjusted rates of substance use disorder (RR, 12.65; 95% confidence interval [CI], 8.99-17.80), personality disorder (RR, 12.93; 95% CI, 4.88-34.22), and mood and anxiety disorders (RR, 1.75; 95% CI, 1.49-2.07) before the pregnancy of the child. These mothers also had higher adjusted rates of maternal psychological distress during pregnancy (RR, 5.35; 95% CI, 4.58-6.35) and higher rates of postpartum psychological distress (RR, 1.71; 95% CI, 1.53-1.90). These women also had higher adjusted rates for antidepressant prescriptions before, during, and after the pregnancy. CONCLUSIONS: A significant psychiatric burden exists for women giving birth to children with FASD. Clinicians should recognise the high rates of psychiatric concerns facing mothers who give birth to children with FASD and should offer treatment and support to these women to improve their health and well-being and prevent further alcohol-exposed pregnancies.

A novel CCBE1 mutation leading to a mild form of hennekam syndrome: case report and review of the literature.

BACKGROUND: Mutations in CCBE1 have been found to be responsible for a subset of families with autosomal recessive Hennekam syndrome. Hennekam syndrome is defined as the combination of generalized lymphatic dysplasia (ie. lymphedema and lymphangiectasia), variable intellectual disability and characteristic dysmorphic features. The patient we describe here has a lymphatic dysplasia without intellectual disability or dysmorphism caused by mutation in CCBE1, highlighting the phenotypic variability that can be seen with abnormalities in this gene. CASE PRESENTATION: Our patient is a 5 week old child of Pakistani descent who presented to our center with generalized edema, ascites, and hypoalbuminemia. She was diagnosed with a protein losing enteropathy secondary to segmental primary intestinal lymphangiectasia. As the generalized edema resolved, it became clear that she had mild persistent lymphedema in her hands and feet. No other abnormalities were noted on examination and development was unremarkable at 27 months of age. Given the suspected genetic etiology and the consanguinity in the family, we used a combination of SNP genotyping and exome sequencing to identify the underlying cause of her disease. We identified several large stretches of homozygosity in the patient that allowed us to sort the variants found in the patient's exome to identify p.C98W in CCBE1 as the likely pathogenic variant. CONCLUSIONS: CCBE1 mutation analysis should be considered in all patients with unexplained lymphatic dysplasia even without the other features of classic Hennekam syndrome.

Integrating care for individuals with FASD: results from a multi-stakeholder symposium.

BACKGROUND: Fetal Alcohol Spectrum Disorder (FASD) has a significant impact on communities and systems such as health, education, justice and social services. FASD is a complex neurodevelopmental disorder that results in permanent disabilities and associated service needs that change across affected individuals' lifespans. There is a degree of interdependency among medical and non-medical providers across these systems that do not frequently meet or plan a coordinated continuum of care. Improving overall care integration will increase provider-specific and system capacity, satisfaction, quality of life and outcomes. METHODS: We conducted a consensus generating symposium comprised of 60 experts from different stakeholder groups: Allied & Mental Health, Education, First Nations & Métis Health, Advocates, Primary Care, Government Health Policy, Regional FASD Coordinators, Social Services, and Youth Justice. Research questions addressed barriers and solutions to integration across systems and group-specific and system-wide research priorities. Solutions and consensus on prioritized lists were generated by combining the Electronic Meeting System approach with a modified 'Nominal Group Technique'. RESULTS: FASD capacity (e.g., training, education, awareness) needs to be increased in both medical and non-medical providers. Outcomes and integration will be improved by implementing: multidisciplinary primary care group practice models, FASD system navigators/advocates, and patient centred medical homes. Electronic medical records that are accessible to multiple medical and non-medical providers are a key tool to enhancing integration and quality. Eligibility criteria for services are a main barrier to integration across systems. There is a need for culturally and community-specific approaches for First Nations communities. CONCLUSIONS: There is a need to better integrate care for individuals and families living with FASD. Primary Care is well positioned to play a central and important role in facilitating and supporting increased integration. Research is needed to better address best practices (e.g., interventions, supports and programs) and long-term individual and family outcomes following a diagnosis of FASD.

"Giving voice": Evaluation of an integrated telehealth community care model by parents/guardians of children diagnosed with fetal alcohol spectrum disorder in Manitoba.

BACKGROUND: In 2000, Manitoba began utilizing telehealth services for the assessment, diagnosis and follow-up of fetal alcohol spectrum disorders (FASDs). Since that time, the use of telehealth in Manitoba has expanded to the delivery of education and support to families caring for children with FASD in rural and remote areas of the province. The purpose of this study was to expand on a previous evaluation through a focus on the participant experience. Our objectives were thus to explore the experience of families with the telehealth process and to examine the use of telehealth in diagnostic assessment as well as follow-up post-clinical assessment. MATERIALS AND METHODS: Sixteen semistructured interviews were conducted with families who had participated in at least one diagnostic assessment and/or individual or group follow-up via telehealth offered through the Manitoba FASD Centre. RESULTS: The majority of participants reported being happy with their experience(s) using telehealth for assessment, diagnosis, and/or follow-up support. Two general themes emerged from the data. The first theme is focused on the value of telehealth use for families with children living with FASD, whereas the second theme presents various needs of this client group. CONCLUSIONS: This study provides support for the use of telehealth as an effective technology beyond diagnosis for individuals with FASD and their families. Families support the utilization of this technology and, despite its minor shortcomings, appreciate the flexibility of telehealth, which allows them to remain in their home communities, connected to their families and support systems.

"Bottom of My Own List:" Barriers and Facilitators to Mental Health Support Use in Caregivers of Children with Neurodevelopmental Support Needs.

This study investigated barriers and facilitators to mental health service use (e.g., interventions, educational programs) in caregivers of children with neurodevelopmental disorders and/or neurodevelopmental problems, as they experience high levels of distress and low help-seeking behaviour. Caregivers of children aged 0 to 12 with neurodevelopmental disorders and/or neurodevelopmental problems (N = 78) completed a mixed-method online survey about their mental health and service use. Caregiver-reported psychological distress and mental health service use were positively correlated. Most participants (66.2%) were above the clinical cut-off score for anxiety, depression, or caregiving stress; of these participants, 45.7% had not accessed mental health services for themselves within the past year. Lack of time and difficulties arranging childcare were noted barriers; patient-oriented suggestions for service improvement were provided. The findings add novel information on factors to increase mental health service use in this population. Recommendations for clinical practice for those practitioners who provide services for children with neurodevelopmental disorders and/or neurodevelopmental problems are included.

Risk and Resilience Variants in the Retinoic Acid Metabolic and Developmental Pathways Associated with Risk of FASD Outcomes.

Fetal Alcohol Spectrum Disorder (FASD) is a common neurodevelopmental disorder that affects an estimated 2-5% of North Americans. FASD is induced by prenatal alcohol exposure (PAE) during pregnancy and while there is a clear genetic contribution, few genetic factors are currently identified or understood. In this study, using a candidate gene approach, we performed a genetic variant analysis of retinoic acid (RA) metabolic and developmental signaling pathway genes on whole exome sequencing data of 23 FASD-diagnosed individuals. We found risk and resilience alleles in ADH and ALDH genes known to normally be involved in alcohol detoxification at the expense of RA production, causing RA deficiency, following PAE. Risk and resilience variants were also identified in RA-regulated developmental pathway genes, especially in SHH and WNT pathways. Notably, we also identified significant variants in the causative genes of rare neurodevelopmental disorders sharing comorbidities with FASD, including STRA6 (Matthew-Wood), SOX9 (Campomelic Dysplasia), FDG1 (Aarskog), and 22q11.2 deletion syndrome (TBX1). Although this is a small exploratory study, the findings support PAE-induced RA deficiency as a major etiology underlying FASD and suggest risk and resilience variants may be suitable biomarkers to determine the risk of FASD outcomes following PAE.

The Pediatric Autism Research Cohort (PARC) Study: protocol for a patient-oriented prospective study examining trajectories of functioning in children with autism.

INTRODUCTION: The developmentally variable nature of autism poses challenges in providing timely services tailored to a child's needs. Despite a recent focus on longitudinal research, priority-setting initiatives with stakeholders highlighted the importance of studying a child's day-to-day functioning and social determinants of health to inform clinical care. To address this, we are conducting a pragmatic multi-site, patient-oriented longitudinal investigation: the Pediatric Autism Research Cohort (PARC) Study. In young children (<7 years of age) newly diagnosed with autism, we will: (1) examine variability in trajectories of adaptive functioning from the point of diagnosis into transition to school; and (2) identify factors associated with trajectories of adaptive functioning. METHODS AND ANALYSIS: We aim to recruit 1300 children under 7 years of age with a recent (within 12 months) diagnosis of autism from seven sites: six in Canada; one in Israel. Participants will be followed prospectively from diagnosis to age 8 years, with assessments at 6-month intervals. Parents/caregivers will complete questionnaires administered via a customized online research portal. Following each assessment timepoint, families will receive a research summary report describing their child's progress on adaptive functioning and related domains. Analysis of the longitudinal data will map trajectories and examine child, family and service characteristics associated with chronogeneity (interindividual and intraindividual heterogeneity over time) and possible trajectory turning points around sensitive periods like the transition to school. ETHICS AND DISSEMINATION: Ethics approvals have been received by all sites. All parents/respondents will provide informed consent when enrolling in the study. Using an integrated knowledge translation approach, where stakeholders are directly engaged in the research process, the PARC Study will identify factors associated with trajectories of functioning in children with autism. Resulting evidence will be shared with government policy makers to inform provincial and national programs. Findings will be disseminated at conferences and published in peer-reviewed journals.

Comorbidities Affecting Children with Autism Spectrum Disorder: A Retrospective Chart Review.

Autism spectrum disorder (ASD) is a developmental disorder characterized by deficits in social interaction/communication, restricted interests, and repetitive behaviors. Recent discussions have emerged worldwide regarding the heterogeneity around presentation/etiology and comorbidities. This study aimed to determine the frequency and characteristics of comorbidities among children diagnosed with ASD in Manitoba and to evaluate differences in presentation between those with and without medical comorbidities. We conducted a retrospective chart review of >1900 electronic charts at the only publicly funded referral site for children ≤6 years requiring evaluation for ASD in Manitoba. All children aged 0-6 years diagnosed with ASD at this site between May 2016 and September 2021 were identified. χ2 and t-tests were used to compare groups. Of the total of 1858 children identified, 1452 (78.1%) were boys, 251 (13.5%) were prematurely born, and 539 (29.0%) had ≥1 medical comorbidity. Global developmental delay (GDD) was diagnosed in 428 (23.0%). The age of referral and diagnosis did not differ between groups. Comorbidities were more common among premature children (16.0% vs. 12.5%, p: 0.005) and children with comorbid GDD (34.9% vs. 18.2%, p < 0.001). Neurological comorbidities were most common (37.1%). No sex difference in the overall presence of comorbidities was found (boys = 77.1% vs. 78.5%, p: 0.518); however, girls had a higher incidence of neurological comorbidities, e.g., cerebral palsy, seizures, hypotonia (14.8% vs. 9.64%, p: 0.009), as well as genetic comorbidities (4.92% vs. 2.75%, p: 0.04). The high rates of associated neurological conditions, GDD, and prematurity add heterogeneity to this group leading to potential difficulties with prognosis and service allocation. Primary vs. secondary ASD can be a way of separating individuals based on relevant medical comorbidities.

An eHealth Program for Insomnia in Children With Neurodevelopmental Disorders (Better Nights, Better Days): Protocol for an Economic Evaluation of a Randomized Controlled Trial.

BACKGROUND: Children with neurodevelopmental disorders have a high risk of sleep disturbances, with insomnia being the most common sleep disorder (ie, chronic and frequent difficulties with going and staying asleep). Insomnia adversely affects the well-being of these children and their caregivers. Pediatric sleep experts recommend behavioral interventions as the first-line treatment option for children. Better Nights, Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD) is a 5-session eHealth behavioral intervention delivered to parents to improve outcomes (eg, Pediatric Quality of Life Inventory [PedsQL]) for their children (ages 4-12 years) with insomnia and who have a diagnosis of mild to moderate attention-deficit/hyperactivity disorder, autism spectrum disorder, cerebral palsy, or fetal alcohol spectrum disorder. If cost-effective, BNBD-NDD can be a scalable intervention that provides value to an underserved population. OBJECTIVE: This protocol outlines an economic evaluation conducted alongside the BNBD-NDD randomized controlled trial (RCT) that aims to assess its costs, efficacy, and cost-effectiveness compared to usual care. METHODS: The BNBD-NDD RCT evaluates the impacts of the intervention on children's sleep and quality of life, as well as parents' daytime functioning and psychosocial health. Parent participants were randomized to the BNBD-NDD treatment or to usual care. The economic evaluation assesses outcomes at baseline and 8 months later, which include the PedsQL as the primary measure. Quality of life outcomes facilitate the comparison of competing interventions across different populations and medical conditions. Cost items include the BNBD-NDD intervention and parent-reported usage of private and publicly funded resources for their children's insomnia. The economic evaluation involves a reference case cost-effectiveness analysis to examine the incremental cost of BNBD-NDD per units gained in the PedsQL from the family payer perspective and a cost-consequence analysis from a societal perspective. These analyses will be conducted over an 8-month time horizon. RESULTS: Research funding was obtained from the Kids Brain Health Network in 2015. Ethics were approved by the IWK Health Research Ethics Board and the University of Calgary Conjoint Health Research Ethics Board in January 2019 and June 2022, respectively. The BNBD-NDD RCT data collection commenced in June 2019 and ended in April 2022. The RCT data are currently being analyzed, and data relevant to the economic analysis will be analyzed concurrently. CONCLUSIONS: To our knowledge, this will be the first economic evaluation of an eHealth intervention for insomnia in children with neurodevelopmental disorders. This evaluation's findings can inform users and stakeholders regarding the costs and benefits of BNBD-NDD. TRIAL REGISTRATION: ClinicalTrial.gov NCT02694003; https://clinicaltrials.gov/study/NCT02694003. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/46735.

Association of Epidural Labor Analgesia With Offspring Risk of Autism Spectrum Disorders.

Importance: Epidural labor analgesia (ELA) has been associated with an increased offspring risk of autism spectrum disorder (ASD). Whether this finding may be explained by residual confounding remains unclear. Objective: To assess the association between ELA and offspring risk of ASD. Design, Setting, and Participants: Longitudinal cohort study of vaginal deliveries of singleton live infants born from 2005 to 2016 from a population-based data set linking information from health care databases in Manitoba, Canada; offspring were followed from birth until 2019 or censored by death or emigration. Data were analyzed from October 19, 2020, to January 22, 2021. Exposures: Epidural labor analgesia. Main Outcomes and Measures: At least 1 inpatient or outpatient diagnosis of ASD in offspring aged at least 18 months. For the full population and a sibling cohort, inverse probability of treatment-weighted Cox proportional hazards regression analyses were used to control for potential confounders. Results: Of the 123 175 offspring included in this study (62 647 boys [50.9%]; mean [SD] age of mothers, 28.2 [5.8] years), 47 011 (38.2%) were exposed to ELA; 2.1% (985 of 47 011) of exposed vs 1.7% (1272 of 76 164) of unexposed offspring were diagnosed with ASD in the follow-up period (hazard ratio [HR], 1.25; 95% CI, 1.15-1.36). After adjusting for maternal sociodemographic, prepregnancy, pregnancy, and perinatal covariates, ELA was not associated with an offspring risk of ASD (inverse probability of treatment-weighted HR, 1.08; 95% CI, 0.97-1.20). In the within-siblings design adjusting for baseline covariates, ELA was not associated with ASD (inverse probability of treatment-weighted HR, 0.97; 95% CI, 0.78-1.22). Results from sensitivity analyses restricted to women without missing data who delivered at or after 37 weeks of gestation, firstborn infants only, and offspring with ASD classified with at least 2 diagnostic codes were consistent with findings from the main analyses. Conclusions and Relevance: In a Canadian population-based birth cohort study, no association between ELA exposure and an increased offspring risk of ASD was found.

WITHDRAWN: Metoclopramide, thickened feedings, and positioning for gastro-oesophageal reflux in children under two years.

BACKGROUND: Gastro-esophageal reflux (GER) is the refluxing of gastric contents into the esophagus. Fifty per cent of all infants 0 to 3 months regurgitate at least once a day. This drops to 5% once infants are 10 to 12 months old. Three per cent of parents of 10 to 12 month old infants view this as a problem. OBJECTIVES: To investigate the effectiveness of thickened feeds, positioning, and metoclopramide as compared to placebo in improving the outcome of GER in developmentally normal infants aged one month to two years. SEARCH STRATEGY: Trials were identified by searching Cochrane Central Register of Controlled Trials (The Cochrane Library 2003), MEDLINE (January 1966 to 23 January 2003), EMBASE (January 1985 to 27 January 2003), and reference lists of articles. Searches in all databases were updated in April 2009. SELECTION CRITERIA: Randomised studies (parallel or cross over) which evaluated thickened feeds, positional alternations or metoclopramide for the treatment of GER in children between the age of one month and two years who were developmentally normal. DATA COLLECTION AND ANALYSIS: All three reviewers independently assessed trial quality and extracted data. Study authors were contacted for additional information. Adverse effects information was collected from the trials. MAIN RESULTS: Twenty trials involving 771 children met the inclusion criteria: eight dealt with thickened feeds, five with positioning, and seven with metoclopramide. Few comparisons could be made, and so summary measures were often made with two or three studies. Thickened feeds reduce the regurgitation severity score (standardized mean difference (SMD) -0.94;95% confidence interval -1.35 to -0.52), as well as the frequency of emesis (SMD -0.91; confidence interval -1.22 to -0.61). The reflux index was not reduced (weighted mean difference (WMD) 0.48%; 95% confidence interval -3.27 to 4.23). All five positioning studies utilized esophageal pH monitoring as their outcome measure. Elevating the head of the crib for treating reflux in the supine position is not justifiable. The seven metoclopramide studies used a variety of outcomes. Compared to placebo, metoclopramide appears to reduce daily symptoms ( SMD -0.73; 95% confidence interval -1.16 to -0.30), and reduce the reflux index (WMD -2.80%; 95% confidence interval -5.58 to -0.01). It does increase side effects. AUTHORS' CONCLUSIONS: Thickened feeds are helpful in reducing the symptoms of GER. Elevating the head of the crib in the supine position does not have any effect. Metoclopramide may have some benefit in comparison to placebo in the symptomatic treatment for GER, but that must be weighed against possible side effects. .

Using telehealth for assessment of fetal alcohol spectrum disorder: the experience of two Canadian rural and remote communities.

INTRODUCTION: Telehealth has been used for fetal alcohol spectrum disorder (FASD) diagnostic assessment in select Manitoban communities since 2000. OBJECTIVE: The purpose of this study was to evaluate the FASD telehealth program within two rural and remote Northern Manitoban communities by comparing community practices from the perspective of professionals working with the FASD diagnostic clinics in these communities. Recommendations for the further development of FASD assessment by telehealth were made to further improve current implementation and guide expansion of the FASD telehealth program within the province. METHODOLOGY: Semistructured interviews were conducted from October 19 to December 11, 2009. Participants (N = 26) were comprised of professionals, including those in the education, social services, and health sectors. RESULTS AND RECOMMENDATIONS: Two themes emerged from the data and covered the perceived strengths and drawbacks with the program, and meaningful suggestions to improve the service. Participants regarded the FASD telehealth program as successful and useful, especially given the remote location of the communities and the lack of on-site services. Recommendations addressing the barriers pertaining to the process were made from the study's findings and available scientific literature. CONCLUSIONS: This study will provide a solid basis for the successful further development of the FASD telehealth programs.

Treatment algorithm for the use of psychopharmacological agents in individuals prenatally exposed to alcohol and/or with diagnosis of fetal alcohol spectrum disorder (FASD).

Psychotropic medication treatment of individuals who have experienced prenatal alcohol exposure (PAE) has lagged behind psychosocial interventions. Multiple psychotropic medications are often prescribed for those diagnosed with a range of neurodevelopmental disabilities and impairments of PAE (neurodevelopmental disorder associated with prenatal alcohol exposure and/or fetal alcohol spectrum disorder [ND-PAE/FASD]). Despite the diverse comorbid mental disorders, there are no specific guidelines for psychotropic medications for individuals with ND-PAE/FASD. When prescribed, concerned family members and caregivers of individuals with ND-PAE/FASD reported that polypharmacy, which was typical and adverse effects render the psychotropic medications ineffective. The objective of this work was to generate a treatment algorithm for the use of psychopharmacological agents specifically for individuals with ND-PAE/FASD. The development of decision tree for use to prescribe psychotropic medications incorporated findings from previous research and the collective clinical experience of a multidisciplinary and international panel of experts who work with individuals with ND-PAE/FASD, including an algorithm specialist. After multiple meetings and discussions, the experts reached consensus on how best to streamline prescribing along neurodevelopmental clusters. These were subdivided into four ligand-specific, receptor-acting medication targets (hyperarousal, emotional dysregulation, hyperactive/neurocognitive, and cognitive inflexibility). Each cluster is represented by a list of common symptoms. The experts recommended that prescribers first ensure adequate psychosocial and environmental, including sufficient dietary, exercise, and sleep support before prescribing psychotropic medications. Treatment then progresses through three steps of psychotropic medications for each cluster. To support established treatment goals, the most function impairing clusters are targeted first.

In Utero Antidepressants and Neurodevelopmental Outcomes in Kindergarteners.

OBJECTIVES: To determine if in utero selective serotonin reuptake inhibitor (SSRI) or selective serotonin norepinephrine inhibitor (SNRI) exposure is associated with developmental vulnerability in kindergarten among children whose mothers were diagnosed with prenatal mood or anxiety disorder. METHODS: Linkable administrative data were used to create a population-based cohort of 266 479 mother-child dyads of children born in Manitoba, Canada, between 1996 and 2014, with follow-up through 2015. The sample was restricted to mothers who had a mood or anxiety disorder diagnosis between 90 days before conception (N = 13 818). Exposed women had ≥2 SSRI or SNRI dispensations during pregnancy (n = 2055); unexposed mothers did not have a dispensation of an SSRI or SNRI during pregnancy (n = 10 017). The Early Development Instrument (EDI) was used to assess developmental health in kindergarten children. The EDI is a 104-component kindergarten teacher-administered questionnaire, encompassing 5 developmental domains. RESULTS: Of the 3048 children included in the study who met inclusion criteria and had an EDI, 21.43% of children in the exposed group were assessed as vulnerable on 2 or more domains versus 16.16% of children in the unexposed group (adjusted odds ratio = 1.43; 95% confidence interval 1.08-1.90). Children in the exposed group also had a significant risk of being vulnerable in language and/or cognition (adjusted odds ratio = 1.40; 95% confidence interval 1.03-1.90). CONCLUSIONS: Exposure to SSRIs or SNRIs during pregnancy was associated with an increased risk of developmental vulnerability and an increased risk of deficits in language and/or cognition. Replication of results is necessary before clinical implications can be reached.

Barriers and facilitators to treating insomnia in children with autism spectrum disorder and other neurodevelopmental disorders: Parent and health care professional perspectives.

BACKGROUND/AIMS: Insomnia is highly prevalent in children with neurodevelopmental disorders (NDDs), yet little research exists on sleep treatment access, utilization, and provision in this population. This study explores barriers and facilitators to access, use, and provision of treatment for sleep problems as experienced by parents of children with NDDs, including Autism Spectrum Disorder (ASD), Attention-Deficit/Hyperactivity Disorder (ADHD), Cerebral Palsy (CP) and Fetal Alcohol Spectrum Disorder (FASD), and health care professionals who work with children with these conditions. METHOD: Transcripts from online focus groups and interviews, conducted separately with parents of children with NDDs (n = 43) and health care professionals (n = 44), were qualitatively analyzed using content analysis for key themes. RESULTS: Barriers included limited access to/availability of treatment, lack of knowledge/training, NDD-specific factors (e.g., symptoms, medications, and comorbidities), parent factors (e.g., capacity to implement treatment, exhaustion), and the challenging, intensive nature of sleep treatment. Facilitators included positive beliefs and attitudes, education, support, and ability to modify treatments for NDD symptoms. Barriers and facilitators were similar across all four NDDs. CONCLUSIONS: Results highlight a need for more education about sleep in NDDs and to develop accessible interventions, as well as the potential of a transdiagnostic approach to sleep treatment in this population.

An eHealth insomnia intervention for children with neurodevelopmental disorders: Results of a usability study.

BACKGROUND: Sleep problems, particularly insomnia, are highly prevalent in children with neurodevelopmental disorders (NDD) and can negatively affect health and development. eHealth interventions may increase access to evidence-based care for insomnia for children with NDD, as programs are rare in most communities. Better Nights, Better Days (BNBD) is an online, parent-implemented intervention for pediatric insomnia in typically developing 1- to 10-year-olds. AIMS: The present study examined whether parents of children with NDD perceived the original BNBD to be usable, acceptable, and feasible, and what modifications might be necessary to adapt it for children with NDD. METHODS AND PROCEDURES: Twenty Canadian parents/caregivers of children aged 4-10 years with NDD and insomnia implemented the BNBD intervention with their children, and completed usability questionnaires. Questionnaire data were analyzed quantitatively (descriptive statistics) and qualitatively (thematic analysis). OUTCOMES AND RESULTS: Participants reported the intervention to be usable, useful, acceptable, and feasible. Several modifications were suggested to make the intervention more appropriate and acceptable for use with children with NDD. CONCLUSIONS AND IMPLICATIONS: Results support a largely transdiagnostic approach to treating sleep in children with NDD, and will inform the development of BNBD for Children with Neurodevelopmental Disorders (BNBD-NDD).