Children with neurodevelopmental disabilities are at high risk for sleep problems, which can negatively affect their health and that of their families. Improving sleep may be one of the most effective ways to improve behaviour, mood, positive social interaction, attention and learning, and reduce future risks for poor metabolic and mental health. While insomnia is the most common concern, increased rates of other sleep disorders are also found in this population. Sleep problems require prompt identification and intervention, which includes recognizing or ruling out contributory medical conditions. Most sleep issues can be addressed through measures that improve sleep habits/hygiene alongside behavioural strategies that respect cultural diversity and parental priorities. If behavioural strategies fail or are only partially successful, melatonin can be used, with medical supervision. Other medication strategies may be needed in difficult cases, but these should be carefully considered and monitored because most have potential for impairing sleep quality or side effects.

This study was conducted to determine whether school-aged autistic youth received routine vaccines at a lower rate than their non-autistic peers. In Nova Scotia (NS), Canada, vaccines routinely delivered in early adolescence are administered to Grade 7 students through a school-based Public Health vaccination program. NS youth eligible to receive Grade 7 vaccinations between 2011 and 2017 were included in this study. Autism spectrum disorder (ASD) diagnoses were determined from administrative health data. Rates of receipt of any Grade 7 vaccine and of individual vaccines were compared between autistic and non-autistic youth. Subgroup analyses included comparing Grade 7 vaccine receipt between autistic youth and their non-autistic siblings and early childhood vaccine receipt between autistic and non-autistic cohorts. The rates of receipt of any vaccine were 73

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.

Objective Pediatric insomnia is one of the most commonly reported disorders, especially in children with neurodevelopmental disorders. Better Nights, Better Days for Children with Neurodevelopmental Disorders ( BNBD-NDD ) is a transdiagnostic, self-guided, eHealth behavioral sleep intervention developed for parents of children with NDDs ages 4–12 years with insomnia. After usability testing, a randomized controlled trial (RCT) was conducted to evaluate the effectiveness of the BNBD-NDD program. By interviewing RCT participants after their outcome measures were collected, we sought to determine the barriers and facilitators that affect the reach, effectiveness, adoption, implementation, and maintenance of the BNBD-NDD intervention, as well as to assess whether barriers and facilitators differ across levels of engagement with the program and NDD groups. Method Twenty parents who had been randomized to the treatment condition of the RCT participated in this study. These parents participated in virtual semi-structured qualitative interviews about their experiences with the BNBD-NDD program. Rapid analysis was used, in which one researcher facilitated the interview, and another simultaneously coded the interview using the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. Results Overall, more facilitators than barriers were identified for Reach, Effectiveness, Implementation, and Maintenance, whereas for Adoption more barriers emerged. Participants who were engaged reported more facilitators about the BNBD-NDD program design and behavior change, while unengaged participants mentioned needing more support to help facilitate their use of the program. Lastly, parents of children with ASD reported more facilitators and more barriers than did parents of children with ADHD. Conclusion With this feedback from participants, we can optimize BNBD-NDD for large-scale implementation, by modifying the program to better support parents, helping them implement the strategies effectively at home, and increasing the accessibility of this evidence-based treatment.

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.

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).

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.

Objective: Although stimulant medications, such as methylphenidate hydrochloride (MPH), are effective at reducing the core symptoms of Attention-Deficit/Hyperactivity Disorder (ADHD), they may also disrupt children's sleep. This study aimed to investigate the acute impact of extended-release MPH on sleep using both actigraphy and polysomnography (PSG). Method: Participants were 26 medication-naive newly and rigorously diagnosed children with ADHD (23 males; 3 females) with a mean age of 8 years, 8 months (SD = 24.5mos) who were enrolled in a clinically-administered crossover medication trial with 2 conditions: 2 weeks of placebo and 2 weeks of MPH treatment. The effect of condition on sleep variables as measured by actigraphy (primary outcome) and PSG (secondary outcome) was analyzed using repeated measures MANOVAs. Results: Based on actigraphy data, total sleep time was significantly reduced by 30 minutes and sleep onset latency was significantly increased by 30 minutes in the MPH condition compared to the placebo condition (p<0.001). No differences were found in sleep efficiency. No statistically significant differences were found for the same variables assessed by PSG; however, the means were in the same direction as the actigraphy data. There was a significant increase in the relative percentage of stage N3 sleep by 3.2% during MPH treatment (p<0.05). Conclusions: Increased sleep onset latency resulting in reduced total sleep time, which has been linked to poorer daytime functioning, is a potential adverse effect of stimulant medication which may require management to optimize outcome.

Objectives/background: This paper outlines the current state of Canadian training, clinical services, research, and advocacy initiatives related to non-respiratory sleep disorders, with a specific focus on insomnia, the most common sleep problem in children. Methods: Information for this narrative review was collected from peer-reviewed publications, web-resources, and personal communications and experiences. Results: It is estimated that approximately one-third of Canadian children and youth present with insomnia, and that this is impacting their physical and mental health, as well as learning in school. Training in pediatric sleep is limited and highly inconsistent within and across disciplines. While there are some publicly and privately funded pediatric sleep services available, these are mostly focused on respiratory sleep problems and are not equally accessible across the country. Conclusions: Pediatric assessment and treatment services for non-respiratory sleep disorders needs to be more integrated into the Canadian health care system. (C) 2018 Elsevier B.V. All rights reserved.

Approximately 17.5% of youth with autism spectrum disorder (ASD) are treated with second-generation antipsychotics (SGAs). While SGAs have been found to reduce irritability and associated behaviours in youth with ASD, a range of side effects has been reported. Therefore, careful monitoring of youth taking these medications is imperative. However, as the core and associated symptoms of ASD can make medical procedures challenging, monitoring the safety of SGAs may be particularly difficult in this population. To date, there has been little investigation of how closely physicians monitor SGA side effects in youth with ASD or the barriers that they face in doing so. To begin to understand physicians’ current practices in SGA monitoring and the challenges of monitoring SGAs in youth with ASD. An online questionnaire that was completed by 31 specialist physicians serving children and adolescents with ASD in one region of Canada. Our survey examined physicians’ reports of ordering vs. completion of monitoring tasks recommended by the Canadian Alliance for Monitoring Effectiveness and Safety of Antipsychotic Medications in Children, as well as their perceptions of factors relevant to SGA safety monitoring in youth with ASD. Of the monitoring tasks queried, physicians were most likely to measure height, weight, and blood pressure at baseline and as part of ongoing follow-up. Waist circumference measurements and electrocardiograms (ECGs) were the monitoring tasks least often carried out at both time points. Fasting and non-fasting bloodwork were frequently not ordered at baseline, but were somewhat more likely to be ordered at follow-up. Neurological exams were attempted more often at baseline than at follow-up. As expected, physicians indicated that ECG and bloodwork were the procedures that youth with ASD have the most difficulty completing successfully. When asked their perspectives on factors that impede completion of these procedures, physicians identified youth distress, activity level, and refusal, as well as family anticipatory anxiety, previous failed attempts, and competing commitments, as the most significant barriers. Our results indicate inconsistent physician practices in ordering/completing SGA various monitoring tasks at baseline and follow-up. Further, our findings suggest that many youth with ASD struggle to complete successfully the medical procedures required for thorough SGA monitoring. Additional research aimed at supporting physicians in their monitoring of SGAs and youth with ASD and their families in successfully completing associated monitoring tasks is indicated.

Children with neurodevelopmental disorders (NDD) are at high risk for sleep problems, especially insomnia. It is currently not known whether behavioural sleep interventions developed for typically developing (TD) children are effective for children with NDD, and if interventions need to be modified for each diagnostic group. The aim of this systematic review was to identify and evaluate commonalities, trends in outcomes, and the methodological quality of parent-delivered behavioural sleep interventions for children with NDD, specifically Attention-Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), Cerebral Palsy, and Fetal Alcohol Spectrum Disorder. Nine databases were searched. A total of 40 studies met eligibility criteria. The majority of studies were conducted with ASD and ADHD populations. Common sleep problems were evident across the NDD populations. The most frequently reported included bedtime resistance, night-waking, early morning awakening, and co-sleeping. The most common interventions used were implementation of healthy sleep practices, reinforcement, graduated extinction, and faded bedtime. All studies reported at least one behavioural treatment component as effective. Commonalities across NDD populations, as well as the TD population, for both sleep problems reported and behavioural interventions implemented, suggest the feasibility of developing a transdiagnostic behavioural sleep intervention suitable for children with a range of NDD.

Resume Objectif Mettre a jour les Lignes directrices consensuelles canadiennes 2011 en matiere de soins primaires aux adultes ayant une deficience developpementale. Methodes Des medecins de famille et d’autres professionnels de la sante experimentes dans les soins aux personnes ayant des DID ont examine et synthetise les recentes connaissances empiriques, d’ecosystemes, expertes et experientielles. Un systeme a ete concu pour categoriser la qualite des recommandations. Recommandations Les adultes ayant des DID sont un groupe heterogene de patients qui presentent des affections medicales et des facteurs qui influent sur leur sante, qui different de ceux qui touchent les autres membres de la communaute de par leur nature, leurs manifestations, leur gravite ou leur complexite. Ces personnes necessitent une approche de soins et des interventions adaptees a leurs besoins. Les presentes lignes directrices offrent des conseils en matiere de normes de soins. Nous avons incorpore des references a des outils cliniques et a d’autres ressources pratiques. Les approches de soins decrites ici s’appliquent aussi a d’autres groupes de patients ayant un deficit cognitif ou de la communication, ou d’autres deficits des fonctions adaptatives. Conclusion A titre de fournisseurs de soins de premiere ligne, les medecins de famille jouent un role vital de promotion de la sante et de bien-etre aupres des adultes ayant des DID. Ces lignes directrices peuvent les aider a prendre des decisions avec les patients et les aidants naturels.

OBJECTIVE:To update the 2011 Canadian guidelines for primary care of adults with intellectual and developmental disabilities (IDD).METHODS:Family physicians and other health professionals experienced in the care of people with IDD reviewed and synthesized recent empirical, ecosystem, expert, and experiential knowledge. A system was developed to grade the strength of recommendations.RECOMMENDATIONS:Adults with IDD are a heterogeneous group of patients and have health conditions and factors affecting their health that can vary in kind, manifestation, severity, or complexity from those of others in the community. They require approaches to care and interventions that are adapted to their needs. These guidelines provide advice regarding standards of care. References to clinical tools and other practical resources are incorporated. The approaches to care that are outlined here can be applied to other groups of patients that have impairments in cognitive, communicative, or other adaptive functioning.CONCLUSION:As primary care providers, family physicians play a vital role in promoting the health and well-being of adults with IDD. These guidelines can aid their decision making with patients and caregivers.

Insomnia, which is related to daytime deficits and is a common problem for children with neurodevelopmental disorders (NDDs), is often successfully treated with behavioral strategies. However, there are barriers to accessing these treatments, and there has been little research examining what these interventions need to be usable and effective. The goal of this study was to gain consensus from experts in the field on the key components of an eHealth, parent-implemented, intervention program aimed at improving sleep in children with attention-deficit/hyperactivity disorder, autism spectrum disorder, cerebral palsy, and fetal alcohol spectrum disorder. This was achieved using the Delphi method, which involves asking participants to respond to open-ended questions about a topic of interest and then, in iterative rounds, to rate the recommendations that were made by the group. In the current study, participants (27 responders in the first round, 21 in the second, and 18 in the third) rated a total of 131 recommendations. Of those 131 recommendations, 52 items had high importance and high consensus and were deemed to be priority items to consider for creating an eHealth, parent-delivered, behaviorally-based intervention for insomnia in children with NDD. Furthermore, 75% (n = 84) of the 112 recommendations from the first round were believed to be applicable across all 4 NDD groups, thus providing evidence of the potential for a transdiagnostic intervention.

OBJECTIVE:To demonstrate how family physicians can contribute to a piece of the journey of improving quality-of-life outcomes for people with intellectual and developmental disabilities (IDD) when they undergo the transition from adolescence to adulthood.SOURCES OF INFORMATION:The "Primary care of adults with intellectual and developmental disabilities. 2018 Canadian consensus guidelines" literature review and interdisciplinary input.MAIN MESSAGE:Family physicians should be proactive in anticipating and supporting the transition of people with IDD from adolescence to adulthood. Interventions should be guided by a developmental perspective regarding the person with IDD and a life-cycle approach to supporting families. Family physicians also have a role in helping people with IDD and their families to navigate successfully through changing community-based support systems in their province, especially health care and social services systems. Therefore, family physicians should be aware of current services available in their regions.CONCLUSION:Community and team-based family physicians can optimize the quality of life of people with IDD and their families by adopting a proactive developmental and systems approach to preparing youth with IDD for adulthood. In doing so, they exemplify the 4 principles of family medicine.

Sleep is important for children’s physical, cognitive, and social functioning. The most common sleep disorder contributing to inadequate sleep and daytime impairments in pediatric populations is insomnia. There are both biological and behavioral factors that can contribute to insomnia; therefore, understanding sleep processes, how sleep changes throughout development, and which common behaviors influence sleep is important. Measurement of sleep through both objective and subjective measures plays an important role in the identification, diagnosis, and intervention of insomnia. First-line treatment for insomnia includes psychoeducation, healthy sleep practices, and behavioral and cognitive strategies. Children with special needs are at especially high risk for sleep problems, and treatment of insomnia in these populations should aim to minimize sleep disturbances without increasing other comorbid symptoms. Moving forward, healthcare professionals require access to more comprehensive education on pediatric sleep, and greater public awareness of the importance of sleep and health is needed.

Over the past two decades, the words 'autism' and 'vaccination' have often been linked and mired in controversy. In this commentary, we raise a different question about autism spectrum disorder (ASD) and vaccines: Are school-aged youth with ASD undervaccinated and, if so, why? There are several reasons why youth with ASD might be undervaccinated, including: belief in a vaccine-ASD link, challenges faced by youth with ASD when seeking health care and vaccine hesitancy factors that affect the general population. Possible undervaccination in this group is concerning given the prevalence of ASD and the key role of vaccinations in preventing infectious diseases. More research is needed to establish definitively whether youth with ASD are undervaccinated and to understand facilitators and barriers to vaccination for this population. This would help public health officials to develop and implement targeted policy and practice changes to increase vaccination uptake in youth with ASD, thereby increasing immunization equity.

Marrow donation is of no medical benefit to a donor. Altruism drives the willingness to donate in most cases. HLA matched siblings are frequently under strong pressure to donate; older siblings may be able to give consent or assent whereas younger children cannot. Siblings of any age with significant developmental delays frequently cannot consent, nor assent, and are therefore vulnerable. Safeguards are needed to enusre they are protected. A 7-year-old boy was diagnosed with high-risk T-cell Acute Lymphoblastic Leukaemia (WBC 383 x 109/L, with large mediastinal mass). He failed to achieve remission by day +28, but did so by Day +42 after additional induction chemotherapy. Due to high risk features he was referred for stem cell transplant. His 13 year-old was HLA-identical, but suffered with severe autism, seizures, global developmental delay and apraxia, migraines and celiac disease, requiring 24-hour care. She was unable to consent or assent to treatment. She was initially declined as a donor due to her medical problems and potential harm to her from the harvest procedure, but no suitable unrelated alternate donor could be found. Parents were counselled regarding her suitability as a donor, taking into account medical and neurodevelopmental problems and a full arms-length consult by developmental paediatrics was sought using American Academy of Pediatrics guidelines1 ensuring she fulfilled appropriate conditions for her to be considered as a donor:No other suitable alternate source of stem cells is availableDonor and recipient have a strong, positive personal relationshipStrong chance of beneficial result for recipient from the donationClinical, psychological and emotional risks for the donor are minimisedInformed Parental consent and donor assent (when possible) be obtained The SCT team was advised she could be a donor, parents consented for her to donate, and a plan was made to minimise distress during harvest, including harvesting at her local hospital, with full developmental and ChildLife supports available. SCT was successful and the patient is now 5 years post-transplant and well. The donor suffered no short, or long-term harm from the donation. Vulnerable minors with medical and neurodevelopmental problems can be stem cell donors, but strong safeguards must be in place to ensure their rights and safety are assured. A separate team to advocate for the donor's rights during assessment is recommended.

Context Cardiovascular disease is the most prevalent chronic medical condition in Canada. A strategy of managing cardiovascular disease risk based on routinely performing personalized risk estimates and progressively targeting interventions toward risk factors can reduce morbidity and mortality. One barrier to the widespread adoption of such a risk stratification approach in clinical practice is the lack of an easy-to-use tool that provides risk-based recommendations and encourages shared decision making. Objective To develop a patient-centred, clinical decision support tool for the primary prevention of cardiovascular disease that encourages evidence-based decision making. Design Systematic review. Methods The clinical practice guideline database of the Canadian Medical Association was reviewed for guidelines focused on the primary prevention of cardiovascular disease in adult populations. Review of the guidelines led to a search of PubMed for multivariable risk algorithms (key words: Framingham heart study) and a search of the Cochrane database for meta-analyses of recommended interventions (key words: cardiovascular disease and prevention); if meta-analyses were unavailable, PubMed was searched for randomized controlled trials. Results We created a Web-based application (www.cardiovascularcalculator.radarhill.net) that provides personalized multivariable risk estimates of developing coronary artery disease and stroke over the next 10 years based on age, sex, smoking status, family history of early coronary artery disease, systolic blood pressure, use of antihypertensive medication, and lipid profile. The application also presents personalized, risk-based recommendations for lifestyle modification and pharmaceutical intervention from 5 Canadian guidelines for the prevention of cardiovascular disease, in addition to modified risk estimates for developing cardiovascular disease over the next 10 years for selected interventions (smoking cessation, treatment of blood pressure with various agents and to various targets, treatment with cholesterol-lowering agents, and treatment with antiplatelet medication) and risk estimates of developing treatment-related adverse events. Outcomes are presented both graphically and numerically, as absolute risks with accompanying numbers-needed-to-treat estimates and optional confidence intervals. Conclusion We have developed an interactive, Web-based clinical decision support tool that can conveniently assess coronary heart disease and stroke risk and provide personalized, guideline-based recommendations with evidence-based risk reduction estimates for various lifestyle and pharmaceutical interventions. Research | FMF Research Proceedings 2014