STUDY OBJECTIVES:The transition from Standard Time (ST) to Daylight Saving Time (DST) is associated with health, safety, economic, and other risks, and there is broad public support to "do away" with the change. However, most legislators have proposed permanent DST (pDST), contrary to medical and scientific recommendations. There is an urgent need to garner public support for legislation that would enact permanent Standard Time (pST), not pDST. METHODS:We employed a method called Design Thinking to uncover opportunities to design public communication strategies that garner public opinion supporting pST. As a first step, we recruited a multidisciplinary group (n = 19) of individuals with diverse expertise (e.g., sleep/circadian rhythms, design, policy/legislation). Attendees gave talks on their area of expertise then broke into groups to discuss why pDST is viewed positively by the public and data informing the medical and scientific endorsement for pST over pDST. During each activity, participant wrote down their reactions on sticky notes. Sticky notes were analyzed qualitatively to identify the primary themes. Finally, participants were instructed to create news headlines declaring a hypothetical future event in which pST was enacted. RESULTS:The reaction exercise generated 72 sticky notes. Themes regarding why pDST is viewed favorably included perception of longer days, social connections, freedom, and summer. Themes relating to the reasons pST should be preferred included better health and sleep, improved alertness, and learning/productivity. Participants identified potential 11 headlines, many of which emphasized health or cost savings associated with pST. CONCLUSIONS:Design Thinking is an under-explored but effective tool for uncovering potential barriers and brainstorming approaches for engendering support of evidence-based pST legislation. Statement of Significance The transition from Standard Time to Daylight Saving Time is associated with health, safety, economic, and other concerns. There is broad public support to "do away" with the clock change, but legislative efforts have proposed permanent Daylight Savings Time, which is contrary to medical and scientific society recommendations. There is an urgent need to garner public support for evidence-based clock time legislation, which would be for permanent Standard Time. We employed Design Thinking methodology with a multidisciplinary group of stakeholders, including sleep/circadian rhythms researchers, design experts, and policymakers. The results of the Design Thinking activities illuminated themes relating to the barriers to evidence-based clock time legislation, and opportunities for designing evidence-based slogans and messages.

STUDY OBJECTIVES:Changes in sleep-wake patterns are synonymous with the developmental transition to adolescence. To examine the trajectory of sleep-wake patterns in adolescents with autism spectrum disorder (ASD) compared to typically developing (TD) adolescents. METHODS:The total sample consisted of 244 participants, 140 with ASD and 104 who were TD. Sleep data were collected annually in a 4-year longitudinal study on pubertal development, at four time points (10-13 years, 11-14 years, 12-15 years, and 13-16 years). Changes in self-reported weekday and weekend bedtime and waketime across pubertal status were compared between TD and ASD participants, using mixed effects models adjusted for sex, reported night wakings, melatonin use and a diagnosis by puberty interaction. A repeated measures adjusted proportional odds model was used to model reported daytime sleepiness using the same independent variables. RESULTS:The ASD and TD groups differed in the change in bedtime across pubertal stages (diagnosis by puberty interaction, X2 = 24.27, df = 3, p < 0.001). At time 1 (ages 10-13 years), bedtime was comparable in the autism and TD groups for both weekdays and weekends. As Tanner stage progressed, the TD group had later bedtimes compared to those with ASD. Moreover, there was a significant diagnosis by puberty interaction in daytime sleepiness (X2 = 20.71, df = 3, p = 0.001) characterized by TD youth endorsing greater daytime sleepiness at later pubertal stages than ASD youth. CONCLUSIONS:Autistic and TD adolescents exhibit differences in bedtime and daytime sleepiness with pubertal development. These differences may be related to hormonal differences or behavioral factors in these populations and warrant further study.

BACKGROUND:Despite improvements in hemoglobin A1c among adolescents with type 1 diabetes (T1D) over the past several years, most are still not meeting recommended glycemic targets, placing them at elevated risk for acute and long-term health complications. Thus, there is a critical need for novel approaches to improve diabetes management in adolescents with T1D. Insufficient and inconsistent sleep affects glycemic outcomes directly through decreased insulin sensitivity, and indirectly via compromised executive function in adolescents, reducing their ability to effectively manage T1D. Via a randomized controlled trial of 150 adolescents (age 11-17 years) with T1D, we will evaluate the effects of a sleep-promoting behavioral intervention that includes individual coaching on sleep duration and timing. We hypothesize that adolescents randomized to the Sleep Coach intervention will exhibit significantly longer sleep duration and reduced sleep variability as compared to those who receive enhanced usual care, consisting of additional diabetes education materials and text messages. Effects of the sleep-promoting intervention on executive function, glycemic outcomes (hemoglobin A1c, Time in Range) and diabetes management will be evaluated. METHODS:Primary outcomes (sleep duration and timing) and secondary outcomes (executive function, assessed with NIH Toolbox measures and caregiver reports, and glycemic outcomes) are assessed over 12 months. Intent-to-treat analysis will be used to evaluate efficacy of the intervention. CONCLUSION:If efficacious, Sleep Coach has the potential to improve both cognitive and glycemic outcomes in adolescents with T1D. This individualized, interactive, manualized behavioral intervention can be delivered remotely by trained staff, with the potential for wide dissemination.

Though it is widely prescribed for improving sleep of children with autism and other neurogenetic disorders, there is a need for practical guidance to clinicians on the use of melatonin for managing insomnia in this population. Because data were either lacking or inconclusive, a task force was established by the International Pediatric Sleep Association (IPSA) to examine the literature based on clinical trials from 2012 onwards. A summary of evidence pertaining to melatonin’s utility and potential side effects, practice-related caveats, and insights for use are published herewith.

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.

Although polygenic scores (PGS) for autism have been related to various psychiatric and medical conditions, most studies to date have been conducted in highly ascertained populations. We aimed to identify the psychiatric and physical comorbidities associated with autism PGS in a health care setting.

This research evaluated the feasibility of actigraphy to measure sleep and physical activity in children (ages 2–8 years) with autism spectrum disorder (ASD). We also explored associations between sleep and physical activity. Validated screening measures established eligibility. Questionnaires, diaries, and 5 days and 5 nights of actigraphy monitoring were used to collect data. Of the 32 children enrolled, 27 (84.4

Children with autism spectrum disorder (ASD) report high rates of sleep problems. In 2012, the Autism Treatment Network/ Autism Intervention Research Network on Physical Health (ATN/AIR-P) Sleep Committee developed a pathway to address these concerns. Since its publication, ATN/AIR-P clinicians and parents have identified night wakings as a refractory problem unaddressed by the pathway. We reviewed the existing literature and identified 76 scholarly articles that provided data on night waking in children with ASD. Based on the available literature, we propose an updated practice pathway to identify and treat night wakings in children with ASD.

This White Paper addresses the current gaps in knowledge, as well as opportunities for future studies in pediatric sleep. The Sleep Research Society’s Pipeline Development Committee assembled a panel of experts tasked to provide information to those interested in learning more about the field of pediatric sleep, including trainees. We cover the scope of pediatric sleep, including epidemiological studies and the development of sleep and circadian rhythms in early childhood and adolescence. Additionally, we discuss current knowledge of insufficient sleep and circadian disruption, addressing the neuropsychological impact (affective functioning) and cardiometabolic consequences. A significant portion of this White Paper explores pediatric sleep disorders (including circadian rhythm disorders, insomnia, restless leg and periodic limb movement disorder, narcolepsy, and sleep apnea), as well as sleep and neurodevelopment disorders (e.g. autism and attention deficit hyperactivity disorder). Finally, we end with a discussion on sleep and public health policy. Although we have made strides in our knowledge of pediatric sleep, it is imperative that we address the gaps to the best of our knowledge and the pitfalls of our methodologies. For example, more work needs to be done to assess pediatric sleep using objective methodologies (i.e. actigraphy and polysomnography), to explore sleep disparities, to improve accessibility to evidence-based treatments, and to identify potential risks and protective markers of disorders in children. Expanding trainee exposure to pediatric sleep and elucidating future directions for study will significantly improve the future of the field.

Background:Autistic adults have high rates of co-occurring health conditions, suicide, and premature mortality, yet often experience health care barriers and poor health outcomes. A better understanding of the health care needs and experiences of autistic adults is essential for improving the health care system and patient experience.Methods:This study examined the perspectives of autistic adults regarding their health care experiences in primary care and other settings and their suggestions for improvement using both qualitative and quantitative methods. Twenty autistic adults (aged 18-35 years, 65% male) completed surveys and individual semi-structured interviews.Results:Qualitative data analysis results revealed 10 subthemes across 3 overarching themes: (1) system- and clinic-level factors affect access to care, (2) aspects of the clinic environment affect health care experiences, and (3) provider knowledge and practices affect health care experiences. Within the first theme, participants described barriers to obtaining services, including scheduling logistics, costs and inadequate insurance coverage, and transportation barriers. The second theme focused on aspects of the clinic environment that participants found especially relevant to their health care experiences and that required specific accommodations. This included sensory input, anxiety-provoking situations and procedures, and wait time. Within the third theme, participants emphasized aspects of providers' care that affected their health care experiences. Key factors included provider knowledge about autism, communication, rapport, and individualized care and patient-provider partnerships.Conclusion:Overall, the findings point to a need for provider training and improvements to the health care delivery system to better meet the unique needs of autistic adults.

Motivation Phecodes are widely used and easily adapted phenotypes based on International Classification of Diseases codes. The current version of phecodes (v1.2) was designed primarily to study common/complex diseases diagnosed in adults; however, there are numerous limitations in the codes and their structure.Results Here, we present phecodeX, an expanded version of phecodes with a revised structure and 1,761 new codes. PhecodeX adds granularity to phenotypes in key disease domains that are under-represented in the current phecode structure-including infectious disease, pregnancy, congenital anomalies, and neonatology-and is a more robust representation of the medical phenome for global use in discovery research.Availability and implementation phecodeX is available at https://github.com/PheWAS/phecodeX.

Climate change is receiving more and more attention in the media. The signs are all around us—extreme weather events, floods in some locales, and prolonged drought with wildfires in the western United States. In the fall of 2021, 233 leading journals including Neurology® published an editorial1 urging action on climate change. Per this editorial, “we—the editors of health journals worldwide—call for urgent action to keep average global temperature increases below 1.5°C, halt the destruction of nature, and protect health.” Noting that the worst burdens of climate change fall on those of low income, the editors state, “Equity must be at the center of the global response.”

ABSTRACT:Two proposed public policies, ending seasonal clock change with a transition to permanent Standard Time and moving middle school and high school start times later, are population-based initiatives to improve sleep health. Daylight Saving Time and early school start times are associated with reduced sleep duration and increased circadian misalignment, the effects of which impact not only long-term health outcomes including obesity, cerebrovascular and cardiovascular disease, and cancer, but also mental health, academics, workforce productivity, and safety outcomes. This article highlights studies that led to the endorsement of these public policies by multiple scientific and medical organizations. Neurologists should advocate at the state and federal levels and educate the population about the importance of sleep health.

Background Although polygenic scores (PGS) for autism have been related to various psychiatric and medical conditions, most studies to date have been conducted in research ascertained populations. We aimed to identify the psychiatric and physical conditions associated with autism PGS in a health care setting. Methods We computed PGS for 12,383 unrelated participants of African genetic ancestry (AF) and 65,363 unrelated participants of European genetic ancestry (EU) from Vanderbilt’s de-identified biobank. Next, we performed phenome wide association studies of the autism PGS within these two genetic ancestries. Results Seven associations surpassed the Bonferroni adjusted threshold for statistical significance ( p = 0.05/1374 = 3.6 × 10 −5 ) in the EU participants, including mood disorders (OR (95%CI) = 1.08(1.05 to 1.10), p = 1.0 × 10 −10 ), autism (OR (95%CI) = 1.34(1.24 to 1.43), p = 1.2 × 10 –9 ), and breast cancer (OR (95%CI) = 1.09(1.05 to 1.14), 2.6 × 10 −5 ). There was no statistical evidence for PGS-phenotype associations in the AF participants. Conditioning on the diagnosis of autism or on median body mass index (BMI) did not impact the strength of the reported associations. Although we observed some sex differences in the pattern of associations, there was no significant interaction between sex and autism PGS. Finally, the associations between autism PGS and autism diagnosis were stronger in childhood and adolescence, while the associations with mood disorders and breast cancer were stronger in adulthood. Discussion Our findings indicate that autism PGS is not only related to autism diagnosis but may also be related to adult-onset conditions, including mood disorders and some cancers. Conclusions Our study raises the hypothesis that genes associated with autism may also increase the risk for cancers later in life. Future studies are necessary to replicate and extend our findings.

Autistic adults experience significant unmet healthcare needs, with opportunities for improvement in both the systems and the practitioners who serve this population. Primary care physicians/practitioners (PCPs) are a natural choice to provide comprehensive care to autistic adults but often lack experience in serving this population. This pilot study developed and tested an Extension for Community Healthcare Outcomes (ECHO) Autism model adapted from our previous work, focused specifically on training PCPs in best-practice care for autistic adults. The project was informed directly by the perspectives and preferences of autistic adults, caregivers, and PCPs. Two consecutive cohorts of PCPs participated in ECHO Autism Adult Healthcare sessions. Each cohort met 1 h twice a month for 6 months, with 37 PCPs (n = 20 in Cohort 1, and n = 17 in Cohort 2) participating. Based on findings from the first cohort, adjustments were made to refine the session preparation, curriculum, conduct of the ECHO, resources, and evaluation. After participation in the ECHO Autism program, PCP self-efficacy and satisfaction improved, while the number of perceived barriers did not change. Knowledge did not improve significantly in Cohort 1, but after adjustments to the training model, participants in Cohort 2 showed significant knowledge gains. While attention to systems of care is critical to addressing barriers in healthcare in the autistic population, the ECHO Autism Adult Healthcare model is feasible and holds promise for improving PCP satisfaction and self-efficacy in working with autistic adults.

Climate change is receiving more and more attention in the media. The signs are all around us-extreme weather events, floods in some locales, and prolonged drought with wildfires in the western United States. In the fall of 2021, 233 leading journals including Neurology (R) published an editorial(1) urging action on climate change. Per this editorial, "we-the editors of health journals worldwide-call for urgent action to keep average global temperature increases below 1.5?, halt the destruction of nature, and protect health. " Noting that the worst burdens of climate change fall on those of low income, the editors state, "Equity must be at the center of the global response. "