Incidence of pediatric narcolepsy diagnosis and management: evidence from claims data.

STUDY OBJECTIVES: To characterize the incidence of pediatric narcolepsy diagnosis, subsequent care, and potential sociodemographic disparities in a large US claims database. METHODS: Merative MarketScan insurance claims (n=12,394,902) were used to identify youth (6-17 years) newly diagnosed with narcolepsy (ICD-10 codes). Narcolepsy diagnosis and care 1-year post-diagnosis included polysomnography (PSG) with Multiple Sleep Latency Test (MSLT), pharmacological care, and clinical visits. Potential disparities were examined by insurance coverage and child race and ethnicity (Medicaid-insured only). RESULTS: The incidence of narcolepsy diagnosis was 10:100,000, primarily type 2 (69.9%). Most diagnoses occurred in adolescents with no sex differences, but higher rates in Black versus White youth with Medicaid. Two-thirds had a prior sleep disorder diagnosis and 21-36% had other co-occurring diagnoses. Only half (46.6%) had a PSG with MSLT (± 1-year post-diagnosis). Specialty care (18.9% pulmonary, 26.9% neurology) and behavioral health visits were rare (34.4%), although half were prescribed stimulant medications (51.0%). Medicaid-insured were 86% less likely than commercially insured youth to have any clinical care and 33% less likely to have a PSG with MSLT. CONCLUSIONS: Narcolepsy diagnoses occurred in 0.01% of youth, primarily during adolescence, and at higher rates for Black versus White children with Medicaid. Only half had evidence of a diagnostically required PSG with MSLT, underscoring potential misdiagnosis. Many patients had co-occurring conditions, but specialty and behavioral health care were limited. Results suggest misdiagnosis, underdiagnosis, and limited narcolepsy treatment, as well as possible insurance-related disparities. Results highlight the need to identify determinants of evidence-based pediatric narcolepsy diagnosis and management.

Variation in Caregiver-Reported Child Sleep Patterns and Problems by Family Socioeconomic Indicators.

OBJECTIVE: Previous studies of sleep patterns, as well as rates and correlates of perceived problems in early childhood, indicate variation by neighborhood-level socioeconomic indicators. The purpose of this study was to examine variation in (1) sleep patterns, behaviors, and problems by family-based socioeconomic indicators (income-to-needs ratio and caregiver education level) and (2) sociodemographic and sleep correlates of a caregiver-endorsed child sleep problem across and within socioeconomic indicator groups in a diverse sample. METHODS: Two hundred eighty-three caregiver-child dyads (ages 1-5 years) completed the Brief Child Sleep Questionnaire. Family-level socioeconomic indicators included income-to-needs ratio and caregiver educational level. RESULTS: Sleep patterns varied based on income-to-needs ratio, with children living in poverty experiencing the longest sleep onset latencies and night awakening durations and shortest nighttime sleep durations. Rates of an endorsed child sleep problem were similar across income-to-needs groups. Although sleep patterns did not vary by caregiver education level, caregivers with an education beyond high school were more likely to endorse a child sleep problem; later bedtimes, more frequent night awakenings, and greater bedtime difficulties were the strongest correlates of a perceived sleep problem in this subgroup. No specific correlates of a child sleep problem emerged for those with a high school education or less. CONCLUSION: Sleep patterns may be more robustly linked to family income-to-needs ratio, whereas perceptions of a child sleep problem may be more linked to caregiver education level. Clinicians should consider expanding sleep screening questions to include specific sleep outcomes to effectively assess child sleep and guide intervention.

Screening for Problematic Sleep in a Diverse Sample of Infants.

OBJECTIVE: To examine screening strategies for identifying problematic sleep in a diverse sample of infants. METHODS: Parents of infants (5-19 months; N = 3,271) presenting for a primary care visit responded to five screening items and the Infant Sleep Questionnaire (ISQ), a validated measure of problematic infant sleep. If parents responded affirmatively to any screening item, primary care providers received a prompt to evaluate. For each of the screening questions, we examined differences in item endorsement and criterion related validity with the ISQ. Using conceptual composites of night waking and sleep difficulty, prevalence, criterion-related validity, and concurrent demographic correlates were analyzed. RESULTS: Infants were primarily of Black race (50.1%) or Hispanic ethnicity (31.7%), with the majority (63.3%) living in economically distressed communities. Rates of problematic sleep ranged from 7.4%, for a single item assessing parental perception of an infant having a sleep problem, to 74.0%, for a single item assessing night wakings requiring adult intervention. Items assessing sleep difficulty had high (95.0-97.8%) agreement with the ISQ in identifying infants without problematic sleep, but low agreement (24.9-34.0%) in identifying those with problematic sleep. The opposite was true for items assessing night waking, which identified 91.0-94.6% of those with sleep problems but only 31.8-46.9% of those without. CONCLUSIONS: Screening strategies for identifying problematic infant sleep yielded highly variable prevalence rates and associated factors, depending on whether the strategy emphasized parent-perceived sleep difficulty or night wakings. The strategy that is most appropriate will depend on the system's goals.

Socioeconomic disadvantage and sleep in early childhood: Real-world data from a mobile health application.

OBJECTIVES: To examine whether increased socioeconomic disadvantage, indexed using a measure of community distress, was associated with variation in caregiver-reported early childhood sleep patterns and problems in a large US sample using a mobile health application (app). DESIGN: Cross-sectional. SETTING: Data were collected using the free, publicly available Johnson's Bedtime© baby sleep app. PARTICIPANTS: A total of 14,980 caregivers (85.1% mothers) of children ages 6-35.9 months (M = 13.88 months; 52.6% boys) participated in this study. MEASURES: Caregivers reported on child sleep using the Brief Infant Sleep Questionnaire-Revised. Socioeconomic disadvantage was indexed by zip code using the Distressed Communities Index (DCI), which combines seven US census indicators of socioeconomic disadvantage. DCI scores range from prosperous (lowest quintile) to distressed (highest quintile). RESULTS: Socioeconomic disadvantage was significantly associated with later bedtimes, longer sleep onset latency, and shorter nighttime and 24-hour (total) sleep duration, with children living in distressed communities showing the poorest sleep. However, caregivers living in distressed communities reported a significantly lower prevalence of overall child sleep problems (43% vs 58% in prosperous communities), and more confidence in managing child sleep (42% vs 34% in prosperous communities). CONCLUSIONS: Children living in the most distressed communities have the poorest reported sleep patterns and bedtime behaviors; however, their caregivers are less likely to report problematic child sleep. These findings highlight the need for community-level sleep health promotion interventions, as well as further investigation of caregiver perceptions about child sleep and sleep health promotion among families living in socioeconomically disadvantaged contexts.

Implementation of Infant Behavioral Sleep Intervention in a Diverse Sample of Mothers.

OBJECTIVE/BACKGROUND: Behavioral Sleep Interventions (BSI) is an efficacious class of treatment approaches for infant sleep disturbance. Little is known about BSI implementation in the real world. Objectives were to a) examine the prevalence of BSI implementation and related factors in a diverse sample of US mothers; b) assess racial-ethnic group differences; and c) examine predictors of BSI implementation. PARTICIPANTS: Participants included mothers (n= 353) with an infant (6-18 months) from one of the three racial-ethnic groups: White Hispanic (n= 113), White non-Hispanic (n= 122), Black non-Hispanic (n= 118). METHODS: Respondents completed an online survey assessing BSI implementation, familiarity, barriers, sleep knowledge, cognitions, and sleep patterns. RESULTS: Approximately one-third (36%) of the sample endorsed BSI implementation and 59% reported BSI familiarity. Black non-Hispanic mothers were more likely to report stopping a BSI prior to completion (OR = 4.92, p <.05) and more likely to hear about BSI from a health-care professional (OR = 1.32, p <.05) compared to White non-Hispanic mothers. Racial-ethnic group differences were identified for a variety of sleep practices, including bedsharing, independent sleep onset, and score on a validated measure of problematic sleep. No racial-ethnic group differences were found in BSI implementation, cognitions, or barriers. BSI implementation was predicted by BSI familiarity, more maternal education, and cognitions around infant self-soothing. CONCLUSIONS: Differential BSI implementation does not appear to be a major driver of sleep disparities, although Black non-Hispanic mothers who decide to implement BSI do report notably lower completion rates. Future studies should examine alternative mechanisms of sleep disparities as well as strategies to promote sleep health in diverse families.

Benefits of a bedtime routine in young children: Sleep, development, and beyond.

This paper presents a conceptual model and reviews the empirical evidence to support a nightly bedtime routine as a key factor in the promotion of not only healthy sleep, but also of broad development and wellbeing in early childhood. A bedtime routine embodies the characteristics of nurturing care and early child stimulation, which are deemed to be essential for positive outcomes, especially for at-risk children. Furthermore, common, adaptive components of a bedtime routine can contribute to an array of positive developmental outcomes beyond improved sleep, inclusive of language development, literacy, child emotional and behavioral regulation, parent-child attachment, and family functioning, among other outcomes. These bedtime routine components include activities in the broad domains of nutrition (e.g., feeding, healthy snack), hygiene (e.g., bathing, oral care), communication (e.g., reading, singing/lullabies) and physical contact (e.g., massage, cuddling/rocking). A bedtime routine can provide multiple benefits to child and family functioning at a time of day that many parents are present with their children. Although additional research on hypothesized routine-related child outcomes and mechanisms of action are needed, promoting a bedtime routine may be a feasible and cost-effective method to promote positive early childhood development worldwide, particularly for socioeconomically disadvantaged and other at-risk young children.

Individual and socio-demographic factors related to presenting problem and diagnostic impressions at a pediatric sleep clinic.

OBJECTIVE: Individual and socio-demographic factors have been found to be associated with sleep disturbances in children. Few studies have examined these factors among children presenting for care at pediatric sleep clinics. This study examined individual and socio-demographic factors in association with presenting problems and diagnostic impressions for new patients at an interdisciplinary pediatric sleep clinic. METHODS: Data were collected from electronic medical records of 207 consecutive patients (54% male, 59% White, Meanage = 7.73, SD = 5.62). RESULTS: Older age, female gender, and White race were associated with higher likelihood of presenting with difficulty falling asleep; younger age, male gender, and Black race were associated with higher likelihood of presenting with obstructive sleep apnea (OSA)-related concerns. Older age was associated with diagnostic impressions of inadequate sleep hygiene, insufficient sleep, circadian rhythm disorder/delayed sleep phase disorder, periodic limb movement disorder/restless legs syndrome, and insomnia, while younger age was associated with provisional OSA and behavioral insomnia of childhood (BIC) diagnoses. Male gender was associated with provisional OSA. White race was associated with BIC. Age-based analyses were also conducted to further understand the findings within a developmental context. CONCLUSIONS: Age- and gender-related findings converged with prevalence literature on pediatric sleep disorders. Race was only associated with presenting concern and BIC, and one association for neighborhood disadvantage was found within the age-based analysis. Results suggest a potential service delivery gap, with racial/ethnic minority youth being less likely to present for sleep services, despite prevalence data on the increased likelihood of sleep disturbances among these youth.

Sleep Differences by Race in Preschool Children: The Roles of Parenting Behaviors and Socioeconomic Status.

BACKGROUND AND OBJECTIVE: This study aimed to examine whether socioeconomic variables (SES) and parenting behaviors mediate differences in sleep problems between Black and White preschool-aged children. METHOD: Parents of 191 preschool-aged children (53% male; 77% White) completed questionnaires regarding SES and sleep behaviors. Parenting behaviors and SES were analyzed as mediators of differences in sleep problems between Black and White children. RESULTS: Parent behaviors related to bedtime routine and independence mediated the relationship between race and parent-reported bedtime difficulty, parent confidence managing sleep, and sleep onset latency. SES mediated the relationship between race and sleep onset latency. CONCLUSIONS: Sleep differences between Black and White preschool children were primarily mediated by parent behaviors rather than socioeconomic variables. Results may reflect differences in cultural practices and provide important information for treatment and parent-directed intervention regarding improving sleep in young children.

Cross-cultural differences in infant and toddler sleep.

BACKGROUND: To characterize cross-cultural sleep patterns and sleep problems in a large sample of children ages birth to 36 months in multiple predominantly-Asian (P-A) and predominantly-Caucasian (P-C) countries. METHODS: Parents of 29,287 infants and toddlers (predominantly-Asian countries/regions: China, Hong Kong, India, Indonesia, Korea, Japan, Malaysia, Philippines, Singapore, Taiwan, Thailand, Vietnam; predominantly-Caucasian countries: Australia, Canada, New Zealand, United Kingdom, United States) completed an internet-based expanded version of the Brief Infant Sleep Questionnaire. RESULTS: Overall, children from P-A countries had significantly later bedtimes, shorter total sleep times, increased parental perception of sleep problems, and were more likely to both bed-share and room-share than children from P-C countries, p<.001. Bedtimes ranged from 19:27 (New Zealand) to 22:17 (Hong Kong) and total sleep time from 11.6 (Japan) to 13.3 (New Zealand) hours, p<.0001. There were limited differences in daytime sleep. Bed-sharing with parents ranged from 5.8% in New Zealand to 83.2% in Vietnam. There was also a wide range in the percentage of parents who perceived that their child had a sleep problem (11% in Thailand to 76% in China). CONCLUSIONS: Overall, children from predominantly-Asian countries had significantly later bedtimes, shorter total sleep times, increased parental perception of sleep problems, and were more likely to room-share than children from predominantly-Caucasian countries/regions. These results indicate substantial differences in sleep patterns in young children across culturally diverse countries/regions. Further studies are needed to understand the basis for and impact of these interesting differences.

The need for interdisciplinary pediatric sleep clinics.

The purpose of this study was to describe the function and structure of an interdisciplinary outpatient pediatric sleep clinic. In addition, the frequency of individual and comorbid sleep diagnoses, the prevalence of comorbid medical or psychiatric disorders, and the types of treatment recommendations and referrals provided to patients at the end of their clinic visits was examined. Over a 4-month period, 265 consecutive patients were evaluated in the sleep clinic by trainees, nurses, and attendings in pulmonary medicine, neurology, and psychology. Obstructive sleep apnea was the most common diagnosis, followed by behavioral insomnia of childhood. Over half of the patients had a comorbid medical diagnosis, and 31% had a comorbid psychiatric diagnosis. Polysomnography was the most common recommendation, with 38% of patients receiving at least one behavioral recommendation. The results of this descriptive study support the need for an interdisciplinary approach to pediatric sleep medicine, providing broad training to trainees of all disciplines while improving the clinical care for children with sleep problems.

Pediatric sleep medicine: priorities for research, patient care, policy and education.

STUDY OBJECTIVE: To achieve consensus among pediatric sleep medicine practitioners on recommendations for the advancement of the field in the areas of research, clinical practice, education, and public policy. METHODS: Leading pediatric sleep medicine researchers and clinicians, in collaboration with Brown Medical School, convened a conference to discuss the state of the field. Participants engaged in multiple discussion panels and work groups, ultimately creating recommendations to advance basic and clinical research, clinical practice, sleep education, and public policy. RESULTS: Participants reached agreement on the major challenges facing the field. Key points of consensus were the need to conduct long-term epidemiologic studies of sleep patterns and sleep disorders in children, standardize polysomnography and other sleep-measurement methodologies, examine the links between insufficient and disrupted sleep in the pediatric population and physical and mental health outcomes, and develop clinical standards of practice. Attendees also agreed on the need to educate more medical health practitioners and the public on pediatric sleep. The importance of research on sleep in children and adolescents to inform public policy decisions was also endorsed. CONCLUSIONS: Pediatric sleep medicine is a related, but unique, discipline within the broader field of sleep medicine. Additional research, both basic and clinical, on all aspects of children's sleep is necessary to elucidate the neurophysiologic basis of normal sleep development; to establish a solid foundation for the evaluation, diagnosis, and treatment of pediatric sleep disorders; and to formulate evidence-based public policy in sleep health.