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.

Neighborhood Disadvantage, Quality of Life, and Symptom Burden in Children with Mild Sleep-disordered Breathing.

Rationale: Neighborhood disadvantage (ND) has been associated with sleep-disordered breathing (SDB) in children. However, the association between ND and SDB symptom burden and quality of life (QOL) has not yet been studied.Objectives: To evaluate associations between ND with SDB symptom burden and QOL.Methods: Cross-sectional analyses were performed on 453 children, ages 3-12.9 years, with mild SDB (habitual snoring and apnea-hypopnea index < 3/h) enrolled in the PATS (Pediatric Adenotonsillectomy Trial for Snoring) multicenter study. The primary exposure, neighborhood disadvantage, was characterized by the Child Opportunity Index (COI) (range, 0-100), in which lower values (specifically COI ⩽ 40) signify less advantageous neighborhoods. The primary outcomes were QOL assessed by the obstructive sleep apnea (OSA)-18 questionnaire (range, 18-126) and SDB symptom burden assessed by the Pediatric Sleep Questionnaire-Sleep-related Breathing Disorder (PSQ-SRBD) scale (range, 0-1). The primary model was adjusted for age, sex, race, ethnicity, maternal education, recruitment site, and season. In addition, we explored the role of body mass index (BMI) percentile, environmental tobacco smoke (ETS), and asthma in these associations.Results: The sample included 453 children (16% Hispanic, 26% Black or African American, 52% White, and 6% other). COI mean (standard deviation [SD]) was 50.3 (29.4), and 37% (n = 169) of participants lived in disadvantaged neighborhoods. Poor SDB-related QOL (OSA-18 ⩾ 60) and high symptom burden (PSQ-SRBD ⩾ 0.33) were found in 30% (n = 134) and 75% (n = 341) of participants, respectively. In adjusted models, a COI increase by 1 SD (i.e., more advantageous neighborhood) was associated with an improvement in OSA-18 score by 2.5 points (95% confidence interval [CI], -4.34 to -0.62) and in PSQ-SRBD score by 0.03 points (95% CI, -0.05 to -0.01). These associations remained significant after adjusting for BMI percentile, ETS, or asthma; however, associations between COI and SDB-related QOL attenuated by 23% and 10% after adjusting for ETS or asthma, respectively.Conclusions: Neighborhood disadvantage was associated with poorer SDB-related QOL and greater SDB symptoms. Associations were partially attenuated after considering the effects of ETS or asthma. The findings support efforts to reduce ETS and neighborhood-level asthma-related risk factors and identify other neighborhood-level factors that contribute to SDB symptom burden as strategies to address sleep-health disparities.Clinical trial registered with www.clinicaltrials.gov (NCT02562040).

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.

Health disparities in pediatric sleep-disordered breathing.

Sleep-disordered breathing reflects a continuum of overnight breathing difficulties, ranging from mild snoring to obstructive sleep apnea syndrome. Sleep-disordered breathing in childhood is associated with significant adverse outcomes in multiple domains of functioning. This review summarizes the evidence of well-described ethnic, racial, and socioeconomic disparities in pediatric sleep-disordered breathing, from its prevalence to its treatment-related outcomes. Research on potential socio-ecological contributors to these disparities is also reviewed. Critical future research directions include the development of interventions that address the modifiable social and environmental determinants of these health disparities.

Neighborhood-level sleep health and childhood opportunities.

Objectives: Regional sleep differences may reflect other important indicators of health and well-being. Examining sleep health at the regional level can help inform policies to improve population health. We examined the relationship between neighborhood-level adult sleep health (modeled in this study via adult sleep duration) and other health metrics and multiple indicators of child-relevant opportunity. Methods: Data were obtained from the "500 Cities" data collected by the CDC, including the proportion of the adult population in each tract that report obtaining at least 7 h of sleep. The Child Opportunity Index (COI) provides indices for "education," "health and environment," and "social and economic" domains, as well as a global score. When data were merged, 27,130 census tracts were included. Linear regression analyses examined COI associated with the proportion of the adult population obtaining 7 h of sleep. Results: Adult sleep duration was associated with global COI, such that for each additional percent of the population that obtains ≥ 7 h of sleep, COI increases by 3.6 points (95%CI[3.57, 3.64]). Each component of COI was separately related to adult sleep duration. All associations were attenuated but significant in adjusted analyses. In stepwise analyses, sleep health via adult sleep duration emerged as the strongest correlate of global COI, accounting for 57.2% of the variance (p < 0.0001). Similarly, when stepwise analyses examined each component of COI as dependent variable, sleep health consistently emerged as the most substantial correlate (all p < 0.0001). Conclusion: Community levels of sufficient sleep are associated with greater childhood opportunities, which itself is robustly associated with a wide range of health and economic outcomes. Future work can examine whether this association can develop into scalable interventions.

A protocol for applying health equity-informed implementation science models and frameworks to adapt a sleep intervention for adolescents at risk for suicidal thoughts and behaviors.

Background: Effective and equitable strategies to prevent youth suicidal thoughts and behaviors (STB) are an urgent public health priority. Adolescent sleep disturbances are robustly linked to STB but are rarely addressed in preventive interventions or among Black and/or Hispanic/Latinx youth for whom STB risk is increasing disproportionately. This paper describes an application of health equity-informed implementation science models and frameworks to adapt and evaluate the evidence-based Transdiagnostic Sleep and Circadian (TSC) intervention for primary care implementation with adolescents of minoritized backgrounds with depression and STB risk. Methods: This multiphase study protocol uses the Assessment, Decision, Adaptation, Production, Topical Experts-Integration, Training, Testing (ADAPT-ITT) model to adapt and evaluate TSC for primary care implementation with adolescents who are depressed, at risk for STB, and of primarily Black and/or Hispanic/Latinx backgrounds. We integrate the Consolidated Framework for Implementation Research (CFIR) in an initial qualitative inquiry of adolescent, caregiver, and clinician perceptions of TSC. Subsequent ADAPT-ITT phases include systematically and iteratively testing adaptations based on the qualitative inquiry, with ongoing key informant input, and then evaluating the adapted TSC for feasibility, acceptability, and efficacy in a pilot randomized trial. Anticipated results: Based on youth depression and sleep health disparities research, we expect that TSC adaptations will be needed to enhance intervention content for adolescents with depression, STB risk, and primarily Black and/or Hispanic/Latinx backgrounds. We also anticipate adaptations will be needed to align TSC delivery methods with primary care implementation. Conclusions: Adapting evidence-based interventions with end-users and contexts in mind can help ensure that intervention strategies and delivery methods are acceptable to, and feasible with, health disparate populations. Although TSC has shown effectiveness for adolescents with sleep disturbances, we expect that additional multiphase research is necessary to optimize TSC for primary care delivery with Black and/or Hispanic/Latinx adolescents with depression and STB risk.

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.

Disparities in Sleep Health and Potential Intervention Models: A Focused Review.

Disparities in sleep health are important but underrecognized contributors to health disparities. Understanding the factors contributing to sleep heath disparities and developing effective interventions are critical to improving all aspects of heath. Sleep heath disparities are impacted by socioeconomic status, racism, discrimination, neighborhood segregation, geography, social patterns, and access to health care as well as by cultural beliefs, necessitating a cultural appropriateness component in any intervention devised for reducing sleep health disparities. Pediatric sleep disparities require innovative and urgent intervention to establish a foundation of lifelong healthy sleep. Tapping the vast potential of technology in improving sleep health access may be an underutilized tool to reduce sleep heath disparities. Identifying, implementing, replicating, and disseminating successful interventions to address sleep disparities have the potential to reduce overall disparities in health and quality of life.

Exploring Predictors of Treatment Engagement in Urban Integrated Primary Care.

OBJECTIVE: Integrated primary care (IPC) is intended to address the gap in access to behavioral health care. This may be particularly true in urban settings; however, there is a paucity of research on treatment engagement in urban IPC. This study explored factors associated with treatment engagement. METHOD: Data were collected via retrospective chart review for 410 patients of diverse backgrounds who received an IPC referral in an urban primary care site. Patient-related factors included having multiple types of referral concerns, patient primary care show rate, and number of visits with referring clinician. Service-related factors included referral type (warm handoff/ electronic), number of days between referral and intake, and average number of days between IPC treatment sessions. Engagement outcomes included attendance at IPC intake, total IPC sessions attended, overall IPC show rate, and IPC treatment attrition. RESULTS: Of referred patients, 348 (84.9%) were encouraged to or scheduled an intake. Of those, 289 (83.1%) scheduled and 57.2% attended; the average number of sessions attended was 1.73. Patients who had more primary care office visits and higher primary care show rates were more likely to attend an IPC intake. Shorter average duration between follow-up sessions was associated with higher overall IPC show rates for those who initiated IPC follow-up care. CONCLUSIONS: Supporting engagement in primary care broadly and building scheduling capacity for IPC treatment may increase IPC service engagement in an urban primary care context.

Evaluating referral, screening, and assessment procedures for middle school trauma/grief-focused treatment groups.

There is a need to delineate best practices for referring, assessing, and retaining students suspected of posttraumatic stress (PTS) and maladaptive grief (MG) in school-based treatment. Evidence-based risk-screening procedures should accurately include students who are appropriate for group treatment and exclude students who do not require treatment or who are better served by other forms of intervention and support. We described and evaluated the sequence of steps used to screen 7th- and 8th-grade students (N = 89) referred by school staff as candidates for an open trial of group-based Trauma and Grief Component Therapy for Adolescents (TGCTA; Saltzman et al., in press). We used t tests to compare included versus excluded students on PTS symptom and MG reaction scores (University of California at Los Angeles Posttraumatic Stress Disorder Reaction Index; Grief Screening Scale) during the group screen, individual interview, and treatment-implementation phases. Logistic regressions tested the incremental utility of including measures of both trauma exposure and related emotional and conduct problems (Strengths and Difficulties Questionnaire) in the screening battery. Results suggest that the group screen helped to detect mental health needs and that the individual interview further identified students with PTS and emotional problems. Conduct problems and trauma exposure predicted attrition among students who qualified for treatment. MG incrementally predicted students who advanced from the group screening to the individual interview, and trauma exposure incrementally predicted attrition from treatment. Findings yield implications for improving research and practice, including procedures for enhancing school-based referral, screening, assessment, and selection procedures. (PsycINFO Database Record

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.