Integration of Family Navigation into ECHO Autism for Pediatric Primary Care in Underserved Communities.

Children with autism from underserved communities face complex system-, provider-, and family-level barriers to accessing timely diagnosis and early intervention. The current study evaluated the preliminary effects and feasibility of a new program (ECHO Autism LINKS) that integrated pediatric primary care provider (PCP) training with family navigation (FN) to bridge the gaps between screening, referral, and service access. Three cohorts of PCPs (n = 42) participated in the program, which consisted of 60-minute sessions delivered by Zoom twice per month for 12 months. Each session included didactics, case-based learning, and collaborative discussion with participants and an interdisciplinary team of experts. Family navigators were members of the expert team and provided FN services to families referred by PCP participants. Program attendance and engagement were strong, with 40 cases presented and 258 families referred for FN services, most of whom (83%) needed help accessing and connecting with services, and 13% required ongoing support due to complex needs. PCPs demonstrated significant improvements in self-efficacy in providing best-practice care for children with autism, reported high satisfaction, and observed improved knowledge and practice as a result of the program. The results of this initial pilot provide support for the feasibility, acceptability, and preliminary efficacy of the ECHO Autism LINKS program. The model holds promise in addressing complex barriers to healthcare access by providing both PCPs and families with the knowledge and support they need. Future research is needed to evaluate the efficacy and effectiveness of the program in improving child and family outcomes.

Primary Care Framework to Monitor Preterm Infants for Neurodevelopmental Outcomes in Early Childhood.

To support decision-making in the primary care medical home, this clinical report links preterm birth and perinatal complications to early childhood developmental disability risks. It consolidates extensive contemporary outcome research from 2005 onward into an easy-to-use framework and stratifies prematurity and NICU experiences by degree of risk for developmental impairments. This framework informs and prioritizes point-of-care screening and surveillance strategies for pediatricians caring for children born preterm, guides additional assessment and referral for appropriate therapies, and offers opportunities for reassurance (when applicable) in office settings.

Protocol for targeting insomnia in school-aged children with autism spectrum disorder without intellectual disability: a randomised control trial.

INTRODUCTION: Insomnia affects up to 80% of children with autism spectrum disorder (ASD). Negative consequences of insomnia in ASD include decreased quality of life (QOL), impaired learning and cognition, increased stereotypic and challenging behaviours, and increased parental stress. Cognitive behavioural treatment for childhood insomnia (CBT-CI) is a promising treatment for dealing with insomnia and its negative consequences but has not yet been studied in school-aged children with ASD and comorbid insomnia. Access to healthcare is another challenge for children with ASD, particularly in rural and underserved regions. Previous studies indicate that ASD and insomnia share common arousal-based underpinnings, and we hypothesise that CBT-CI will reduce the hyperarousal associated with insomnia and ASD. This trial will be the first to examine CBT-CI adapted for children with ASD and will provide new information about two different modes of delivery across a variety of primary and secondary child and parent sleep and related outcomes. Knowledge obtained from this trial might allow us to develop new or modify current treatments to better target childhood insomnia and ASD. METHODS AND ANALYSIS: Children (N=180) 6-12 years of age with ASD and insomnia will be recruited from an established autism database, a paediatric clinic and community outreach in the Columbia, MO and surrounding areas. Participants will be randomised to CBT-CI adapted for children with ASD (in-person or remote using computers with cameras) or Sleep Hygiene and Related Education. Participants will be assessed at baseline, post-treatment, 6-month and 12-month follow-ups. The following assessments will be completed regarding the children: objective and subjective sleep, daytime functioning (adaptive functioning, attention, challenging behaviours, anxiety), QOL and physiological arousal (heart rate variability) and parents: objective and subjective sleep, daytime functioning (anxiety, depression, fatigue), QOL, physiological arousal and parental burden/stress. ETHICS AND DISSEMINATION: Ethics approval was obtained in January 2020 from the University of Missouri. Ethics approval was obtained in July 2020 from the US Army Medical Research and Development Command, Office of Research Protections and Human Research Protection Office. All data are expected to be collected by 2024. Full trial results are planned to be published by 2025. Secondary analyses of baseline data will be subsequently published. TRIAL REGISTRATION NUMBER: NCT04545606; Pre-results.

Promoting Healthy Sexuality for Children and Adolescents With Disabilities.

This clinical report updates a 2006 report from the American Academy of Pediatrics titled "Sexuality of Children and Adolescents With Developmental Disabilities." The development of a healthy sexuality best occurs through appropriate education, absence of coercion and violence, and developmental acquisition of skills to navigate feelings, desires, relationships, and social pressures. Pediatric health care providers are important resources for anticipatory guidance and education for all children and youth as they understand their changing bodies, feelings, and behaviors. Yet, youth with disabilities and their families report inadequate education and guidance from pediatricians regarding sexual health development. In the decade since the original clinical report was published, there have been many advancements in the understanding and care of children and youth with disabilities, in part because of an increased prevalence and breadth of autism spectrum disorder as well as an increased longevity of individuals with medically complex and severely disabling conditions. During this same time frame, sexual education in US public schools has diminished, and there is emerging evidence that the attitudes and beliefs of all youth (with and without disability) about sex and sexuality are being formed through media rather than formal education or parent and/or health care provider sources. This report aims to provide the pediatric health care provider with resources and tools for clinical practice to address the sexual development of children and youth with disabilities. The report emphasizes strategies to promote competence in achieving a healthy sexuality regardless of physical, cognitive, or socioemotional limitations.

Community and Social Participation Among Individuals with Autism Spectrum Disorder Transitioning to Adulthood.

Individuals with Autism Spectrum Disorders (ASDs) are at increased risk for poor psychosocial outcomes as adults. We described community and social participation in adolescents with ASDs as they transitioned from adolescence to adulthood, and identified adolescent factors associated with community and social participation outcomes in adulthood. We performed a secondary data analysis of a nationally representative cohort using the National Longitudinal Transition Study 2 and observed a significant decrease in community participation from adolescence to adulthood (63 to 46%); social participation remained stable. The presence of case management in adolescence was associated with increased community and social participation in adulthood. Case management may be crucial for optimal levels of participation among adults with ASDs.

Facilitators and barriers to twice daily tooth brushing among children with special health care needs.

PURPOSE: The oral hygiene routines of preschool-age children with special health care needs (CSHCN) were examined to identify caregiver behaviors and beliefs associated with twice daily tooth brushing. METHODS: Ninety caregivers of CSHCN, ages 23 to 62 months, were interviewed to determine supports or barriers to tooth brushing. RESULTS: Ninety-eight percent of caregivers had begun brushing their child's teeth and half reported brushing twice daily. Caregivers' brushing skills and the availability of child-friendly supplies were associated with twice daily versus less frequent brushing (p = .02). CONCLUSIONS: This study adds insight into the challenges of establishing daily oral health care for children who must rely on others for their care. The facilitators and barriers to tooth brushing by caregivers of CSHCN are similar to those noted previously among parents of typically developing children. Efforts to improve all caregivers' oral hygiene skills are needed. For caregivers of CSHCN, oral health teaching opportunities may exist among professionals who provide ongoing medical care, special services and therapies.

Health and mental health needs of children in US military families.

The wars in Afghanistan and Iraq have been challenging for US uniformed service families and their children. Almost 60% of US service members have family responsibilities. Approximately 2.3 million active duty, National Guard, and Reserve service members have been deployed since the beginning of the wars in Afghanistan and Iraq (2001 and 2003, respectively), and almost half have deployed more than once, some for up to 18 months' duration. Up to 2 million US children have been exposed to a wartime deployment of a loved one in the past 10 years. Many service members have returned from combat deployments with symptoms of posttraumatic stress disorder, depression, anxiety, substance abuse, and traumatic brain injury. The mental health and well-being of spouses, significant others, children (and their friends), and extended family members of deployed service members continues to be significantly challenged by the experiences of wartime deployment as well as by combat mortality and morbidity. The medical system of the Department of Defense provides health and mental health services for active duty service members and their families as well as activated National Guard and Reserve service members and their families. In addition to military pediatricians and civilian pediatricians employed by military treatment facilities, nonmilitary general pediatricians care for >50% of children and family members before, during, and after wartime deployments. This clinical report is for all pediatricians, both active duty and civilian, to aid in caring for children whose loved ones have been, are, or will be deployed.

Complementary and alternative medicine used by children in military pediatric clinics.

OBJECTIVES: The objective of this study was to evaluate the prevalence, types, perceived effects, and factors that influence the use of complementary and alternative medicine (CAM) by military children. DESIGN: A parent survey was administered in two military general pediatric clinics from June to September 2009. Parents completed surveys about their children including the following items: demographic information, a list of specific CAM therapies, family CAM use, and child health status. RESULTS: Caregivers completed 278 surveys. The overall use of CAM was 23%. The most common type of CAM used was herbal therapy (34%). The CAM therapies most commonly reported to be very helpful were special diets (67%), melatonin (57%), vitamins and minerals used at doses higher than the recommended daily allowance (50%), and massage therapy (50%). The majority of users reported no side-effects (96%). Among CAM users, 53% had discussed their CAM use with a physician and 47% had seen a CAM practitioner. Factors associated with CAM use in multiple regression analysis included chronic conditions (p = 0.001), parent/sibling use of CAM (p < 0.001), and parent age over 30 years (p = 0.02). Primary sources of CAM information were friends and family (68%) and doctors (44%). Common reasons for using CAM were to promote general health (70%), to relieve symptoms (56%), and to improve quality of life (48%). Eighty percent (80%) of all respondents indicated they would use CAM if recommended by a physician. CONCLUSIONS: In this military population with access to universal health care, CAM use is higher than the U.S. national average and nearly double that of the 2007 National Health Interview Survey study. Patients with chronic conditions, family members using CAM, and parental age over 30 years are more likely to use CAM. CAM is perceived as helpful with minimal to no side-effects. Pediatricians should inquire about CAM use and be prepared to provide guidance on this topic.

Psychosocial screening in children with wartime-deployed parents.

Children of U.S. military families are exposed to unique challenges and stressors directly related to their parents' wartime deployments, potentially placing them at higher risk for psychosocial disruption. The objective of this study was to investigate the effects of parental wartime military deployment on psychosocial symptoms as measured by parent and youth self-report on the Pediatric Symptom Checklist. During annual physicals at a large military pediatric clinic, parents (216) and youth (198) were surveyed about emotional and behavioral difficulties and the current status of parental deployment. Parents reported more child psychosocial symptoms, and youth self reported more psychosocial symptoms if there was a currently deployed parent. Youth self-reports may be another way to identify psychosocial symptoms in at-risk military youth. These findings accentuate the importance of training providers who care for military youth to recognize and respond to their unique needs during parental deployment.

Medical equipment use in children with disabilities: A descriptive survey.

OBJECTIVE: To investigate the use of medical equipment by children with disabilities, the reasons for use, and prescribers of equipment. METHODS: A convenience sample. SETTING: Referral clinic for children with developmental conditions. PARTICIPANTS: Caregivers of children with motor disabilities completed an interview survey for children 0-21 years. RESULTS: 108 parents/caregivers reported 467 (mean=4.3 per patient) pieces of owned equipment. The mean age of children was 7.1 years (± 5.0), and 49% were female. The most common diagnoses were cerebral palsy (45%), 'Other' diagnoses including intellectual disability (19%), genetic abnormality (13%), spina bifida (13%), and neuromuscular diseases (7%). Survey participants described use of the following types of equipment: orthotics (82%), bath chair (37%), seating device (34%), stander (19%), augmentative communication devices (17%), walker (14%), and gait trainer (10%). Reasons for "non-use" of equipment included: outgrown (19%), not useful (14%), and child refusal (15%). Physicians were the sole prescriber for 15% of families, whereas physical or occupational therapists most commonly recommended new equipment (76%). CONCLUSION: Based on parental report, children with neuromuscular disabilities use most equipment that is medically recommended. The majority of equipment needs are identified by therapists. Pediatricians can benefit from additional expertise in the provision of medical equipment for children.

The psychosocial effects of deployment on military children.

OBJECTIVE: The impact of the Global War on Terror on two million U.S. military children remains unknown. The purpose of this study was to describe the psychosocial profile of school age children during parental deployment utilizing standardized psychosocial health and stress measures, and to identify predictors of children at "high risk" for psychosocial morbidity during wartime deployment. METHODS: Army spouses with a deployed service member and a child aged 5-12 years completed a deployment packet consisting of demographic and psychosocial questions. The psychosocial health measures included the Pediatric Symptom Checklist (PSC), the Parenting Stress Index-Short Form and the Perceived Stress Scale-4. RESULTS: Overall, 32% of respondents exceeded the PSC cut off score for their child, indicating "high risk" for psychosocial morbidity and 42% reported "high risk" stress on the Parenting Stress Index-Short Form. Parenting stress significantly predicted an increase in child psychosocial morbidity (odds ratio 7.41, confidence interval 2.9-19.0, p < 0.01). Parents utilizing military support reported less child psychosocial morbidity (odds ratio 0.32, confidence interval 0.13-0.77, p < 0.01) and parental college education was related to a decrease in child psychosocial morbidity (odds ratio 0.33, confidence interval 0.13-0.81, p < 0.02). The effects of military rank, child gender, child age, and race or ethnic background did not reach statistical significance. CONCLUSION: Families in this study experiencing deployment identified one-third of military children at "high risk" for psychosocial morbidity. The most significant predictor of child psychosocial functioning during wartime deployment was parenting stress. Military, family and community supports help mitigate family stress during periods of deployment.

Acquisition of autonomy skills in adolescents with myelomeningocele.

This study describes ages of acquisition (AOA) of typical adolescent autonomy skills in a regional cohort of individuals with myelomeningocele (MM), aged 12 to 18 years, with a mean age of 14 years 11 months (SD 2y 5mo). Prospectively collected data over 10 years were analyzed. Regression analysis, using Generalized Estimation Equation, provided 50th centile and 75th centile AOA for each skill. One hundred and fifty-eight participants (90 males, 68 females) attended 378 annual patient visits. Patient contacts were equally distributed across age and physical severity groupings. Twenty-four percent of participants had functional lesion levels at or above L2, and 38% between L3-L5, 38% at S1 or below. Eighty-four percent had shunted hydrocephalus, 24% were independent in ambulation, and 69% achieved toileting independence before adolescence. AOA for autonomy skills were delayed by 25 to 30% when compared with typically developing adolescents. Differences in cognitive ability explained the variance in median ages for skill acquisition (p=0.01) more than physical lesion level. Participants acquired community skills at a median age of 16 years 6 months. Twelve percent of 18-year-olds drove cars (9% with supervision, 3% independently), regardless of physical lesion severity. We conclude that adolescents with MM acquire the majority of autonomy skills 2 to 5 years later than their typically developing peers. This study establishes AOA timelines for autonomy skills in adolescents with MM.

Long-term survival of individuals with myelomeningocele.

The objectives of this study were to extend survival analysis into adulthood for patients with myelomeningocele (MM) and to compare survival curves for patients born with varying defect severity before and after 1975. We have reviewed existing data for 904 patients with MM seen in a large multidisciplinary children's clinic over 43 years. Before 1975, a major contributor to decreased survival is death during infancy. The presence of cerebral spinal fluid shunting is a major contributor to increased survival. After 1975, survival to adolescence is similar regardless of shunt status (p = 0.17). For all patients alive at age 16, a significant decrease in survival probability after age 34 years was found for individuals with shunted hydrocephalus compared to those without a shunt (p = 0.03). Although childhood survival for individuals born after 1975 is not related to shunt status, adults with MM and shunted hydrocephalus may be at risk for decreased longevity.