Pub Date : 2025-11-01Epub Date: 2025-07-09DOI: 10.1097/DBP.0000000000001396
Kiara Sclip, Andrew Collaro, Jasneek Chawla
Background: Sleep disordered breathing (SDB) is more prevalent in children with Down syndrome (DS), and polysomnography (PSG) is routinely performed by 4 years of age. However, application of sensors to the scalp and midface is often poorly tolerated in this population because of behavioral and sensory sensitivities, resulting in failed studies and incomplete data.
Objective: This study aimed to explore caregiver experiences and perspectives of contactless sleep monitoring using Sonomat as an alternative to PSG.
Methods: This was a cohort study of children with DS undergoing PSG for evaluation of SDB. Caregivers completed study-specific questionnaires on their child's experiences with PSG and Sonomat (in-hospital, home). Descriptive statistics of responses are reported.
Results: Fifty-six children underwent simultaneous Sonomat and PSG monitoring, with 28 continuing home monitoring. Airflow sensors were poorly tolerated during PSG, with 30% of children unable to tolerate both nasal prongs and oronasal thermistor. All caregivers who used the Sonomat at home rated the experience positively; however, only 56% preferred it over in-lab PSG, indicating mixed preferences. Most caregivers found Sonomat easy to use, and a majority reported typical sleep patterns during home monitoring.
Conclusion: The Sonomat represents a promising contactless tool for screening sleep disordered breathing in children with Down syndrome, particularly in cases where standard PSG is not tolerated. Its ease of use and acceptability suggest value in complementing traditional diagnostics, especially in home settings.
{"title":"Experiences of Children With Down Syndrome and Caregivers Using Contactless Sleep Monitoring as Polysomnography Alternative.","authors":"Kiara Sclip, Andrew Collaro, Jasneek Chawla","doi":"10.1097/DBP.0000000000001396","DOIUrl":"10.1097/DBP.0000000000001396","url":null,"abstract":"<p><strong>Background: </strong>Sleep disordered breathing (SDB) is more prevalent in children with Down syndrome (DS), and polysomnography (PSG) is routinely performed by 4 years of age. However, application of sensors to the scalp and midface is often poorly tolerated in this population because of behavioral and sensory sensitivities, resulting in failed studies and incomplete data.</p><p><strong>Objective: </strong>This study aimed to explore caregiver experiences and perspectives of contactless sleep monitoring using Sonomat as an alternative to PSG.</p><p><strong>Methods: </strong>This was a cohort study of children with DS undergoing PSG for evaluation of SDB. Caregivers completed study-specific questionnaires on their child's experiences with PSG and Sonomat (in-hospital, home). Descriptive statistics of responses are reported.</p><p><strong>Results: </strong>Fifty-six children underwent simultaneous Sonomat and PSG monitoring, with 28 continuing home monitoring. Airflow sensors were poorly tolerated during PSG, with 30% of children unable to tolerate both nasal prongs and oronasal thermistor. All caregivers who used the Sonomat at home rated the experience positively; however, only 56% preferred it over in-lab PSG, indicating mixed preferences. Most caregivers found Sonomat easy to use, and a majority reported typical sleep patterns during home monitoring.</p><p><strong>Conclusion: </strong>The Sonomat represents a promising contactless tool for screening sleep disordered breathing in children with Down syndrome, particularly in cases where standard PSG is not tolerated. Its ease of use and acceptability suggest value in complementing traditional diagnostics, especially in home settings.</p>","PeriodicalId":50215,"journal":{"name":"Journal of Developmental and Behavioral Pediatrics","volume":" ","pages":"e617-e620"},"PeriodicalIF":2.2,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144651022","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-01Epub Date: 2025-11-13DOI: 10.1097/DBP.0000000000001432
Veronica Meneses, Julia C Durante, Gabriela Granados García, Elizabeth Diekroger, Jason Fogler
<p><p>Lucia is a 13-year-old girl with Smith-Magenis syndrome (SMS), including hearing loss, axonal polyneuropathy, and urinary incontinence, followed for management of attention-deficit hyperactivity disorder (ADHD) with combined presentation, in the context of intellectual disability and mood differences. Lucia was diagnosed with SMS at age 6 years and has a history of global developmental delay, bilateral toe walking, bilateral hearing impairment, sleep difficulties, and emotional and behavioral challenges. She received early intervention therapies, attended a preschool program for children with disabilities, and is currently in special education with Speech and Language Therapy and hearing services. In addition, she enjoys attending a mainstream reading class with inclusion support and delights in music and sewing. Socially, she has tended to prefer younger children or adults. Lucia has persistent low frustration tolerance and anxiety, becoming emotionally dysregulated at school and self-injurious at home when she feels she is different from peers or unable to be successful in activities. Her nervousness and agitation has limited her participation in choir and crafts. At home, Lucia becomes fixated on tasks and routines and then is unable to complete activities of daily living promptly and effectively. Lucia was prescribed short-acting methylphenidate for ADHD but had trembling extremities and heard voices when on therapeutic doses. She did better on methylphenidate Osmotic-controlled Release Oral Delivery System (OROS) 18 mg by mouth daily, which her family administered intermittently, as they value using less medication. Guanfacine extended release was trialed, but Lucia experienced worsening anxiety. Lucia and her family have received referrals for mental health counseling in the past, but her parents have not have been able to pursue them because of cost and their busy work schedules. Lucia lives with her mother, originally from South America, who is employed in child care, and father, from the Midwest, employed in a factory. Lucia's mother accompanies her to her appointment and states, "Her hands shake with higher doses of medications, but she is very distractible and spends too long in the bathroom, stuffing toilet paper in her nose. I am not sure what will happen when she grows up. A boy who likes her brings her gifts, and she says she wants to be married and have children someday." Her mother emphasizes that Lucia increasingly demonstrates a desire to be independent and expressed happiness upon reaching menarche, as she seems to understand it as a marker of maturity. On examination, Lucia smiles nervously and bites her nails, yet engages well when discussing books, music, and sewing. She has notable speech articulation differences and is impulsive in her speech and movements. Lucia's mother is interested in gynecological counseling and potentially birth control, given concerns about Lucia's vulnerability. How would you begin to advise
{"title":"Sexual Health and Transition Needs in an Adolescent Girl With Attention-deficit Hyperactivity Disorder and Smith-magenis Syndrome.","authors":"Veronica Meneses, Julia C Durante, Gabriela Granados García, Elizabeth Diekroger, Jason Fogler","doi":"10.1097/DBP.0000000000001432","DOIUrl":"10.1097/DBP.0000000000001432","url":null,"abstract":"<p><p>Lucia is a 13-year-old girl with Smith-Magenis syndrome (SMS), including hearing loss, axonal polyneuropathy, and urinary incontinence, followed for management of attention-deficit hyperactivity disorder (ADHD) with combined presentation, in the context of intellectual disability and mood differences. Lucia was diagnosed with SMS at age 6 years and has a history of global developmental delay, bilateral toe walking, bilateral hearing impairment, sleep difficulties, and emotional and behavioral challenges. She received early intervention therapies, attended a preschool program for children with disabilities, and is currently in special education with Speech and Language Therapy and hearing services. In addition, she enjoys attending a mainstream reading class with inclusion support and delights in music and sewing. Socially, she has tended to prefer younger children or adults. Lucia has persistent low frustration tolerance and anxiety, becoming emotionally dysregulated at school and self-injurious at home when she feels she is different from peers or unable to be successful in activities. Her nervousness and agitation has limited her participation in choir and crafts. At home, Lucia becomes fixated on tasks and routines and then is unable to complete activities of daily living promptly and effectively. Lucia was prescribed short-acting methylphenidate for ADHD but had trembling extremities and heard voices when on therapeutic doses. She did better on methylphenidate Osmotic-controlled Release Oral Delivery System (OROS) 18 mg by mouth daily, which her family administered intermittently, as they value using less medication. Guanfacine extended release was trialed, but Lucia experienced worsening anxiety. Lucia and her family have received referrals for mental health counseling in the past, but her parents have not have been able to pursue them because of cost and their busy work schedules. Lucia lives with her mother, originally from South America, who is employed in child care, and father, from the Midwest, employed in a factory. Lucia's mother accompanies her to her appointment and states, \"Her hands shake with higher doses of medications, but she is very distractible and spends too long in the bathroom, stuffing toilet paper in her nose. I am not sure what will happen when she grows up. A boy who likes her brings her gifts, and she says she wants to be married and have children someday.\" Her mother emphasizes that Lucia increasingly demonstrates a desire to be independent and expressed happiness upon reaching menarche, as she seems to understand it as a marker of maturity. On examination, Lucia smiles nervously and bites her nails, yet engages well when discussing books, music, and sewing. She has notable speech articulation differences and is impulsive in her speech and movements. Lucia's mother is interested in gynecological counseling and potentially birth control, given concerns about Lucia's vulnerability. How would you begin to advise","PeriodicalId":50215,"journal":{"name":"Journal of Developmental and Behavioral Pediatrics","volume":"46 6","pages":"e637-e640"},"PeriodicalIF":2.2,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12695272/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145758240","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-01Epub Date: 2025-07-08DOI: 10.1097/DBP.0000000000001393
Jennifer O Lambert, Eliana M Perrin, Raymond Sturner, Barbara J Howard, Sara B Johnson
Objective: To describe changes in household food security status among families with young children before and during the COVID-19 pandemic, when many families experienced changes in food security status because of pandemic disruptions and relief programs, and to investigate the association between household food insecurity (FI) before and/or during the pandemic and developmental milestone attainment.
Method: We used an interrupted time series design to evaluate the association between household FI and developmental milestone attainment before and during the pandemic. Our sample included US children 0 to 5 years with FI and developmental screenings prepandemic (June 2017 to February 2020) and intrapandemic (May 2020 to May 2022) in the Comprehensive Health and Decision Information System. Children with no food insecurity were compared to children with only intrapandemic (new), only prepandemic (resolved), or both intrapandemic and prepandemic (persistent) FI.
Results: We found lower developmental milestone attainment only in the persistent FI group, with significantly lower communication (adjusted difference = -0.17; 95% CI, -0.33 to -0.01) and personal-social (adjusted difference = -0.15; 95% CI, -0.30 to -0.01) scores, versus children with no FI. There were no differences in developmental milestone attainment in any domains for children with new or resolved FI compared to children with no FI.
Conclusion: Using the pandemic as a natural experiment to study how changes in household food security status are associated with development, we found that persistent, but not transient, household FI is associated with suboptimal early childhood development. To promote healthy development, pediatricians should promptly intervene to address FI and advocate for governmental programs that promote food security.
{"title":"Food Insecurity Before and During the COVID-19 Pandemic and Early Childhood Development.","authors":"Jennifer O Lambert, Eliana M Perrin, Raymond Sturner, Barbara J Howard, Sara B Johnson","doi":"10.1097/DBP.0000000000001393","DOIUrl":"10.1097/DBP.0000000000001393","url":null,"abstract":"<p><strong>Objective: </strong>To describe changes in household food security status among families with young children before and during the COVID-19 pandemic, when many families experienced changes in food security status because of pandemic disruptions and relief programs, and to investigate the association between household food insecurity (FI) before and/or during the pandemic and developmental milestone attainment.</p><p><strong>Method: </strong>We used an interrupted time series design to evaluate the association between household FI and developmental milestone attainment before and during the pandemic. Our sample included US children 0 to 5 years with FI and developmental screenings prepandemic (June 2017 to February 2020) and intrapandemic (May 2020 to May 2022) in the Comprehensive Health and Decision Information System. Children with no food insecurity were compared to children with only intrapandemic (new), only prepandemic (resolved), or both intrapandemic and prepandemic (persistent) FI.</p><p><strong>Results: </strong>We found lower developmental milestone attainment only in the persistent FI group, with significantly lower communication (adjusted difference = -0.17; 95% CI, -0.33 to -0.01) and personal-social (adjusted difference = -0.15; 95% CI, -0.30 to -0.01) scores, versus children with no FI. There were no differences in developmental milestone attainment in any domains for children with new or resolved FI compared to children with no FI.</p><p><strong>Conclusion: </strong>Using the pandemic as a natural experiment to study how changes in household food security status are associated with development, we found that persistent, but not transient, household FI is associated with suboptimal early childhood development. To promote healthy development, pediatricians should promptly intervene to address FI and advocate for governmental programs that promote food security.</p>","PeriodicalId":50215,"journal":{"name":"Journal of Developmental and Behavioral Pediatrics","volume":" ","pages":"e586-e591"},"PeriodicalIF":2.2,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12327531/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144602068","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Objective: Feeding problems in typically developing children (TDCs) are quite common in early childhood and are of great concern for parents, as they significantly impact nutritional intake and overall health. This study aimed to evaluate the prevalence of feeding difficulties in typically developing children from India aged 1 to 5 years using the Kannada version of the Behavioral Pediatrics Feeding Assessment Scale (BPFAS).
Method: Data were gathered from 253 parents of typically developing children via a purposive sampling method. The parents completed a self-reported demographic questionnaire and a Kannada version of the BPFAS.
Results: The survey analyzed the responses of 124 (49%) male and 129 (51%) female children. According to the BPFAS cutoff scores, the prevalence of feeding difficulties among TDCs in the study was 28.9% (n = 73) (TFS >84) and 18.2% (n = 46) (TPS >9). Even though a higher percentage of children exhibited negative feeding behaviors, very few parents considered these behaviors problematic for them. Furthermore, analysis revealed a weak negative correlation between BMI and TFS and TPS scores (Pearson r values of -0.027 [ p = 0.669] for the TFS score and -0.049 [ p = 0.436] for the TPS score).
Conclusion: The present study reveals a higher prevalence of parent-perceived feeding issues in young, typically developing children from India. This highlights the necessity of educating Indian parents about feeding issues in young children, their potential long-term consequences, and the need for early intervention.
{"title":"Feeding Problems Among Typically Developing Children From India Aged 1 to 5: A Cross-sectional Study.","authors":"Vyshnavi Nelliyottu Kuniyil, Srikanth Nayak, Rakesh Chowkalli VeeraBhadrappa, Suneel C Mundkur, Usha Devadas","doi":"10.1097/DBP.0000000000001402","DOIUrl":"10.1097/DBP.0000000000001402","url":null,"abstract":"<p><strong>Objective: </strong>Feeding problems in typically developing children (TDCs) are quite common in early childhood and are of great concern for parents, as they significantly impact nutritional intake and overall health. This study aimed to evaluate the prevalence of feeding difficulties in typically developing children from India aged 1 to 5 years using the Kannada version of the Behavioral Pediatrics Feeding Assessment Scale (BPFAS).</p><p><strong>Method: </strong>Data were gathered from 253 parents of typically developing children via a purposive sampling method. The parents completed a self-reported demographic questionnaire and a Kannada version of the BPFAS.</p><p><strong>Results: </strong>The survey analyzed the responses of 124 (49%) male and 129 (51%) female children. According to the BPFAS cutoff scores, the prevalence of feeding difficulties among TDCs in the study was 28.9% (n = 73) (TFS >84) and 18.2% (n = 46) (TPS >9). Even though a higher percentage of children exhibited negative feeding behaviors, very few parents considered these behaviors problematic for them. Furthermore, analysis revealed a weak negative correlation between BMI and TFS and TPS scores (Pearson r values of -0.027 [ p = 0.669] for the TFS score and -0.049 [ p = 0.436] for the TPS score).</p><p><strong>Conclusion: </strong>The present study reveals a higher prevalence of parent-perceived feeding issues in young, typically developing children from India. This highlights the necessity of educating Indian parents about feeding issues in young children, their potential long-term consequences, and the need for early intervention.</p>","PeriodicalId":50215,"journal":{"name":"Journal of Developmental and Behavioral Pediatrics","volume":" ","pages":"e599-e604"},"PeriodicalIF":2.2,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12695391/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144745868","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-01Epub Date: 2025-08-22DOI: 10.1097/DBP.0000000000001411
Peggy H Y Chan, C M Lai, H S Lam, Patrick C M Wong
Objective: Neural development differs between in-utero and ex-utero environments. Length of gestational age (GA) is associated with brain development and early life neurodevelopmental outcomes, affecting both preterm and term infants. This study aimed to examine a wide range of GA and provide a more comprehensive understanding of its effects on various developmental domains.
Method: Four hundred fifty-four infants who were born at 24 to 41 weeks of GA were included in this analysis. Cognitive, language, and motor development between 8 and 30 months of age were assessed using the Bayley Scales of Infant and Toddler Development, Third Edition (Bayley-III). Associations between GA and outcomes were analyzed using linear and logistic mixed-effects models.
Results: GA was positively associated with all examined developmental domains with a small-sized effect (Pearson's correlation coefficients: 0.08-0.15; p < 0.05). After adjusting for covariates, linear mixed-effect models estimated that each additional week of GA was associated with an increase in Bayley III composite scores: cognitive (0.6 points), language (0.6 points), and motor (0.62 points). Logistic mixed-effect models showed that after adjusting for the covariates, each additional week of GA reduced the adjusted odds ratio of delay in 1 of the language subdomains (i.e., receptive communication) by 13%.
Conclusion: We found a small impact of GA on cognitive, language, and motor development across a wide range of GA. Language and its subdomains seem particularly sensitive to the effects of prematurity. Thus, regular monitoring and parent-based early intervention, especially in the language domain, are warranted for early-term and preterm infants.
{"title":"Early Life Neurodevelopment of Infants Across a Wide Gestational Age Range.","authors":"Peggy H Y Chan, C M Lai, H S Lam, Patrick C M Wong","doi":"10.1097/DBP.0000000000001411","DOIUrl":"10.1097/DBP.0000000000001411","url":null,"abstract":"<p><strong>Objective: </strong>Neural development differs between in-utero and ex-utero environments. Length of gestational age (GA) is associated with brain development and early life neurodevelopmental outcomes, affecting both preterm and term infants. This study aimed to examine a wide range of GA and provide a more comprehensive understanding of its effects on various developmental domains.</p><p><strong>Method: </strong>Four hundred fifty-four infants who were born at 24 to 41 weeks of GA were included in this analysis. Cognitive, language, and motor development between 8 and 30 months of age were assessed using the Bayley Scales of Infant and Toddler Development, Third Edition (Bayley-III). Associations between GA and outcomes were analyzed using linear and logistic mixed-effects models.</p><p><strong>Results: </strong>GA was positively associated with all examined developmental domains with a small-sized effect (Pearson's correlation coefficients: 0.08-0.15; p < 0.05). After adjusting for covariates, linear mixed-effect models estimated that each additional week of GA was associated with an increase in Bayley III composite scores: cognitive (0.6 points), language (0.6 points), and motor (0.62 points). Logistic mixed-effect models showed that after adjusting for the covariates, each additional week of GA reduced the adjusted odds ratio of delay in 1 of the language subdomains (i.e., receptive communication) by 13%.</p><p><strong>Conclusion: </strong>We found a small impact of GA on cognitive, language, and motor development across a wide range of GA. Language and its subdomains seem particularly sensitive to the effects of prematurity. Thus, regular monitoring and parent-based early intervention, especially in the language domain, are warranted for early-term and preterm infants.</p>","PeriodicalId":50215,"journal":{"name":"Journal of Developmental and Behavioral Pediatrics","volume":" ","pages":"e611-e616"},"PeriodicalIF":2.2,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12695379/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144977020","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-01Epub Date: 2025-07-28DOI: 10.1097/DBP.0000000000001404
Tess S Simpson, Eleanor Bold, Robin L Peterson, Ann Lantagne, Pamela Wilson, Christine Petranovich
Purpose: To determine whether caregiver expectation and symptoms of attention deficit/hyperactivity disorder (ADHD) were significantly associated with self-management behavior in a sample of youth and young adults with spina bifida (SB), while accounting for several other condition-related and sociodemographic factors.
Methods: Participants were drawn from clinical cases seen through a multidisciplinary outpatient SB clinic at a children's hospital between 2022 and 2023. Participants included 52 youth and young adults younger than 21 years diagnosed with SB. Caregiver report of youth and young adult self-management behavior and caregiver expectation were obtained using the Kennedy Krieger Independence Scales-Spina Bifida Version (KKIS-SB). Caregiver report of youth and young adult ADHD symptoms were obtained using the National Institute for Children's Health Quality Vanderbilt Assessment Scale-Parent Version.
Results: Caregiver expectation and symptoms of ADHD were significantly associated with self-management behaviors in youth and young adults with SB, including the ability to initiate daily self-care and home living routines independently and the ability to use prospective memory to complete tasks that are needed for good health. More ADHD symptoms were associated with poorer ratings of self-management behavior and higher caregiver expectation was associated with better ratings of self-management behavior.
Conclusion: The findings of this study suggest that caregiver expectations and co-occurring neurocognitive challenges may be influential when considering self-management behaviors in youth and young adults with SB. Family-based interventions that target caregiver perceptions and behaviors and provide psychoeducation about neurocognitive challenges as they relate to self-management behaviors may be an important target for future research.
{"title":"Self-management in Youth and Young Adults With Spina Bifida: Associations With Caregiver Expectation and Attention-Deficit/Hyperactivity Disorder Symptoms.","authors":"Tess S Simpson, Eleanor Bold, Robin L Peterson, Ann Lantagne, Pamela Wilson, Christine Petranovich","doi":"10.1097/DBP.0000000000001404","DOIUrl":"10.1097/DBP.0000000000001404","url":null,"abstract":"<p><strong>Purpose: </strong>To determine whether caregiver expectation and symptoms of attention deficit/hyperactivity disorder (ADHD) were significantly associated with self-management behavior in a sample of youth and young adults with spina bifida (SB), while accounting for several other condition-related and sociodemographic factors.</p><p><strong>Methods: </strong>Participants were drawn from clinical cases seen through a multidisciplinary outpatient SB clinic at a children's hospital between 2022 and 2023. Participants included 52 youth and young adults younger than 21 years diagnosed with SB. Caregiver report of youth and young adult self-management behavior and caregiver expectation were obtained using the Kennedy Krieger Independence Scales-Spina Bifida Version (KKIS-SB). Caregiver report of youth and young adult ADHD symptoms were obtained using the National Institute for Children's Health Quality Vanderbilt Assessment Scale-Parent Version.</p><p><strong>Results: </strong>Caregiver expectation and symptoms of ADHD were significantly associated with self-management behaviors in youth and young adults with SB, including the ability to initiate daily self-care and home living routines independently and the ability to use prospective memory to complete tasks that are needed for good health. More ADHD symptoms were associated with poorer ratings of self-management behavior and higher caregiver expectation was associated with better ratings of self-management behavior.</p><p><strong>Conclusion: </strong>The findings of this study suggest that caregiver expectations and co-occurring neurocognitive challenges may be influential when considering self-management behaviors in youth and young adults with SB. Family-based interventions that target caregiver perceptions and behaviors and provide psychoeducation about neurocognitive challenges as they relate to self-management behaviors may be an important target for future research.</p>","PeriodicalId":50215,"journal":{"name":"Journal of Developmental and Behavioral Pediatrics","volume":" ","pages":"e605-e610"},"PeriodicalIF":2.2,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144745869","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-01Epub Date: 2025-08-27DOI: 10.1097/DBP.0000000000001414
Lisa D Wiggins, Carolyn DiGuiseppi, Katie Overwyk, Brian Barger, Gabriel Dichter, Maureen Durkin, Kristina Hightshoe, Eric Moody, Cy Nadler, Patrick Powell, Nuri Reyes, Angela M Thompson-Paul, Kayla N Anderson
Objectives: We sought to examine differences in caregiver-reported adverse childhood experiences (ACEs) in adolescents with and without autism and explore associations between ACEs and behavioral and emotional problems in those with ACEs.
Methods: Children were classified as having autism, another developmental disability (DD), or population comparison (POP) after a comprehensive evaluation in the Study to Explore Early Development (SEED) between 2 to 5 years of age. Caregivers of these same children completed the SEED Teen survey and answered questions about ACEs and current behavioral and emotional problems at 12 to 16 years of age.
Results: Adolescents with autism (n = 198) and other DD (n = 330) were more likely than POP (n = 330) to experience income insufficiency (29.8%, 25.2%, and 12.2%, respectively) and parental divorce (29.3%, 25.7%, and 18.4%, respectively) (all p < 0.05). Living with someone with an alcohol or drug problem was associated with conduct problems only in adolescents with autism; living in a family that received financial assistance was associated with hyperactivity problems only in adolescents with other DD. Living with anyone experiencing mental illness, suicidality, or severe depression was associated with conduct and emotional problems in all 3 study groups.
Conclusion: Families of children with atypical development may need more financial and emotional/marital support than others. Moreover, adolescents with autism and other DD could benefit from behavioral supports in response to a few specific ACEs while addressing household mental health problems could have widespread benefits that improve pediatric health. These findings can be used to encourage evidence-based programs and practices to prevent ACEs and offer supports when needed.
{"title":"Adverse Childhood Experiences and Behavioral and Emotional Problems in Adolescents With and Without Autism.","authors":"Lisa D Wiggins, Carolyn DiGuiseppi, Katie Overwyk, Brian Barger, Gabriel Dichter, Maureen Durkin, Kristina Hightshoe, Eric Moody, Cy Nadler, Patrick Powell, Nuri Reyes, Angela M Thompson-Paul, Kayla N Anderson","doi":"10.1097/DBP.0000000000001414","DOIUrl":"10.1097/DBP.0000000000001414","url":null,"abstract":"<p><strong>Objectives: </strong>We sought to examine differences in caregiver-reported adverse childhood experiences (ACEs) in adolescents with and without autism and explore associations between ACEs and behavioral and emotional problems in those with ACEs.</p><p><strong>Methods: </strong>Children were classified as having autism, another developmental disability (DD), or population comparison (POP) after a comprehensive evaluation in the Study to Explore Early Development (SEED) between 2 to 5 years of age. Caregivers of these same children completed the SEED Teen survey and answered questions about ACEs and current behavioral and emotional problems at 12 to 16 years of age.</p><p><strong>Results: </strong>Adolescents with autism (n = 198) and other DD (n = 330) were more likely than POP (n = 330) to experience income insufficiency (29.8%, 25.2%, and 12.2%, respectively) and parental divorce (29.3%, 25.7%, and 18.4%, respectively) (all p < 0.05). Living with someone with an alcohol or drug problem was associated with conduct problems only in adolescents with autism; living in a family that received financial assistance was associated with hyperactivity problems only in adolescents with other DD. Living with anyone experiencing mental illness, suicidality, or severe depression was associated with conduct and emotional problems in all 3 study groups.</p><p><strong>Conclusion: </strong>Families of children with atypical development may need more financial and emotional/marital support than others. Moreover, adolescents with autism and other DD could benefit from behavioral supports in response to a few specific ACEs while addressing household mental health problems could have widespread benefits that improve pediatric health. These findings can be used to encourage evidence-based programs and practices to prevent ACEs and offer supports when needed.</p>","PeriodicalId":50215,"journal":{"name":"Journal of Developmental and Behavioral Pediatrics","volume":" ","pages":"e579-e585"},"PeriodicalIF":2.2,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144976947","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-01Epub Date: 2025-08-15DOI: 10.1097/DBP.0000000000001401
Donna S Murray, Julia S Anixt, Vijay Vasudevan, Lynn L Cole, Angie Fedele, Arun Karpur, Wendy L Cornell, Lisa M Latten, Eric M Butter, Daniel L Coury
Objective: Health professionals participating in learning health networks collect data for informing clinical decision-making, research, and quality improvement (QI). To optimize the collection and use of clinical and Parent Reported Outcome (PRO) data for these purposes, it is important to understand the priorities of patient registry "end users" (clinicians, researchers, and patients/families).
Methods: The analysis used a sequential mixed-methods approach with parent (n = 93) and clinician (n = 167) surveys followed by targeted interviews (parent n = 9, clinician/researcher n = 7) completed at Autism Care Network (ACNet) sites to better understand current use of registry data and parent/clinician priorities.
Results: Sixty percent of parents reported receiving behavioral data regarding their child from their health provider in the past, and 90% felt these data would help them understand their child's behavior. Among data access options parents preferred an online portal (72%) and/or the clinic's electronic medical record (59%). Parents indicated willingness to complete surveys longitudinally if the assessments correlated with their child's specific areas of difficulty. Priorities for clinicians included easy access to the data (84%), meaningful connection to clinical outcomes (81%), and measures that can demonstrate change in symptoms over time (76%) and that are easy for families to complete (80%). Both groups recommend assessing parenting stress and social determinants of health.
Conclusion: Consideration of end-user priorities can improve patient registry data collection, analysis, and utilization. Families may be more willing to participate if they can receive direct benefit by accessing their own data and clinicians use this data to optimize clinical care.
{"title":"Preferences for Outcome Data Collection and Access in a Pediatric Autism Learning Health Network Registry.","authors":"Donna S Murray, Julia S Anixt, Vijay Vasudevan, Lynn L Cole, Angie Fedele, Arun Karpur, Wendy L Cornell, Lisa M Latten, Eric M Butter, Daniel L Coury","doi":"10.1097/DBP.0000000000001401","DOIUrl":"10.1097/DBP.0000000000001401","url":null,"abstract":"<p><strong>Objective: </strong>Health professionals participating in learning health networks collect data for informing clinical decision-making, research, and quality improvement (QI). To optimize the collection and use of clinical and Parent Reported Outcome (PRO) data for these purposes, it is important to understand the priorities of patient registry \"end users\" (clinicians, researchers, and patients/families).</p><p><strong>Methods: </strong>The analysis used a sequential mixed-methods approach with parent (n = 93) and clinician (n = 167) surveys followed by targeted interviews (parent n = 9, clinician/researcher n = 7) completed at Autism Care Network (ACNet) sites to better understand current use of registry data and parent/clinician priorities.</p><p><strong>Results: </strong>Sixty percent of parents reported receiving behavioral data regarding their child from their health provider in the past, and 90% felt these data would help them understand their child's behavior. Among data access options parents preferred an online portal (72%) and/or the clinic's electronic medical record (59%). Parents indicated willingness to complete surveys longitudinally if the assessments correlated with their child's specific areas of difficulty. Priorities for clinicians included easy access to the data (84%), meaningful connection to clinical outcomes (81%), and measures that can demonstrate change in symptoms over time (76%) and that are easy for families to complete (80%). Both groups recommend assessing parenting stress and social determinants of health.</p><p><strong>Conclusion: </strong>Consideration of end-user priorities can improve patient registry data collection, analysis, and utilization. Families may be more willing to participate if they can receive direct benefit by accessing their own data and clinicians use this data to optimize clinical care.</p>","PeriodicalId":50215,"journal":{"name":"Journal of Developmental and Behavioral Pediatrics","volume":" ","pages":"e572-e578"},"PeriodicalIF":2.2,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144977088","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-01Epub Date: 2025-08-15DOI: 10.1097/DBP.0000000000001407
Quyen Cao, Julie Kable
Objective: A systematic review using Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines was conducted to evaluate the potential adverse impacts on neurodevelopment associated with prenatal opiate exposure.
Method: After applying exclusion criteria to the identified collection of studies, 86 studies were included in this review. Each article was evaluated using the Grading of Recommendations, Assessment, Development, and Evaluations system. Results were grouped into 6 neurobehavioral function domains (executive, language, general development, motor, neurosensory, and socioemotional) and 1 neuroimaging domain.
Result: Risk difference analyses showed the neurosensory domain in children prenatally exposed to opioid had highest risk of impairment (76.9%), whereas the executive domain had lowest risk (44.8%). The meta-analysis of pooled estimates after statistical adjustments associated with the Egger's test results showed effect size (Hedge's g) was largest in the socioemotional domain (-1.14; 95% CI, -1.61 to -0.66) and smallest in the general development domain (-0.44; 95% CI, -0.70 to -0.18). Neuroimaging studies on prenatal exposure to opioid were limited and varied in the techniques and topographical focus in their approaches, resulting in a heterogenous body of literature.
Conclusion: Maternal opioid use during pregnancy can serve as a risk indicator for an at-risk child and the potential need for monitoring the child's neurodevelopmental growth. The conclusions related to the direct teratogenic effects of maternal opioid use, however, are often limited by poor experimental and statistical controls used to address other substances and social adversity that co-occur with opioid use.
{"title":"A Systematic Study on Prenatal Opioid Exposure: A Review of Neurodevelopmental Consequences.","authors":"Quyen Cao, Julie Kable","doi":"10.1097/DBP.0000000000001407","DOIUrl":"10.1097/DBP.0000000000001407","url":null,"abstract":"<p><strong>Objective: </strong>A systematic review using Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines was conducted to evaluate the potential adverse impacts on neurodevelopment associated with prenatal opiate exposure.</p><p><strong>Method: </strong>After applying exclusion criteria to the identified collection of studies, 86 studies were included in this review. Each article was evaluated using the Grading of Recommendations, Assessment, Development, and Evaluations system. Results were grouped into 6 neurobehavioral function domains (executive, language, general development, motor, neurosensory, and socioemotional) and 1 neuroimaging domain.</p><p><strong>Result: </strong>Risk difference analyses showed the neurosensory domain in children prenatally exposed to opioid had highest risk of impairment (76.9%), whereas the executive domain had lowest risk (44.8%). The meta-analysis of pooled estimates after statistical adjustments associated with the Egger's test results showed effect size (Hedge's g) was largest in the socioemotional domain (-1.14; 95% CI, -1.61 to -0.66) and smallest in the general development domain (-0.44; 95% CI, -0.70 to -0.18). Neuroimaging studies on prenatal exposure to opioid were limited and varied in the techniques and topographical focus in their approaches, resulting in a heterogenous body of literature.</p><p><strong>Conclusion: </strong>Maternal opioid use during pregnancy can serve as a risk indicator for an at-risk child and the potential need for monitoring the child's neurodevelopmental growth. The conclusions related to the direct teratogenic effects of maternal opioid use, however, are often limited by poor experimental and statistical controls used to address other substances and social adversity that co-occur with opioid use.</p>","PeriodicalId":50215,"journal":{"name":"Journal of Developmental and Behavioral Pediatrics","volume":" ","pages":"e621-e631"},"PeriodicalIF":2.2,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12695250/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144976981","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-01Epub Date: 2025-08-01DOI: 10.1097/DBP.0000000000001406
Katelynn S Porto, Andrea Trubanova Wieckowski, Deborah A Fein, Marianne L Barton, Grace T Baranek, Diana L Robins
Objective: To determine the performance of autism screeners at 12 and 15 months of age.
Methods: Children were screened either at 12- (n = 1473) or 15-month (n = 1227) primary care visits. Children were screened with both the Infant/Toddler Checklist (ITC) and the First Year Inventory-Lite (FYI-L) at 12 months and FYI-L and the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) at 15 months. After a positive screen and/or clinical concern, families were offered a no-cost diagnostic evaluation.
Results: Of the 1473 toddlers screened at 12 months, 223 screened positive and 107 attended a diagnostic evaluation. Of the 1227 children screened at 15 months, 252 screened positive and 94 attended the evaluation. Overall, specificity for autism was high (>0.94) for all screeners at 12 and 15 months. At 12-month screening, sensitivity for autism was low on the ITC (0.26) and moderate on the FYI-L (0.67). Positive predictive value (PPV) was low for both screeners (0.24 for ITC and FYI-L). At 15 months, both the FYI-L and the M-CHAT-R/F demonstrated moderate sensitivity (0.61 for FYI-L and 0.60 for the M-CHAT-R/F) and low PPV (0.16 for FYI-L and 0.31 for M-CHAT-R/F).
Conclusion: Although data do not support universal screening at younger ages, the study identifies tools that can be used at 12 and 15 months. Importantly, screening at these ages does not identify all cases of autism, and repeat screening at 18 months and beyond is essential to support autism detection as early as possible.
{"title":"Comparison of Available Tools to Screen for Autism at 12 and 15 Months.","authors":"Katelynn S Porto, Andrea Trubanova Wieckowski, Deborah A Fein, Marianne L Barton, Grace T Baranek, Diana L Robins","doi":"10.1097/DBP.0000000000001406","DOIUrl":"10.1097/DBP.0000000000001406","url":null,"abstract":"<p><strong>Objective: </strong>To determine the performance of autism screeners at 12 and 15 months of age.</p><p><strong>Methods: </strong>Children were screened either at 12- (n = 1473) or 15-month (n = 1227) primary care visits. Children were screened with both the Infant/Toddler Checklist (ITC) and the First Year Inventory-Lite (FYI-L) at 12 months and FYI-L and the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) at 15 months. After a positive screen and/or clinical concern, families were offered a no-cost diagnostic evaluation.</p><p><strong>Results: </strong>Of the 1473 toddlers screened at 12 months, 223 screened positive and 107 attended a diagnostic evaluation. Of the 1227 children screened at 15 months, 252 screened positive and 94 attended the evaluation. Overall, specificity for autism was high (>0.94) for all screeners at 12 and 15 months. At 12-month screening, sensitivity for autism was low on the ITC (0.26) and moderate on the FYI-L (0.67). Positive predictive value (PPV) was low for both screeners (0.24 for ITC and FYI-L). At 15 months, both the FYI-L and the M-CHAT-R/F demonstrated moderate sensitivity (0.61 for FYI-L and 0.60 for the M-CHAT-R/F) and low PPV (0.16 for FYI-L and 0.31 for M-CHAT-R/F).</p><p><strong>Conclusion: </strong>Although data do not support universal screening at younger ages, the study identifies tools that can be used at 12 and 15 months. Importantly, screening at these ages does not identify all cases of autism, and repeat screening at 18 months and beyond is essential to support autism detection as early as possible.</p>","PeriodicalId":50215,"journal":{"name":"Journal of Developmental and Behavioral Pediatrics","volume":" ","pages":"e564-e571"},"PeriodicalIF":2.2,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12908181/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144785843","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}