Cerebral Palsy and Motor Impairment After Extreme Prematurity: Prediction of Diagnoses at Ages 2 and 10 Years.

OBJECTIVE: To identify perinatal factors in children born extremely preterm (EP) that were associated with motor impairment (MI) at 2 and 10 years of age and develop a predictive algorithm to estimate the risk of MI during childhood. STUDY DESIGN: Participants of the Extremely Low Gestational Age Newborns Study (ELGANS) were classified as: no MI, MI only at 2 years, MI only at 10 years, and MI at both 2 and 10 years, based on a standardized neurological examination at 2 and the Gross Motor Function Classification System (GMFCS) at 10 years of age. Least Absolute Shrinkage and Selection Operator (LASSO) regression was used to develop the final predictive model. RESULTS: Of the 849 study participants, 64 (7.5%) had a diagnosis of MI at both 2 and 10 years and 63 (7.4%) had a diagnosis of MI at 1 visit but not the other. Of 22 total risk factors queried, 4 variables most reliably and accurately predicted MI: gestational age, weight z-score growth trajectory during neonatal intensive care unit (NICU) stay, ventriculomegaly, and cerebral echolucency on head ultrasound. By selecting probability thresholds of 3.5% and 7.0% at ages 2 and 10, respectively, likelihood of developing MI can be predicted with a sensitivity and specificity of 71.2%/72.1% at age 2 and 70.7%/70.7% at age 10. CONCLUSION: In our cohort, the diagnosis of MI at 2 years did not always predict a diagnosis of MI at 10 years. Specific risk factors are predictive of MI and can estimate an individual infant's risk at NICU discharge of MI at age 10 years.

Time to Diagnosis of Autism Spectrum Disorders in Children with Coexisting Developmental Behavioral Disorders.

OBJECTIVE: Our study evaluates whether having an alternate developmental behavioral disorder (DBDs) diagnosis before diagnosis of autism spectrum disorders (ASD) is associated with delays in diagnosis in a nationally representative sample. METHODS: Data were obtained from the 2011 National Survey of Pathways to Diagnosis and Services, a survey of children aged 6 to 17 years with ASD, developmental delay, or intellectual disability. A total of 1049 children met inclusion criteria for this study. Of these, 799 children were identified as "late" diagnosis if >12 months elapsed between the age parents reported concerns to a provider and age of ASD diagnosis and 250 as "timely" diagnosis if the gap was ≤12 months. Univariate and multivariate logistic regressions were used to look for association between having an alternate DBDs diagnosed before ASD and "timely" versus "late" ASD diagnosis. RESULTS: The mean time elapsed between the age parents reported concerns to a provider and age of ASD diagnosis was 51 months for children with an alternate DBDs diagnosis before receiving ASD diagnosis and 29 months for those diagnosed with alternate DBDs concurrently with ASD. Having alternate DBDs diagnosis before diagnosis with ASD was associated with "late" ASD diagnosis as follows: developmental delay (adjusted odds ratio [aOR,] 3.46; 95% confidence interval [CI], 1.86-6.42; p < 0.001), intellectual disability (aOR, 9.75; 95% CI, 3.0-31.60; p = 0.04), attention-deficit disorder (aOR, 11.07; 95% CI, 3.43-35.71; p < 0.001), depression (aOR, 8.05; 95% CI, 1.07-60.03; p = 0.0495), and behavioral conduct disorder (aOR, 9.9; 95% CI, 3.55-27.62; p < 0.001). CONCLUSION: These findings highlight the importance of research to improve the early diagnosis of ASD even in the presence of coexisting developmental behavioral disorders.

Factors Associated with Resilience in Families of Children with Autism Spectrum Disorder.

OBJECTIVES: Families of children with autism spectrum disorder (ASD) report high levels of stress and poor psychological functioning. Resilience serves to buffer these challenges. Little is known about the factors associated with resilience in these families. METHODS: Data from the National Survey of Children's Health (NSCH) 2016 were used to investigate independent child, parent, and health care factors associated with resilience in families of children with ASD. We used the NSCH's family resilience composite derived from 4 survey questions focused on (1) communication, (2) working together to solve problems, (3) drawing on strengths, and (4) staying hopeful during difficult times. We defined family resilience as high or low based on the number of questions answered "all of the time" or "most of the time" versus "some of the time" or "none," respectively. Using survey weights, univariate and multivariate logistic regression analyses identified associations of child, parent, and health care factors with low family resilience. RESULTS: We analyzed data representing 1151 children with ASD. Low resilience was reported in 32% of families. Low family resilience was significantly associated with parent factors such as not having someone to turn to for support, cutting work hours, and feeling "child hard to care for"; child ASD-related factors such as moderate ASD severity; and health care factors such as lack of satisfaction in communications with providers. CONCLUSION: The findings highlight specific vulnerabilities in families of children with ASD that are associated with low family resilience. Intervention approaches that have the ability to improve overall family resilience should be carefully considered.

Implementation of M-CHAT Screening for Autism in Primary Care in Saudi Arabia.

Background. Integration of autism screening into primary care practice in Saudi Arabia is not well established. Objectives. To evaluate the feasibility and effectiveness of implementing the Arabic Modified Checklist for Autism in Toddlers (M-CHAT) in a primary care practice at John Hopkins Aramco Healthcare Center in Saudi Arabia. Method. The Arabic version of M-CHAT was distributed to caregivers of 1207 toddlers (16-32 months) from January to December 2014. Feasibility was assessed by measuring the proportion of visits with M-CHAT completed, and reports of workflow challenges and provider satisfaction. The effectiveness of screening was evaluated based on the number of referrals for autism evaluation and autism identification rates. Results. Total M-CHAT completion rate was 89% (1078 out of 1207 child-specific visits). Those identified as low risk (n = 951; 88%) were reassured and followed routinely. Those screening positive (n = 127; 12%) were referred for diagnostic assessment. Twelve (1% of toddlers screened) were diagnosed with autism at a mean age of 24 months. In addition, positive M-CHAT detected speech delay and social anxiety. Providers acknowledged their satisfaction with the M-CHAT implementation process; the main challenge was communicating to families the importance of screening. Referrals for diagnostic evaluations increased from 23 to 43 cases in the first year, and 35 in the second year. Conclusion. Implementation of the autism screening using the Arabic M-CHAT is feasible and effective in a primary care setting in Saudi Arabia. Sustaining the implementation of developmental screening in practice requires staff engagement and systematic monitoring of the impact of change.

Parent and Provider Perspectives on the Diagnosis and Management of Autism in a Chinese Immigrant Population.

OBJECTIVE: Minority families experience disparities in the diagnosis and management of autism spectrum disorder (hereafter "autism"). To date, the experiences of Chinese immigrant families in the United States have not been explored. Utilizing parent and provider perspectives, this research sought to identify barriers and facilitators to the diagnosis and management of autism among Chinese immigrant children. METHODS: We conducted semistructured qualitative interviews with 16 parents of Chinese children diagnosed with autism and 16 providers who assist in the diagnosis and management of autism. Participant characteristics were analyzed utilizing descriptive statistics. Interviews were audiorecorded, transcribed, translated, and independently coded by 2 researchers until consensus was reached. Coded data were analyzed using a modified grounded therapy approach. RESULTS: Parents and providers both identified cultural beliefs as an influence on the understanding and acceptance of autism as a diagnosis. There was a high degree of alignment in themes related to barriers to health care access and parent-provider communication. Recommendations to improve the system of care include (1) supporting communication, (2) cultural sensitivity, and (3) care coordination programming. CONCLUSION: Findings reinforce that diagnosis and treatment of autism should take into account culturally specific beliefs about child developmental norms and should address systems-, provider-, and family-level barriers.

Mental health beliefs and barriers to accessing mental health services in youth aging out of foster care.

OBJECTIVE: To examine the perspectives of youth on factors that influence mental health service use after aging out of foster care. METHODS: Focus groups were conducted with youth with a history of mental health needs and previous service use who had aged out of foster care. Questions were informed by the Health Belief Model and addressed 4 domains: youth perceptions of the "threat of mental health problems," treatment benefits versus barriers to accessing mental health services, self-efficacy, and "cues to action." Data were analyzed using a modified grounded-theory approach. RESULTS: Youth (N = 28) reported ongoing mental health problems affecting their functioning; however, they articulated variable levels of reliance on formal mental health treatment versus their own ability to resolve these problems without treatment. Past mental health service experiences influenced whether youth viewed treatment options as beneficial. Youth identified limited self-efficacy and insufficient psychosocial supports "cueing action" during their transition out of foster care. Barriers to accessing mental health services included difficulties obtaining health insurance, finding a mental health provider, scheduling appointments, and transportation. CONCLUSIONS: Youths' perceptions of their mental health needs, self-efficacy, psychosocial supports during transition, and access barriers influence mental health service use after aging out of foster care. Results suggest that strategies are needed to 1) help youth and clinicians negotiate shared understanding of mental health treatment needs and options, 2) incorporate mental health into transition planning, and 3) address insurance and other systemic barriers to accessing mental health services after aging out of foster care.

Challenges of autism in the inpatient setting.

CASE: Julie is a 4-year-old girl with autism spectrum disorder (ASD) who presented to the emergency room with severe unilateral hip pain and limping. Initial evaluation indicated increased inflammatory markers and blasts on a blood smear. A bone marrow biopsy revealed acute lymphoblastic leukemia (ALL), and Julie was admitted for induction chemotherapy. Julie was diagnosed with ASD 1 year before this presentation. Her parents, who had immigrated to the United States from China before her birth, indicated that it took them some time to accept the diagnosis of ASD but they were feeling more confident in addressing her behavior challenges and comfortable with the progress she had been making. They now expressed concerns about the possible loss of services in the setting of her hospitalization. At the time of diagnosis, Julie had been receiving in-home behavioral therapy (applied behavioral analysis), speech therapy, and occupational therapy at a hospital-based center. In addition, she had an individualized education plan and was enrolled in a specialized preschool classroom for children with ASD.As Julie's hospital stay became more prolonged, her medical care team started reporting more challenges communicating with Julie without the presence of 1 of her parents, difficulty conducting routine care (e.g., obtaining vitals), sleep disruption, and safety concerns (e.g., Julie would frequently climb on the window sill increasing her fall risk). As her primary care clinician, you are called by the hospital team to help bridge the communication and behavioral divide that has widened--what would you do next?

Recidivism in the child protection system: identifying children at greatest risk of reabuse among those remaining in the home.

OBJECTIVE: To identify risk clusters that are associated with higher or lower risk of new abuse reports (rereports) and substantiated rereports (reabuse) in children who remain in the home after an abuse report. DESIGN: A 5-year prospective cohort study. SETTING: National Survey of Child and Adolescent Well-Being. PARTICIPANTS: Children reported to the child protection system for child abuse. MAIN EXPOSURE: Remaining in the home after an abuse report. MAIN OUTCOME MEASURE: Incidence of rereports and reabuse. RESULTS: A total of 2578 children remained in the home following an abuse report, and 44% were rereported within the follow-up period. In bivariate analyses, children with behavior problems (49% vs 38%), caregivers with an abuse history (33% vs 16%) or a child welfare history (38% vs 25%), and families with an annual income lower than $20 000 (70% vs 60%) were more likely to be rereported. Forty-five percent of rereports were substantiated reabuse, but 2 risk clusters had a higher incidence: (1) the cluster with a substantiated index report, having a caregiver without parenting class, non-African American race/ethnicity, and caregiver younger than 41.5 years (54%); and (2) the cluster with a substantiated index report, a caregiver with parenting class, and child age younger than 8.5 years (60%). The lowest risk group for reabuse had a substantiated index report, a caregiver without parenting class, non-African American race/ethnicity, and a caregiver 41.5 years or older (26%). CONCLUSIONS: Among children remaining in the home following an abuse report, specific risk groups have higher and lower incidence of rereports and reabuse. These risk-group categories may be useful to child protection services and others in identifying at-risk children and making decisions about placement and services.

Health outcomes and family services in kinship care: analysis of a national sample of children in the child welfare system.

OBJECTIVES: To comprehensively assess family services, health, and health care outcomes for US children in kinship care vs foster care. DESIGN: A 3-year prospective cohort study. SETTING: National Survey of Child and Adolescent Well-Being. PARTICIPANTS: The sample consisted of 1308 US children entering out-of-home care following reported maltreatment. MAIN EXPOSURE: Kinship care vs foster care. MAIN OUTCOME MEASURES: Baseline caregivers' support services and the children's behavioral, mental health, and health service use outcomes 3 years after placement. RESULTS: Kinship caregivers were more likely than foster caregivers to have a low socioeconomic status but reported significantly fewer support services (caregiver subsidies, parent training, peer support, and respite care). Kinship care was associated with a lower risk ratio (RR) of continuing behavioral problems (RR = 0.59; 95% confidence interval [CI], 0.41-0.80), low social skills (RR = 0.61; 95% CI, 0.40-0.87), mental health therapy use (RR = 0.45; 95% CI, 0.27-0.73), and psychotropic medication use (RR = 0.46; 95% CI, 0.24-0.82) but higher risk of substance use (RR = 1.88; 95% CI, 0.92-3.20) and pregnancy (RR = 4.78; 95% CI, 1.07-17.11). CONCLUSIONS: Kinship caregivers received fewer support services than foster caregivers. Children in kinship care fared better with behavioral and social skills problems, mental health therapy use, and psychotropic medication use. Adolescents in kinship care may be at higher risk for substance use and pregnancy.

The language and culture of delay.

CASE: Satish is a 3 (1/2)-year-old boy you are seeing in your primary care office for a "sick visit" due to parental concerns about his language development. He is the only child of a couple who immigrated to the United States from India shortly before his birth. He received early intervention services for speech and language delays for a few months before he attained 2 years of age. However, services were discontinued when the family moved back to India for a year. After the family returned to the United States, they lived in a different state for several months before moving again recently to his current home, so he is relatively new to your practice. Satish's mother is concerned not only about his communication skills but also about his attention and social skills. She notes that he often plays alone or in parallel with other children. She was also told by his first pediatrician that Satish had "a limited imagination." His parents feel that he has pretend play, in that he will pretend to get his haircut, talk on the phone, or ride on a train. Satish was born at term without complications. He passed his newborn hearing screen and a repeat hearing test at the age of 2 years. He has had no medical problems and takes a daily multivitamin. His parents are both of Indian descent. Satish's father is an engineer and had a history of being a late talker. His mother graduated from high school and is a homemaker. They are expecting their second child. Satish's developmental history is significant for language delays. He babbled at 6 months but did not have single words until he was 2 years. When he was 2 (1/2) years, he had 2 to 3 word sentences. He responded to his name at 15 months and could follow single step commands by the age of 2 years. Currently, Satish is noted to have difficulty with "back and forth conversation." He sometimes repeats what others are saying.The family speaks Hindi, their native language, exclusively at home. When Satish speaks, he usually speaks in Hindi. His parents describe him as using "odd language" in that he will often mix up his pronouns. Satish is in an English-speaking preschool. His preschool teachers report concerns that he seems to "withdraw into his own world," and does not interact well with the other children. They also report attentional problems and poor eye contact.In the office, Satish makes good eye contact with the examiner and his parents. He looks to his parents for approval when completing a task requested of him. He seems to like an Elmo toy that is in the room but holds it and looks at it closely rather than pretend to do anything with it. You ask him to feed Elmo, and he says, "Feed Elmo." Because it is not clear whether he understands the verbal cues given to him, his parents repeat English directions to him in Hindi several times. He eventually complies but then leaves his chair to explore the room. His parents continue to translate your questions to him with variable results. He becomes increasingly difficult to engage, despite repeated attempts, in both English and Hindi, to attract his attention. Where do you go from here?