As the baby’s brain grows, the skull can become more misshapen. The validity and reliability of both instruments have been well-demonstrated in many previous studies.21 In addition, two meta-analyses have assessed agreement on behavior and emotional problems for children based on different reporters including agreement between two parents and agreement between parents and teachers.13,14 Both found relatively high correlations between parents (on average r =0.60–0.70), but lower correlations between parents and teachers (on average r =0.20–.30). already built in. In: Schaefer CE, editor. Craniosynostosis requires evaluation by specialists, such as a pediatric neurosurgeon or plastic surgeon. A Child Behavior Checklist (CBCL) was completed when children were ~19 months by 436 mothers (219 with SSC) and 371 fathers (177 with SSC); and at ~37 months by 361 mothers (175 with SSC) and 303 fathers (142 with SSC). The types of craniosynostosis depend on what sutures join together early. Patients may suffer from head deformity that can be acute and permanent if left untreated [4]. Few children received out-of-home childcare at either age point, and CTRF data were only available for a subset of children in both groups (47 patients and 51 controls at T1; 48 patients and 72 controls at T2; 21 patients and 26 controls at both time points). Twelve percent of eligible controls did not respond when contacted after a match was made. Proportion of children with single suture craniosynostosis (SSC) versus controls scoring in the “borderline” or “clinical” rangea on the Child Behavior Checklist (CBCL) and Caregiver-Teacher Report Form (CTRF) at Time 1 and Time 2. A significant limitation is the differential loss of participants across time from lower SES backgrounds and from minority groups, not unusual in longitudinal studies.26 However, we used inverse probability weighting to determine whether this bias substantially altered our findings; there was no evidence that it did so. 2008;146A:984–991. This causes problems with normal brain and skull growth. They also have low self-esteem and behavioral problems. We used descriptive statistics to summarize demographic characteristics separately for children with and without SSC. Skull or facial bones to become irregular in shape. Imaging studies. Kapp-Simon KA, Speltz ML, Cunningham ML, Patel PK, Tomita T. Neurodevelopment of children with single suture craniosynostosis: a review. 2011;26:451–457. The authors have no conflicts of interest to report. Certain medications ― Women who report using clomiphene citrate (a fertility medication) just before or early in pregnancy are more likely to have a baby with craniosynostosis, compared to women who didn’t take this medicine. Craniosynostosis is a condition where one or more of the sutures of the skull close too early. Sometimes, it is diagnosed later in life. The ePub format uses eBook readers, which have several "ease of reading" features Methodologically, this study represents an advance over previous work in that it included a well-matched control group, longitudinal data points and multiple informants. Am J Med Genet Part A. Given the potential persistence of untreated behavior problems,28, 29 the effectiveness of behavioral interventions in early life,30 and the ease of developmental surveillance for children already followed closely by craniofacial teams, young children with SSC should be routinely screened with a measure like the CBCL, which is a low-cost method of identifying high risk children. The predictive validity of parent and teacher reports of ADHD symptoms. In two of these studies, the Child Behavior Checklist (CBCL) was given to children with SSC in hospital-based craniofacial programs.5, 6 The third study relied on parent report to assess behavioral problems among 63 children with metopic craniosynostosis evaluated over a 10 year period.7 The fourth study featured a population-based cohort in which mothers of 82 children with SSC were interviewed by telephone.8 Both CBCL studies found elevated rates of reported behavior problems in the clinical risk range, from 15% to 35% depending on age and CBCL scale. Other possible problems (which can involve long term effects) include: Seizures; Developmental delays; Learning disabilities and vision problems, in later years Twins were eligible to participate in the study if one of them had SSC. Average CBCL/CTRF externalizing, internalizing and total scores for all informants were consistently higher (worse) for children with SSC than control group children, but most differences were small and statistically non-significant. Surgery can correct it. Obstructive sleep apnea-specific quality of life and behavioral problems in children with syndromic craniosynostosis. Craniosynostosis is a birth defect where the cranial sutures (fibrous joints between skull bones) are permanently fused. On all scales, a higher score indicates more problems. We hypothesized higher levels of maladjustment for children with SSC than comparison children, particularly at the older age and in selected areas of previously observed vulnerability: attention and social adjustment. The CBCL and CTRF have 99 items that are rated on 3-point rating scales: 0 = not true (as far as you know), 1 = somewhat or sometimes true, and 2 = very true or often true. Exploratory analyses of diagnostic subgroups among children with SSC found no evidence of behavioral differences associated with location of the isolated cranial suture. The objective of this study was to determine if a sample of Mexican preschoolers with non-syndromic craniosynostosis had more clinical and adaptive behavioral problems than those of their peers. We are experimenting with display styles that make it easier to read articles in PMC. No study of SSC has yet included a control group nor examined children at more than one time point. At T1 children with SSC had more behavior problems than unaffected controls on all scales of the CTRF (ES = 0.32 to 0.43), though these differences were imprecise with p-values ranging from 0.063 to 0.133 (Table 3). A total of 270 patients were enrolled in the parent study, representing 84% of all those eligible. Results from a large-scale population study. The ePub format is best viewed in the iBooks reader. The predictive significance of these small differences is presently unclear, but may relate to the sensitivity and specificity of these scales for detecting subtle maturational differences in attention and socialization that typically occur during this time frame. Both CBCL studies also found higher rates of problem behaviors among older children, though it is possible that more severely impaired children were more likely to maintain contact with the craniofacial programs from which they were recruited. Maternal thyroid disease ― Women with thyroid disease or who are treated for thyroid disease while they are pregnant have a higher chance of having an infant with craniosynostosis, compared to women who don’t have thyroid disease. Craniosynostosis that's not corrected can cause pressure inside the skull (intracranial pressure). These are important considerations as behavior problems are correlated with socio-demographic factors11 and are only moderately stable over time.12 The previous studies relied solely on maternal reports and different informants can provide very different perspectives on child functioning (e.g., mothers versus fathers; teachers versus parents), with moderate correspondence among them.13, 14, The present study examined children with and without SSC who were identified in infancy and whose behaviors were assessed by multiple informants (mothers, fathers, and teachers). Some babies have a craniosynostosis because of changes in their genes. No differences associated with suture site were found. Your child may just have regular check-ups to monitor it. Compared to participants, non-participants (i.e., children who were enrolled in the study but lost to follow-up prior to T1) were less likely to be white (61% non-participants, versus 74% participants) and less likely to be from a middle to upper SES family (46% non-participants, versus 71% participants). We also examined the demographics and T1 behavioral outcomes of participants versus those lost to follow-up between T1 and T2. However, in most cases, craniosynostosis is thought to be caused by a combination of genes and other factors, such as things the mother comes in contact with in her environment, or what the mother eats or drinks, or certain medications she uses during pregnancy. Maternal thyroid disease as a risk factor for craniosynostosis. The study was approved by the institutional review boards (IRB) from each participating center: Seattle Children's Hospital; Children’s Memorial Hospital and Northwestern University in Chicago; Children’s Healthcare of Atlanta, St. Louis Children’s Hospital; University of Illinois in Chicago (UIC), the University of Chicago (UC) and Children’s Hospital of Philadelphia (CHOP). Babies with craniosynostosis can often benefit from early interventionexternal icon services to help with any developmental delays or intellectual problems. Craniosynostosis can also cause increased pressure in the brain, which can lead to vision loss and learning problems. The images are in the public domain and thus free of any copyright restrictions. A total problem scale provides a summary score for all problems endorsed. Unadjusted mean standard scores and standard deviations from the CBCL and CTRF for children with and without single suture craniosynostosis are provided in Table 3. Asymmetry of the orbits often leads to strabismus. To examine for attrition bias, we compared the demographic characteristics of participants and non-participants at T1 (i.e., those who were enrolled in the study, but lost to follow-up before completing T1 questionnaires). The CBCL was mailed to the parents before the T1 and T2 assessments with a request that they bring their completed questionnaire to the child’s neurodevelopmental assessment. Your doctor will feel your baby's head for abnormalities such as suture ridges, and look for facial deformities. Differences in CBCL scores between T2 participants and non-participants were small (differences in T-scores = 0.0 to 0.8 on broad band scales). Results indicate that overall, school-aged children with single suture craniosynostosis have higher scores on the CBCL than the general population; specific elevations were observed including somatic complaints, aggressive behavior, social problems, attention problems, and thought problems and rule-breaking behavior. Campbell SB, Spieker S, Burchinal M, Poe MD. But, the timing of surgery depends on which sutures are closed and whether the baby has one of the genetic syndromes that can cause craniosynostosis. Long-term neuropsychological development in single-suture craniosynostosis treated early. OBJECTIVE: We compared the developmental status of school-age children with single-suture craniosynostosis (case group) and unaffected children (control group). Longitudinal analysis of emotional problems in children with congenital heart defects: a follow-up from age 6 to 36 months. Approximately one third of patients and controls were female and >70% were of white, non-Hispanic race/ethnicity. Many of the problems a baby can have depend on: Sometimes, if the condition is not treated, the build-up of pressure in the baby’s skull can lead to problems, such as blindness, seizures, or brain damage. A minimum of one caregiver/teacher report was available for 169 of these children (74 with SSC) using the Caregiver-Teacher Report Form (CTRF). The Centers for Disease Control and Prevention (CDC) cannot attest to the accuracy of a non-federal website. Differences by SSC diagnostic sub-group were small and were not statistically significant at T1 (p = 0.552 to 0.688) or T2 (p = 0.383 to 0.731). In these cases, premature closure of the sutures may prevent the skull from expanding sufficiently to allow normal brain growth, and cause the pressure inside of the head to increase. You will be subject to the destination website's privacy policy when you follow the link. Fifty-two families declined actively (n = 29) by expressing lack of interest or passively (n = 23) by not responding to attempts to contact them. Following IRB-approved protocols for each institution, parents of children in preschool or childcare were asked to have the child’s teacher or other caregiver complete the CTRF. Kids with craniosynostosis have an irregular head shape. Finally, we examined the correlation between informants at both visits using Pearson’s r for the Externalizing, Internalizing, and Total Problems scores. The causes of craniosynostosis in most infants are unknown. Surgery may be recommended if: it's severe – this could affect how your child's brain grows or lead to problems like low self-esteem as they get older The percentages of children falling into the "clinical range" defined by the CBCL and CTRF (T scores ≥ 60) were also generally higher for patients than controls, but OR were mostly imprecise and group differences statistically non-significant. A suggestion based on homeobox gene variants and MECP2 mutations. Total of Emotionally Reactive, Anxious/Depressed, Somatic Complaints, and Withdrawn Syndrome Scales, Total of Attention Problems and Aggressive Behavior Syndrome Scales, Total of all 7 (6 for CTRF) Syndrome Scales, Mood instability, difficulty handling change, whiny, Problems with separation, self-consciousness, fearfulness, Problems with eating, bowels, nausea, aches and pains, Lack of interest in age appropriate behaviors, unresponsive to affection, Resists bed, frequent nighttime waking, nightmares, Doesn’t focus, wanders away, shifts from one activity to another quickly, Defiant, gets into frequent fights, hits and bites, temper tantrums, Symptoms associated with Major Depressive Disorder and Dysthymic Disorder, Symptoms associated with General Anxiety Disorder, Social Anxiety Disorder and Specific Phobia, Symptoms associated with Autism Spectrum Disorders including Asperger’s Syndrome, Attention Deficit/ Hyperactivity Problems, Symptoms associated with inattentive and hyperactive types of attention disorders, Symptoms associated with aggression, anger, temper tantrums. Sometimes, special medical helmets can be used to help mold the baby’s skull into a more regular shape. Aside from facial deformities, other possible clinical problems include hearing loss, dental crowding, nasal airway obstruction, a v-shaped palate and a … Use of clomiphene citrate and birth defects, National Birth Defects Prevention Study, 1997–2005. 2. Background. Differences were negligible based on gender (64% non-participants were male, versus 65% participants). There were few meaningful differences on these scales at T1, but by T2 both mothers and fathers (but not teachers) were reporting higher average scores for patients than did parents of controls on the scales related to anxiety and attention, with generally small to medium effects sizes (.20 to .31). The authors hypothesized that children with single-suture craniosynostosis would have higher levels of maladjustment than comparison children, particularly … To evaluate changes in the magnitude of group differences across the two age points, we examined the interaction between SSC status and age using generalized estimating equations (GEE),23 which accounts for repeated observations within subjects, adjusting for age at each visit as a time-varying covariate. Social-emotional screening status in early childhood predicts elementary school outcomes. Craniosynostosis is a birth defect in which the bones in a baby’s skull join together too early. Power TJ, Doherty BJ, Panichelli-Mindel SM, Karustis JL, Eiraldi RB, Anastopoulos AD, et al. Sometimes, though, more than one suture closes too early. In 2015, Dr. Matthew Speltz’s team published results indicating that school-age children with the most common form of craniosynostosis are more likely to suffer developmental delays and learning problems than … Among patients, 102 had sagittal synostosis, 53 had metopic synostosis, 56 had right or left unilateral coronal synostosis, and 12 had lambdoid synostosis. METHODS: We administered standardized tests of intelligence, reading, … Generating an ePub file may take a long time, please be patient. Abstract Background: The purpose of this study was to confirm initial reports of elevated behavior problems in children with single-suture craniosynostosis, using multiple informants, longitudinal analyses, and a control group. Kathleen A Kapp-Simon, PhD, Brent R Collett, PhD, [...], and Matthew L Speltz, PhD. But in craniosynostosis (kray-nee-oh-sin-oss-TOE-sis), one or more sutures close, either before birth or within a few months after. Our researchers are studying causes, surgical results and long-term outcomes for children with craniosynostosis. The picture generated by these findings--of overall good adjustment for children with SSC --is slightly altered by examination of two specific areas of functioning (social and attention problems), which we targeted because of findings from previous research.5–7, 16, 17 CBCL and CTRF items that capture social difficulties are found on two internalizing syndrome scales (withdrawal and anxiety/depression) and two DSM-IV scales (anxiety and pervasive developmental problems; PDD). At T2, findings were more consistent with mothers’ report: fathers of children with SSC reported that their children had more problems than controls on the following syndrome and DSM scales, respectively: anxiety/depression (ES = 0.24, p = 0.037) and attention problems (ES = 0.21, p = 0.079); DSM anxiety (ES = 0.21, p =0.073), DSM attention deficit hyperactivity disorder (ES = 0.32, p = 0.007), and DSM pervasive developmental problems (ES = 0.21, p = 0.078). The participants were 232 patients with SSC and 235 matched controls for whom questionnaire data were available from one or both assessment visits. Analyses adjusted for study. Other signs may include: Doctors can identify craniosynostosis during a physical exam. Linking to a non-federal website does not constitute an endorsement by CDC or any of its employees of the sponsors or the information and products presented on the website. Heyting A, Tolboom JT, Essers JG. Permanently fused skull bones before brain growth could result in a … Around two years of age, a child’s skull bones begin to join together because the sutures become bone. Relatively few children in either group scored above the established clinical cut-off based on scores from any of the three reporters (Table 5). Background: The purpose of this study was to confirm initial reports of elevated behavior problems in children with single-suture craniosynostosis, using multiple informants, longitudinal analyses, and a control group. Consistent with prior studies of behavioral adjustment in children with significant medical problems,9, 10 these initial studies suggest a modestly higher level of maladjustment among children with SSC. Understanding the factors that are more common among babies with a birth defect will help us learn more about the causes. This can lead to developmental problems, headaches, and brain damage. CDC funds the Centers for Birth Defects Research and Prevention, which collaborate on large studies such as the National Birth Defects Prevention Study (NBDPS; births 1997-2011), to understand the causes of and risks for birth defects, such as craniosynostosis. Behavioral Adjustment of Toddler and Preschool-Aged Children with Single-Suture Craniosynostosis, The publisher's final edited version of this article is available at, Description of Scores from Child Behavior Checklist, Unadjusted T-score means and standard deviations (SD) from Child Behavior Checklist, Proportion of children with single suture craniosynostosis (SSC) versus controls scoring in the “borderline” or “clinical” range, Forest plot presenting adjusted mean differences and effect sizes with 95% confidence intervals (CI) for Child Behavior Checklist (CBCL) and Caregiver-Teacher Report Form (CTRF) syndrome and DSM scores at Time (T) 1 and T2. Non-syndromic trigonocephaly: surgical decision making and long-term cosmetic results. Those not enrolled were mostly infants who “aged out” of the project before they could match to an enrolled case (76% of interested controls). Group differences based on fathers’ report at T1 were negligible on all global scales. Children with SSC had more problems than controls across several domains at T1, though these differences were variable and had large confidence intervals. CDC twenty four seven. This constrained our ability to examine nonparent caregivers’ reports of behavioral adjustment, which tend to have better predictive validity.27. At T2, partial or complete data were available for 180 children with SSC and 190 unaffected controls (70% and 74% of the original cohorts, respectively). Craniosynostosis is a condition where one or more of the sutures close too early. Similarly, at T2 non-participants were less likely to be white (65% non-participants, versus 74% participants) and less likely to be from a middle to upper SES family (52% non-participants versus 73% participants). Metopic synostosis and other types of craniosynostosis should not be confused with plagiocephaly—a different condition that is associated with the baby’s position during sleep. Maternal reports of satisfaction with care and outcomes for children with craniosynostosis. Parents, teachers, and therapists using child-directed play therapy and coaching skills to promote children's social and emotional competence and build positive relationships. Researchers estimate that about 1 in every 2,500 babies is born with craniosynostosis in the United States.1. Four children were later deemed ineligible resulting in a sample of 266 children. We also found little evidence for the hypothesis that behavior problems for children with SSC would worsen over time in relation to controls. As a matter of courtesy we request that the content provider (Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities) be credited and notified in any public or private usage of this image. attention problems (P , .05), and inattention problems (P , .01) than normative population and with other diagnostic subgroups. We also thank Sharman Conner, Rebecca Gaither, and Claudia Crilly Bellucci for project coordination and data collection, Kristen Daniels for data analysis; and Diana Prise for data entry and validation. Differences were again negligible based on gender (65% non-participants were male, compared to 61% participants) and study site (non-participation rate at T2 ranged from 22% to 40%). Speltz, Morton, Goodell, and Clarren (1993) found that children with various craniofacial anomalies—including those with craniosynostosis—were more than twice as likely as children in a matched control group to have teacher- and parent-reported behavior problems at school … However, several methodological limitations reduce the certainty of this impression. The predictive significance of small group differences in attention and social adjustment will be assessed in a follow-up of this cohort at age 7. The doctor also will look for any problems with the shape of the baby’s face. Children with more serious instances of metopic synostosis can experience problems with vision, or learning and behavior. The first and only symptoms are usually changes in the shape of the baby’s head and face. Compared to controls, children with SSC received higher CBCL Internalizing scores reported by mothers at T1 (ES = 0.19, p = .046) (Table 3). When needed, a surgical procedure is usually performed during the first year of life. Becker DB, Petersen JD, Kane AA, Cradock MM, Pilgram TK, Marsh JL. Psychological adjustment to pediatric physical disorders: a meta-analytic review. Chieffo D, Tamburrini G, Massimi L, Di Giovanni S, Giansanti C, Caldarelli M, et al. 3 out of every 4 cases affect males. However, children who have syndromic craniosynostosis had a 1.9 times higher risk for developing intellectual disability (FSIQ <85) compared with the normative population (P <.001) and had more behavioral and emotional problems compared with the normative population, including higher scores on the CBCL/6-18, DBD Total Problems (P <.001), Internalizing (P <.01), social problems (P … Some children with craniosynostosis may have issues with self-esteem if they are concerned with visible differences between themselves and other children. Association with major malformations. We also used logistic regression to calculate odds ratios (OR) to determine whether patients were more likely than controls to score above established clinical cut-offs on the CBCL and CTRF broadband and total scores (defined as T-scores ≥60) based on the reports of any single informant (mother, father or teacher), either parent, or the combination of all three informants. Moore M, Taylor HG, Klein N, Minich N, Hack M. Longitudinal changes in family outcomes of very low birth weight. Seattle Children’s researchers found that the mild to moderate developmental delays that can accompany the most common type of craniosynostosis can be overcome. Non-Participants were male, versus 65 % participants ) occurs in 1 in 2000 live births craniosynostosis and behavior problems! Were negligible on all scales, a surgical procedure is meant to relieve pressure on brain. Developing properly available from one or more tests to help mold the baby ’ s head size time... 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