The Association of Speech/Language Risk With Phonological Awareness, Rapid Naming, and Reading Ability in Children With Cleft Lip and/or Palate.

Children with cleft lip and/or palate were assessed for speech, language, phonological awareness (PA), rapid naming (RN) and reading ability using standardized instruments at baseline (T1; = 142, M = 6.14 years, 51% males) and 2-year follow-up (T2; 89% retention, M = 8.38).

Developmental Risk for Infants with Cleft Lip with or Without Cleft Palate Based on Caregiver-Proxy Reports.

Objectives: (1) Assess caregiver-reported development in infants born with cleft lip ± alveolus (CL ± A) and cleft lip and palate (CLP); (2) determine factors associated with increased developmental risk; and (3) determine consistency of developmental risk before and after surgery for cleft lip.

Design: Prospective, longitudinal assessment of development. Time (T) 1, prior to lip closure; T2, 2 months post lip closure.

Psychosocial Outcomes in Children with Cleft Lip and/or Palate: Associations of Demographic, Cleft Morphologic, and Treatment-Related Variables.

Objective: To determine associations of demographic, morphologic, and treatment protocol parameters with quality of life (QoL), appearance/speech satisfaction, and psychological adjustment.

Design: Observational study utilizing retrospective report of protocol variables and current outcome variables.

Setting: Six North American cleft treatment clinics.

Observations by Caregivers Using the Infant with Clefts Observation Outcomes Instrument (iCOO): A Comparison of Three Versus Seven-day Daily Diaries.

Objective: Our goal was to compare data collected from 3- and 7-day Infant with Clefts Observation Outcomes (iCOO) diaries.

Design: Secondary data analysis of an observational longitudinal cohort study. Caregivers completed the daily iCOO for 7 days before cleft lip surgery (T0) and for 7 days after cleft lip repair (T1).

Caregiver Observations of Infant Well-Being Before and After Cleft Lip Surgery.

Objective: To evaluate the sensitivity to change of daily ratings of the comfort (COMF) and behavioral/emotional health (BEH) domains of the Infants with Clefts Observation Outcomes Instrument (iCOO) at 3 time points, and to assess the association of post-surgical interventions on iCOO ratings.

Design: The COMF and BEH domains were completed by caregivers before (T0), immediately after (T1), and 2-months after (T2) cleft lip (CL) surgery. Analyses included descriptive statistics, correlations, -tests, and generalized estimating equations.

Screening for Academic Risk Among Students With Cleft Lip and/or Palate: Patterns of Risk and Qualities of Effective Tools.

This study evaluated the effectiveness of academic screening measures in relation to parent-reported diagnoses. Multicenter, retrospective cohort study including structured interviews, questionnaires, and chart reviews. Six North American cleft centers.

A Multisite Study Investigating Child and Parent Proxy Reported Quality of Life in Children With Cleft Lip and/or Palate.

This observational, multisite cohort study explored health-related quality of life (HRQoL) in children with cleft lip and/or palate (CL/P), including interrater agreement and ratings for this group relative to clinical cutoff scores and published means for healthy and chronically ill children. Participants (338 children ages 8-10 years, 45.9% male and their parents, 82.

Exploration of Caregiver Interrater Agreement and Test-Retest Reliability on the Infant Cleft Observer Outcomes (iCOO).

Caregiver and observer-reported measures are frequently used as outcomes for research on infants and young children who are unable to report on their own health. Our team developed the Infant with Clefts Observation Outcomes Instrument (iCOO) for infants with cleft lip with or without cleft palate. This exploratory study compared test-retest and interrater reliabilities to inform whether differences in caregiver perspective might affect the iCOO.

Infant with Clefts Observation Outcomes Instrument (iCOO): A New Outcome for Infants and Young Children with Orofacial Clefts.

Objective: We evaluated the measurement properties for item and domain scores of the Infant with Clefts Observation Outcomes Instrument (iCOO).

Design: Cross-sectional (before lip surgery) and longitudinal study (preoperative baseline and 2 days and 2 months after lip surgery).

Setting: Three academic craniofacial centers and national online advertisements.

Retrospective Evaluation of Number of Surgeries and Parent Ratings of Academic and Behavioral Functioning Among Children With Isolated Oral Clefts.

Objective: The purpose of this study was to evaluate possible relationships between number of surgeries and parent ratings of academic functioning among children with isolated oral clefts.

Design: Multicenter, retrospective cohort study including structured interviews, questionnaires, and chart reviews.

Setting: Completion of questionnaires occurred during clinical visits at 6 different cleft centers across North America.

Cognitive, Motor, and Language Development of Preschool Children With Craniofacial Microsomia.

Objective: To examine neurodevelopment in preschool-aged children with craniofacial microsomia (CFM) relative to unaffected peers.

Design: Multisite, longitudinal cohort study.

Setting: Tertiary care centers in the United States.

Behavioral Adjustment of Preschool Children With and Without Craniofacial Microsomia.

Objective: The study aim was to assess behavioral adjustment in preschool children with and without craniofacial microsomia (CFM).

Design: Multisite cohort study of preschoolers with CFM ("cases") or without CFM ("controls").

Participants: Mothers (89%), fathers (9%), and other caregivers (2%) of 161 preschoolers.

Development of an Outcome Measure of Observable Signs of Health and Well-Being in Infants With Orofacial Clefts.

Objective: To develop an outcomes instrument that assesses observations that can be reliably reported by caregivers and can be used to assess health of infants with a cleft lip or cleft lip and cleft palate (CL±P) and impacts of treatments.

Design: Cross-sectional, mixed methods study.

Setting: Caregivers and health-care providers were recruited from 3 academic craniofacial centers and national advertisements.

Evaluation of prenatal diabetes mellitus and other risk factors for craniofacial microsomia.

Objectives: Craniofacial microsomia (CFM) is a congenital condition that typically involves hypoplasia of the ear and jaw. It is often associated with adverse effects such as hearing loss and sleep-disordered breathing. There is little research on its etiology.

Methods and Challenges in a Cohort Study of Infants and Toddlers With Craniofacial Microsomia: The Clock Study.

Objective: The Craniofacial microsomia: Longitudinal Outcomes in Children pre-Kindergarten (CLOCK) study is a longitudinal cohort study of neurobehavioral outcomes in infants and toddlers with craniofacial microsomia (CFM). In this article, we review the data collection and methods used to characterize this complex condition and describe the demographic and clinical characteristics of the cohort.

Setting: Craniofacial and otolaryngology clinics at 5 study sites.

Parent Observations of the Health Status of Infants With Clefts of the Lip: Results From Qualitative Interviews.

Objective: To explore, using semistructured qualitative interviews, parent observations of their infant's health as they relate to having a cleft lip or cleft lip and cleft palate (CL±P) and/or associated treatments.

Design: Cross-sectional, qualitative study across 3 sites.

Setting: Parents were recruited from 3 academic craniofacial centers.

Neurodevelopment of Infants with and without Craniofacial Microsomia.

Objectives: To determine whether infant cases with craniofacial microsomia (CFM) evidence poorer neurodevelopmental status than demographically similar infants without craniofacial diagnoses ("controls"), and to examine cases' neurodevelopmental outcomes by facial phenotype and hearing status.

Study Design: Multicenter, observational study of 108 cases and 84 controls aged 12-24 months. Participants were assessed by the Bayley Scales of Infant and Toddler Development-Third Edition and the Preschool Language Scales-Fifth Edition (PLS-5).

Speech Production Skills in Children With Cleft Palate Who Were Internationally Adopted.

Objective: The objective of this study was to investigate the impact of international adoption (IA), age at palatoplasty (PR age), and velopharyngeal sufficiency (VPS) on articulation outcomes.

Design: This was a cross-sectional, prospective, observational study.

Setting: Outpatient hospital clinic.

Language Development in Children With Cleft Palate With or Without Cleft Lip Adopted From Non-English-Speaking Countries.

Purpose: The purpose of this study was to determine whether language skills differed between children with cleft palate or cleft lip and palate (CP±CL) who were adopted into an English-speaking home from a non-English-speaking country (late English exposure [LE]) and children with CP±CL raised from birth in an English-speaking home (early English exposure [EE]).

Method: Children (51 LE, 67 EE), ages 3;0 (years;months) to 9;0, completed the Clinical Evaluation of Language Fundamentals (CELF), Preschool Second Edition or Fourth Edition. Linear regression analysis was used to assess the impact of age of adoption and time in an English-speaking home on language skills, as measured by the CELF-P2 and CELF-4.

The Americleft Psychosocial Outcomes Project: A Multicenter Approach to Advancing Psychosocial Outcomes for Youth With Cleft Lip and Palate.

Cleft lip and/or palate (CL/P) are among the most common of all birth defects. Habilitation requires multiple surgeries and other therapies throughout childhood and adolescence. While multidisciplinary care is recommended, there is a great deal of variation in treatment protocols for this condition.

Structural brain differences in school-age children with and without single-suture craniosynostosis.

OBJECTIVE Single-suture craniosynostosis (SSC), the premature fusion of a cranial suture, is characterized by dysmorphology of the craniofacial skeleton. Evidence to suggest that children with SSC are at an elevated risk of mild to moderate developmental delays and neurocognitive deficits is mounting, but the associations among premature suture fusion, neuroanatomy, and neurocognition are unexplained. The goals of this study were to determine 1) whether differences in the brain are present in young children with the 2 most common forms of SSC (sagittal and metopic) several years following surgical correction, and 2) whether the pattern of differences varies by affected suture (sagittal or metopic).

Behavioral Adjustment of School-Age Children with and without Single-Suture Craniosynostosis.

Background: Previous research has observed higher than average rates of behavior problems in school-age children with single-suture craniosynostosis. However, most studies used a single informant (mothers) and did not include comparison groups to control for sociodemographic factors.

Methods: The authors gave standardized behavior checklists to the mothers, fathers, and teachers of 179 elementary school children with single-suture craniosynostosis and 183 controls.

Visuomotor Function in School-Age Children with Single-Suture Craniosynostosis.

Objective: Previous studies have shown that infants and young children with single-suture craniosynostosis (SSC) perform more poorly on tests of visuomotor function than children without SSC. However, previous studies are limited by small sample sizes and little is known about the persistence of visuomotor problems into the school-age years. The aim of this study was to compare visuomotor function in children with and without SSC at the beginning of elementary school.

Language, learning, and memory in children with and without single-suture craniosynostosis.

OBJECTIVE The language and memory functions of children with and without single-suture craniosynostosis (SSC) were compared at school age (mean 7.45 years, standard deviation [SD] 0.54 years).