Sociodemographic Factors Associated with Delayed Presentation in Craniosynostosis Surgery at a Tertiary Children's Hospital.

Background: Craniosynostosis is a common diagnosis requiring early referral to a pediatric plastic surgeon; however, disparities in healthcare may influence presentation timing and affect treatment options and outcomes. This study aimed to explore sociodemographic factors contributing to delay in craniosynostosis surgical consultation.

Methods: A retrospective cohort study of 694 California-based craniosynostosis patients at a tertiary children's hospital was performed from 2006 to 2023.

Polysomnogram Findings and Psychosocial and Academic Concerns in Children With Cleft Palate With or Without Cleft Lip.

Children born with a cleft palate with or without a cleft lip (CP±L) are at risk for sleep-disordered breathing, particularly obstructive sleep apnea (OSA). While OSA and CP±L have both been associated with higher risk for psychosocial and academic concerns, their combined risk has been understudied. This paper aimed to describe polysomnography findings and psychosocial and academic concerns among children with isolated (iCP±L) and syndrome-associated (sCP±L) clefts who had undergone primary palatoplasty.

Book-Sharing for Toddlers with Clefts (BOOST): Protocol for a randomized controlled trial of a remote intervention to promote language development in children with cleft palate.

Background: Children with cleft palate, with or without cleft lip (CP±L), exhibit language delays on average compared to children without clefts. Interventions to address these disparities are scarce. In this multi-center study, Book Sharing for Toddlers with Clefts (BOOST), we will test a remote, parent-focused intervention to promote language development in children with CP±L.

Impact of protraction or orthognathic surgery for class III malocclusion on longitudinal quality of life in patients with cleft lip and palate.

Objectives: This study assessed overall quality of life (QoL) over time in youth with cleft lip and palate (CLP) undergoing maxillary protraction treatment or orthognathic surgery for class III malocclusion to identify any differences in QoL based on treatment group and outcome success.

Materials And Methods: A prospective longitudinal cohort study was conducted in two pediatric hospitals. The Short Form Health Survey (SF-12) measured physical and mental QoL prior to treatment, at maximal correction, at treatment completion, and at 1-year post treatment.

Psychosocial Experiences of Spanish-Speaking Parents of Children With Craniofacial Microsomia.

Craniofacial microsomia (CFM) and microtia psychosocial research in the US is primarily with English-speaking participants. Given that 19% of the US is Latino, and there is a higher prevalence of CFM in Latino populations, this study aims to describe psychosocial experiences related to CFM among Spanish-speaking Latino caregivers to better inform health care. Narrative interviews (mean 73±17 min) were completed in Spanish with parents of children with CFM aged 3 to 17 (mean age 10.

"I can't provide what my child needs": Early feeding experiences of caregivers of children with craniofacial microsomia.

Purpose: Craniofacial microsomia (CFM) is a congenital condition that can be associated with feeding challenges in infants. As part of the larger 'Craniofacial microsomia: Accelerating Research and Education (CARE)' program, this study described caregivers' early feeding experiences.

Design And Materials: US-based caregivers of 34 children with CFM participated in remote narrative interviews.

A Conceptual Thematic Framework of Psychological Adjustment in Caregivers of Children with Craniofacial Microsomia.

Objective: Children with craniofacial microsomia (CFM) have complex healthcare needs, resulting in evaluations and interventions from infancy onward. Yet, little is understood about families' treatment experiences or the impact of CFM on caregivers' well-being. To address this gap, the NIH-funded 'Craniofacial microsomia: Accelerating Research and Education (CARE)' program sought to develop a conceptual thematic framework of caregiver adjustment to CFM.

Early Experiences of Parents of Children With Craniofacial Microsomia.

Objective: To describe the early health care experiences of parents of children with craniofacial microsomia (CFM), a congenital diagnosis often identified at birth.

Design: Qualitative descriptive.

Setting: Homes of participants.

Dental Protraction Versus Surgery for Cleft Lip and Palate: A Budget Impact Analysis.

Class III malocclusion for individuals with cleft lip and palate has historically been managed with surgery. Orthodontic protraction is a noninvasive alternative that may be associated with lower costs. This analysis investigated the budget impact of protraction versus surgery from an institutional perspective.

Thematic Analysis of Parental Experiences of Patients' Orthognathic Surgery.

Orthognathic surgery often requires extensive orthodontic preparation and a prolonged postoperative recovery that can be stressful for patients and their families. Parents are a primary source of support for patients; accordingly, a better understanding of the parents' experience of orthognathic surgery can help inform clinical care. Using a prospective cross-sectional qualitative study design, 4 focus groups (2 English and 2 Spanish; mean length 65 min) were held with parents of patients who had completed orthognathic surgery for class II/III malocclusion.

Establishing an International Interdisciplinary Research Network in Craniofacial Microsomia: The CARE Program.

Objective: Craniofacial microsomia (CFM) is a broad clinical term used to describe a congenital condition most commonly involving the underdevelopment of the external ear, mandible, soft tissues, and facial nerve. Despite medical advances, understanding of the psychological health and healthcare experiences of individuals with CFM and their caregivers remains limited. This article describes a research program designed to address these knowledge gaps, and identify opportunities for psychosocial intervention and improved healthcare provision.

Early Ophthalmology Findings in Nonsyndromic Craniosynostosis.

Craniosynostosis (CS) occurs 1 in 2500 births and surgical intervention is indicated partly due to risk for elevated intracranial pressure (EICP). Ophthalmological examinations help identify EICP and additional vision concerns. This study describes preoperative and postoperative ophthalmic findings in CS patients (N=314) from chart review.

Psychosocial and Health-Related Experiences of Individuals With Microtia and Craniofacial Microsomia and Their Families: Narrative Review Over 2 Decades.

This paper describes 20 years of microtia and craniofacial microsomia (CFM) psychosocial and healthcare studies and suggests directions for clinical care and research. A narrative review of papers January 2000 to July 2021 related to psychosocial and healthcare experiences of individuals with microtia and CFM and their families. Studies (N = 64) were mainly cross-sectional (69%), included a range of standardized measures (64%), and were with European (31%), American (27%), or multinational (23%) samples.

Parental Reports of Intervention Services and Prevalence of Teasing in a Multinational Craniofacial Microsomia Pediatric Study.

Children with craniofacial microsomia (CFM) are at increased risk for educational and social concerns. This study describes intervention services and frequency of teasing in a multinational population of children with CFM. Caregivers of children with CFM ages 3 to 18 years in the US and South America were administered a questionnaire.

Haploinsufficiency of SF3B2 causes craniofacial microsomia.

Craniofacial microsomia (CFM) is the second most common congenital facial anomaly, yet its genetic etiology remains unknown. We perform whole-exome or genome sequencing of 146 kindreds with sporadic (n = 138) or familial (n = 8) CFM, identifying a highly significant burden of loss of function variants in SF3B2 (P = 3.8 × 10), a component of the U2 small nuclear ribonucleoprotein complex, in probands.

Exploratory Qualitative Analysis of Early Literacy Engagement in Latinx Parents of a Child With a Cleft.

Literacy interventions are needed for children born with orofacial clefts, particularly for Latinx children who may experience multiple risk factors. To collect formative data for intervention design, focus groups and interviews were completed with 18 Latinx parents of children ages 13 to 49 months with orofacial clefts. Interviews focused on literacy experiences and practices.

Association of language proficiency, sociodemographics, and neurocognitive functioning in dual-language Latino survivors of childhood acute lymphoblastic leukemia and lymphoma.

Background: Survivors of childhood acute lymphoblastic leukemia and lymphoma (ALL/LL) are at risk for cognitive dysfunction, but little is known about its relationship with language proficiency and sociodemographics.

Procedure: In this cross-sectional cohort study of Latino survivors of childhood ALL/LL, English and Spanish language proficiency and cognitive and academic functioning were measured and their associations determined using paired t-tests, Pearson correlations, and linear regressions.

Results: Participants (N = 57; 50.

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.

Microtia and craniofacial microsomia: Content analysis of facebook groups.

Objective: An increasing number of patients use social media for health-related information and social support. This study's objective was to describe the content posted on Facebook groups for individuals with microtia and/or craniofacial microsomia (CFM) and their families in order for providers to gain insight into patient and family needs and experiences to inform clinical care.

Methods: Two months of posts, images, comments, and "like" responses from two Facebook groups in the US and the UK were recorded and analyzed using content analysis.

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.

Prospective cohort study of ototoxicity in persons with cystic fibrosis following a single course of intravenous tobramycin.

Introduction: Aminoglycoside (AG) antibiotics, such as tobramycin, are known to be ototoxic but important clinically due to their bactericidal efficacy. Persons with cystic fibrosis (CF) are at risk for AG-induced ototoxicity due to the repeated use of intravenous (IV) tobramycin for the treatment of pulmonary exacerbations. While it is well-established that ototoxic hearing loss is highly prevalent in this clinical population, the progression of hearing loss over time remains unclear.

Velopharyngeal Insufficiency Impact and Nasopharngoscopy Discomfort and Cooperation: Patient, Parent, and Provider Perspectives.

Velopharyngeal insufficiency (VPI) impacts resonance and articulation and contributes to social difficulties. Nasopharngoscopies (NPs) often inform VPI treatment planning. Using a mixed-model prospective design, this study describes the impact of VPI, NP perceptions, and ratings of pain, discomfort, and cooperation during NP from multiple perspectives.

Facilitating Positive Psychosocial Outcomes in Craniofacial Team Care: Strategies for Medical Providers.

Objective: Psychosocial issues associated with craniofacial diagnoses and the ongoing burden of care can impact the quality of life of patients and families, as well as treatment adherence and outcomes. Utilizing available literature and clinical expertise across 6 centers, the present article summarizes key psychosocial issues for the benefit of nonmental health medical providers and offers suggestions as to how all members of craniofacial teams can promote positive psychosocial outcomes.

Results: Family adjustment across developmental phases is outlined, with strategies to support adaptive parental coping.

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.