Longitudinal study of growth of children with unilateral cleft lip and palate: 2 to 10 years of age.

Objective : To study the growth of children with complete unilateral cleft lip and palate (UCLP) from 2 to 10 years of age and to assess whether growth varied from that of children without UCLP (typical children). Design : Physical growth was one of the outcome measures of a National Institutes of Health-sponsored longitudinal, prospective clinical trial conducted by the University of Florida and the University of São Paulo. Setting : Hospital of Rehabilitation of Craniofacial Anomalies, University of São Paulo (HRAC-USP), Bauru, Brazil.

The relationships between fatigue, quality of life, and family impact among children with special health care needs.

Objective: To examine the relationships among pediatric fatigue, health-related quality of life (HRQOL), and family impact among children with special health care needs (CSHCNs), specifically whether HRQOL mediates the influence of fatigue on family impact.

Methods: 266 caregivers of CSHCNs were studied. The Pediatric Quality of Life Inventory Multidimensional Fatigue Scale, Pediatric Quality of Life Inventory Generic Scale, and Impact on Family Scale were used to measure fatigue, HRQOL, and family impact, respectively.

Symptomatic atlantoaxial instability in an adolescent with trisomy 21 (Down's syndrome).

Atlantoaxial instability (AAI) occurs in 15% of children with Trisomy 21. Health supervision guidelines were revised by the American Academy of Pediatrics in 2011 to reflect advances in care for children with special health care needs (CSHCN). Previous guidelines recommended cervical spine radiological screenings in preschool years to evaluate for atlantoaxial instability.

Quality of life information and trust in physicians among families of children with life-limiting conditions.

PURPOSE: To examine information that parents of children with life-limiting conditions want to discuss with children's physicians to assist decision-making, and whether the desire for this information is associated with parents' trust in physicians. STUDY DESIGN: A cross-sectional study using a telephone survey. PATIENTS AND METHODS: Subjects comprised a random sample of 266 parents whose children were enrolled in Florida's Medicaid Program.

Otologic and audiologic outcomes with the Furlow and von Langenbeck with intravelar veloplasty palatoplasties in unilateral cleft lip and palate.

Objective: Cleft palate increases the risk of chronic middle ear disease and hearing loss. The goal of this report was to determine which of two palate surgeries and which timing of palate surgery were associated with better otologic and audiologic outcomes in children with unilateral cleft lip and palate at 5 to 6 years of age.

Design: Subjects were randomly assigned to the von Langenbeck with intravelar veloplasty or Furlow palate repair, to palate surgery at 9 to 12 months or 15 to 18 months of age, and to the Spina or Millard lip repair.

Improving developmental screening in pediatric resident education.

Objective: Given that pediatricians cite low competency in developmental screening, this study aims to effectively teach screening to residents.

Design: Using a quasi-experimental design, residents received an educational module and one-on-one teaching of 3 validated developmental screeners (Denver II, ASQ [Ages and Stages Questionnaire], and PEDS [Parents' Evaluation of Developmental Status]), with subsequent independent use with all 3 screeners with their own continuity patients. Outcome measures included changes in knowledge, skills, and preferences.

The impact of insurance on satisfaction and family-centered care for CSHCN.

Background: Children with special health care needs (CSHCN) have worse health outcomes and satisfaction compared with children with typical needs. Although individual characteristics influence satisfaction and family-centered care, additional effects of health insurance and state child health policies are unknown.

Objectives: To determine if satisfaction and family-centered care varied among CSHCN, after adjusting for individual characteristics, according to insurance type and state child health policies.

Longitudinal study of growth of children with unilateral cleft-lip palate from birth to two years of age.

Objective: To study the growth of children with complete unilateral cleft lip and palate (UCLP) from birth to 2 years of age and to construct specific UCLP growth curves.

Design: Physical growth was a secondary outcome measure of a National Institutes of Health-sponsored longitudinal, prospective clinical trial involving the University of Florida (United States) and the University of São Paulo (Brazil).

Patients: Six hundred twenty-seven children with UCLP, nonsyndromic, both genders.

Managed care organization characteristics and outpatient specialty care use among children with chronic illness.

Background: Limited information is available about managed care organization (MCO) characteristics that influence outpatient physician specialist use among children with chronic conditions.

Objective: To examine the association between MCO characteristics and outpatient physician specialist use among children with chronic conditions who were receiving care in MCOs in which primary care providers (PCPs) served as gatekeepers for referrals and who were publicly insured.

Design And Methods: A total of 2333 children who had been diagnosed with a chronic condition and had functional limitations, an increased need for or use of health care services beyond what children normally use, and/or dependence on medications or home medical equipment were included in the study.

Managed care organizational characteristics and health care use among children with special health care needs.

Objective: To examine the relationship between features of managed care organizations (MCOs) and health care use patterns by children.

Data Sources: Telephone survey data from 2,223 parents of children with special health care needs, MCO-administrator interview data, and health care claims data.

Study Design: Cross-sectional survey data from families about the number of consequences of their children's conditions and from MCO administrators about their plans' organizational features were used.

Folate absorption in women with a history of neural tube defect-affected pregnancy.

Background: The risk of neural tube defects (NTDs) is significantly reduced by supplemental folic acid. NTD risk may be associated with impaired absorption of polyglutamyl folate, the primary form of naturally occurring food folate, and of folic acid in supplements or fortified food. Stable-isotope methods provide the specificity needed to test this hypothesis.

American Academy of Pediatrics. Committee on Children With Disabilities. Care coordination: integrating health and related systems of care for children with special health care needs.

Care coordination is a process that links children with special health care needs and their families to services and resources in a coordinated effort to maximize the potential of the children and provide them with optimal health care. Care coordination often is complicated because there is no single entry point to multiple systems of care, and complex criteria determine the availability of funding and services among public and private payers. Economic and sociocultural barriers to coordination of care exist and affect families and health care professionals.

Stature of Russian children with isolated cleft lip and palate.

Objective: To evaluate the stature of Russian children with cleft lip and palate (CLP).

Design: One hundred twelve Russian children predominantly with repaired unilateral CLP 4 through 10 years of age underwent studies including height measurement, physical examinations, and record review. Children with health concerns that could affect growth were excluded.

Otologic and audiologic status of Russian children with cleft lip and palate.

Objective: In this study, researchers evaluated the otologic and audiologic status of 112 children with repaired cleft lip and palate who had received primary palatal repair by means of Frolova palatoplasty, a surgical technique developed by Dr. Larisa Y. Frolova, founder and director of the National Pediatric Center for Congenital Maxillofacial Pathology, Moscow, Russia.

Velopharyngeal function for speech after the Frolova primary palatoplasty technique.

Objective: This study was undertaken by several members of the University of Florida Craniofacial Center to assess the results of palatoplasty performed by the method devised by Larisa Y. Frolova, M.D.

Prevalence of 22q11 region deletions in patients with velopharyngeal insufficiency.

Velo-cardio-facial syndrome, DiGeorge syndrome, conotruncal anomaly face syndrome, tetralogy of Fallot, and pulmonary atresia with ventricular septal defect are all associated with hemizygosity of 22q11. While the prevalence of the deletions in these phenotypes has been studied, the frequency of deletions in patients presenting with velopharyngeal insufficiency (VPI) is unknown. We performed fluorescence in situ hybridization for locus D22S75 within the 22q11 region on 23 patients with VPI (age range 5-42 years) followed in the Craniofacial Clinic at the University of Florida.