The Incidence and Outcomes for Children with Cleft Palate and/or Lip and CHARGE Syndrome.

Objectives: Published literature on children with cleft palate and/or lip (CP + /-L) and CHARGE syndrome (CS) is limited. This study investigated cleft characteristics including surgery, and feeding and communication outcomes in children identified with CP + /-L and CS.

Design: Retrospective cross-sectional review.

Surgical sequence, timing and volume, and variation in dento-facial outcome, speech and secondary surgery in children with unilateral cleft lip and palate: The Cleft Care UK Study.

Objectives: To estimate both the association of surgical variables in complete unilateral cleft lip and palate (cUCLP) in the UK with outcomes at age 5 years, and the association of secondary speech surgery, volume of surgery, and surgeon with the same outcomes.

Setting And Sample Population: The Cleft Care UK study, a cross-sectional study of 268 5-year-olds, born from 2005 to 2007, with cUCLP.

Materials And Methods: Information on surgical variables was extracted from a standardized questionnaire.

Lip symmetry following rotation advancement cleft lip repair in 5-year-old children treated by Ralph Millard and Ron Pigott.

Objective: To compare the symmetry of the lip following Rotation-Advancement cleft lip repair by Millard and Pigott and to investigate the effect on the symmetry of cleft side and gender by using different surgical protocols. Symmetry following cleft surgery was compared to that of non-cleft children.

Design: Retrospective study of photographs of children aged 5 years.

Psychometric Validation of the CLEFT-Q Patient Reported Outcome Measure: A Prospective Study to Examine Cross-Sectional Construct Validity.

Objective: CLEFT-Q is a condition-specific patient-reported outcome measure (PROM) for patients with cleft lip and/or palate (CL/P). The aim of this study was to examine the cross-sectional construct validity of the CLEFT-Q scales.

Design: Construct validity was assessed through a prospective study that tested hypotheses regarding correlations of scores with other PROMs that measure related constructs.

A Prospective Study to Examine Responsiveness and Minimally Important Differences (MIDs) for the CLEFT-Q Scales Following Three Cleft-Specific Operations.

The aim of this study was to examine internal responsiveness and estimate minimally important differences (MIDs) for CLEFT-Q scales. In this prospective cohort study, participants completed the CLEFT-Q appearance and health-related quality of life (HRQL) scales before and six months after cleft-related surgery. Seven cleft centres in Canada, USA and UK participated.

Post-operative intravenous fluid administration for infant cleft surgery: An observational study.

Objective: To investigate post-operative intravenous fluid administration and length of stay in a single site cleft centre. Previous publications have linked increased length of stay following primary cleft surgery to the administration of intravenous fluids post-operatively.

Materials And Methods: One hundred and ten primary cleft operations were conducted from May 2015 to April 2016 on non-syndromic infants.

The Method of Surgical Lip Repair Affects Speech Outcomes in Children With Bilateral Cleft Lip and Palate.

Objective: It was hypothesized that lip repair protocols in children with bilateral cleft lip and palate (BCLP) would affect development of bilabial consonants /m/ /b/ /p/. This study compared speech outcomes in 2 surgical groups.

Design: A retrospective case note investigation.

Impact of Completing CLEFT-Q Scales That Ask About Appearance on Children and Young Adults: An International Study.

Objective: To describe the impact of completing the CLEFT-Q appearance scales on patients with cleft lip and/or palate and to identify demographic and clinical characteristics and CLEFT-Q scores associated with reporting a negative impact.

Design: International cross-sectional survey.

Setting: Recruitment took place between October 2014 and November 2016 at 30 craniofacial clinics located in 12 countries.

Range and timing of surgery, and surgical sequences used, in primary repair of complete unilateral cleft lip and palate: The Cleft Care UK study.

Objects: To describe the range of surgery used to repair the lip and palate in the UK with specific interest in the sequence/timing used in complete unilateral cleft lip and palate (cUCLP).

Setting And Sample Population: The Cleft Care UK study, a cross-sectional study of 268 5-year-olds, born from 2005 to 2007, with complete unilateral cleft lip and palate.

Materials & Methods: Information on surgery was extracted from medical notes by surgeons during research clinics and transcribed onto a standardized questionnaire.

CLEFT-Q: Detecting Differences in Outcomes among 2434 Patients with Varying Cleft Types.

Background: Measuring the patient perspective is important in evaluating outcomes of cleft care. Understanding how treatment outcomes vary depending on cleft type may allow for better planning of treatments, setting of expectations, and more accurate benchmarking efforts. The CLEFT-Q is a patient-reported outcome measure for patients with cleft lip and/or palate.

Single Suture Synostosis and Isolated Cleft Palate in Non-Apert Syndrome Patients.

Introduction: Single suture craniosynostosis (SSC) and isolated cleft palate (ICP) in non-Apert syndrome patients rarely occur together. Management includes airway optimization, timing surgery appropriately, and assessing both cranial vault aesthetics and speech outcomes. The aim of this study was to compare treatment pathways and outcomes in patients with both conditions to standard treatment for these conditions in isolation.

The Cleft Multidisciplinary Collaborative: Establishing a Network to Support Cleft Lip and Palate Research in the United Kingdom.

Background: As a growing paradigm of health research, trainee collaboratives can influence clinical practice through the generation of cost-effective multicenter audit and research projects. The aims of the present article are to outline and discuss the establishment of a multidisciplinary collaborative in the context of cleft lip and/or palate (CL/P).

Methods: The Cleft Multidisciplinary Collaborative (CMC) was formed in April 2016 under the overarching supervision of the National Institute for Health Research.

Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries.

Background: Patients with cleft lip and/or palate can undergo numerous procedures to improve appearance, speech, dentition and hearing. We developed a cleft-specific patient-reported outcome instrument to facilitate rigorous international measurement and benchmarking.

Methods: Data were collected from patients aged 8-29 years with cleft lip and/or palate at 30 hospitals in 12 countries between October 2014 and November 2016.

Best Practices for the Diagnosis and Evaluation of Infants With Robin Sequence: A Clinical Consensus Report.

Importance: Robin sequence (RS) is a congenital condition characterized by micrognathia, glossoptosis, and upper airway obstruction. Currently, no consensus exists regarding the diagnosis and evaluation of children with RS. An international, multidisciplinary consensus group was formed to begin to overcome this limitation.

Outcomes of Cleft Palate Repair in Patients with Pierre Robin Sequence: A Matched Case-Control Study.

Background: Pierre Robin sequence results from a cascade of events that occur during embryologic development and frequently presents with cleft palate. Some studies have shown speech outcomes to be worse in patients with Pierre Robin sequence after cleft palate repair.

Methods: A cohort of Pierre Robin sequence patients who all required an airway intervention and nasogastric feeding in the neonatal period were identified and speech outcomes assessed at 5 years of age.

Identifying the effect of cleft type, deprivation and ethnicity on speech and dental outcomes in UK cleft patients: a multi-centred study.

Background: Outcome measures are increasingly important in the modern National Health Service. In the care of children born with cleft lip and/or palate there are many different outcomes to consider but only a few reliable, validated outcome measures exist. The dmft (decayed, missing and filled teeth) index and cleft speech characteristics (CSCs) are used regularly by cleft teams throughout the UK to assess outcomes in children with cleft lip and/or palate.

Sodium supplementation in neonates with pierre robin sequence significantly improves weight gain if urinary sodium is low.

Objective: To investigate whether sodium supplementation increases weight gain in babies with grade 3 Pierre Robin sequence if their urinary sodium is low.

Design: Retrospective review of all medical, dietitian, and nursing notes of babies admitted from 2000 to 2007, inclusive.

Setting: Tertiary center for cleft care.

Understanding cleft lip and palate. 4: Surgery and continuing care.

The fourth paper in this series on cleft lip and palate discusses the surgery involved in the care of children and young people with clefts of the lip and/or palate, orthodontic treatment and psychological support for this group of patients and their families.

Understanding cleft lip and palate. 2: The first five years.

The second in a series on cleft lip and palate, this article outlines the diagnosis of these congenital anomalies, the problems that a child with a cleft lip and/or palate and their family may encounter in the first five years of life, and the multidisciplinary care needed. The input of individual members of the cleft team is described, including nurse specialists, speech and language therapists, paediatric dentists, ear, nose and throat surgeons, and audiologists.

Understanding cleft lip and palate. 3: feeding the baby.

The third paper in this series on cleft lip and palate gives an overview of feeding a baby with a cleft lip and/or palate. It includes a description of the feeding assessment that all babies receive from the Cleft Specialist Nurse, the different methods of feeding that are likely to succeed with each cleft type, and other associated care and interventions.

Understanding cleft lip and palate. 1: an overview.

Cleft lip and/or cleft palate affects about 1:700 babies born in the UK and may occur as a single anomaly or in association with other congenital abnormalities as part of a syndrome. This article, the first in a series, provides a brief overview of the different types of cleft lip and palate and describes the organisation of regional cleft services in England and Wales.

A new grading of Pierre Robin sequence.

Objective: Pierre Robin sequence (PRS) involves the triad of micrognathia, glossoptosis, and cleft palate. Neonates with PRS suffer from two problems--airway obstruction and feeding difficulties--but the severity of these problems varies greatly. The resultant varying definitions of PRS have resulted in inconsistent management of those babies given the diagnosis.

The continuing multidisciplinary needs of adult patients with cleft lip and/or palate.

Objective: Babies born with cleft lip and/or palate are followed-up throughout their growth in childhood. During adulthood, they may require further functional and/or aesthetic treatment. Adult multidisciplinary cleft clinics have been in place in the West Midlands, U.