title: A cross-sectional survey of 5-year-old children with non-syndromic unilateral cleft lip and palate: the Cleft Care UK study. Part 1: background and methodology.
abstract: OBJECTIVE
  We describe the methodology for a major study investigating the impact of reconfigured cleft care in the United Kingdom (UK) 15 years after an initial survey, detailed in the Clinical Standards Advisory Group (CSAG) report in 1998, had informed government recommendations on centralization.
  
  
  METHODS
  This is a UK multicentre cross-sectional study of 5-year-olds born with non-syndromic unilateral cleft lip and palate. Children born between 1 April 2005 and 31 March 2007 were seen in cleft centre audit clinics.
  
  
  METHODS
  Consent was obtained for the collection of routine clinical measures (speech recordings, hearing, photographs, models, oral health, psychosocial factors) and anthropometric measures (height, weight, head circumference). The methodology for each clinical measure followed those of the earlier survey as closely as possible.
  
  
  RESULTS
  We identified 359 eligible children and recruited 268 (74.7%) to the study. Eleven separate records for each child were collected at the audit clinics. In total, 2666 (90.4%) were collected from a potential 2948 records. The response rates for the self-reported questionnaires, completed at home, were 52.6% for the Health and Lifestyle Questionnaire and 52.2% for the Satisfaction with Service Questionnaire.
  
  
  CONCLUSIONS
  Response rates and measures were similar to those achieved in the previous survey. There are practical, administrative and methodological challenges in repeating cross-sectional surveys 15 years apart and producing comparable data.
authors.affiliation: Centre for Appearance Research, University of the West of England, Bristol, UK.
authors.forename: M
authors.initials: M
authors.lastname: Persson
authors.affiliation: School of Oral and Dental Sciences, University of Bristol, Bristol, UK.
authors.forename: J R
authors.initials: JR
authors.lastname: Sandy
authors.affiliation: School of Oral and Dental Sciences, University of Bristol, Bristol, UK.
authors.forename: A
authors.initials: A
authors.lastname: Waylen
authors.affiliation: School of Oral and Dental Sciences, University of Bristol, Bristol, UK.
authors.forename: A K
authors.initials: AK
authors.lastname: Wills
authors.affiliation: School of Oral and Dental Sciences, University of Bristol, Bristol, UK.|Dental & Maxillofacial Centre, Royal Medical Services, West Riffa, Kingdom of Bahrain.
authors.forename: R
authors.initials: R
authors.lastname: Al-Ghatam
authors.affiliation: School of Oral and Dental Sciences, University of Bristol, Bristol, UK.
authors.forename: A J
authors.initials: AJ
authors.lastname: Ireland
authors.affiliation: Children's Hearing Centre, University Hospitals Bristol NHS Foundation Trust, Bristol, UK.|Centre for Child & Adolescent Health, School of Social & Community Medicine, University of Bristol, Bristol, UK.
authors.forename: A J
authors.initials: AJ
authors.lastname: Hall
authors.affiliation: School of Social & Community Medicine, University of Bristol, Bristol, UK.
authors.forename: W
authors.initials: W
authors.lastname: Hollingworth
authors.affiliation: School of Oral and Dental Sciences, University of Bristol, Bristol, UK.|Musgrove Park Hospital, Taunton, UK.
authors.forename: T
authors.initials: T
authors.lastname: Jones
authors.affiliation: School of Clinical Sciences, University of Bristol, Bristol, UK.
authors.forename: T J
authors.initials: TJ
authors.lastname: Peters
authors.affiliation: Cleft Lip and Palate Association, London, UK.
authors.forename: R
authors.initials: R
authors.lastname: Preston
authors.affiliation: Speech and Language Therapy Department and Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital NHS Foundation Trust, London, UK.
authors.forename: D
authors.initials: D
authors.lastname: Sell
authors.affiliation: South Thames' Cleft Unit, Guy's and St Thomas Hospital, London, UK.|Cleft Net East Cleft Network, Addenbrooke's Hospital, Cambridge, UK.
authors.forename: J
authors.initials: J
authors.lastname: Smallridge
authors.affiliation: School of Dentistry, University of Manchester, Manchester, UK.
authors.forename: H
authors.initials: H
authors.lastname: Worthington
authors.affiliation: School of Oral and Dental Sciences, University of Bristol, Bristol, UK.|National Institute for Health Research (NIHR) Biomedical Research Unit in Nutrition, Diet and Lifestyle at the University Hospitals Bristol NHS Foundation Trust, University of Bristol, Bristol, UK.
authors.forename: A R
authors.initials: AR
authors.lastname: Ness
mesh_terms: D002675:Child, Preschool; D002971:Cleft Lip / Q000473:pathology / Q000601:surgery; D002972:Cleft Palate / Q000473:pathology / Q000601:surgery; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D006113:United Kingdom
keywords: cleft lip; cleft palate; cross-sectional studies