title: Comparative effectiveness studies examining patient-reported outcomes among children with cleft lip and/or palate: a systematic review.
abstract: BACKGROUND
  Health care policy makers are increasingly encouraging comparative effectiveness research. Little is known regarding comparative studies among children with cleft lip and/or palate. Cleft lip and/or palate profoundly influences self-perception and social functioning, and patient-reported outcomes provide a unique perspective on the success of reconstruction. The purpose of this study was to systematically review the literature regarding patient-reported outcomes among patients with cleft lip and/or palate.
  
  
  METHODS
  The authors reviewed articles from MEDLINE, Embase, and PsycInfo that examined the use of patient-reported outcome instruments for cleft lip and/or palate. Studies of patients with cleft lip and/or palate across any age that described the use of patient-completed measures in patient and control populations were included. A research librarian confirmed the search, and two independent, blinded reviewers performed full-text review.
  
  
  RESULTS
  The authors identified 1979 articles and selected 30 for inclusion. Forty-two different assessment tools were used to analyze factors such as self-esteem, behavior, and social support. The Strengths and Difficulties Questionnaire was most commonly used (n = 7), followed by the Childhood Experience Questionnaire (n = 5), and the Satisfaction with Appearance survey (n = 4). Barriers to analysis included lack of standardization of survey administration, effect of publication bias, and variations in patient populations between individual studies.
  
  
  CONCLUSIONS
  Comparative studies of patient-reported outcomes among patients with cleft lip and/or palate are infrequent. Many instruments exist to measure patient-reported outcomes in this population, but no specific standard exists. Identifying efficient and targeted forms of instrument selection and administration will enhance comparative studies among children with cleft lip and/or palate.
  
  
  METHODS
  Diagnostic, III.
authors.affiliation: Ann Arbor, Mich. From the Section of Plastic Surgery, Department of Surgery, the Department of Physical Medicine and Rehabilitation, and the Taubman Health Sciences Library, University of Michigan Health System.
authors.forename: Kavitha
authors.initials: K
authors.lastname: Ranganathan
authors.forename: Christian J
authors.initials: CJ
authors.lastname: Vercler
authors.forename: Seth A
authors.initials: SA
authors.lastname: Warschausky
authors.forename: Mark P
authors.initials: MP
authors.lastname: MacEachern
authors.forename: Steven R
authors.initials: SR
authors.lastname: Buchman
authors.forename: Jennifer F
authors.initials: JF
authors.lastname: Waljee
mesh_terms: D002648:Child; D002971:Cleft Lip / Q000601:surgery*; D002972:Cleft Palate / Q000601:surgery*; D059026:Diagnostic Self Evaluation; D006801:Humans; D063868:Patient Outcome Assessment; D016896:Treatment Outcome