title: A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care.
abstract: Care of the patient with cleft lip and/or palate remains complex. Prior attempts at aggregating data to study the effectiveness of specific interventions or overall treatment protocols have been hindered by a lack of data standards. There exists a critical need to better define the outcomes-particularly those that matter most to patients and their families-and to standardize the methods by which these outcomes will be measured. This report summarizes the recommendations of an international, multidisciplinary working group with regard to which outcomes a typical cleft team could track, how those outcomes could be measured and recorded, and what strategies may be employed to sustainably implement a system for prospective data collection. It is only by agreeing on a common, standard set of outcome measures for the comprehensive appraisal of cleft care that intercenter comparisons can become possible. This is important for quality-improvement endeavors, comparative effectiveness research, and value-based health-care reform.
authors.forename: Alexander C
authors.initials: AC
authors.lastname: Allori
authors.forename: Thomas
authors.initials: T
authors.lastname: Kelley
authors.forename: John G
authors.initials: JG
authors.lastname: Meara
authors.forename: Asteria
authors.initials: A
authors.lastname: Albert
authors.forename: Krishnamurthy
authors.initials: K
authors.lastname: Bonanthaya
authors.forename: Kathy
authors.initials: K
authors.lastname: Chapman
authors.forename: Michael
authors.initials: M
authors.lastname: Cunningham
authors.forename: John
authors.initials: J
authors.lastname: Daskalogiannakis
authors.forename: Henriette
authors.initials: H
authors.lastname: de Gier
authors.forename: Andrew A
authors.initials: AA
authors.lastname: Heggie
authors.forename: Cristina
authors.initials: C
authors.lastname: Hernandez
authors.forename: Oksana
authors.initials: O
authors.lastname: Jackson
authors.forename: Yin
authors.initials: Y
authors.lastname: Jones
authors.forename: Loshan
authors.initials: L
authors.lastname: Kangesu
authors.forename: Maarten J
authors.initials: MJ
authors.lastname: Koudstaal
authors.forename: Rajiv
authors.initials: R
authors.lastname: Kuchhal
authors.forename: Anette
authors.initials: A
authors.lastname: Lohmander
authors.forename: Ross E
authors.initials: RE
authors.lastname: Long
authors.forename: Leanne
authors.initials: L
authors.lastname: Magee
authors.forename: Laura
authors.initials: L
authors.lastname: Monson
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Rose
authors.forename: Thomas J
authors.initials: TJ
authors.lastname: Sitzman
authors.forename: Jesse A
authors.initials: JA
authors.lastname: Taylor
authors.forename: Guy
authors.initials: G
authors.lastname: Thorburn
authors.forename: Simon
authors.initials: S
authors.lastname: van Eeden
authors.forename: Chris
authors.initials: C
authors.lastname: Williams
authors.forename: John O
authors.initials: JO
authors.lastname: Wirthlin
authors.forename: Karen W
authors.initials: KW
authors.lastname: Wong
mesh_terms: D002971:Cleft Lip / Q000145:classification / Q000628:therapy*; D002972:Cleft Palate / Q000145:classification / Q000628:therapy*; D002985:Clinical Protocols; D006801:Humans; D017063:Outcome Assessment, Health Care / Q000592:standards*; D010641:Phenotype; D058996:Quality Improvement; D009626:Terminology as Topic; D016896:Treatment Outcome
keywords: cleft lip; cleft palate; continuous quality improvement; learning health care; outcomes; patient-reported outcomes; value-based health care