A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care

Cleft Palate Craniofac J. 2017 Sep;54(5):540-554. doi: 10.1597/15-292. Epub 2016 May 25.


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.

Keywords: cleft lip; cleft palate; continuous quality improvement; learning health care; outcomes; patient-reported outcomes; value-based health care.

MeSH terms

  • Cleft Lip / classification
  • Cleft Lip / therapy*
  • Cleft Palate / classification
  • Cleft Palate / therapy*
  • Clinical Protocols*
  • Humans
  • Outcome Assessment, Health Care / standards*
  • Phenotype
  • Quality Improvement*
  • Terminology as Topic
  • Treatment Outcome