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.

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Keywords Cleft lip, Cleft palate, Continuous quality improvement, Learning health care, Outcomes, Patient-reported outcomes, Value-based health care
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Journal Cleft Palate - Craniofacial Journal
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Allori, A.C. (Alexander C.), Kelley, T. (Thomas), Meara, J.G. (John G.), Albert, A. (Asteria), Bonanthaya, K. (Krishnamurthy), Chapman, K. (Kathy), … Wong, K.W. (Karen W.). (2017). A standard set of outcome measures for the comprehensive appraisal of cleft care. In Cleft Palate - Craniofacial Journal (Vol. 54, pp. 540–554). doi:10.1597/15-292