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

作者：Allori Alexander C^*; Kelley Thomas; Meara John G; Albert Asteria; Bonanthaya Krishnamurthy; Chapman Kathy; Cunningham Michael; Daskalogiannakis John; de Gier Henriette; Heggie Andrew A; Hernandez Cristina; Jackson Oksana; Jones Yin; Kangesu Loshan; Koudstaal Maarten J; Kuchhal Rajiv; Lohmander Anette; Long Ross E Jr; Magee Leanne; Monson Laura; Rose Elizabeth; Sitzman Thomas J; Taylor Jesse A; Thorburn Guy; van Eeden Simon; Williams Chris; Wirthlin John O

来源：Cleft Palate-Craniofacial Journal, 2017, 54(5): 540-554.

DOI：10.1597/15-292

• cleft lip
• cleft palate
• continuous quality improvement
• learning health care
• outcomes
• patient-reported outcomes
• value-based health care

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.

• 出版日期2017-9