A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care. (September 2017)

• Record Type: Journal Article
• Authors: 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.; Magee, Leanne; Monson, Laura; Rose, Elizabeth; Sitzman, Thomas J.; Taylor, Jesse A.; Thorburn, Guy; Van Eeden, Simon; Williams, Chris; Wirthlin, John O.; Wong, Karen W.
• Is Part Of: Cleft palate-craniofacial journal. Volume 54:Number 5(2017)
• Page Start: 540
• Page End: 554
• Publication Date: 2017-09
• Subjects: cleft lip -- cleft palate -- continuous quality improvement -- learning health care -- outcomes -- patient-reported outcomes -- value-based health care; Cleft palate -- Periodicals; Skull -- Abnormalities -- Periodicals; Cranial manipulation -- Periodicals; Skull -- Abnormalities -- Surgery -- Periodicals; Face -- Abnormalities -- Surgery -- Periodicals; Fente palatine -- Périodiques; Crâne -- Malformations -- Périodiques; Manipulation crânienne -- Périodiques; Crâne -- Malformations -- Chirurgie -- Périodiques; Face -- Malformations -- Chirurgie -- Périodiques; Cleft palate; Cranial manipulation; Face -- Abnormalities -- Surgery; Skull -- Abnormalities; Skull -- Abnormalities -- Surgery; Cleft Lip; Cleft Palate; Facial Bones -- abnormalities; Skull -- abnormalities; Periodicals; Periodicals; Periodicals; 617.522
• DOI: 10.1597/15-292
• Languages: English
• ISSNs: 1055-6656

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.