1. A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care
- Author
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Christopher Williams, John Daskalogiannakis, Elizabeth Rose, Albert A, Guy Thorburn, Krishnamurthy Bonanthaya, Cristina Hernandez, Henriëtte H.W. de Gier, Michael L. Cunningham, Thomas Kelley, Alexander C. Allori, Jesse A. Taylor, Leanne Magee, Ross E. Long, Kathy Chapman, Simon Van Eeden, Karen W. Wong, Maarten J. Koudstaal, Laura A. Monson, Thomas J. Sitzman, John G. Meara, Andrew A Heggie, Yin Jones, Rajiv Kuchhal, Oksana Jackson, Loshan Kangesu, Anette Lohmander, John O Wirthlin, Otorhinolaryngology and Head and Neck Surgery, and Oral and Maxillofacial Surgery
- Subjects
Quality management ,Cleft Lip ,Comparative effectiveness research ,Psychological intervention ,MEDLINE ,03 medical and health sciences ,0302 clinical medicine ,Quality of life (healthcare) ,Nursing ,Clinical Protocols ,Multidisciplinary approach ,Terminology as Topic ,Health care ,Outcome Assessment, Health Care ,Medicine ,Humans ,030223 otorhinolaryngology ,Set (psychology) ,Orthodontics ,business.industry ,030206 dentistry ,Quality Improvement ,Cleft Palate ,Phenotype ,Treatment Outcome ,Otorhinolaryngology ,Oral Surgery ,business - 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.
- Published
- 2017