A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft 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.
Allori, AC; Kelley, T; Meara, JG; Albert, A; Bonanthaya, K; Chapman, K; Cunningham, M; Daskalogiannakis, J; de Gier, H; Heggie, AA; Hernandez, C; Jackson, O; Jones, Y; Kangesu, L; Koudstaal, MJ; Kuchhal, R; Lohmander, A; Long, RE; Magee, L; Monson, L; Rose, E; Sitzman, TJ; Taylor, JA; Thorburn, G; van Eeden, S; Williams, C; Wirthlin, JO; Wong, KW
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