A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care Academic Article uri icon

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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.

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, Constance
  • Wirthlin, John O
  • Wong, Karen W

publication date

  • September 2017