Conference Proceedings
A standard set of outcome measures for the comprehensive appraisal of cleft care
AC Allori, T Kelley, JG Meara, A Albert, K Bonanthaya, K Chapman, M Cunningham, J Daskalogiannakis, H De Gier, AA Heggie, C Hernandez, O Jackson, Y Jones, L Kangesu, MJ Koudstaal, R Kuchhal, A Lohmander, RE Long, L Magee, L Monson Show all
Cleft Palate Craniofacial Journal | SAGE PUBLICATIONS INC | Published : 2017
DOI: 10.1597/15-292
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 im..
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Awarded by National Institute of Dental and Craniofacial Research
Funding Acknowledgements
We would like to thank the invaluable input provided by the patient and family members of our working group. We would also like to thank the many clinicians and academicians who have devoted their lives toward the care of children with CL/P and toward the better understanding of cleft outcomes. We especially acknowledge Jeffrey R. Marcus, MD, and Bill Shaw, BDS, PhD, and in addition, Amy Abernethy, MD, PhD; Cynthia H. Cassell, PhD; Patricia Chibbaro, MSN, C-PNP; JanetD. Cragan, MD, MPH; David Fitzsimons, BAppSc; Cindy Guernsey, BScN, RN; Anne Klassen, PhD; and Ann MabieDeruyter, CCC-A. This project was funded in part by the 2013 Plastic Surgical Foundation Pilot Research Grant 273938, with relevant presentations at the 69th Annual Meeting of the American Cleft Palate-Craniofacial Association (ACPA) in San Jose, California, the 12th International Congress in Orlando, Florida, and the 71st Annual Meeting of the ACPA in Indianapolis, Indiana. Additional funding was received from Boston Children's Hospital, Children's Hospital of Philadelphia, Texas Children's Hospital, and Great Ormond Street Hospital. We are most appreciative to these organizations for their gracious support of our work, without which it would not have come to fruition.