A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care

Author:

Allori Alexander C.1,Kelley Thomas2,Meara John G.3,Albert Asteria4,Bonanthaya Krishnamurthy5,Chapman Kathy6,Cunningham Michael7,Daskalogiannakis John8,De Gier Henriette9,Heggie Andrew A.10,Hernandez Cristina11,Jackson Oksana12,Jones Yin13,Kangesu Loshan14,Koudstaal Maarten J.15,Kuchhal Rajiv16,Lohmander Anette17,Long Ross E.18,Magee Leanne19,Monson Laura20,Rose Elizabeth21,Sitzman Thomas J.22,Taylor Jesse A.12,Thorburn Guy23,Van Eeden Simon24,Williams Chris13,Wirthlin John O.20,Wong Karen W.25

Affiliation:

1. Division of Plastic, Maxillofacial & Oral Surgery, Duke Children's Hospital & Health Center, Durham, North Carolina.

2. Business Development & Partnerships, International Consortium for Health Outcomes Measurement, Boston, Massachusetts.

3. Department of Plastic & Oral Surgery, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.

4. Department of Pediatric Surgery, Hospital Sant Joan de Deu, Barcelona, Spain.

5. Oral & Maxillofacial Surgery, Mahaveer Jain Hospital, Bangalore, India.

6. Department of Communication Sciences and Disorders, University of Utah, Salt Lake City, Utah.

7. Division of Craniofacial Medicine, Seattle Children's Hospital, University of Washington, Seattle, Washington.

8. Department of Orthodontics, Hospital for Sick Children, University of Toronto, Toronto, Canada, and Member, Task Force on Americleft, American Cleft Palate-Craniofacial Association, Lancaster, Pennsylvania.

9. Department of Otolaryngology, Erasmus Medical Center, Rotterdam, Netherlands.

10. Department of Plastic & Maxillofacial Surgery, Royal Children's Hospital Melbourne, University of Melbourne, Melbourne, Australia.

11. Outcomes & Impact Service, Texas Children's Hospital; Houston, Texas.

12. Division of Plastic & Reconstructive Surgery, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.

13. Cleft Lip & Palate Association, London, England.

14. North Thames Cleft Centre, London, United Kingdom, and Consultant Surgeon, St. Andrews Centre of Plastic Surgery, Broomfield Hospital Chelmsford, Essex, United Kingdom.

15. Department of Oral & Maxillofacial Surgery, Dutch Craniofacial Centre, Sophia's Children's Hospital, Erasmus Medical Center, Rotterdam, Netherlands.

16. Parent representative, Bangalore, India.

17. Division of Speech and Language Pathology, Department of Clinical Science, Intervention and Technology (CLINTEC), Karolinska Institutet, Stockholm, Sweden, and Professor, Department of Speech and Language Pathology, Karolinska University Hospital, Stockholm, Sweden.

18. Lancaster Cleft/Craniofacial Program, Lancaster, Pennsylvania; Professor, Department of Orthodontics, Albert Einstein Medical Center, Philadelphia, Pennsylvania, and Task Force on Americleft, American Cleft Palate-Craniofacial Association, Lancaster, Pennsylvania.

19. Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.

20. Department of Plastic Surgery, Texas Children's Hospital, Baylor College of Medicine, Houston, Texas.

21. Department of Otolaryngology, Royal Children's Hospital Melbourne, University of Melbourne, Melbourne, Australia.

22. Department of Plastic Surgery, Cincinnati Children's Hospital, Cincinnati, Ohio.

23. North Thames Cleft Centre, London, United Kingdom.

24. Northwest, North Wales, and Isle of Man Cleft Network, Liverpool, England.

25. Division of Plastic & Reconstructive Surgery, Hospital for Sick Children, University of Toronto, Toronto, Canada.

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.

Publisher

SAGE Publications

Subject

Otorhinolaryngology,Oral Surgery

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