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

被引：138

作者：

Allori, Alexander C. ^{[1
]}

Kelley, Thomas ^{[2
]}

Meara, John G. ^{[3
]}

Albert, Asteria ^{[4
]}

Bonanthaya, Krishnamurthy ^{[5
]}

Chapman, Kathy ^{[6
]}

Cunningham, Michael ^{[7
]}

Daskalogiannakis, John ^{[8
]}

de Gier, Henriette ^{[9
]}

Heggie, Andrew A. ^{[10
]}

Hernandez, Cristina ^{[11
]}

Jackson, Oksana ^{[12
]}

Jones, Yin ^{[13
]}

Kangesu, Loshan ^{[14
,15
]}

Koudstaal, Maarten J. ^{[16
]}

Kuchhal, Rajiv

Lohmander, Anette ^{[17
,18
]}

Long, Ross E., Jr. ^{[19
,20
,21
]}

Magee, Leanne ^{[22
,23
]}

Monson, Laura ^{[24
]}

Rose, Elizabeth ^{[25
]}

Sitzman, Thomas J. ^{[26
]}

Taylor, Jesse A. ^{[27
]}

Thorburn, Guy ^{[14
]}

van Eeden, Simon ^{[28
]}

Williams, Chris ^{[29
]}

Wirthlin, John O. ^{[24
]}

Wong, Karen W. ^{[30
]}

机构：

[1] Duke Childrens Hosp & Hlth Ctr, Div Plast Maxillofacial & Oral Surg, Durham, NC USA

[2] Int Consortium Hlth Outcomes Measurement, Business Dev & Partnerships, Boston, MA USA

[3] Harvard Med Sch, Boston Childrens Hosp, Dept Plast & Oral Surg, Boston, MA USA

[4] Hosp San Juan Dios, Dept Pediat Surg, Barcelona, Spain

[5] Mahaveer Jain Hosp, Oral & Maxillofacial Surg, Bangalore, Karnataka, India

[6] Univ Utah, Dept Commun Sci & Disorders, Salt Lake City, UT USA

[7] Univ Washington, Seattle Childrens Hosp, Div Craniofacial Med, Seattle, WA 98195 USA

[8] Univ Toronto, Hosp Sick Children, Dept Orthodont, Toronto, ON, Canada

[9] Clin Fac Otolaryngologist, Dept Otolaryngol, Erasmus Med Ctr, Rotterdam, Netherlands

[10] Univ Melbourne, Royal Childrens Hosp Melbourne, Dept Plast Maxillofacial Surg, Melbourne, Vic, Australia

[11] Texas Childrens Hosp, Outcomes & Impact Serv, Houston, TX 77030 USA

[12] Childrens Hosp Philadelphia, Div Plast & Reconstruct Surg, Philadelphia, PA 19104 USA

[13] Cleft Lip & Palate Assoc, London, England

[14] North Thames Cleft Ctr, London, England

[15] Broomfield Hosp Chelmsford, St Andrews Ctr Plast Surg, Chelmsford, Essex, England

[16] Sophias Childrens Hosp, Dept Oral Maxillofacial Surg, Dutch Craniofacial Ctr, Erasmus Med Ctr, Rotterdam, Netherlands

[17] Karolinska Inst, Div Speech & Language Pathol, Dept Clin Sci Intervent & Technol CLINTEC, Stockholm, Sweden

[18] Karolinska Univ Hosp, Dept Speech & Language Pathol, Stockholm, Sweden

[19] Lancaster Cleft Craniofacial Program, Lancaster, PA USA

[20] Albert Einstein Med Ctr, Dept Orthodont, Philadelphia, PA 19141 USA

[21] Amer Cleft Palate Craniofacial Assoc, Task Force Americleft, Lancaster, PA USA

[22] Childrens Hosp Philadelphia, Dept Child & Adolescent Psychiat, Philadelphia, PA 19104 USA

[23] Childrens Hosp Philadelphia, Dept Behav Sci, Philadelphia, PA 19104 USA

[24] Texas Childrens Hosp, Baylor Coll Med, Dept Plast Surg, Houston, TX 77030 USA

[25] Univ Melbourne, Royal Childrens Hosp Melbourne, Dept Otolaryngol, Melbourne, Vic, Australia

[26] Cincinnati Childrens Hosp, Dept Plast Surg, Cincinnati, OH USA

[27] Childrens Hosp Philadelphia, Div Plast & Reconstruct Surg, Philadelphia, PA 19104 USA

[28] Northwest Norhtwales & Isle Man Cleft Network, Liverpool, Merseyside, England

[29] Cleft Lip Palate Assoc, London, England

[30] Univ Toronto, Hosp Sick Children, Div Plast Reconstruct Surg, Toronto, ON, Canada

来源：

CLEFT PALATE CRANIOFACIAL JOURNAL | 2017年 / 54卷 / 05期

关键词：

cleft lip; cleft palate; continuous quality improvement; learning health care; outcomes; patient-reported outcomes; value-based health care; PATIENT-REPORTED OUTCOMES; ADVISORY GROUP CSAG; QUALITY-OF-LIFE; DENTAL ARCH RELATIONSHIPS; SOFT-TISSUE PROFILE; LIP AND/OR PALATE; UNITED-KINGDOM; HEALTH IMPACT; 30-DAY COMPLICATIONS; CRANIOFACIAL FORM;

D O I：

10.1597/15-292

中图分类号：

R78 [口腔科学];

学科分类号：

1003 ;

摘要：

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.

引用

页码：540 / 554

页数：15

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