Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries

被引：95

作者：

Klassen, Anne F. ^{[1
]}

Riff, Karen W. Y. Wong ^{[2
]}

Longmire, Natasha M. ^{[3
]}

Albert, Asteria ^{[4
]}

Allen, Gregory C. ^{[5
]}

Aydin, Mustafa Asim ^{[6
]}

Baker, Stephen B. ^{[7
,8
]}

Cano, Stefan J. ^{[9
]}

Chan, Andrew J. ^{[10
]}

Courtemanche, Douglas J. ^{[11
,12
]}

Dreise, Marieke M. ^{[13
]}

Goldstein, Jesse A. ^{[14
]}

Goodacre, Timothy E. E. ^{[15
]}

Harman, Karen E. ^{[16
]}

Munill, Montserrat ^{[17
]}

Mahony, Aisling O. ^{[18
]}

Aguilera, Mirta Palomares ^{[19
]}

Peterson, Petra ^{[20
]}

Pusic, Andrea L. ^{[21
]}

Slator, Rona ^{[22
]}

Stiernman, Mia ^{[23
]}

Tsangaris, Elena ^{[24
]}

Tholpady, Sunil S. ^{[25
]}

Vargas, Federico ^{[26
]}

Forrest, Christopher R. ^{[27
]}

机构：

[1] McMaster Univ, Dept Pediat, Hamilton, ON, Canada

[2] Univ Toronto, Hosp Sick Children, Dept Surg, Div Plast & Reconstruct Surg, Toronto, ON, Canada

[3] McMaster Univ, Dept Pediat, Hamilton, ON, Canada

[4] Univ Barcelona, Hosp Sant Joan de Deu, Dept Pediat Surg, Barcelona, Spain

[5] Univ Colorado, Sch Med, Dept Otolaryngol Head & Neck Surg, Aurora, CO USA

[6] Suleyman Demirel Univ, Sch Med, Dept Plast Recon struct & Aesthet Surg, Isparta, Turkey

[7] Inova Childrens Hosp, Falls Church, VA USA

[8] MedStar Georgetown Univ, Dept Plast Surg, Washington, DC USA

[9] Modus Outcomes, Letchworth Garden City, England

[10] Flinders Med Ctr, Dept Plast Surg, Bedford Pk, SA, Australia

[11] Univ British Columbia, Dept Surg, Div Plast Surg, Vancouver, BC, Canada

[12] BC Childrens Hosp, Vancouver, BC, Canada

[13] Univ Groningen, Univ Med Ctr Groningen, Dept Plast Surg, Groningen, Netherlands

[14] Univ Pittsburgh, Childrens Hosp Pittsburgh, Med Ctr, Dept Plast Surg, Pittsburgh, PA USA

[15] Oxford Univ Hosp NHS Fdn Trust, Spires Cleft Ctr, Oxford, England

[16] McMaster Univ, Ron Joyce Childrens Hlth Ctr, Hamilton, ON, Canada

[17] Hosp Valle De Hebron, Maxillofacial Surg Dept, Barcelona, Spain

[18] St James Hosp, Natl Maxillofacial Unit, Dublin, Ireland

[19] Fdn Gantz, Dept Fonoaudiol, El Lazo, Pudahuel, Chile

[20] Karolinska Univ Hosp, Dept Reconstruct Plast Surg, Stockholm, Sweden

[21] Mem Sloan Kettering Canc Ctr, Plast & Reconstruct Surg, New York, NY 10021 USA

[22] Birmingham Childrens Hosp, West Midlands Cleft Serv, Birmingham, AL USA

[23] Lund Univ, Dept Clin Sci Malmo, Lund, Sweden

[24] McMaster Univ, Dept Hlth Res Methods Evidence & Impact, Hamilton, ON, Canada

[25] Indiana Univ, RL Roudebush Vet Affairs Med Ctr, Sch Med, Indianapolis, IN 46204 USA

[26] Univ Bosque, Fdn Operac Sonrisa Colombia, Div Plast Surg, Bogota, Colombia

[27] Hosp Sick Children, Ctr Craniofacial Care & Res, Toronto, ON, Canada

来源：

CANADIAN MEDICAL ASSOCIATION JOURNAL | 2018年 / 190卷 / 15期

基金：

加拿大健康研究院;

关键词：

QUALITY-OF-LIFE; DENTAL ARCH RELATIONSHIPS; REPORTED OUTCOME MEASURES; TASK-FORCE; INTERCENTER; EUROCLEFT; SUPPORT; SURGERY; TRANSLATION; METHODOLOGY;

D O I：

10.1503/cmaj.170289

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

BACKGROUND: Patients with cleft lip and/or palate can undergo numerous procedures to improve appearance, speech, dentition and hearing. We developed a cleft-specific patient-reported outcome instrument to facilitate rigorous international measurement and benchmarking. METHODS: Data were collected from patients aged 8-29 years with cleft lip and/or palate at 30 hospitals in 12 countries between October 2014 and November 2016. Rasch measurement theory analysis was used to refine the scales and to examine reliability and validity. Normative CLEFT-Q values were computed for age, sex and cleft type. RESULTS: Analysis led to the refinement of an eating and drinking checklist and 12 scales measuring appearance (of the face, nose, nostrils, teeth, lips, jaws and cleft lip scar), health-related quality of life (psychological, social, school, speech distress) and speech function. All scales met the requirements of the Rasch model. Analysis to explore differential item functioning by age, sex and country provided evidence to support the use of a common scoring algorithm for each scale for international use. Lower (worse) scores on CLEFT-Q scales were associated with having a speech problem, being unhappy with facial appearance, and needing future cleft-related treatments, providing evidence of construct validity. Normative values for age, sex and cleft type showed poorer outcomes associated with older age, female sex and having a visible cleft. INTERPRETATION: The CLEFT-Q represents a rigorously developed instrument that can be used internationally to collect and compare evidence-based outcomes data from patients aged 8-29 years of age with cleft lip and/or palate.

引用

页码：E455 / E462

页数：8

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