Measuring the quality of life of youth with facial differences.
OBJECTIVE
To describe the Facial Differences Module of the Youth Quality of Life Instruments (YQOL-FD) and present results evaluating domain structure, internal consistency, reproducibility, validity, and respondent burden.


METHODS
A multisite observational study of youth aged 11 to 18 years with acquired or congenital facial differences.


METHODS
Three hundred seven youth recruited through clinics at four U.S. sites and one U.K. site. Eligible youth were aged 11 to 18 years, had a noticeable facial difference, could read at the fifth-grade level, and, for youth with facial burns, were at least 2 years posttrauma.


METHODS
Included were the newly developed YQOL-FD, the generic Youth Quality of Life Instrument, the Children's Depression Inventory, and demographics.


RESULTS
Principal components analysis showed five significant factors that closely matched the domain structure hypothesized a priori. Domain scores of the YQOL-FD showed acceptable internal consistency and reproducibility. Scores were more strongly correlated with the Children's Depression Inventory score than with self-rating of health as predicted. All domain scores showed adequate discrimination among levels of general quality of life (Wilks lambda = 0.84, p = .001). The median time to complete the module was 10 minutes.


CONCLUSIONS
The YQOL Facial Differences Module augmented information obtained from the generic YQOL measure by addressing specific concerns. The module was well received by youth and showed acceptable measurement properties for evaluating the perceived quality-of-life status of youth facial differences. Future use in longitudinal studies and clinical trials is anticipated to evaluate the ability to detect change.
Patrick
Donald L
DL
Department of Health and Epidemiology, University of Washington, Seattle, Washington 98195-7660, USA. donald@u.washington.edu
Topolski
Tari D
TD
Edwards
Todd C
TC
Aspinall
Cassandra L
CL
Kapp-Simon
Kathleen A
KA
Rumsey
Nichola J
NJ
Strauss
Ronald P
RP
Thomas
Christopher R
CR
D000223:Adaptation, Psychological; D000293:Adolescent; D002648:Child; D019465:Craniofacial Abnormalities / Q000523:psychology*; D003430:Cross-Sectional Studies; D005151:Facial Injuries / Q000523:psychology*; D005260:Female; D006801:Humans; D016014:Linear Models; D008297:Male; D015999:Multivariate Analysis; D025341:Principal Component Analysis; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results; D012649:Self Concept; D011795:Surveys and Questionnaires; D006113:United Kingdom; D014481:United States