Measuring the quality of life of youth with facial differences

Patrick, D. L., Topolski, T. D., Edwards, T. C., Aspinall, C. L., Kapp-Simon, K. A., Rumsey, N., Strauss, R. P. and Thomas, C. R. (2007) Measuring the quality of life of youth with facial differences. The Cleft Palate-Craniofacial Journal, 44 (5). pp. 538-547. ISSN 1055-6656 Available from:

Full text not available from this repository

Publisher's URL:


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. Design: A multisite observational study of youth aged 11 to 18 years with acquired or congenital facial differences. Participants: 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. Measures: 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 λ = 0.84, p = .001). The median time to complete the module was 10 minutes. Discussion: 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.

Item Type:Article
Additional Information:Paper reports results of multicentre trial funded by US National Institutes of Health (NIH), with Rumsey heading only UK Centre. Invited keynote speaker, and UK representative, 8th European Craniofacial Congress 2007. Invited keynote speaker Canadian Association of Plastic Surgeons conference 2007.
Uncontrolled Keywords:adolescent, craniofacial abnormalities, health status index, quality of life, YQOL
Faculty/Department:Faculty of Health and Applied Sciences > Department of Health and Social Sciences
ID Code:11976
Deposited By: Professor N. Rumsey
Deposited On:16 Dec 2010 12:46
Last Modified:15 Nov 2016 18:29

Request a change to this item