Skip to main content

Research Repository

Advanced Search

Measuring the quality of life of youth with facial differences

Patrick, Donald L.; Topolski, Tari D.; Edwards, Todd C.; Aspinall, Cassandra L.; Kapp-Simon, Kathleen A.; Rumsey, Nichola; Strauss, Ronald P.; Thomas, Christopher R.

Authors

Donald L. Patrick

Tari D. Topolski

Todd C. Edwards

Cassandra L. Aspinall

Kathleen A. Kapp-Simon

Ronald P. Strauss

Christopher R. Thomas



Abstract

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.

Citation

Patrick, D. L., Topolski, T. D., Edwards, T. C., Aspinall, C. L., Kapp-Simon, K. A., Rumsey, N., …Thomas, C. R. (2007). Measuring the quality of life of youth with facial differences. Cleft Palate-Craniofacial Journal, 44(5), 538-547. https://doi.org/10.1597/06-072.1

Journal Article Type Article
Publication Date Sep 1, 2007
Journal Cleft Palate-Craniofacial Journal
Print ISSN 1055-6656
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Volume 44
Issue 5
Pages 538-547
DOI https://doi.org/10.1597/06-072.1
Keywords adolescent, craniofacial abnormalities, health status index, quality of life, YQOL, visible difference
Public URL https://uwe-repository.worktribe.com/output/1033931
Publisher URL http://dx.doi.org/10.1597/06-072.1
Additional Information 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.