Donald L. Patrick
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
Tari D. Topolski
Todd C. Edwards
Cassandra L. Aspinall
Kathleen A. Kapp-Simon
Nicky Rumsey Nichola.Rumsey@uwe.ac.uk
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. |
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