Measuring the quality of life of youth with facial differences

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

Research output: Contribution to journalArticle

50 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)538-547
Number of pages10
JournalCleft Palate-Craniofacial Journal
Volume44
Issue number5
DOIs
StatePublished - Sep 2007

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Quality of Life
Equipment and Supplies
Principal Component Analysis
Burns
Observational Studies
Longitudinal Studies
Demography
Clinical Trials
Health

Keywords

  • Adolescent
  • Craniofacial abnormalities
  • Health status index
  • Quality of life
  • YQOL

ASJC Scopus subject areas

  • Surgery
  • Dentistry(all)

Cite this

Patrick, D. L., Topolski, T. D., Edwards, T. C., Aspinall, C. L., Kapp-Simon, K. A., Rumsey, N. J., ... Thomas, C. (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

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 J.; Strauss, Ronald P.; Thomas, Christopher.

In: Cleft Palate-Craniofacial Journal, Vol. 44, No. 5, 09.2007, p. 538-547.

Research output: Contribution to journalArticle

Patrick, DL, Topolski, TD, Edwards, TC, Aspinall, CL, Kapp-Simon, KA, Rumsey, NJ, Strauss, RP & Thomas, C 2007, 'Measuring the quality of life of youth with facial differences', Cleft Palate-Craniofacial Journal, vol. 44, no. 5, pp. 538-547. https://doi.org/10.1597/06-072.1
Patrick DL, Topolski TD, Edwards TC, Aspinall CL, Kapp-Simon KA, Rumsey NJ et al. Measuring the quality of life of youth with facial differences. Cleft Palate-Craniofacial Journal. 2007 Sep;44(5):538-547. https://doi.org/10.1597/06-072.1
Patrick, Donald L. ; Topolski, Tari D. ; Edwards, Todd C. ; Aspinall, Cassandra L. ; Kapp-Simon, Kathleen A. ; Rumsey, Nichola J. ; Strauss, Ronald P. ; Thomas, Christopher. / Measuring the quality of life of youth with facial differences. In: Cleft Palate-Craniofacial Journal. 2007 ; Vol. 44, No. 5. pp. 538-547.
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