Quality of Life of Youth with Craniofacial Conditions: “Project Quality of Life for Teens"

Principal Investigators: Donald Patrick, Ph.D.; University of Washington, Seattle, WA; Kathleen A Kapp-Simon, Ph.D.; Shriners Hospital for Children, Chicago and Northwestern University, Chicago; Christopher Thomas, M.D.; Shriners Hospital for Children, Galveston and University of Texas Medical Branch, Galveston, TX; Ronald Straus, DMD, Ph.D.; University of North Carolina, Raleigh-Durham, NC; Nicole Rumsey, Ph.D.; University of the West of England, Bristol, UK.

Co-Investigators: Todd Edwards, Ph.D.; University of Washington, Seattle, WA; Pravin Patel, M.D., Shriners Hospital for Children, Chicago and Northwestern University, Chicago; Walter J. Meyer, M.D.; Shriners Hospital for Children, Galveston

The goal of this multi-site project is to describe the impact of congenital and acquired craniofacial conditions (CFCs) on the health and quality of life (QoL) of adolescents, and to validate CFC-specific QoL outcome measures for evaluating effectiveness of treatments. This project builds on the prior qualitative phase and includes CFCs present at birth or acquired up to age 18.

To achieve this goal, specific aims are:

1. To describe and compare the QoL associated with craniofacial conditions and facial differences in youth aged 11 to 18;

2. To psychometrically validate the Youth Quality of Life Instrument - Facial Difference Module (YQOL–FD): scale structure, test-retest reliability, discriminant and convergent validity, responsiveness to change, cultural adaptation (Spanish and British English), and respondent burden;

3. To provide preliminary data on the ability of the YQOL - Facial Surgery Attitudes Module (YQOL-FS) to predict changes in QoL (as assessed by the Youth Quality of Life Instrument – Research Version (YQOL-R) generic measure and YQOL-FD) associated with treatment in an observational study; and

4. To measure preferences of adolescents and their professional and family caregivers for further treatment (surgery and therapies) of facial differences, and to compare their perspectives on the point of “diminishing returns.”

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