Format

Send to

Choose Destination
See comment in PubMed Commons below
Cleft Palate Craniofac J. 2005 Jan;42(1):19-24.

Approaches to craniofacial-specific quality of life assessment in adolescents.

Author information

  • 1University of Washington, Seattle, Washington, USA. toddce@u.washington.edu

Abstract

OBJECTIVE:

To ascertain the domains that adolescents aged 11 to 18 years with congenital and acquired craniofacial differences (CFDs) consider important to their quality of life (QoL) to create a craniofacial-specific module.

DESIGN:

Interviews and inductive qualitative methods were used to guide the development of a conceptual and measurement model of QoL among adolescents with CFDs.

SETTING:

The Craniofacial Center at Children's Hospital and Regional Medical Center in Seattle, Washington.

PATIENTS, PARTICIPANTS:

Thirty-three in-depth interviews with adolescents (aged 11 to 18 years), one young adult interview (age 19 years), 14 in-depth interviews with parents, one young adult focus group, one parent focus group, and one panel of researchers and clinical professionals working in the field.

RESULTS:

Using the qualitative methodology, grounded theory, seven domains that adolescents with CFDs perceive are important to having a good QoL were found. Six of the domains (coping, stigma and isolation, intimacy and trust, positive consequences, self-image, and negative emotions) comprised the Youth Quality of Life Instrument-Facial Differences module. One other domain, surgery, was a salient issue for many of the youth, but not all, so it was made into a separate module, the Youth Quality of Life Instrument- Craniofacial Surgery module. This module relates to the experience of surgery, outcomes of surgery, and preferences for future surgery.

CONCLUSIONS:

Using an established qualitative methodology, two QoL modules specific to adolescents with CFDs were developed and are ready for psychometric validation. Potential uses of the instruments are discussed.

PMID:
15643913
DOI:
10.1597/03-097.2.1
[PubMed - indexed for MEDLINE]
PubMed Commons home

PubMed Commons

0 comments
How to join PubMed Commons

    Supplemental Content

    Loading ...
    Support Center