{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,30]],"date-time":"2026-04-30T04:24:07Z","timestamp":1777523047555,"version":"3.51.4"},"reference-count":49,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2005,1,1]],"date-time":"2005-01-01T00:00:00Z","timestamp":1104537600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["The Cleft Palate Craniofacial Journal"],"published-print":{"date-parts":[[2005,1]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Interviews and inductive qualitative methods were used to guide the development of a conceptual and measurement model of QoL among adolescents with CFDs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>The Craniofacial Center at Children's Hospital and Regional Medical Center in Seattle, Washington.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patients, Participants<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>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\u2013Facial 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\u2013 Craniofacial Surgery module. This module relates to the experience of surgery, outcomes of surgery, and preferences for future surgery.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1597\/03-097.2.1","type":"journal-article","created":{"date-parts":[[2005,1,11]],"date-time":"2005-01-11T15:50:08Z","timestamp":1105458608000},"page":"19-24","source":"Crossref","is-referenced-by-count":50,"title":["Approaches to Craniofacial-Specific Quality of Life Assessment in Adolescents"],"prefix":"10.1177","volume":"42","author":[{"given":"Todd C.","family":"Edwards","sequence":"first","affiliation":[{"name":"University of Washington"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Donald L.","family":"Patrick","sequence":"additional","affiliation":[{"name":"University of Washington"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tari D.","family":"Topolski","sequence":"additional","affiliation":[{"name":"University of Washington"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cassandra 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