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01-04-2015 | Uitgave 4/2015 Open Access

Quality of Life Research 4/2015

Living with orofacial conditions: psychological distress and quality of life in adults affected with Treacher Collins syndrome, cherubism, or oligodontia/ectodermal dysplasia—a comparative study

Quality of Life Research > Uitgave 4/2015
Amy Østertun Geirdal, Solfrid Sørgjerd Saltnes, Kari Storhaug, Pamela Åsten, Hilde Nordgarden, Janicke Liaaen Jensen
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An erratum to this article can be found at http://​dx.​doi.​org/​10.​1007/​s11136-014-0882-6.



The relationship between quality of life, psychological distress, and orofacial syndromes in children and adolescents has been reported in several studies. However, little is known about differences in psychological distress and quality of life among adults with different orofacial conditions. Therefore, the aims of this study were to examine and compare these factors among three groups of adults affected by Treacher Collins syndrome (TCS), cherubism, and oligodontia/ectodermal dysplasia (ED).


We included 11 individuals with TCS (mean age 46.9, SD 12.9 years), 15 with cherubism (mean age 50.3, SD 16.8 years), and 49 with oligodontia/ED (mean age 30.7, SD 15.6 years). The respondents completed questionnaires related to psychological distress and quality of life.


The oligodontia/ED group had a significantly higher level of anxiety and worse mental health-related quality of life than both the TCS and cherubism groups. Adults with TCS reported the highest level of depression, and the lowest levels of overall quality of life, well-being, and physical health-related quality of life. The cherubism group displayed the best overall quality of life, well-being, and mental health.


Psychological distress and quality of life differed in various orofacial conditions. This study provided insight into these aspects that may contribute to improved care.

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