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      Amelogenesis Imperfecta and Early Restorative Crown Therapy: An Interview Study with Adolescents and Young Adults on Their Experiences

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          Abstract

          Patients with Amelogenesis imperfecta (AI) can present with rapid tooth loss or fractures of enamel as well as alterations in enamel thickness, color, and shape; factors that may compromise aesthetic appearance and masticatory function. The aim was to explore the experiences and perceptions of adolescents and young adults living with AI and receiving early prosthetic therapy. Seven patients with severe AI aged 16 to 23 years who underwent porcelain crown therapy participated in one-to-one individual interviews. The interviews followed a topic guide consisting of open-ended questions related to experiences of having AI. Transcripts from the interviews were analyzed using thematic analysis. The analysis process identified three main themes: Disturbances in daily life, Managing disturbances, and Normalization of daily life. These themes explain the experiences of patients living with enamel disturbances caused by AI and receiving early crown therapy. Experiences include severe pain and sensitivity problems, feelings of embarrassment, and dealing with dental staff that lack knowledge and understanding of their condition. The patients described ways to manage their disturbances and to reduce pain when eating or drinking, and strategies for meeting other people. After definitive treatment with porcelain crown therapy, they described feeling like a normal patient. In conclusion the results showed that adolescents and young adults describe a profound effect of AI on several aspects of their daily life.

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          Most cited references 26

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          Amelogenesis imperfecta, dentinogenesis imperfecta and dentin dysplasia revisited: problems in classification.

           C J Witkop (1988)
          The classification and prevalence of amelogenesis imperfecta is updated based upon new information in the literature. Problems with the currently used classification of inherited dentin defects are discussed.
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            The mass media and American adolescents' health.

            American teens today grow up in a world saturated with the mass media. In general, the media depict a world in which unhealthy behaviors such as physical aggression, unprotected sex, smoking, and drinking are glamorous and risk-free. We summarize what is known about the media's effects on four adolescent health issues that have been studied most comprehensively: violence and aggression; sex; obesity, nutrition, and eating disorders; and alcohol and tobacco use. A number of approaches that have potential for helping turn the media into more positive forces for adolescents' health are discussed
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              The psychosocial impact of developmental dental defects in people with hereditary amelogenesis imperfecta.

              Amelogenesis imperfecta (AI) is a hereditary dental condition with poor esthetics and dental sensitivity that frequently requires extensive dental treatment. The authors hypothesized that AI is associated with a negative psychosocial outcome. Family members with and without AI completed a questionnaire including demographic and dental history questions, as well as a number of psychometric scales. The authors investigated the effects of AI status (with versus without), sex and age on each of the psychosocial outcomes using a generalized linear model. Subjects with AI (n = 30) had higher levels of social avoidance and distress, as well as higher levels of dysfunction, discomfort and disability attributable to their oral condition compared with subjects without AI (n = 29). The relationship of AI status to fear of negative evaluation, mastery and self-esteem was age-dependent. Younger subjects with AI tended to have higher fear of negative evaluation scores, while older subjects without AI tended to have higher fear of negative evaluation scores. Additionally, subjects without AI showed a definite decrease in mastery and self-esteem scores with age, while subjects with AI tended to show an increase in mastery and self-esteem scores with age. These results indicate that having AI has a marked impact on the psychosocial health of affected people comparable with the impact of systemic health conditions, especially at younger ages. Dental coverage for AI traditionally is excluded by third-party payers as being solely for esthetic reasons. The authors' study shows that AI has marked psychosocial effects, which suggests that dental treatment could be medically necessary and has far-reaching implications for the affected person's overall health.
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                Author and article information

                Contributors
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                30 June 2016
                2016
                : 11
                : 6
                Affiliations
                [1 ]Department of Dental Medicine, Division of Pediatric Dentistry, Karolinska Institutet, Stockholm, Sweden
                [2 ]Center for Pediatric Oral Health Research, Stockholm, Sweden
                [3 ]Department of Pediatric Dentistry, Public Dental Service, Dalarna County, Falun, Sweden
                [4 ]Department of Thematic Studies, Child Studies, Linköping University, Linköping, Sweden
                University of North Carolina at Chapel Hill, UNITED STATES
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                Conceived and designed the experiments: GD AW GPL. Performed the experiments: GPL TH. Analyzed the data: GPL AW TH GD. Wrote the paper: GPL GD AW.

                [¤]

                Current address: Karolinska Institutet, Department of Dental Medicine, Division of Pediatric Dentistry, POB 4064, SE-141 04 Huddinge, Sweden

                PONE-D-16-06371
                10.1371/journal.pone.0156879
                4928800
                27359125
                © 2016 Pousette Lundgren et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                Counts
                Figures: 1, Tables: 2, Pages: 15
                Product
                Funding
                Funded by: funder-id http://dx.doi.org/10.13039/501100006721, Landstinget Dalarnas;
                Award Recipient :
                Funded by: Emelie and Gotthard Thourén Foundation, Karolinska
                Award Recipient :
                The study was funded by the Public Dental Service in the County of Dalarna. The funders had no role in the decision to publish or in the study design. They paid the salary for GPL during the writing of the manuscript.
                Categories
                Research Article
                Biology and Life Sciences
                Anatomy
                Digestive System
                Teeth
                Medicine and Health Sciences
                Anatomy
                Digestive System
                Teeth
                Biology and Life Sciences
                Anatomy
                Head
                Jaw
                Teeth
                Medicine and Health Sciences
                Anatomy
                Head
                Jaw
                Teeth
                Biology and Life Sciences
                Physiology
                Sensory Physiology
                Somatosensory System
                Pain Sensation
                Medicine and Health Sciences
                Physiology
                Sensory Physiology
                Somatosensory System
                Pain Sensation
                Biology and Life Sciences
                Neuroscience
                Sensory Systems
                Somatosensory System
                Pain Sensation
                People and Places
                Population Groupings
                Age Groups
                Adolescents
                Biology and Life Sciences
                Physiology
                Physiological Processes
                Eating
                Medicine and Health Sciences
                Physiology
                Physiological Processes
                Eating
                Medicine and Health Sciences
                Health Care
                Patients
                People and Places
                Population Groupings
                Age Groups
                Young Adults
                Medicine and Health Sciences
                Oral Medicine
                Dentistry
                Medicine and Health Sciences
                Pain Management
                Custom metadata
                There is an ethical restriction for making the transcribed interviews available. In the ethical permission, the authors did not ask for this and the patients have not given their approval for publication. The transcribed interviews in Swedish language can be made available to researchers on request to the corresponding author, gunilla.pousette-lundgren@ 123456ki.se .

                Uncategorized

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