title: Amelogenesis Imperfecta and Early Restorative Crown Therapy: An Interview Study with Adolescents and Young Adults on Their Experiences.
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.
authors.affiliation: Department of Dental Medicine, Division of Pediatric Dentistry, Karolinska Institutet, Stockholm, Sweden.|Center for Pediatric Oral Health Research, Stockholm, Sweden.|Department of Pediatric Dentistry, Public Dental Service, Dalarna County, Falun, Sweden.
authors.forename: Gunilla
authors.identifier: http://orcid.org/0000-0002-5018-6216
authors.initials: G
authors.lastname: Pousette Lundgren
authors.affiliation: Department of Thematic Studies, Child Studies, Linköping University, Linköping, Sweden.
authors.forename: Anette
authors.initials: A
authors.lastname: Wickström
authors.affiliation: Department of Dental Medicine, Division of Pediatric Dentistry, Karolinska Institutet, Stockholm, Sweden.|Center for Pediatric Oral Health Research, Stockholm, Sweden.
authors.forename: Tove
authors.initials: T
authors.lastname: Hasselblad
authors.affiliation: Department of Dental Medicine, Division of Pediatric Dentistry, Karolinska Institutet, Stockholm, Sweden.|Center for Pediatric Oral Health Research, Stockholm, Sweden.
authors.forename: Göran
authors.initials: G
authors.lastname: Dahllöf
mesh_terms: D000293:Adolescent; D000567:Amelogenesis Imperfecta / Q000601:surgery*; D003442:Crowns; D003743:Dental Enamel; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D017060:Patient Satisfaction; D016896:Treatment Outcome; D055815:Young Adult