Patient-reported outcome measure for children and young people with amelogenesis imperfecta
- 6 September 2021
- journal article
- research article
- Published by Springer Science and Business Media LLC in British Dental Journal
Abstract
Background Amelogenesis imperfecta (AI) is a genetic enamel defect that can affect both the primary and permanent dentition. It has a range of clinical phenotypes, and children and young people often present with challenging oral health needs. Patient-reported outcome measures (PROMs) can identify key patient concerns. Methods This was a multi-centre service evaluation across several specialist paediatric dentistry services in the UK. A PROM questionnaire was created with clinician and patient input, through peer review with the national AI Clinical Excellence Network, as well as piloting the PROM with ten children and young people with AI. The final PROM questionnaire was distributed to all patients with AI attending each unit between January and March 2020. Results Sixty children and young people (aged 5-17 years) across four specialist units participated, with 72% reporting that they 'often' or 'sometimes' experienced pain or sensitivity and 76% reporting that they 'often' or 'sometimes' felt unhappy with the way their teeth look. Of the patients who were post-treatment, 81% indicated that they were happy with their teeth, compared to just 41% of patients who were mid-treatment and 33% of patients who were pre-treatment. Conclusion Children and young people with AI experience a range of issues related to their function and psychosocial wellbeing. This simple PROM demonstrates the range of issues this group of patients face, and could be used to monitor an individual's progress to ensure that treatment is planned to address the patient's individual concerns and needs.This publication has 12 references indexed in Scilit:
- Change in Oral Health-Related Quality of Life Following Minimally Invasive Aesthetic Treatment for Children with Molar Incisor Hypomineralisation: A Prospective StudyDentistry Journal, 2018
- Tooth whitening for the under-18-year-old patientBritish Dental Journal, 2018
- Amelogenesis Imperfecta; Genes, Proteins, and PathwaysFrontiers in Physiology, 2017
- Amelogenesis Imperfecta and Early Restorative Crown Therapy: An Interview Study with Adolescents and Young Adults on Their ExperiencesPLOS ONE, 2016
- How do children with amelogenesis imperfecta feel about their teeth?International Journal of Paediatric Dentistry, 2013
- Amelogenesis imperfecta - lifelong management. Restorative management of the adult patientBritish Dental Journal, 2013
- Impact of moderate and severe hypodontia and amelogenesis imperfecta on quality of life and self-esteem of adult patientsJournal of Dentistry, 2013
- Managing the paediatric patient with amelogenesis imperfectaBritish Dental Journal, 2012
- Amelogenesis imperfecta: an introductionBritish Dental Journal, 2012
- The psychosocial impact of developmental dental defects in people with hereditary amelogenesis imperfectaThe Journal of the American Dental Association, 2005