ArticleEuropean archives of paediatric dentistry : official journal of the European Academy of Paediatric Dentistry2026
Evaluating a condition-specific PROM for amelogenesis imperfecta in children and young people: insights from patients and clinicians.
Article in European archives of paediatric dentistry : official journal of the European Academy of Paediatric Dentistry, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
purposeAmelogenesis imperfecta (AI) is a genetic enamel defect affecting both primary and permanent dentitions, often leading to functional, aesthetic, and psychosocial challenges. Patient-reported outcome measures (PROMs) are increasingly used in paediatric dentistry. This study aimed to explore the impact of AI on oral health-related quality of life in children and adolescents using an AI-specific PROM, and to assess clinician use of the PROM in the UK.
methodsThis single-centre retrospective service evaluation involved children with AI who completed a nine-question PROM pre- and mid-treatment. Responses were analysed by treatment stage, age group, and AI subtype. Clinician feedback on the AI PROM was obtained via an online survey.
resultsA total of 68 paired AI PROMs from patients aged 7-19 years were analysed at pre-treatment and mid-treatment stages. The cohort comprised 40 females (58.8%) and 28 males (41.2%). Children under 13 years were more frequently reported functional difficulties, such as pain and eating challenges, while adolescents (≥ 13 years) more often expressed psychosocial concerns including bullying and low self-confidence more frequently. Satisfaction with dental appearance increased from 26 to 42% by the mid-treatment stage. In the clinician feedback survey, 23 of 78 paediatric dentists responded (29.5% response rate). Of those familiar with the AI PROM, 67% reported actively using it in their clinical practice.
conclusionThe AI PROM, while non-validated, provided meaningful insights into patient experiences and supported more empathetic, patient-centred care. Incorporating clinician perspectives further supported its perceived relevance and usefulness.
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