Evaluating a condition-specific PROM for amelogenesis imperfecta in children and young people: insights from patients and clinicians.

PURPOSE: Amelogenesis 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.

METHODS

This 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.

RESULTS

A 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.

CONCLUSION

The 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.