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Specialist and transitional care provision for amelogenesis imperfecta: a UK-wide survey

Abstract

Background Amelogenesis imperfecta (AI) can be challenging to manage due to the complexity and variation of presentation. Clear care pathways between general practice, specialist paediatric dentistry and adult services are required.

Aim To assess the provision of specialist care and transitional care arrangements for paediatric patients with AI in the UK.

Method An online survey was disseminated to members of the British Society of Paediatric Dentistry in January 2020. Descriptive analysis was used to interpret the quantitative and qualitative results.

Results In total, 115 clinicians across all four nations participated. Most respondents (54%; n = 66), were based in the hospital dental service. Overall, 29% (n = 33) were consultants and 24% (n = 28) were specialists in paediatric dentistry. The most common patient age group seen was 6-12 years old. No clear AI referral pathway into specialist care was reported by 49% (n = 47). A clear transitional care pathway was deemed not to exist by 77% (n = 72), with 85.9% (n = 73) indicating a need. Qualitative analysis themes included 'unclear care pathways' and 'specialist care access problems'.

Conclusion Access to specialist paediatric dental care and transition to adult services is not readily available throughout the UK for AI patients. There is a clear need to establish and improve existing pathways.

Key points

  • Access to specialist paediatric dental care and transition to adult services is not readily available nationally for amelogenesis imperfecta (AI) paediatric patients.

  • There is a need to establish and improve care pathways for paediatric AI patients throughout the UK.

  • There is enthusiasm in the UK paediatric dentistry workforce for improvement to AI care pathways to be made. Education, addressing workforce shortages and refining pathways are areas that require further development.

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Acknowledgements

Many thanks to the members of the British Society of Paediatric Dentistry who participated in this survey.

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Contributions

Sondros Albadri, Susan Parekh and Francesca Soldani approved the survey questions and reviewed the results and manuscript. Fiona Lafferty led the survey roll out, analysis and manuscript writing.

Corresponding author

Correspondence to Fiona Lafferty.

Ethics declarations

The authors declare no conflicts of interest.

Ethical approval was not required for this study as it was deemed to be a service evaluation. The invitations to participate were sent through the BSPD membership with the authors of this paper having no access to participant contact information or any identifying information; consent to participate was implied by proceeding with the survey.

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Lafferty, F., Albadri, S., Parekh, S. et al. Specialist and transitional care provision for amelogenesis imperfecta: a UK-wide survey. Br Dent J (2022). https://doi.org/10.1038/s41415-022-5077-x

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