Patient-reported outcome measure for children and young people with amelogenesis imperfecta. Br Dent J 2021; https://doi.org/10.1038/s41415-021-3329-9
© pressureUA/ciStock/Getty
This paper reports a multi-centre service evaluation across six UK specialist paediatric dentistry services. It is noteworthy as the evaluation tool used is a simple but well-designed patient-reported outcome measure (PROM) placing the child at the centre of a personalised approach to a widely varying, often dentally disfiguring enamel anomaly, amelogenesis imperfecta (AI).
A PROM is a questionnaire designed to produce health outcomes reported directly by patients experiencing a condition rather than clinicians' outcomes.1 Used well, a PROM provides a tool for gathering personal wishes, symptoms and quality of life, and should be developed for a condition by clinicians who manage the condition, aided by patients with lived experience of the condition. It can be used to track patients' thoughts before, during and after treatment, providing insight into the impact of those three phases. In the UK, the National Health Service (NHS) encourage PROMs, yet there are few published in dental services and none for dental anomalies.
Meticulously planned and described, the PROM was piloted with ten young patients with AI, feedback was actioned and peer review was obtained from the national AI Clinical Excellence Network. Currently, there are no published clinical guidelines in the UK on the management of AI, but the American Academy of Paediatric Dentistry guideline states that it is imperative that both clinical and emotional needs of the child should be addressed.2 Previous management strategies were based upon the phenotype of AI and often great variation exists, even within families. Treatment is often complex and long.
The PROM was planned to be given to every child with AI in the six collaborating units between 1 January-31 March 2019. The censor date was brought forward due to the COVID-19 lockdown and clinic closure prevented two centres accessing data, so results were based on 60 patients from the remaining four centres.
So, why was this PROM useful? We know from previous work that AI impacts children in various ways.3,4 The PROM highlighted experience of sensitivity, pain, disliking appearance and bullying, but these individual issues reported were, interestingly, not specific to the clinical presentations. Children completing treatment in specialist-led settings had high levels of satisfaction with outcomes. This underlines the need for primary care practitioners to be adept at diagnosing AI and early referral to specialist services, so children can receive optimum care. A UK clinical guideline is long overdue!
References
- 1.Krogsgaard M R, Brodersen J, Christensen K B et al. What is a PROM and why do we need it? Scand J Med Sci Sports 2021; 31: 967-971. [DOI] [PubMed]
- 2.American Academy of Paediatric Dentistry. Guideline on Dental management of Heritable Dental Development Anomalies. Paediatr Dent 2016; 38: 302-307. [PubMed]
- 3.Parekh S, Almehateb M, Cunningham S J. How do children with amelogenesis imperfecta feel about their teeth? Int J Paediatr Dent 2014; 24: 326-335. [DOI] [PubMed]
- 4.Lundgren G P, Karsten A, Dahllof G. Oral health-related quality of life before and after crown therapy in young patients with amelogenesis imperfecta. Health Qual Life Outcomes 2015; 13: 197-205. [DOI] [PMC free article] [PubMed]