Exploring experiences of dental care for children with a cleft (V1)
Research type
Research Study
Full title
HARMONY: HeAlthieR sMiles fOr childreN with cleft bY improving tooth decay prevention and management: Qualitative Study
IRAS ID
331398
Contact name
Alexander Gormley
Contact email
Sponsor organisation
University of Bristol
Duration of Study in the UK
1 years, 5 months, 31 days
Research summary
In the United Kingdom 1 in 700 children are born with a cleft lip and/or palate each year. A cleft can cause issues with speech, facial growth and teeth. Tooth decay is nearly entirely preventable, but children with a cleft are at an increased risk of developing it, and we are not entirely sure of the reasons why.
Treatment for decay in young children often includes removing teeth under general anaesthetic (GA). This is expensive, costing the NHS £799 for each GA. Children with a cleft will undergo many surgeries as part of their cleft treatment. Preventing the need for additional operations to treat decay will benefit children with a cleft, their parents, and the NHS.
In 1998 a government report identified children at age 5 with a cleft in the UK had worse outcomes compared to European children and recommended the reorganisation of cleft services including centralisation of care to be delivered in 11 specialised services compared to 57 hospitals. It was recommended a paediatric specialist dentist leads the dental care for children with a cleft.
The Cleft Care UK study in 2015 reported that since reorganisation; the majority of cleft related outcomes had improved, the notable exception was the presence of tooth decay. From our work discussing this issue with parents of children with cleft, it appears that there is a sense of confusion about who should provide dental care and a feeling that the current arrangement is ineffective.
This research aims to interview patients, general dental teams, and paediatric dental teams, to understand reasons for what currently does and does not work. The results of these interviews will be used in future intervention development work.
This study sits in a wider programme of work, including a systematic review, retrospective cohort analysis, and co-production workshop, and are not reviewed in this application.
REC name
East Midlands - Nottingham 1 Research Ethics Committee
REC reference
24/EM/0114
Date of REC Opinion
9 May 2024
REC opinion
Favourable Opinion