About the research

Each year around 1000 children are born with cleft lip and/or palate in the United Kingdom. Many require long term multi-disciplinary care. Twenty years ago, children with cleft lip and/or palate were treated in 57 centres. The Clinical Standards Advisory Group (CSAG) survey of five year olds conducted in the mid-1990s showed that outcomes across a range of domains (including facial growth and speech) were poor.

Following publication of the CSAG survey, services across the United Kingdom were centralised. This happened more quickly in some regions. Care for children with cleft lip and/or palate is now provided by multi-disciplinary teams working in 11 managed clinical networks.

We carried out a repeat nationwide cross-sectional survey of five year olds some 15 years later to evaluate the impact of this centralised, audited multi-disciplinary care model. We collected comprehensive data on care and outcomes from 268 children with unilateral cleft lip and palate.

Image: CLAPA

Key findings

• Most outcomes (facial growth, appearance, speech) have improved since the mid-1990s. For example, the proportion of children with good or excellent dento-alveolar arch relationships (a measure of facial growth) increased from 30% to 53%.
• Some important outcomes have not improved (oral health and hearing). Forty five percent of children were free of dental decay in the original survey compared to 48% in the current survey.
• Even for improved outcomes there was still a proportion of children with poor results. Seventeen percent of children still had unintelligible or just-intelligible speech.
• Between centres there was substantial variation in practice (for oral health prevention measures, hearing and speech treatment) and for some outcomes (e.g. speech intelligibility where the centre explained 13% of the observed variation in outcome).
• Care predicts outcome. Good hearing and provision of speech intervention predicted good speech suggesting that child outcomes could be improved with better service. Use of preventative oral health measures such as fluoride tablets and varnish were low and associated with higher risk of decay. This suggested they were being used to treat rather than prevent disease.

Further information

The Cleft Care UK study: parts 1-6 Orthodontics and Craniofacial Research 2017; 20, Supplement S2: 1-51. In press June 2017

Centralisation of cleft care in the United Kingdom: results of the Cleft Care UK study. Orthodontics and Craniofacial Research 2015; 18, Supplement S2: 1–62. 

Centralization of services for children born with orofacial clefts in the United kingdom: a cross-sectional survey. The Cleft Palate-Craniofacial Journal 2014;51: e102-9. 

Clinical Standards Advisory Group. Cleft Lip and/or Palate, HSMO, ISBN 0-11-322103-7 London, 1998. 

Funding

This publication presents independent research commissioned by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research scheme (RP- PG- 0707- 10034). The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.