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Cleft Care UK Dissemination Event at Royal College of Surgeons

12 June 2017

A meeting was held on 9th June at the Royal College of Surgeons, London, to disseminate the findings of the Cleft Care UK study. It was hosted in partnership with the Cleft Lip and Palate Association (CLAPA) and the audience comprised a mixture of clinicians, patient representatives and some policy makers. The meeting was addressed by both Derek Alderson- President-elect, Royal College of Surgeons and Sir Bruce Keogh KBE, FRCS, FRCP.

Cleft Care UK (CCUK) was a nationwide cross-sectional survey of five year olds with unilateral cleft lip and palate to evaluate the impact of a centralised, audited multi-disciplinary model of care. Comprehensive data were collected on care and outcomes from 268 children with unilateral cleft lip and palate.  Centralisation had occurred 15 years previously following The Clinical Standards Advisory Group (CSAG) survey of five year olds with cleft lip and/or palate, conducted in the mid-1990s.  CSAG had shown that outcomes across a range of domains (including facial growth and speech) were poor.  Care for children with cleft lip and/or palate is now provided by multi-disciplinary teams working in 11 managed clinical networks as opposed to the 57 centres pre- centralisation.

Funding for the Study was from NIHR Programme Grants for Applied Research Award RP-PG-0707-10034- Evidence based health care for major congenital and acquired problems of the head and neck. PI Andy Ness

Key Findings from the CCUK Study:

  • 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 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.

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