Cleft Lip and Palate Top 10

  1. What types of psychological intervention (individual therapy, community or school based) and at what time (from diagnosis to adulthood) are most helpful for patients with a cleft of the lip and/or palate and their families?
  2. What are the educational, employment and personal (eg relationships) outcomes for individuals with a cleft of the lip and/or palate during childhood, adolescence and in the long term?
  3. What is the best protocol for primary repair of both the lip and palate, including technique/timing and sequence?
  4. In individuals with a cleft of the lip and/or palate when is the most effective age to begin speech therapy?
  5. What is the best treatment for otitis media with effusion (glue ear) in individuals with a cleft of the lip and/or palate?
  6. Can stem cells be used to improve palate repair (both primary and secondary)?
  7. What interventions would enhance the educational outcomes for children with a cleft of the lip and/or palate?
  8. What is the impact of having a baby born with a cleft of the lip and/or palate on maternal/child attachment?
  9. What is the best way to manage infants with a cleft of the lip and/or palate undergoing primary surgery before, during and after hospital Eg. Fluids, pain control, antibiotics, probiotics, arm splints, feeding practices?
  10. What are the genetic and environmental causes of clefts of the lip and/or palate?
  11. How can we improve the diagnosis of cleft palate (without cleft lip)?
  12. What is the best way to prevent tooth decay in children with a cleft of the lip and/or palate?

The remaining questions discussed at the workshop were (in no order of priority):

  • For infants born with cleft lip/palate what is the most effective care pathway for promoting mother/infant bonding?
  • How can reflux be treated best in babies with cleft lip/palate?
  • In individuals with cleft lip/palate what is the most effective speech therapy to eliminate cleft type speech characteristics?
  • What are the factors that predict the psychological outcomes for individuals with cleft lip/palate?
  • What can be done to improve the experience of families of a baby with cleft lip/palate at time of birth in hospital?
  • What can be done to prevent cleft lip/palate?
  • What exposures pre and during pregnancy increase the risk of having a baby with a cleft?
  • What is the best feeding method for babies with cleft lip/palate, including those with syndromes (including breast feeding, nasogastric tubes and weaning times)?
  • What is the heritability of cleft lip/palate?
  • What is the impact of an antenatal diagnosis of cleft lip/palate on the mother, child and the family?
  • What is the impact of parenting approach on the outcomes for children with cleft lip/palate?
  • What is the most effective intervention for children with cleft lip/palate to minimise the impact of bullying?
  • What surgical outcomes are important to patients with a cleft lip/palate and are they met?

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To see more about the uncertainties identified for Cleft Lip and Palate see the document below