In 2011-12 there was a big consultation with a wide range of people including patients, their families and carers, and Cleft Team members. This consultation was run by the James Lind Alliance, and aimed to bring different kinds of people affected by cleft together to find out which questions we should be trying to answer through research.
This was a long process which has been used many times to find priorities in other areas of healthcare. The result is usually a top 10 list, but in this case the final result was a top 12 list of unanswered questions about cleft lip and palate care.
This list isn’t supposed to cover everything – it’s just supposed to be a clear summary of shared priorities for research in cleft lip and palate, and it is very useful when putting together a strategy for research in the UK. It’s a fantastic example of how parents, patients, health professionals and researchers all working together can have a positive impact.
The top 12 questions around cleft lip and palate
The top 12 priorities for cleft research as defined by the James Lind Alliance are as follows:
- 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?
- 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?
- What is the best protocol for primary repair [surgery] of both the lip and palate, including technique/timing and sequence?
- In individuals with a cleft of the lip and/or palate when is the most effective age to begin speech therapy?
- What is the best treatment for otitis media with effusion (glue ear) in individuals with a cleft of the lip and/or palate?
- Can stem cells be used to improve palate repair (both primary and secondary)?
- What interventions would enhance the educational outcomes for children with a cleft of the lip and/or palate?
- What is the impact of having a baby born with a cleft of the lip and/or palate on maternal/child attachment?
- 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?
- What are the genetic and environmental causes of clefts of the lip and/or palate?
- How can we improve the diagnosis of cleft palate (without cleft lip)?
- What is the best way to prevent tooth decay in children with a cleft of the lip and/or palate?
There is a great deal of research going on at the moment to help answer some of these questions. Find out more about new projects.