Optimising outcomes for young people with cleft lip and/or palate in adolescence

Summary

Many children born with a cleft lip and/or palate have persistent problems affecting their appearance, speech, teeth and well-being. Research led by Bristol is helping to improve the way we deliver care to these children to reduce the number who have these problems. To date, the research has focused on younger children up to age 5. However, cleft is a lifelong condition and children continue to receive treatment up to age 20 and beyond.

We need to find out what challenges young people born with cleft are facing as they approach adulthood, as this is likely to be very different to their needs at age 5. We also need to understand what treatments lead to better outcomes at this age, what ongoing services are needed, and which children are most at risk of experiencing difficulties in adolescence.

In this project, we will work with clinicians from cleft care centres across the UK and people affected by cleft to determine what information needs to be collected in a dedicated clinic for adolescents born with clefts. We will also determine how we should collect the data and the logistics of running such a clinic. In a follow-on study, we will begin running the clinics and collecting data which we can use to determine which young people born with cleft do well and why. With this information, we can plan services that will maximise outcomes for this at-risk population and ensure fewer children born with clefts are disadvantaged in adolescence and adult life.