Cleft @18-23 is a new research programme which will investigate outcomes at the end of routine care for young adults born with a cleft of the lip or palate or both. We want to know if outcomes vary for individuals according to their ethnicity, sex, socio-economic status, health literacy and geography. The research programme is led by University Hospitals Bristol and Weston NHS Trust and the University of Bristol and is funded by the National Institute for Health and Care Research (NIHR), The research will also determine how we can address any identified variation and ensure that all young adults have the same chance of achieving the best possible outcomes.

Children born with a cleft will often have multiple surgeries as well as other treatments from speech and language therapists, dentists, specialist nurses, audiologists and psychologists as they grow and develop. As they reach adulthood, individuals vary in their appearance, their speech and their wellbeing but there is limited information about how they vary. Currently, it is not known if some groups do better or worse than others.

There are four research projects within Cleft@18-23. In the first project, research clinics will be take place at the 16 regional NHS cleft centres across the UK to find out how well young adults with cleft lip and/or palate are doing in relation to their appearance, speech, eating and drinking, hearing, teeth, wellbeing, quality of life and education. Researchers will use this information to report on any needs which are identified and how these vary for different groups based on ethnicity, household income, sex and gender and geographical location.

In the second project, the research team will interview young adults with cleft lip and/or palate to understand more about their perspective on their outcomes and what would help them.

In the third project, young adults and professionals who work in regional NHS cleft centres will be asked what they consider are good results of cleft care as young people affected reach adulthood.

Finally, in the fourth project, researchers will work together with young adults to develop and try out a new support tool which will be designed to help them self-manage their needs when they can or access specialist care.