Study Aims to Improve Transition to Adult Care for Young People Born with Cleft Lip and Palate
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 routinely do better or worse than others.
Yvonne Wren, Professor of Speech and Communication at the Bristol Dental School, Chief Investigator of the Cleft Collective and lead for the project, said: “Individuals born with cleft lip and/or palate are well supported in the UK as they progress through childhood. But some young adults have told us they find it challenging when they move from the regular monitoring they received as children, to adulthood where they are responsible for their own care.
“At the moment, we don’t know enough about who is affected in this way and have limited information to guide us in terms of what support is needed. This research will help us understand more about who needs ongoing support and what their needs are. We will use this information to determine how to help those who need it and enable them to achieve best outcomes.”
There are four research projects within Cleft@18-20. Clinics will be run with the 16 regional 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 cleft centres will be asked what they consider represents good results of cleft care as young people affected reach adulthood.
Finally, 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.
A panel of young adults born with cleft lip and/or palate from a range of backgrounds will be recruited to help oversee Cleft@18-20 and work with a larger group to help with plans for the interviews and the development of the support tool.
The research study ‘Improving outcomes by addressing variation in unmet needs at transition to adult care for young people born with cleft lip and palate – Cleft@18-20’ has been awarded funding of £1,978,946.79 by the National Institute for Health and Care Research (NIHR). The five-year project, led by Professor Yvonne Wren, will begin in April 2024.