Cleft@18-23

Improving outcomes by addressing variation in unmet needs at transition to adult care for young people born with cleft lip and palate (Cleft@18-23) 

Summary

Aim To understand the needs of young adults with cleft lip and/or palate when they move from child to adult health services and to develop a tool to help them address these needs. Background Cleft lip and/or palate is a lifelong condition affecting 1 in 700 births. Young adults with cleft lip and/or palate tell us that they find it difficult when they move from the regular monitoring and parental support involved in child services, to adult services where they are responsible for their own care. They have ongoing needs but do not feel equipped to meet them. There is also concern that this affects some individuals more than others, with those from non-white and lower income groups more affected. To date, no large-scale information has been collected to tell us about this. Design and methods used Our programme consists of four research projects. In the first, we will run clinics with the 16 regional cleft centres across the UK to determine the needs of young adults with cleft lip and/or palate relating to their appearance, speech, eating and drinking, hearing, teeth, well-being, quality of life and education. We will use this information to report on the range of needs and how these vary for different groups based on characteristics such as ethnicity, household income, sex and gender and geographical location. In the second project, we will interview young adults with cleft lip and/or palate to understand more about their needs and what would help them. In the third project, we will ask the young adults and also professionals who work in regional cleft centres what they think are the most important needs. We will also ask what could be considered to be good results of cleft care throughout childhood and adolescence. Finally, we will work together to develop and try out a new support tool which will be designed to help young adults access specialist care when they need it and also to self-manage their needs when they can. Patient and Public Involvement Young adults with cleft lip and/or palate helped determine the aims of this research and have contributed to the plans described. We will recruit a panel of young adults born with cleft lip and/or palate from a range of backgrounds to help oversee the research and will work with a larger group to inform the plans for the interviews and the development of the support tool. Dissemination We will publish academic papers and present at conferences to reach people who can influence cleft care. We will also use videos and animations to make the findings of this research available to participants and the wider cleft community.

Further Information

https://www.fundingawards.nihr.ac.uk/award/NIHR205006