Research could help young people born with cleft lip and palate achieve best outcomes when moving to adult care

Cleft lip and/or palate is a lifelong condition affecting one in 700 births. A new research programme, led by the University of Bristol and thanks to funding of nearly £2 million by the National Institute for Health and Care Research (NIHR), will investigate how ethnicity, sex, socio-economic status, health literacy and geography affect outcomes for young adults born with a cleft. The findings will establish how to address this 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 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.

Further information

About the Cleft Collective
The Cleft Collective cohort study is also led by Prof Yvonne Wren. The team behind this study are building a dataset which can be used by researchers across the globe to investigate the biological and environmental causes of cleft, the best treatments for cleft and the impact of cleft on those affected and their families. To date, the Cleft Collective has data from over 11,000 participants and is one of the largest studies of cleft lip and palate in the world.

In the future data from the Cleft Collective will help answer the three key questions that families ask:

  • What has caused my child’s cleft?
  • What are the best treatments for my child?
  • Will my child be OK (both now and in the longer term)?

About the National Institute for Health and Care Research (NIHR)
The mission of the National Institute for Health and Care Research (NIHR) is to improve the health and wealth of the nation through research. We do this by:

  • Funding high quality, timely research that benefits the NHS, public health and social care;
  • Investing in world-class expertise, facilities and a skilled delivery workforce to translate discoveries into improved treatments and services;
  • Partnering with patients, service users, carers and communities, improving the relevance, quality and impact of our research;
  • Attracting, training and supporting the best researchers to tackle complex health and social care challenges;
  • Collaborating with other public funders, charities and industry to help shape a cohesive and globally competitive research system;
  • Funding applied global health research and training to meet the needs of the poorest people in low and middle income countries.

NIHR is funded by the Department of Health and Social Care. Its work in low and middle income countries is principally funded through UK Aid from the UK government.

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