CLEFT@18-23
Research type
Research Study
Full title
Improving outcomes by addressing variation at the end of routine care for young adults born with cleft lip and/or palate
IRAS ID
345805
Contact name
Yvonne Wren
Contact email
Sponsor organisation
University Hospitals Bristol and Weston NHS Foundation Trust (UHBW)
Duration of Study in the UK
4 years, 11 months, 31 days
Research summary
Cleft lip and/or palate is a lifelong condition affecting 1 in 700 babies. Individuals born with cleft lip and/or palate in the UK have multiple operations and support from specialist dentists, speech and language therapists, psychologists and nurses until they are discharged from routine care when they aged between 15- and 25-years-old.
Currently we don’t know what variation there is in outcomes (i.e. how well individuals do in response to different NHS interventions) for this population after they are discharged from routine care. This programme of research will determine whether outcomes vary depending on things like where they live, their biological sex or gender, or their ethnicity. Once we understand how outcomes vary, and the scale and type of variation, we will work with young adults born with cleft lip and/or palate and specialist clinicians to develop ways to ensure that everyone born with a cleft has the same opportunity to do well.
This programme has four research projects (Work Packages 1-4):
1. Research clinics with regional cleft centres across the UK to measure outcomes that are relevant for people born with a cleft such as appearance, speech, dental, well-being and quality of life, and determine how these vary for different groups based on characteristics such as ethnicity, socio-economic status, sex and gender and geographical location.
2. Interviews with young adults born with cleft lip and/or palate to understand how they describe their outcomes and any needs they have identified since being discharged.
3. A ‘consensus-building’ exercise to determine what should be considered a good outcome at the point of discharge from routine care.
4. Development of an intervention to address the variation in outcomes.
We have worked with the patient population to develop these research plans and we will continue to work with them to deliver the research and report the findings.REC name
South West - Frenchay Research Ethics Committee
REC reference
24/SW/0128
Date of REC Opinion
18 Nov 2024
REC opinion
Favourable Opinion