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Cleft@18-23 study research clinics: a protocol for a multicentre observational study across UK cleft centres to
Abhaya Vadlamudi1, Stephanie van Eeden2, Jenna Spry3
1University of Bristol, Bristol, UK a.vadlamudi@bristol.ac.uk.
Insights
This study investigates variations in outcomes for young adults with cleft lip and/or palate (CL/P) as they complete care. Understanding these differences will help optimize lifelong CL/P care across the UK.
Area of Science:
- Craniofacial anomalies
- Public health
- Patient outcomes
Background:
- Cleft lip and/or palate (CL/P) affects 1 in 700 births, requiring lifelong multidisciplinary care.
- Current outcome data for young adults completing cleft care is inconsistent nationally.
- This variability hinders understanding of care effectiveness and potential disparities.
Purpose of the Study:
- To investigate variations in health and well-being outcomes for young adults with CL/P.
- To identify if outcomes differ based on geographical location, sex, socioeconomic status, or ethnicity.
- To inform the development of optimized, equitable CL/P care pathways.
Main Methods:
- Observational study (Cleft@18-23) recruiting 640 participants aged 18-23 across the UK.
- Data collection includes questionnaires, speech samples, hearing screens, medical imaging, and dental assessments.
- Statistical analyses will explore outcome variations across diverse demographic groups.
Main Results:
- Data collection is ongoing; results will be analyzed post-completion.
- The study aims to quantify outcome variations in speech, growth, dental health, and psychosocial well-being.
- Findings will highlight disparities and areas for care improvement.
Conclusions:
- Understanding outcome variations is crucial for ensuring equitable CL/P care.
- This research will provide evidence to enhance care pathways for young adults with CL/P.
- The ultimate goal is to improve lifelong health and well-being for all individuals with CL/P.
Introduction:
Cleft lip and/or palate (CL/P) is a lifelong condition affecting one in 700 births. In the UK, individuals born with CL/P follow a care pathway at specialist regional cleft centres, which includes input from a range of professionals including surgeons, speech and language therapists, cleft specialist nurses, orthodontists, dentists and clinical psychologists. The cleft centres provide care from diagnosis to early adulthood. Individuals born with CL/P are typically discharged from routine care at their cleft centre between the ages of 15 and 25 years.Outcome measures of cleft care are currently gathered at different timepoints across the treatment pathway nationally and include outcomes for speech, growth, dental health and psychosocial well-being. However, there is no consistent reporting of outcomes for young adults when they complete routine care, meaning we do not know whether variation in outcomes exists and what this might look like.This research programme will investigate whether outcomes vary based on factors such as geographical location, biological sex, socioeconomic status or ethnicity. By understanding how outcomes might vary, and the scale and type of variation, we plan to work with young adults born with CL/P and specialist clinicians to develop ways to ensure that everyone born with CL/P in the UK receives the optimum care to meet their needs.
Methods And Analysis:
Cleft@18-23 is an observational study of young adults born with CL/P. Recruitment is planned across all regions of the UK, beginning in April 2025 with research clinics scheduled to run between June 2025 and May 2027. The recruitment target is 640 participants born with CL/P. Participants with all cleft diagnoses, including those with additional syndromic diagnoses, will be eligible for recruitment. We will recruit participants from all ethnic and socioeconomic backgrounds. Data collection will include self-report participant questionnaires, speech samples, a hearing screen, two-dimensional and three-dimensional medical photographs, an intraoral scan and a dental assessment. A range of descriptive and inferential statistical analyses will explore variation in outcomes across different groups.
Ethics And Dissemination:
The Cleft@18-23 study obtained ethical approval from the South West-Frenchay Research Ethics Committee on 26 November 2024 (REC reference: 24/SW/0128). Informed consent will be required for participation. Findings from the Cleft@18-23 study will be disseminated through peer-reviewed publications, conference presentations, newsletters, the study website (https://www.bristol.ac.uk/cleft18-23) and social media.
Trial Registration Number:
ISRCTN34027276.
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