Improving outcomes by addressing variation in unmet needs at transition to adult care for young people born with cleft lip and palate(Short title: Cleft@20)

Research question: What variations exist in unmet needs in young adults born with cleft lip and/or palate (YAwCL/P) and how should these be addressed? Background: 1 in 700 people are born with cleft lip and/or palate. While primary surgery takes place in infancy, this condition has lifelong impacts. YAwC/P have told us they find it difficult to access care and support for unmet needs affecting appearance, speech, wellbeing and other areas once they transition from routine care in childhood to on-demand support in adulthood. Aim and objectives: The aim is to investigate unmet needs through these objectives: 1. i) To describe any variation in clinical, psychosocial, educational and patient-reported unmet needs at transition to adult care ii) To identify any associations between variations in unmet needs and specific equality, diversity and inclusion characteristics 2. To understand the patients views of their experiences at transition to inform the development of an intervention to support YAwCL/P at transition to adult services 3. To achieve stakeholder consensus on what constitutes a good outcome of cleft care at the point of transition, and on the priorities for addressing unmet needs that can be targeted in an intervention 4. To co-design and carry out a preliminary evaluation of an intervention to support YAwCL/P at transition Methods: The objectives will be met in four mixed-methods work packages: 1. Establishment of research clinics to facilitate collection of data on unmet needs in YAwCL/P 2. Exploration of experiences of care at transition by YAwCL/P using qualitative methods 3. Modified Delphi study to establish consensus on outcomes and priorities 4. Co-design and qualitative evaluation of the intervention Timeline for delivery: Knowledge of at risk groups (who is affected and how) will be available by year four. The proposed intervention, which is hypothesised will comprise self-management strategies, a patient concerns inventory and facilitated access to specialist care, and results of preliminary testing will be available at the end of the Programme. Follow-on work will lead to a full evaluation of the effectiveness and cost-effectiveness of the intervention. Anticipated impact: -Improved access to specialist care from relevant members of the cleft multidisciplinary team for all YAwCL/P, within existing resource, with guidance and support to enable patient-identified needs to be met -Reduction in wasted appointments with generic health services -Development of transition plans as routine, with support for those at risk of high unmet needs -More effective partnership between patients and clinical teams -Improved self-management and independence in YAwCL/P -Reduction in Multiple Long-Term Conditions experienced by this population through adulthood -A consensus-derived set of defined good outcomes for cleft care at the point of transition to adult services that will inform future standards of care and audit Dissemination: We will disseminate through academic routes (peer-reviewed journals, conferences); workshops with clinicians, YAwCL/P and parents of children born with clefts; and a large end-of-study dissemination event. NHS cleft care is a centralised service and this will help facilitate both delivery of the Programme and the process for implementation of recommendations arising from the research.