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Optimising the Transition from Paediatric to Adult Care Model for People with Sickle Cell Disease - a UK Multidisciplinary Consensus Statement

Background: To identify barriers and facilitators to the optimal transition of young people with sickle cell disease (SCD) from paediatric into adult services and provide a series of consensus recommendations. Methods: A multidisciplinary consensus meeting was held involving 8 UK experts in the field of SCD, comprising 6 healthcare professionals and 2 charity representatives. The panel discussed best practice case studies and heard from 2 patients and 1 parent who shared their personal experience of the transition process. The panel identified barriers and facilitators to optimising transitional care, which were placed along a notional timeline according to age and ranked by impact, and a series of final recommendations, were agreed. Findings: Barriers and facilitators for the whole patient journey and by age were identified. The barriers broadly included: lack of reliable information available to patients and parents regarding SCD; lack of understanding and knowledge of the condition by healthcare professionals outside of the specialist care teams and poor understanding and knowledge of transition/adolescent needs by healthcare professionals (HCPs) in the wider hospital and health community. The facilitators broadly included: psychological preparedness and expectation setting for adult care; established timelines for transition that are shared and agreed between patients, parents and HCPs; patient access to a designated transition healthcare professional and psychologist. Potential solutions included: the early and continued education of children, young people and their parents; assessment of readiness for transition; active engagement and communication between the adolescent, paediatric and adult services; education of HCPs in SCD, particularly the emergency services; and the need for validated tools to measure transition outcomes. Conclusions: There is a clear need for an early, wellthought- through formal transition plan to ensure young people with SCD and their families retain confidence and engagement with healthcare services. This requires close collaboration and shared decision-making between patients, families and the broader healthcare team, with a named HCP to guide patients through an individualised transition plan, underpinned by peer mentorship and education. This person-centred approach is vital if young people are to remain fully involved in decisions about their future care.


Chakravorty S, Anie KA , Dziwinski S, Kaya B, Green E, Millanaise S, Musumadi L and Stevenson K

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