Optimal transitions from paediatric to adult care
Sickle cell disease is a life-threatening inherited blood condition that, despite being a rare disease, is becoming more common.1 2 With more people living into adulthood with sickle cell disease, they will undergo a transition from paediatric to adult care.2 3
Experiences of the transition vary across and within countries in Europe.1 Recognising this, the Sickle Cell Transitions Policy Lab is working to drive health system change and improve outcomes for people living with sickle cell disease during the transition from paediatric to adult care.
To learn more about sickle cell disease, please visit our partners’ websites:
What is the transition from paediatric to adult care?
Young people with rare conditions such as sickle cell disease undergo a transition from paediatric to adult care.
This is a critical period goes alongside the transfer, and is defined as the “Purposeful, gradual, planned process of transferring a young person’s healthcare from a child-centred to an adult orientated care setting that comprehensively addresses the medical, psychosocial, educational and vocational needs of that young person”.3
Across Europe, young people’s experiences of the transition vary 1
Poor transitions can lead to long-term health complications, poor quality of life and increased risk of death.4 5 Optimal transition experiences offer young people a seamless, coordinated and compassionate healthcare journey that supports their physical and mental health6 7
Manu Pereira, M., Colombatti, R., Alvarez, F., Bartolucci, P., Bento, C., & Brunetta, A. (2023). Sickle cell disease landscape and challenges in the EU: the ERNEuroBloodNet perspective. Lancet Haematol, 10(8). doi: 10.1016/S2352-3026(23)00182-5.
Colombatti, R., & Sainati, L. (2016). Management of Children With Sickle Cell Disease in Europe: Current Situation and Future Perspectives. EMJ, 4(1). doi:10.33590/emjhematol/10310534.
National Confidential Enquiry into Patient Outcome and Death (NCEPOD). (2023). The Inbetweeners: Transitioning young people with long-term conditions. NCEPOD. https://www.ncepod.org.uk/2023transition/The%20Inbetweeners_summary%20report.pdf. Accessed January 2026.
Saulsberry, A. C., Porter, J. S., & Hankins, J. S. (2019). A program of transition to adult care for sickle cell disease. Hematology Am Soc Hematol Educ Program, 2019(1), 496–504.
Bemrich-Stolz, C. J., Halancych, J. H., Howard, T. H., Hilliard, L. M., & Lebensburger, J. D. (2015). Exploring Adult Care Experiences and Barriers to Transition in Adult Patients with Sickle Cell Disease. Int J Hematol Ther, 1(1).
GotTransition.org. (n.d.). Got transitionR – Six core elements of Health Care TransitionTM. https://www.gottransition.org/six-core-elements/. Accessed January 2026.
National Institute for Health and Care Excellence (NICE). (2023). Transition from children’s to adult’s services. Quality Standard QS140.
https://www.nice.org.uk/guidance/qs140/chapter/Quality-statement-2-Coordinated-transition-plan. Accessed January 2026.
The Charter for optimal care transitions
The Charter defines an optimal transition that all people living with sickle cell disease should experience, wherever they live, and outlines the essential steps to deliver holistic, coordinated and continuous care.
It is a call to action for policy and decision-makers across Europe, calling for robust policies at the EU and national levels to:
- Accurately represent the patient experience across the sickle cell disease care transition
- Drive sustainable health system change which directly improves health outcomes and quality of life
- Share best practice across Europe
The Charter is available in English, French, Italian and Spanish.
Pledge your support
All young people living with sickle cell disease deserve to experience a smooth and person-centred transition with appropriate planning and pre-transition preparation,
teams that stretch beyond clinical care and ongoing progress monitoring and tailored health plans.
Your support helps raise the profile of transition as a major policy and health issue in sickle cell disease.
Sign the pledge and help implement the recommendations set out in our Charter.
Sign The PledgeTogether, we can shape policy, change practice and create accountability at all levels of health systems across Europe.