Core Statements

The transition process should always be considered in the context of the family structure and must include the personal needs and developmental requirements of the family (e.g., navigating health insurance, teenage pregnancy and geographical changes due to college and/or employment).

The patient (depending on age and maturity) and their parents/guardians are full partners and should be involved in the entire treatment and transition process.

From the onset of puberty at the latest, adolescents with SCD should be encouraged to develop essential skills to manage their disease independently.

The potential risks and consequences of not following recommendations/therapies should be known.

Patients and parents/caregivers should have a good understanding of the disease. They should have learned how to recognize and manage signs, symptoms and associated complications in patient and family training sessions. Training sessions need to be repeated at regular intervals to discuss the specifics of the different ages, repeat what is known and discuss new medical developments as appropriate.

In case of presentation in an outpatient clinic where the patient is unknown, he/she needs an emergency card in which the diagnosis, useful initial measures and emergency interventions are noted.