A large proportion of rare immuno-hematological diseases diagnosed during childhood justify a transfer of care from the paediatric sector to the adult sector. This change of team constitutes a worrying risk period: destabilisation, non-observance of treatments or surveillance examinations, loss of sight of the patient, relapses or late-seen relapses.
The challenges for patients and care network partners are to maintain continuity of care and to support each patient’s life projects in a personalised way, taking into account the constraints of the disease and treatment.
The centres of reference for rare diseases that are members of the MaRIH network are therefore interested in the possibility of implementing new tools to facilitate this transition. At the end of 2016, a survey of doctors, patients and relatives was carried out in collaboration with patient associations to assess the current state of knowledge, needs, weaknesses and strengths of this transition.
The analysis of these results led to the implementation of a new tool: the personalized transition form.
This sheet allows the information in the medical report to be completed with personalised information filled in by the paediatrician, the patient and his family. You can fill it in in consultation with the paediatrician and send it to your first appointment with the doctor in the adult department.
Do not hesitate to give us your opinion on this form, by email at firstname.lastname@example.org.