60 to 75 % of the survivors of pediatric oncological-hematological diseases have physical and/or psychosocial sequelae that necessitate lifelong aftercare.
Many survivors do not feel that they are well enough informed about possible sequelae. As a result, awareness of the importance of long-term follow-up is barely raised during healthcare, and some long-term consequences are, therefore, detected too late from the perspective of survivors. For this reason, possible sequelae should be addressed at an early stage on the part of the hospital in terms of age-appropriate education. This information should occur repeatedly in the course of the follow-up, not at the end of the follow-up period.
In the experience of the survivors, in Austria to date there is no transition into the adult medical practice and adult survivors often do not know where to turn to with their sequelae. The children’s hospital is no longer responsible, specialists in adult medicine are not available and GPs usually do not have the necessary expertise. The common result is resignation: “If no one can help me, I have to live with it.” The late onset of late effects is only recognized later or not at all.
The advocacy Survivors Austria, together with the Austrian Childhood Cancer Organisation in cooperation with the Childhood Cancer Organisation for Vienna, Lower Austria and Burgenland, the Division of Pediatric Neuro-Oncology of Vienna General Hospital and St. Anna Children’s Hospital, are conducting a long-term follow-up and transition project termed “ZONE – Centre for Oncological Aftercare of Adults”.
With “ZONE” there will be a competence centre for long-term follow-up and transition that adult survivors of pediatric oncology-hematology diseases can turn to. Survivors will receive psychosocial and medical advice there and be referred to specialists in adult medicine and the psychosocial field if necessary.
Appeal of the survivors: We must continue to be included as a decisive voice in the development of long-term follow-up and transition! We know what we need! Nothing about us without us!