AELKI - Development and evaluation of a risk-adapted, multidisciplinary, guideline-based transition and (long-term) aftercare programme for children and adolescents with cancer

In Germany, around 2,100 children and adolescents up to the age of 18 are diagnosed with cancer every year. Despite good long-term survival rates of over 80 per cent, many of these patients are affected by late effects of the disease and therapy. These can affect different organ systems and range from mild and easily treatable limitations to life-threatening complications.

Many children and adolescents with cancer do not receive long-term follow-up care during and especially after oncological aftercare. Regular follow-ups in line with the recommendations of therapy studies and the follow-up care guidelines is well accepted by parents and children, especially in the first five years after therapy; its focus is on recurrence follow-up care. However, follow-up care of up to ten years is not widely recognised. This is where the AELKI project comes in.

The planned study aims to develop a guideline-based, risk-adapted and multidisciplinary long-term aftercare programme for children and adolescents up to 18 years. Existing psychosocial, medical aftercare and transition guidelines will be equally taken into account in order to counteract the lower perception of long-term aftercare.

Based on an individual risk profile (corresponding to the oncological disease and its therapy as well as previous surveys), diagnostic and therapeutic measures are taken and digital information provided in line with requirements in order to improve care efficiency.

Improved care creates an important basis for sensitising young patients to the need for lifelong, risk-adapted long-term follow-up care and their individual medical and psychosocial health risks.