Long-term follow-up care for former cancer patients through education about long-term effects and tracking the prevalence of secondary diseases, including prospective recording in a database

Long-term follow-up care after surviving cancer is an important part of healthcare, as many former patients may still develop long-term health complications years later. These include, for example, cardiovascular diseases, hormonal imbalances, secondary tumors, or psychological distress. These risks are often underestimated, especially once regular follow-up care (at least 5 years after the end of treatment) has concluded. The LE-Na study addresses this very issue and aims to help close this gap in care.

The goal of the LE-Na study is to introduce, evaluate, and expand follow-up care structures for children and adolescents who have survived cancer and are now adults. To this end, a specialized follow-up care network is being established at over twelve German sites as part of the study. There, former patients will receive structured medical and psychosocial follow-up care in the form of questionnaires and interviews. The goal is to identify individual health risks and assess satisfaction with the services provided. This will pave the way for establishing standardized follow-up care structures nationwide that are precisely tailored to the needs of those affected. The study will follow participants over several years. Among other things, it will assess quality of life, the occurrence of long-term effects, and the effectiveness of psychosocial screening (early detection).

Adults who had cancer during childhood or adolescence are eligible to participate if their regular oncological follow-up care has already been completed, at least six months have passed since the end of chemotherapy or radiation therapy (or 12 months after a stem cell transplant), they are not currently receiving cancer treatment, and they have a good command of the German language. Individuals who have already been cared for in specialized follow-up clinics or who are unable to give informed consent are excluded. Ongoing oncological treatment is also an exclusion criterion.