Patients Long-Term Follow Up in Belgium

Today, in Belgium, 87% children with cancer are alive five years after their initial diagnosis. However, the treatments leading to their remission are exposing them to increased co-morbidities risk and premature mortality (up to 90% patients).

Many young survivors do not even realise the situation they are in, do not know which treatments they have been administered. Besides, in Belgium, there is no organised specific long-term follow-up plan that is adapted to their medical history. That type of medical consultation, which oftentimes needs to be much longer than a “standard” 20-minutes consultation, is not specifically reimbursed.

4 867 new cases concerning patients from 0 to 19 years of age have been recorded in the Cancer Register between 2004 and 2016. For these patients, the current data recorded are clearly insufficient (diagnosis date, type of paediatric cancer, information on 5-years survival and in some cases, relapses).

The Long-Term Follow—Up project will allow to complete the data and gather it into one single national standardised database with clinical information available for these patients: type of treatment received, relapse, secondary cancers, acute toxicity. Those data will be added to those of patients who have been diagnosed since 2017.

As a result, the aim of the project is to:

- Improve our understanding of long-term side effects caused by the treatments received by young patients

- Enable the Belgian paediatric oncology units to contribute to the European research effort by enriching European databases

- Compare the survival and long-term toxicity figures affecting the Belgian patients with that of patients from other European countries

- To provide each patient with a summary of the treatment they received and a tailor-made follow-up plan; as a result, those patients will be able to take care of their own health and not just suffer from those long-term side effects by, where possible, preventing or reducing them

Advocate with the Minister of Health the set-up of a specific financing for the “long-term follow-up” consultations.