Objective: The survival rate of children treated for cancer is currently about 80% at 5 years and we estimate that about 50,000 adults in France have survived childhood cancer. In 2011, there was a call for projects relating to long-term follow-up (LTFU), which led to several studies being conducted. Five years later, we sent a questionnaire to present LTFU in France and describe its strengths and weaknesses and to establish appropriate steps that should be taken.
Methods: A questionnaire was sent by email to all the members of the French Society of Childhood Cancers in spring 2016. The study involved 44 centres/hospitals with a Paediatric Oncology Department.
Results: 54 answers were analysed, provided by 31/44 (70%) centres working together with the French Society of Childhood Cancers. Screening is the main objective of LTFU care (90%). The main difficulties that arose were: lack of sufficient time to devote to this activity (57%), difficulties contacting adult childhood cancer survivors (aCCSs) (26%), aCCSs who ultimately did not show up to the consultation (19%), cost (15%), and lack of organization (13%). Seven LTFU programmes were identified: two regional organizations (Rhône Alpes and Grand Ouest), four centre-size organizations, and one national study (involving 15 Haematology Centres) relating to Child and Adolescent Leukaemia.
Conclusion: LTFU is a major concern for French centres specialized in paediatric oncology. Organization is not well defined and difficulties still arise (Who are the best care providers? What frequency of care is most appropriate? etc.). Advances in knowledge: LTFU focused on health problems (physical, psychological, social, economic issues) that affect CCSs is needed to ensure that these patients regain the most optimal physical and emotional health possible. Practitioners suggest different ways to improve LTFU, such as national co-operation with Epidemiology Registers to promote homogenous LTFU care.