[Ethical issues in long-term follow-up of pediatric cancers]

Advances in knowledge about late effects of childhood cancer treatments have led to implement long-term follow-up care. This raises the question of the ethical issues involved in providing information to survivors, and in proposals for long-term follow-up consultations.

We conducted a two-part qualitative study: (1) A semi-directive interview survey to explore survivors' experiences of medical proposals for follow-up consultations; (2) The creation of a multidisciplinary ethical reflection group aimed at identifying the ethical issues associated with the systematization of follow-up care.

The study identified five key issues related to medical requests and the implementation of follow-up care: (1) The needs and expectations of former patients regarding information; (2) The temporality of after-cancer; (3) The ambivalence of categorizations in light of the diversity of post-cancer experiences; (4) The role of various professionals and the responsibility for follow-up; (5) The plurality of needs and proposed approaches.

In light of these issues, five areas of concern emerge: (1) Provide information about a risk in life after the disease? (2) When should follow-up be proposed? (3) The category of "former patients": relevant or problematic? (4) Who can or should assume the role and responsibility for follow-up? (5) The diversity of follow-up approaches: balancing standardization with reliance on informal networks.