Long-term Follow-up of Childhood Cancer Survivors in the Rhône-Alpes and Auvergne Regions of France
Long-term Follow-up of Childhood Cancer Survivors in the Rhône-Alpes and Auvergne Regions of France
Childhood cancers are rare, and today 75% of patients survive them. An estimated one out of
 850 French persons has survived childhood cancer. However, the complications of chemotherapy,
 radiotherapy or surgery can lead to a higher risk of secondary mortality, which the
 literature estimates is at 14%. Regular care has a positive impact on the quality of life and
 health of adults who survived cancer during their childhoods. It aims to detect the potential
 long-lasting effects of cancer and to provide therapeutic education and psychological care.
 Thanks to cancer registries, several countries (USA, Canada, UK, Germany, the Netherlands)
 have developed long-term care structures which function with specially trained adult medicine
 practitioners. There are only two structures in France: the Long-Term Oncology/Hematology
 Follow-Up Clinic, headed by Dr François Pein, in Nantes (France), and the LEA program for the
 follow-up of children treated for leukemia in the PACA-Corse and Lorraine regions of France,
 which began in 2003 and has since been extended to other centers.

 The Rhône-Alpes and Auvergne regions have had childhood cancer registries since 1987; they
 compile about 200 new cases a year. The Rhône-Alpes registry has conducted a preliminary
 trial on children (0-15 years old) diagnosed with cancer between 1987 and 1992. They analyzed
 the correlation between patients' quality of life and the long-term medical effect of cancer
 and treatment, both recorded in patients' medical files and declared by patients. These young
 adults who survived pediatric cancer appear to suffer from and declare many complications,
 although this does not impact their global quality of life much. There is a negative
 correlation between the number of complications (observed or declared) and the global quality
 of life score, but only three types of complications play a significant role (motor function
 complications, auditory complications, and alopecia.) In addition, there is a significant
 mismatch between patients's perceived health (what they say they experience), and the
 information contained in their medical files. These young adults expressed the need for their
 impressions to be better taken into account by health care professionals. This study does not
 assess patients' psychopathological characteristics.
Results will help identify long-term complications, respond to patients' expectations, and
 evaluate the feasibility of conducting such a follow-up in all patients. They should guide
 the choice of the most appropriate tools for care, help assess needs in terms of
 collaboration with adult care staff, and identify potential partners.
Inclusion Criteria:

 -  Having been diagnosed with cancer between 01/01/1987 and 31/12/1992, before age 15,
 and living in Auvergne or Rhône-Alpes (France)

 -  Being a beneficiary of health insurance

 -  Having signed the informed consent form

 Exclusion Criteria:

 -  Having been diagnosed with leukemia as a primary cancer