The LOG-after French Childhood Cancer Cohort : acute to long-term follow-up. Methodology of the LOG-after cohort, a database to help in the medium- and long-term care of patients. A GOCE study (Grand Ouest Cancers de l’Enfant, Childhood Cancer, West France) plus other French hospitals

Abstract Background Treatment summary and a personalized survivorship care plan based on internationally approved, organ-specific follow-up care recommendations are essential to preserve health and quality of life. Cohorts have made significant contributions to the understanding of early mortality, somatic late complications, and psychosocial outcomes among childhood cancer survivors. New treatment protocols have the goal to increase the cure and reduce the potential risk and severity of late effects. Therefore, pursue such databases with modern treatments are necessary. Construction and content In the GOCE network, in a participative approach, we developed the LOG-after medical tool, on which health data are registered and can be extracted for analysis. This tool is hosted on a web server, which is health data host certified and several interfaces have been developed depending on the user’s profile. Here we present the construction of the software, the results of the feasibility/satisfaction study with a descriptive analysis. Utility and discussion The database contains data of 2558 patients of which for 1702, a tumor bank exists (66.54%). The average treatment start period was April 2015 (ranging from December 1967 to November 2022; 118 patients were treated before 2012 and registered retrospectively when seen in long-term foloow-up consultations or for another cancer since November 2021). When questioned about their satisfaction of the tool, all health care professionals were satisfied. Access to the patient interface is currently open to 124 former patients. This was initially offered to 30 former patients, older than 15 years, affected by the disease within the last 5 years, who agreed to test it. All patients were satisfied with the tool, with an interest to test it in the long-term. Some of them testified to a decrease in mental load, as this verbatim : "I feel lighter. I allow myself to forget, I know I will get a notification when the time comes." Conclusions Freely available to all users, LOG-after enables (1) help with suggesting a personalized survivorship care plan for middle or long-term follow-up, (2) link with general practitioner, (3) empowerment of the patient, (5) an export of health data for analysis. Database URL for presentation: https://youtu.be/2Ga64iausJE