Data collection
Data collection was performed from August 16 to December 31, 2015. The data were collected from patient files and interviews of the parents of former and new patients according to a pre-established questionnaire given to a resource person in each of the centers. Training of investigators was provided at the various sites. The survey sheet had two sections. In the first section, data were collected only once on admission; the collection of data stopped in this section for cases with treatment refusal (chemotherapy and surgery). In the second section, the data was collected several times during the treatment visits while noting all the events that occurred before each cycle of chemotherapy. It was filled out until the end of treatment, or the last visit during the study period, the latest action (if treatment was abandoned), or until death if it had occurred during the study period. For former cases, the files were consulted, and additional information was obtained by contacting the parents by telephone unless they could be met during their follow-up appointment. For new cases (referred during the study period or treatment), the forms were completed during the clinical examination and supplemented by the parents’ interviews.
The following variables were collected: sex, age, nationality, siblings, residence, date of diagnosis, evolutionary form (intraocular or extraocular), acceptance of chemotherapy, acceptance of enucleation, regularity of treatment, reasons for refusal or abandonment of treatment, marital status of the parents, level of education of the parents, the profession of the parents, coverage of care, date of the latest visit, and child’s condition at the latest visit. Coverage of care was considered ”unsecured” if the care was financed by the family, and ”secured” if it was financed by a social solidarity system (mutual fund, social security fund, employer, etc.). We considered the refusal of treatment as the decision of the parents to have no treatment. Abandonment of treatment was defined as the refusal to continue a treatment already started, with the patient missing the appointment at least 4 weeks after the scheduled appointment date. Treatment adherence was defined as acceptance of the proposed treatment and following it to the end.