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.