Trial Information

Quality of Life in Children Cured of Retinoblastoma

Retinoblastoma is the most common eye tumor of children. It can present in one eye
(unilateral) or in both eyes (bilateral). The bilateral form is always hereditary.

Retinoblastoma is a highly curable tumor. Using a combination of surgery, chemotherapy,
radiation and local treatment modalities to the eye, over 98% of patients are cured. This
means that most children diagnosed with retinoblastoma will become long-term survivors.

The use of surgery (taking out one eye), chemotherapy, and radiation may be associated with
long term side-effects, some of which may have significant impact on the quality of life of
the child. In addition, in case where the disease is hereditary, additional psychological
issues arise.

The aim of our study is to assess, in a comprehensive and standardized fashion, the long
term quality of life in children who were treated for retinoblastoma, and who are currently
alive and well.

The assessment will include the use of questionnaires that assess quality of life, as well
as participation in age-appropriate activities.

Each child, and his/her parent, will be interviewed and the questionnaires completed. The
process will take about one hour for each child. No risk or discomfort to the child is
involved.