Effect of Treatment Modality on Psychosocial Functioning of Survivors of Unilateral Retinoblastoma

Launched by MEMORIAL SLOAN KETTERING CANCER CENTER · Sep 6, 2018

Keywords

ClinConnect Summary

This study is observing how survivors of unilateral retinoblastoma (cancer in one eye) are doing in daily life after different treatments. Researchers want to know if eye-sparing treatment with targeted chemotherapy (intra-arterial chemotherapy) or removal of the eye (enucleation) affects long-term quality of life, social and emotional well-being, and behavior. They will track these topics over about two years using standardized questionnaires (BASC-3 and PROMIS). The goal is to understand whether one treatment leads to different outcomes in life satisfaction, physical and emotional health, or daily functioning, to help improve future care.

Who can participate? Children ages 8 to 17 who had unilateral retinoblastoma, were treated since 2006, and are at least one year past all cancer therapy. They must speak English or Spanish and have had either enucleation or intra-arterial chemotherapy (but not both). Parents will also complete surveys for younger participants. The study is conducted at Memorial Sloan Kettering Cancer Center in New York and Texas Children’s Hospital in Houston, and participation involves completing BASC-3 and PROMIS questionnaires—either in clinic or by mail. This is an observational study (no new treatments are given), sponsored by MSK, with about 120 participants enrolled, and results are not yet available (study ongoing with completion expected in 2026).

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Ability to speak and understand English or Spanish
• • Diagnosis of unilateral retinoblastoma at any age, confirmed by the enrolling institution
• • Treatment of retinoblastoma between 2006 or later
• • Patients must between the age of 8-17 years old
• • At least 1 year since completion of all cancer-directed therapy
• • Treatment with enucleation of the affected eye or intra-arterial chemotherapy
• Parent of patient:
• • Ability to speak and understand English or Spanish
• • Ability to confirm that he or she is the parent of a child treated for unilateral retinoblastoma who meets the eligibility criteria listed above
• • Ability to provide informed consent
• Exclusion Criteria:
• • Patients, or parents of patients, treated with both enucleation and intra-arterial chemotherapy are not eligible