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

Memorial Sloan Kettering Cancer Center (MSK)

Status: Invitation-only

Conditions: Survivors of Unilateral Retinoblastoma

Treatments: Behavioral: BASC-3 survey; Behavioral: PROMIS survey

Study type: Observational

Funder types: Other

Identifiers

NCT03662776

18-397

Details and patient eligibility

About

The purpose of this study is to find out about the quality of life and health in patients who had retinoblastoma in one eye (unilateral retinoblastoma), who either received treatment with chemotherapy injected directly into an artery leading to the eye (intra-arterial chemotherapy) or removal of the eye (enucleation). By quality of life, the investigators mean how the participants are feeling about being satisfied with things in their life, including, physical health, emotional health, and their ability to carry out daily activities. The investigators want to see if either treatment option would affect quality of life differently. The investigators hope that this information will help us provide better care to future children with retinoblastoma and better follow-up care for survivors of retinoblastoma.

Enrollment: 120 estimated patients

Sex: All

Ages: 8 to 17 years old

Volunteers: No Healthy Volunteers

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

Trial design

120 participants in 2 patient groups

retinoblastoma survivors treated with enucleation

Description:

MSK will contact all families of 1-year survivors of unilateral retinoblastoma treated with enucleation or intra-arterial chemotherapy at MSK and TCH between 2006 or later for completion of validated questionnaires integrating the BASC-3 and PROMIS surveys. The survey may be administered in-person during clinic or by mail, based upon participant preference.

Treatment:

Behavioral: PROMIS survey

Behavioral: BASC-3 survey

retinoblastoma survivors treated with intra-arteria chemo

Description:

MSK will contact all families of 1-year survivors of unilateral retinoblastoma treated with enucleation or intra-arterial chemotherapy at MSK and TCH between 2006 or later for completion of validated questionnaires integrating the BASC-3 and PROMIS surveys. The survey may be administered in-person during clinic or by mail, based upon participant preference.

Treatment:

Behavioral: PROMIS survey

Behavioral: BASC-3 survey