Participants and Procedure

The Retinoblastoma Survivor Study is a cross-sectional, survey-based study of medical outcomes, psychosocial health, and screening behaviors among adult survivors of retinoblastoma (age 18 years or older at the time of study) previously treated in the New York area. The study design has been previously described (Ford et al., 2015; Friedman et al., 2016). Briefly, eligible participants (N = 987) were sent a survey packet and informed consent by mail, and then contacted by telephone two weeks after mailing to ascertain interest in participation. Interested participants provided consent and then completed the survey by mail or telephone interview; assessments were preferentially completed by telephone regardless of the participant’s visual acuity. Enrollment occurred from March 2008-February 2011. A total of 470 participants completed the survey and included 245 females (52%). Most participants were white (n=427, 90.7%), and non-Hispanic (n=434, 92.3%). Two hundred fifty-two participants (n=252, 53.5%) had a history of bilateral disease; a total of 404 participants (85.9%) had one or both eyes removed and represent the subjects of this report (Table 1). The study was approved by the Memorial Sloan Kettering (MSK) and National Cancer Institute (NCI) Institutional Review Boards/Privacy Boards.

Demographic and treatment characteristics of 470 adult retinoblastoma survivors