Female Sex, Bilateral Disease, Age Below 3 Years, and Apprehension for Enucleation Contribute to Treatment Abandonment in Retinoblastoma

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Treatment abandonment is a major obstacle for treating retinoblastoma in developing countries. The aim was to evaluate plausible causes, outcome, and rate of treatment abandonment in patients with retinoblastoma. The study was retrospective and conducted in a University hospital in North-India. Two cohorts of patients were studied. One was a larger cohort (n=602) of all patients with retinoblastoma in the institution from 2000 to 2014. Limited variables (age, sex, and laterality) were examined in this cohort due to incomplete data/lack of contact. A detailed interview was conducted with contactable caregivers in a smaller cohort (n=104). Noncompliance was observed in 170/602 (28%) patients. Patients below 3 years were more likely to be noncompliant (65.1%), compared with older patients (34.9%) (P=0.003). Compliance was greater among male individuals (64%) than in female individuals (36%) (P=0.017) and in those with unilateral disease (72%) compared with those who had bilateral disease (28%) (P=0.009). Apprehension for enucleation (64% vs. 8%, P=0.0001) and difficulty in attending outpatient services of different departments (61.4% vs. 13.3%, P=0.003) for multimodality treatment were expressed more frequently in the noncompliant than in the compliant group, respectively. The mortality in compliant and noncompliant patients was 7% and 68%, respectively (P=0.0001). The rate of treatment abandonment in 602 patients over a 15-year period was a sizable 28%. The factors contributing to noncompliance included female sex, bilateral disease, age below 3 years, apprehension for enucleation, and difficulty in attending outpatient services of different departments.

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