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

Bhargav, Anish, MD*; Singh, Usha, MS; Trehan, Amita, MD*; Zadeng, Zoramathara, MS; Bansal, Deepak, MD, DNB, MAMS*

Journal of Pediatric Hematology/Oncology: July 2017 - Volume 39 - Issue 5 - p e249–e253
doi: 10.1097/MPH.0000000000000856
Online Articles: Original Articles

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.

*Hematology-Oncology Unit, Department of Pediatrics, Advanced Pediatrics Center

Department of Ophthalmology, Advanced Eye Centre, Postgraduate Institute of Medical Education and Research, Chandigarh, India

The authors declare no conflict of interest.

Reprints: Deepak Bansal, MD, DNB, MAMS, Hematology-Oncology Unit, Department of Pediatrics, Advanced Pediatrics Center, Postgraduate Institute of Medical Education and Research, Chandigarh 160 012, India (e-mail: deepakbansaldr@gmail.com).

Received September 10, 2016

Accepted April 17, 2017

Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.