Causes, outcome and prevention of abandonment in retinoblastoma in India1. Issue 5 (9th January 2013)

• Record Type: Journal Article
• Authors: Kumar, Archana; Moulik, Nirmalya Roy; Mishra, Ravi Krishna; Kumar, Dipak
• Is Part Of: Pediatric blood & cancer. Volume 60:Issue 5(2013:May)
• Page Start: 771
• Page End: 775
• Publication Date: 2013-01-09
• Subjects: Tumors in children -- Periodicals; Blood -- Diseases -- Periodicals; Cancer in children -- Periodicals; 618.92
• DOI: 10.1002/pbc.24454
• Languages: English
• ISSNs: 1545-5009

Abstract

<abstract abstract-type="main" xml:lang="en"> <title>Abstract</title> <sec id="abs1-1" sec-type="section"> <title>Background</title> <p>The high‐cure rates of 90% in retinoblastoma are not replicated in developing countries due to late presentation and poor compliance to treatment. The present study takes a closer look at causes of abandonment of therapy and effectiveness of counselling in reducing abandonment.</p> </sec> <sec id="abs1-2" sec-type="section"> <title>Procedure</title> <p>A retrospective study of children with retinoblastoma registered at our centre from March 2008 through August 2011.</p> </sec> <sec id="abs1-3" sec-type="section"> <title>Results</title> <p>Fifty (49.50%) of 101 children registered for treatment abandoned therapy. Abandonment rates were significantly higher in rural as compared to urban children (<italic>P</italic> = 0.02). There was no significant difference in rate of abandonment between stages or laterality of disease and other socio‐demographic factors. Telephone calls were more effective than letters in tracing patients (31.2% vs. 2.4%). Major reasons cited behind abandonment were financial problems (30%) and unwillingness to enucleate (20%). Of the 12 children who returned and were retreated 6 (50%) died of progressive disease. Nineteen (73%) of those who did not return died at home. Abandonment rates steadily declined from 71.42% in 2008 to 16.66% in 2011 (<italic>P</italic> = 0.01) due to effective pre‐abandonment counselling by a support team under the National Retinoblastoma Registry of India from 2009.</p> </sec> <sec id="abs1-4" sec-type="section"> <title>Conclusions</title> <p>Abandonment rates for children with retinoblastoma continue to be unacceptably high. Rural background, financial constraints and hesitancy to enucleate were important causes behind abandonment. Outcome of patients who abandoned treatment was uniformly dismal. Inclusion of support team and intensified initial counselling helped in improving compliance. Pediatr Blood Cancer 2013; 60: 771–775. © 2013 Wiley Periodicals, Inc.</p> </sec> </abstract>