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Causes, outcome and prevention of abandonment in retinoblastoma in India
Author(s) -
Kumar Archana,
Moulik Nirmalya Roy,
Mishra Ravi Krishna,
Kumar Dipak
Publication year - 2013
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.24454
Subject(s) - abandonment (legal) , medicine , retinoblastoma , pediatrics , demography , biochemistry , chemistry , sociology , political science , law , gene
Background 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. Procedure A retrospective study of children with retinoblastoma registered at our centre from March 2008 through August 2011. Results Fifty (49.50%) of 101 children registered for treatment abandoned therapy. Abandonment rates were significantly higher in rural as compared to urban children ( P = 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 ( P = 0.01) due to effective pre‐abandonment counselling by a support team under the National Retinoblastoma Registry of India from 2009. Conclusions 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.