A Study of Abandonment of Treatment in Children with Retinoblastoma in Lucknow

As some of you know that I am continually fascinated by the phenomenon of abandonment of treatment which occurs in children with cancer in developing countries including India. It is a major cause of treatment failure and as stakeholders in the management of children with cancer we have to address is it head on if we want to improve their outlook. I previously posted on this in the blog (see link).

There definitely has been more awareness in the last few years and gradually we are seeing some solutions across the world. One of the initial success stories came from the twinning program between St. Jude Children’s Research Hospital in Memphis USA and Instituto Materno Infantil de Pernambuco in Recife, Brazil which has acted as a template for the rest of the world (see link). Hearteningly, there are now stories of success in India, one of which is from Tata Memorial Hospital I covered in my blog earlier this month (see link).

The other is a recent study on children with retinoblastoma diagnosed from March 2008 to Aug 2011 at King George's Medical University and treated under the care of Dr Archana Kumar.Not only did they study the occurrence of abandonment, they also employed a social worker and a data entry operator to trace those patients who defaulted appointments using phones or postal mail or both. I congratulate the team at KGMU and would like to share with you some of their important findings.

• Fifty (49.50%) of 101 children registered for treatment abandoned therapy 
• There was an astonishing decline in abandonment rates  from 71% in 2008-9 to 60% in  2009-10 to 39% in 2010–11 and 17% in first half of 2011–12.
• Abandonment of therapy was significantly higher in children from rural 
• background. A larger proportion of children from rural background belonged to lower socio-economic class and had 
• to travel longer distances often using multiple modes of transport.
• Among various reasons cited for abandonment - financial constraints and unwillingness to enucleate were the most common.

What is also interesting is the efforts made to track these patients and the outcome of those efforts. Only 88 (31%) of the 282 calls made to trace 42 families (an astonishing average of 6.7 calls per family) were answered. The others were wither connected but not answered, or phone numbers were wrong or swiched off/not reachable. Only 1 of the 41 letters written to 23 families evoked a response, another two were returned due to wrong addresses. After all that intensive effort, only 12 children came back for retreatment after a median period of 6 months (range 5–32 months) and all but one had progressed and 6 of the 12 died! The astute team at KGMU quickly learned their lessons and they say "As soon as we realized that post-abandonment counselling was ineffective in improving compliance, we changed our strategy by intensifying the counselling at initial contact emphasising that regression of tumour following chemo-reduction in extraocular disease did not amount to cure and also highlighting that most of the children who had earlier abandoned therapy died of disease progression."

To me this is the message of the study - Abandonment of treatment leads to progression and death and early and intensive counselling is key. By the time they have defaulted, it is often too late.

Extraocular Retinoblastoma in India

Retinoblastoma is the most common cancer of the eye in children and accounts for 2.5 to 4% of all childhood cancers. When a child is diagnosed with retinoblastoma, the cancer may be limited to the eye globe (intraocular) or have spread beyond the eye globe (extraocular). The spread may be local (to the orbit and local lymph nodes) or more distant i.e metastatic. Delays in presentation in India lead to more than half of the children with retinoblastoma having the cancer spread outside the globe at diagnosis.

Ref - Sahu et al, Pediatric Hematology Oncology, Nov-Dec, 1998

Sameer Bakhshi and his colleagues describe the treatment and outcome of 25 children with extraocular but non-metastatic retinoblastoma over a 5 year period (2003 to 2008) from one of the premier treatment centres in India. The overall survival figures are not given but at a median follow up of 28.5 months (nearly 2½ years) 13 of the 25 children had progressed/relapsed.

Ref - Bakhshi et al, Journal of Pediatric Hematology Oncology, Mar 2010

All those who progressed or relapsed, either refused or did not respond to second line treatment which implies that they would all ultimately die of the cancer. One also needs to consider that there were 51 children with extraocular non-metastatic retinoblastoma during this time period but only 25 opted for treatment. Many if not all of those who did not opt for treatment for various reasons are also likely to have succumbed to the cancer. These poor outcomes are all the more significant as majority of the children in India with retinoblastoma present late and the disease has spread locally or systemically. Hence, it is not surprising that the five year overall survival of children with retinoblastoma (all stages combined) is less than 50% while that in Europe and North America is 95% and above.

Ref – Swaminthan et al, International Journal of Cancer, June 2008