Nutrition critical in battle against childhood cancer

SIOP 2012 - Prize winning presentation from India

It is always a pleasure to get together at SIOP and meet the large contingent from India. I enjoy the interaction and exchange of ideas. I attended my first SIOP conference in Mumbai in 2007 and have gradually turned from spectator to participant. What has been noticeable is the excellent representation from India, both in context of conference participants as well as scientific abstracts.

In 2012 the conference was held at the Barbican in London and among the excellent presentations from across the world, what stood out for me (and I suspect for lots of others) was Shalini Jatia's (a volunteer social worker at Tata Memorial Hospital) clear and passionate presentation on “Predictors of Treatment Refusal and Abandonment and Impact of Personalised Psycho-Socioeconomic Support in Childhood Cancer in a Tertiary Cancer Centre in India”. She received a well deserved ovation and prize.

The key findings are as follows - The prevailing abandonment rates at Tata Memorial Hospital in Mumbai had been 15-20%. In 2009 a data manager was recruited and in 2010 a multi-disciplinary psychosocial support group was set-up with the remit of reducing abandonment of treatment. By a combination of interventions including partial financial support, free accommodation, travel and food support, psycho-social counselling, support for transfusions, the abandonment rate decreased from 10.9% in 2010 to 5.3% in 2011. The risk factors significantly associated with abandonment included age less than 5 years, female gender, educational level of parent, and economic status. Other factors like cancer type, prognosis, treatment duration, distance from centre, family size and language were not associated. Around half of these abandoned families were contacted and the top 3 reasons given for abandonment included – belief in complementary and alternative medicine, financial challenges, and belief in incurability of cancer. Based on the findings of this study, TMH now provides full financial support to all children less than 5 years as well as all female children with cancer.

What is the outcome of children with Acute Lymphocytic Leukemia (ALL) in India?

The answer to this question, depends on whose asking it and to what purpose. At an individual level (when access to treatment is not a barrier), currently the standard 5-year survival in most of the developed world is 80-90% with that for low-risk ALL even higher than 90%. The best published results from India are 59% 5-year survival for children with ALL treated from 1985 to 2003 in CMC Vellore (Bajel et al, 2008), and of 57% in those treated from 1990 to 1993 in Tata Memorial Hospital, Mumbai (Advani et al, 1999). For low-risk ALL, these survival figures are around 73-77%. It is important to point out, that these results from India are calculated after censoring (removing) those children with ALL who refused to start treatment or abandoned ongoing active treatment. There are some unpublished data suggesting better outcomes - 70% 4-year survival of children with ALL treated at Sir Ganga Ram Hospital in Delhi (Sachdeva et al, SIOP 2007); and 94% survival after median follow-up of two years of children with ALL treated at Apollo Hospital in Delhi (Mahajan et al, SIOP 2008). A more accurate reflection of outcomes of children with ALL in India can be obtained when we include all those who refused and abandoned treatment and then calculate the survival. This is particularly relevant to clinicians, epidemiologists and health planners. To my knowledge, the recent paper from PGI in Chandigarh is the only one to publish such data. It shows a 4-year overall survival of 33% and a 10-year overall survival of 30% for children with ALL diagnosed at that institute from 1990 to 2006 (Kulkarni et al, 2009). Other sources of such information are the population-based cancer registries. Only two reports have ever been published looking at population-based 5-year survival in children with cancer and these were 35% from Bangalore for the period 1982 to 1987 (Nandakumar et al, 1996); and 39% for Chennai for the period 1990 to 2001 (Swaminathan et al, 2008). In a nutshell, 6 out of 10 children with ALL in India will have long term survival (and cure) if they are compliant with their treatment. If treatment uptake and compliance is variable, only 1 out of 3 children in such settings would be cured. These outcomes apply only to those treated in specialist tertiary centres in urban areas. For those in rural areas or non-specialist centres, the outlook is certain to be worse.

Brain Tumour Foundation of India

Brain tumours, the second most common group of childhood tumours, pose special challenges in diagnosis, management and long-term follow-up. A close co-operation between neurosurgeons, radiation oncologists, paediatric oncologists, neuroradiologists and neuropathologists is needed for optimal management of these children

The Brain Tumour Foundation of India is a non-profit organisation which is committed to reducing the physical, emotional and financial suffering associated with diagnosis, treatment and rehabilitation of patients with these tumours, and their families. Various health professionals and allied professionals from Tata Memorial Hospital and King Edward Memorial Hospital, along with other organisations in Mumbai who share an interest in patients with brain tumours came together and set up this foundation nearly 10 years ago.

Although based primarily in Mumbai, the foundation is keen to reach out to patients with brain tumour across the country. Its three main objectives are

1. Quality Treatment and Care: Support for chemotherapy drugs, materials/medicines needed during surgery and radiotherapy.
2. Social and Psychological Support: Activities included monthly support group meetings, celebrating festivals, organising art events, producing greeting cards (see figures) educational support, advocacy and other similar activities.
3. Research

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Dismal Outcome of Diffuse Intrinsic Pontine Glioma

Around 10-15% of all childhood tumours of the brain are in the brain-stem. A majority of these are diffuse and infiltrating lesions of the pons called Diffuse Intrinsic Pontine Glioma (DIPG). Surgical removal of these tumours is not feasible and focal radiation in combination with experimental chemo/biologic therapeutic agents is the mainstay of treatment. Current outcomes across the world are dismal overall survival less than 10 to 15%.

In a recently published report from Tata Memorial Hospital in Mumbai, clinicians describe the outcome of 20 children with DIPG who were treated with focal radiotherapy (54 Gy in 30 fractions over 6 weeks) along with oral temozolomide during and after radiotherapy (Ref - Jalali et al, Int J Radiat Oncol Biol Phys, May 2010). This was done as a phase 2 feasibility clinical trial. Although the treatment was generally fairly well tolerated, only 35% of children were alive at 12 months after diagnosis and only 6% after 18 months.

In summary, this is one of the very few case-series on DIPG from India and the dismal outcome of these children is similar to that reported from rest of the world. I am fascinated by the complete absence of treatment refusal and abandonment in these group of patients. In a cancer, where treatment is intense and the outcome generally fatal, refusal/abandonment of treatment should theoretically be a relatively common occurrence.