The Cankids Pediatric Palliative Care Day Care & Transition Home

I have known Poonam for a few years (www.cankidsindia.org) and watched in bewildered awe as her organisation has gone from strength to strength and now has a national presence. An important part of her efforts has been to establish a Day Care & Transition Home in Delhi. This dream is finally achieved today and the Home, which is located in proximity to AIIMS and Safdarjung Hospitals, has been opened today. I have been there last year when it was being developed and the ambition of the project as well as the attention to detail is incredible. I wish Poonam and her organisation many more such successes.

Why should there be a focus on children with cancer in resource-limited countries?

This is an often asked question in the context of much of the developing world. And the question should not be surprising; after all neonatal and child mortality from inadequate perinatal care and infectious diseases continue to be the main challenges in these settings. When resources are limited, and needs are many, then often the "less deserving" miss out. Over 5000 children die in India EVERY DAY before they reach the age of 5 years, most of them from prematurity and low birthweight ; neonatal infections; birth asphyxia and birth trauma; pneumonia; and diarrhoeal diseases. In comparison, the total number of children less than 15 years of age with cancer EVERY YEAR in India is around 50,000. So it is not difficult to do the maths and work our areas of focus.

Nevertheless, the life of every child is important and those of us involved in looking after children with cancer in resource-limited settings are well aware of the challenges of access to care, treatment abandonment, etc. The recently published report of the Global Task Force on Expanded Access to Cancer Care and Control in Developing Countries titled "Closing the Cancer Divide: A Blueprint to Expand Access in Low and Middle Income Countries" is an essential read for all the stakeholders involved in delivering care to children with cancer in developing countries. The global task force is composed of leaders from the cancer and global health communities and is an initiative convened by Harvard Global Equity Initiative, The Harvard Medical School, The Harvard School Of Public Health And The Dana-Farber Cancer Institute.

The report highlights some very important facts which I think are relevant for us

1. More than 85% of all newly diagnosed children with cancer and 95% of deaths in children with cancer occur in low and middle income countries.
2. For children aged 5-14, cancer is the third leading cause of death
   in upper-middle, fourth in lower-middle, and eighth in low income countries.
3. A child diagnosed with cancer who lives in one of the poorest countries has an 80% probability of dying, compared to less than 30% in one of the wealthiest countries

The report identifies a set of candidate cancers and compelling  Cancer Care and Control   opportunities for immediate action to expand prevention and/or treatment. Among these are cancers in children which are ideal targets for advocacy and action in low and middle income countries.

A symphony or a raga...or both Gupta S - Indian J Med Paediatr Oncol

A symphony or a raga...or both Gupta S - Indian J Med Paediatr Oncol

I read this editorial in the Indian Journal of Medical and Pediatric Oncology today. I loved the way he wrote about the different philosophies of Indian and Western classical music and compared it to the oncology scene in those settings. Formation of co-operative groups have been critical to the progress against cancer in the West. The lack of similar co-operative groups in India is a gap which needs to be urgently filled. The formation of the Indian Pediatric Oncology Group nearly 3 years ago was a welcome development. I look forward to their work.

My Highlights of SIOP 2011

Going to the Annual Congress of SIOP is always a worthwhile experience for me as it allows learning and networking. Also special is the opportunity to engage with the paediatric oncology community from India who I have started to get to know over the years. A welcome recent trend I have noticed is the increased participation of paediatric haem/onc fellows from India as well as paediatric residents with an interest in paed haem/onc. This is likely to be as a result of the several fellowship programmes which are now up and running in India. Again this is a welcome development.

Among others I met Vikas and Mohammed from Sir Ganga Ram Hospital, Narendra from Manipal Hospital, Pinky from BJ Wadia Hospital, Kajal from Tata Memorial Hospital, Sneha from Chattrapati Shahuji Maharaj Medical University (previously known as KGMC) in Lucknow and Vaishnavi from Sri Ramachandra Institute. They made some excellent oral and poster presentations and I look forward to seeing their work in print.

The presentations from India which stood out for me were

Tushar Vora's excellent oral presentation on the Impact of holistic housing care at St Jude India Childcare Centres on morbidity and mortality during treatment of Acute Lymphoblastic Leukaemia. Only 1 out of the 60 children (1.6%) who were provided housing at that centre abandoned treatment compared to 21 out of the other 324 children (6.4%) who were treated at Tata Memorial Hospital at the same time but were not provided housing at St Jude.

Data from AIIMS on the NB96 neuroblastoma protocol over a 14 year period which showed a 3 year overall survival of 60.7% (Stage 1 and 2 - 100%, stage 3 - 71.5% and stage 4 - 35.7%). 56.9% of stage 3 patient and 17.6% of stage 4 patients were in clinical remission.

Mohammed Ramzan's poster from Sir Ganga Ram Hospital (Treatment abandonment is a major hurdle for improving survival in childhood cancer in the developing world) showed data on 146 parent of children with cancer who had abandoned treatment and 57 (40%) of these children had died. When they were interviewed on the phone, 28 of them had opted for no further treatment for their children (of which 24 died), 27 had opted for alternative treqatment (and 12 had died), and 78 had opted for chemotherapy at another centre (of whom 21 had died).

On a final note, I was still looking for that elusive multi-centre study from India which has yet to materialise. Perhaps London 2012 ........

Abandonment of treatment for childhood cancer: A Position Statement by the SIOP PODC Working Group

When I look at the outcomes of children with cancer in developing countries including India and try to understand the survival gap with that seen in the developed world, the one fact which strikes me most is the high level of children with cancer who abandon treatment. This is as much a social issue as it is a medical one. There is a need to recognise this, measure it, report it and then tackle it. In this regard, I would like to bring to your attention, the recently published position statement of the SIOP PODC Abandonment of Treatment of Working Group (Mostert et al, 2011).

"Almost 80% of children with cancer in resource-rich countries can be cured by timely, intensive multimodality treatment and robust supportive care. However, only 20% of the world's children with cancer live in these countries; the remaining 80% reside in resource-poor nations and have a substantially lower chance of survival. Abandonment of treatment is a major cause of therapeutic failure in these resource-poor countries, affecting up to 50—60% of cases.4 Abandonment constitutes failure to start or complete curative treatment (except in situations when such treatment is contraindicated for medical reasons—eg, the patient is too ill).

At the 2010 Congress of the International Society of Pediatric Oncology (SIOP), the Abandonment of Treatment Working Group was established as one of 12 new working groups within the Pediatric Oncology in Developing Countries (PODC) structure. Its aims are to: heighten awareness of abandonment as a major cause of treatment failure in resource-poor countries; to elucidate the contributing factors; and to identify and widely disseminate effective solutions. To enable comparisons of studies worldwide, the international paediatric oncology community must adopt consistent terminology and reliably identify and document abandonment. Only in this way can the magnitude of the global problem be measured accurately, the underlying causes ascertained, and solutions devised.

For these reasons, the Working Group offers five recommendations. First, we recommend that abandonment of treatment be documented as an adverse event in childhood cancer studies in resource-poor countries. Patients who do not begin or complete treatment should not be excluded from survival analyses. Event-free survival should be analysed in two ways: by treating abandonment as an adverse event and by censoring cases at the time of abandonment. Because some children might be cured if they abandon treatment after completing most of their planned therapy, these two estimates will reflect the upper and lower bounds of the true event-free survival estimate. Second, we propose that abandonment of treatment be defined as failure either to begin (conventionally termed refusal) or to continue the planned course (abandonment), because both are likely to have related underlying causes and could benefit from similar interventions. However, the timing of abandonment should be documented to help to identify related factors. Third, treatment in resource-poor settings might be interrupted for various reasons, including financial and transportation difficulties. When such interruptions herald full abandonment and what the effect on outcomes will be are difficult to predict. We suggest that abandonment of treatment be defined as a hiatus of 4 or more weeks in the scheduled treatment; this period is based on empirical evidence and on anecdotal observations that, after an absence of this length, patients are unlikely to return. In the rare event that patients do return after a prolonged interruption, the treatment options might be limited in the setting of refractory disease or imminent death. Further research will help to establish whether this 4-week working definition needs revision. Fourth, we recommend that abandonment of treatment should be used only in the context of treatment given with the intention of cure. However, if palliation is the only achievable goal because of disease factors or poor socioeconomic conditions (particularly relevant in resource-poor countries), these children must be documented carefully, tracked, and analysed to elucidate the reasons underlying the administration of solely palliative, symptomatic, or end-of-life care to children with curable cancers. Finally, the Working Group recognises that some might perceive the term abandonment of treatment as implying that the patients and their parents are solely responsible; we emphasise that this is not the case. Abandonment of treatment is as much a socioeconomic issue as a medical one, and is often the result of various factors beyond the control of the patients and parents.

Abandonment of treatment can no longer be ignored by the international paediatric oncology community. The members of our Working Group offer these recommendations in the belief that all children with cancer have the right to an equitable chance of survival."