Milestones in Childhood Cancer Collaborative Research - Part 2

The 21st century has see the emergence of multi-centre collaborative research from low and middle income countries with reports from Central America, Africa, China and India. This is a very welcome development and I will briefly describe some of these initiatives below. But I would like to start with Brazil where cooperative groups for childhood cancer started in the 1980s.

The Brazilian Experience

The Cooperative Groups Initiative in Brazil started in 1980, allowing exchange of expertise and proposals of better care. There are seven well-established cooperative groups with ongoing protocols including the participation in international studies. Among their earliest works which was published in 1991 was the randomised controlled study on Single‐dose versus fractionated‐dose dactinomycin in the treatment of wilms' tumor with no significant difference in overall or relapse‐free survival. Shortly afterwards, they published the Treatment results of three consecutive Brazilian cooperative childhood ALL protocols: GBTLI-80, GBTLI-82 and -85 and were able to examine the role and dose of cranial radiation as well as treatment intensification.

For further reading - Brazilian Society of Pediatric Oncology - SOBOPE: 30 years of history, a lot in the present, full of the future and Pediatric hematology oncology in Brazil

Francophone Africa - The French‐African Pediatric Oncology Group (GFAOP)

The Franco-African Childhood Cancer Group (French acronym, GFAOP) was founded in 2000 with aim of improving the outcomes of children with cancer in Africa. The GFAOP has developed two forms of action. The main form consists of organizing two- to twelve-month training sessions for physicians and nurses in France and Morocco. The other form involves assessing the feasibility of modern treatment protocols for various cancers in Africa. The first feasibility trials were carried out on nephroblastoma and Burkitt's lymphoma in 12 pilot units in North Africa, West Africa, and Madagascar. In the first study from 2001 to 2004, 306 children of Burkitt's lymphoma using French LMB protocols adapted to the African setting and achieved a survival rate of 61% - Treatment of B‐cell lymphoma with LMB modified protocols in Africa—report of the French‐African Pediatric Oncology Group (GFAOP).

For further reading (In French) - Treatment of childhood cancer in Africa. Action of the Franco-African childhood cancer group

The SIOP PODC Africa Wilms Tumour Project

This project is implementing a SIOP PODC adapted treatment guideline for Wilms tumour in several centres in sub-Saharan Africa. This is done as a multi centre prospective clinical trial with uniform outcome evaluation. The project started in 2014. More than 300 patients have been included and treated. End of treatment survival without evidence of disease increased from 52% to 68%. Death during treatment decreased from 21% to 13% and abandonment of treatment from 23% to 13% - Improved outcome at end of treatment in the collaborative Wilms tumour Africa project

For further reading - The Collaborative Wilms Tumour Africa Project; baseline evaluation of Wilms tumour treatment and outcome in eight institutes in sub-Saharan Africa

 Asociación de Hemato‐Oncologiá Pediátrica de Centro América (AHOPCA)

Inspired by the twinning program of Manuel de Jesus La Mascota Hospital in Managua, Nicaragua and the Pediatric Clinic of the University of Milano‐Bicocca in Monza, Italy as well as the subsequent establishment of the Monza International School of Pediatric Hematology‐Oncology (MISPHO), the Asociación de Hemato‐Oncologiá Pediátrica de Centro América (AHOPCA) was formed in 1998. Initially this consisted of Guatemala, Honduras, El Salvador, Nicaragua, and Costa Rica. Panama joined in 2001 and the Dominican Republic in 2006

Their early collaborative research works have been in the area of Nutrition and Retinoblastoma.

For further reading - Asociación de Hemato-Oncología Pediátrica de Centro América (AHOPCA): a model for sustainable development in pediatric oncology

There are several other regional and national initiatives in pediatric oncology collaborative research in LMIC which have blossomed in recent years e.g. the Turkish Pediatric Oncology Group, The Pediatric Oncology East and Mediterranean (POEM) network and others. We look forward to seeing their work in the future. I would like to now focus on China and India, which together would constitute nearly a third of the childhood cancer burden. And so both of these countries have to strengthen their collaborative research so that they individually and the world collectively can aspire to reach the WHO Global Initiative for Childhood Cancer target of at least 60% survival by 2030.

The Chinese Experience

There are two national collaborative groups within China. The Chinese Children Leukemia Group (CCLG) started the CCLG-ALL 2008 Study. A total of 2231 patients were recruited from 10 hospitals across the country from 2008 to 2013 - Outcome of children with newly diagnosed acute lymphoblastic leukemia treated with CCLG-ALL 2008: The first nation-wide prospective multicenter study in China. More recently, the Chinese Children Cancer Group (CCCG) which was formed in In 1997 under the China Anti-Cancer Association, has organized one of the largest clinical trials in China, the CCCG-ALL-2015 Study. The study is led by the National Center for Children’s Health (Shanghai) and supported by St Jude Children’s Research Hospital and the VIVA Foundation. Up to January 2019, and 6024 patients were recruited into the study.

 

For further reading - Treatment of childhood cancer in China: Current status and future direction

Indian Pediatric Oncology Group (InPOG)

 

The earliest report of collaboration in the field of pediatric oncology in India was that between Cancer Institute, Chennai and the National Cancer Institute, USA in the early 1980s. Adopting a more intense protocol (MCP841) than that being used at the time, led to an improvement in the event free survival of acute lymphoblastic leukemia from 20% to 40%. This treatment strategy was then adopted by Tata Memorial Hospital, Mumbai in 1986 and All India Institute of Medical Sciences, New Delhi in 1992. With this common protocol, event free survival rates of 40-60% were achieved - Treatment of acute lymphoblastic leukaemia in countries with limited resources; lessons from use of a single protocol in India over a twenty year period.

The need to establish a national cooperative group in order to develop prospective multi-centre clinical trials in India became increasingly apparent. Such a strategy was critical to understand the biological differences in the disease, to assess responses to treatment and ultimately to improve childhood cancer survival in India. Active since 2015, the mission of InPOG is to improve the outcomes of children with cancer in India by collaborative research. At present here are 26 disease and discipline subcommittees with a portfolio of 31 studies.

 

The InPOG-HL-15-01 was amongst the first studies to start recruitment and standardised therapy of children with Hodgkin disease on an ABVD backbone – InPOG-HL-15-01 - Challenges and lessons learnt in setting up the first collaborative multicentre prospective clinical trial in childhood cancer in India.  Initial results are expected to be published next year.

 

For further reading - Indian Pediatric Oncology Group (InPOG) - Collaborative research in India comes of age

The future looks very exciting. May this momentum gather an even greater speed!

Cancer and Childhood Cancer Care in India – FIVE reasons why I am POSITIVE and MOTIVATED on our 74th Independence day

Today we complete 73 years of our independent existence and celebrate our 74^th Independence day. The strides we have made as a nation are truly enormous and are acknowledged widely. At the same time, the challenges which remain are no less mighty and we need to continue on the path of relentless progress to overcome hunger, poverty, ill health, strife, pollution, among others.

At this time I reflect on the cancer and childhood cancer care in India, and despite the many challenges which we face in this area, I have found FIVE reasons why I as a pediatric oncologist am POSITIVE and MOTIVATED on this day and look forward to the coming year and decade with great anticipation.

REASON ONE – WHO Global Initiative for Childhood Cancer (GICC)

Active involvement of the WHO and launch of the GICC in 2018 (https://www.who.int/cancer/childhood-cancer/en/) has been a landmark development for all stakeholders in pediatric oncology across the world. Work has already started in several countries including Myanmar which is in the South Asian region. Some work has also begun in India last year with meetings with the professional societies and the parent groups. This year, the Ministry of Health and Family Welfare, Government of India along with the WHO SEARO office have selected 4 centres (BBCI Guwahati, Kidwai Hospital Bangalore, Kalawati Saran Hospital New Delhi and Tata Memorial Hospital Mumbai) to be National Centres of Excellence for Childhood Cancer services. Many more activities and initiatives will follow to help India reach the target of 60% survival rate for children with cancer by 2030.

REASON TWO – National Cancer Grid (NCG)

For too long we have had a plethora of national societies in all spheres of medicine including oncology and pediatrics, which seem to exist from meeting to meeting, seminar to seminar. Most professional medical societies in India have not taken up the cause of the patient, and addressed the deficiencies in healthcare in a big way. Enter National Cancer Grid (https://tmc.gov.in/ncg/) in 2012 – today it is a network of >200 major cancer centers, research institutes, patient groups and charitable institutions across India. Led very ably by Dr CS Pramesh it has launched and successfully executed a host of collaborative activities – Disease Management Group specific Virtual Tumour Boards, Online second opinion service through Navya, CRedO Workshop for researchers, are just a few of the many initiatives which are ongoing or in development.

REASON THREE – Indian Pediatric Oncology Group (InPOG)

Multicentre collaborative research is critical if India wants to make progress in the care and outcomes of its children with cancer. InPOG (https://www.phoindia.org/cms/inpog-faqs) has been active since the beginning of 2015 and as of December 2019 (in five years) 5543 patients have been recruited in 15 studies (40% interventional and 60% non-interventional studies) from 90 centres. It now enters into its next phase and promises faster and greater developments.

REASON FOUR – Cankids

Driven by the relentless energy of its founder Poonam Bagai, Cankids (https://www.cankidsindia.org/) has blazed the trail in India as well as globally, showcasing how patients, parents and civil society can contribute to childhood cancer care. They not only provide vital social and psychological support for children with cancer and their families, but are leading engagement with state governments on Change for Childhood Cancer in India (http://childhoodcancerindia.blogspot.com/2017/09/supporting-childhood-cancer-treatment.html) and have done a phenomenal amount of work during COVID-19 ensuring that the treatment of patients is not disrupted.

REASON FIVE – Max Healthcare and Max Institute of Cancer Care

My workplace and my employer (https://www.maxhealthcare.in/) have consistently demonstrated, never more than now in these COVID-19 times, that it is possible to deliver high quality care to cancer patients while balancing social responsibility and driving academics and research in the private sector. Solving India’s healthcare challenges would need partners in all sectors of healthcare and Max has shown the way. Thank you Mr Abhay Soi and Dr Harit Chaturvedi for your inspirational leadership

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Childhood cancer survivorship and late effects: The landscape in India in 2020

Cure from childhood cancer is now a justifies expectation and with the right treatment most children would get cured of their cancer and achieve long-term survival. While the goal is that this long-term survival is normal, experience has taught us that some survivors suffer from late side-effects. This has been an area of intense focus in the last few decades and there is now growing evidence on how to prevent and treat these late side-effect.

So far, the information from India has been limited and scattered. We mad an attempt to bring this all together and are happy to share our recent publication on this in the Pediatric Blood Cancer - Childhood cancer survivorship and late effects: The landscape in India in 2020

We highlight not only the steadily increasing work going on with childhood cancer survivors in the hospitals, but also the efforts taken by healthcare providers, and other stakeholders in developing this service, advocating for this cause and providing survivors with a platform. A special mention of two such organisations - Ugam and Cankids - who contributed to this effort.

COVID-19 Pandemic and Childhood Cancer

None of us has ever seen anything like this before. And I am not talking about a viral infection. I am talking about the emergence of a new infection and the global and national response to it which has been without parallel. Over the last few months not only has the infection affected the health of millions and taken the lives of hundreds of thousands, it has brought the world to a HALT! Individuals, businesses and countries have borne the brunt of it and continue to do so.

It will be some time before this comes to pass. Meanwhile children with cancer (like those with many other illnesses) have been caught in this maelstrom with impact on their diagnosis, their treatment and eventually outcomes. In the face of such ongoing challenges, the global and the national pediatric oncology community has got together to respond on multiple fronts in many different ways.

The Global COVID-19 Observatory and Resource Center for Childhood Cancer is one such effort. Developed by SIOP and St Jude Global, this Resource Centre provides all relevant information to those caring for children with cancer including parents and families. The reader is encouraged to browse the website for further information.

Specifically I wanted to highlight two things.

Firstly, are the weekly COVID Conversations - a live webinar to discuss difficult issues, address pressing questions, and hear the experiences of our colleagues when it comes to caring for children with cancer during this pandemic. Several such Conversations have happened with one specifically relating to Experiences in India and Pakistan.

Secondly, is the Global Registry of COVID-19 in Pediatric Cancer which provides a visualisation of the impact of the virus on our patient population.

Podcast on perspectives of caregivers of children with cancer in India on their journey to accessing timely cancer diagnosis and treatment

I am glad to share a podcast https://www.ghccpod.com/22-the-labyrinth/ was conducted by Dr Mark Zobeck based on one our recent pieces of work in trying to understand the experiences of the caregivers of children with cancer in India as they obtain their diagnosis and start treatment.

I quote from his link

How does a child with cancer in India access care?

If you’ve ever had an illness that was difficult to diagnose, you know that navigating the medical system can be incredibly frustrating. Bouncing back and forth between doctors, taking time off of work or school, waiting for hours upon hours, all while you don’t feel well and do not know what is going on with your body is enough to drive anyone crazy. Unfortunately for families of children with cancer, they know this feeling all too well. Childhood cancer can be very difficult to diagnose and the journeys that families undergo to find answers and receive care can be long and grueling. 

To better understand these journeys, Drs. Neha Faruqui, Ramandeep Arora, and their colleagues have studied what they call the “healthcare labyrinth” of accessing childhood cancer care in India. Through discussions with parents and caregivers, they classified the major themes that contribute to difficult or prolonged paths to care. Today on the podcast, we will discuss their findings from their many hours of listening to the families’ stories. 

I would encourage anyone listening to the podcast to also read their paper. As I say in the podcast, it reads more like a novel than a journal article, and I found myself emotionally invested in the way the parents described their journeys. It made me appreciate anew how important it is to establish robust health systems that can rapidly identify patients and refer them to appropriate tertiary care.

Lastly, this discussion is not meant to be a criticism of the Indian healthcare system. It is an enormous system that is responsible for caring for 1.3 billion people! There are many things it does very well! But of course, there are things that can be improved. As Dr. Arora says in the episode, this paper, and our discussion is about listening to the caretakers to discover how providers everywhere can better care for not only the patient during treatment but for the entire family through the entire cancer experience. 

Read the full study here: https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7911-x

Umbilical Cord Blood Banking in India - A Complete Rip-Off

Why is Umbilical Cord Blood Important?

The blood in the umbilical cord us a source of STEM CELLS. These are special cells which have the ability to grow and develop into many different cell types in the body. They are thus of use in many diseases including cancer.

Then should one not store their umbilical cord blood?

The answer to this is Yes and No. The idea to store umbilical cord blood is a good one. The problem is that those who are storing and paying for storing it are being misled. They are assuming that this umbilical cord blood would be of use to them in the future. This is far from true. The chance that the umbilical cord blood stem cells would be used by those who donated them is 1 in 1000 to 1 in 200,000.

So who is misleading us?

We are being misled by false advertising and marketing of companies who bank umbilical cord blood as a for-profit private enterprise i.e. PRIVATE CORD BLOOD BANKING. We are being misled by the celebrities who endorse this practice. We are being misled by those doctors who promote this practice.

So is all umbilical cord blood banking bad?

No, banking umbilical cord blood in PUBLIC CORD BLOOD BANKS is good and is likely to be of much more use. Please see below a list of public sector cord blood banks.

Where can I get further information?

Also, if you want more detailed information on this from an unbiased source, please click on this link which is the Indian Academy of Pediatrics position statement on umbilical cord blood banking

Supporting Childhood Cancer Treatment in Punjab - Government of Punjab joins other Stakeholders

Childhood cancer almost never figures on the government radar. And we all realize that this is a critical component if we have to have real success in true control of childhood cancers in India. Individuals and organisations – where from the healthcare sector or the non-governmental sector can only do so much.

Over the last couple of years, Cankids has been actively engaging and lobbying with state governments – of Tamil Nadu and then Uttar Pradesh. Earlier this week they had a very fruitful meeting with the Punjab Government. I am sharing some news stories with you in this regard.

http://www.hindustantimes.com/punjab/cashless-cancer-treatment-for-all-below-18-punjab-health-minister/story-YeYJtKKcAbV584lwOqqneK.html

http://www.babushahi.com/full-news.php?id=63475&headline=Cashless-Cancer-treatment-for-children-at-18-empanelled-Punjab-hospitals

The Punjab government represented by the Punjab health minister Brahm Mohindra and his team joined the medical community – Dr Shruti Kakkar from DMC Ludhiana, Dr Joseph John from CMC Ludhiana, Dr Amita Mahajan from Apollo, New Delhi as well as Dr Scott Howard from World Child Cancer and International Society of Pediatric Oncology. The parent/patient support groups and civil society was represented by Cankids.

At a open meeting hosted at Government Medical College Patiala, several announcements were made including

• Extend cashless cancer treatment for the children at the 18 empanelled hospitals
• To provide tertiary health services to each and every child of state suffering from cancer
• commenced first of its kind ever special awareness programme for children suffering from cancer
• Under the Chief Minister Cancer Relief Fund scheme, cancer patients will be given Rs 1.5 lakh for treatment
• The health department is also imparting special training to medical officers, staff nurses and auxillary nursing midwives (ANMs) to conduct tests concerning cancers, especially among children and women in rural areas

Of course, this is but the first step. Continued action will lead to change and that remains to be seen.

Childhood cancer in India and abandonment of treatment

I have often touched upon the phenomenon of abandonment of treatment in this blog. This happens when a child either does not start treatment or does not complete treatment. If this happens, then the child is likely not to get cured of their cancer. One may ask, why would a print not get their child treated appropriately. But this is the reality. Abandonment of treatment is the culmination of many inter-related factors.

Recently a journalist Ankur Paliwal contacted me as he wanted to highlight this issue. He met others as well and has published a nice piece which tries to bring together all viewpoints and highlights very well, the social problem that abandonment of treatment is. I would urge you to read it by clicking on the link https://scroll.in/pulse/844442/children-are-dying-of-cancer-for-lack-of-money-even-those-that-get-free-medical-treatment

Samkisha Foundation - Bangalore

The article from Deccan Herald below brought to my attention Samiksha Foundation which provides support to children with cancer and their families in Bangalors

For a childhood with hope - Deccan Herald

Pediatric Hematology Oncology Journal (PHOJ)

The pediatric oncology community in India has steadily been expanding and taking several giant strides as well as small steps in the field of research, capacity building, networking, developing standards, etc. One such important step is the genesis of a dedicated journal to display and disseminate high quality scientific work from India. The editorial board led by Gaurva Narula as well as the leadership of the Pediatric Hematology Oncology Chapter of Indian Academy of Pediatrics have to be congratulated on this initiative. I have no doubt that the excellent quality of work being done in India would provide the perfect foundation to take the journal to a level where it becomes one of the preferred destinations for global pediatric oncology research.

Fertility in India: Fertility information leaflets for childhood cance...

Fertility in India: Fertility information leaflets for childhood cance...: Cancer and its treatment have many side-effects, some of which may persister appear years after the treatment has finished. This is known ...

Childhood Cancer and Gender Bias - Where are the missing girls?

I always enjoy my annual trips to the SIOP Congress which besides being a source of acquiring knowledge, is also an unparalleled opportunity to meet like-minded individuals (who are now friends) who are continuously striving to improve the outcomes of children with cancer across the world. Often at these meetings happened to meet a person or hear a presentation which leaves you spellbound. It was Shalini's presentation at SIOP 2012 in London and this year it was Ritu's presentation at SIOP 2013 in Hong Kong.

Ritu Bhalla is a two time childhood cancer survivor. She was diagnosed with non-Hodgkin lymphoma at the age of 4 years and with Acute lymphoblastic leukaemia at the age of 7 years. She now works for Cankids India (www.cankidsindia.org) and is their assistant awareness officer and girl child ambassador. Cankids is the larger childhood cancer support group in India and works in 34 centres across the country. They provide medical assistance and counselling and emotional support programs. One such centre is the Pt. BD Sharma PGIMS at Rohtak in Haryana. When they organised the International Childhood Cancer Day in Feb 2013, they felt that there were relatively few girls (patients or survivors) present. That was the stimulus to look more closely and identify the "missing girls".

There were 123 children with cancer in Rohtak from 2006 to 2013 who registered with Cankids. 1 out of 3 children at diagnosis were girls. However only 1 out of 13 children surviving at the end of treatment were girls. The was a disproportionately higher rate of abandonment of treatment among girls (14%) as compared to boys (6%). The gender of the child was a risk factor for adverse outcome (mortality or abandonment of treatment). The female gender has been previously reported as a risk factor for abandonment of treatment from India and China but this association is not consistent and studies from Central America and Indonesia did not show the same association. This may be a reflection of the variation of societal prejudices across the world.

Ritu and Cankids now want to take this forward and address the issue with the ultimate ambition of making sure that no girl with cancer in India has any lesser chance of diagnosis and treatment as a boy with cancer. I wish them all the best.

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.

Chemotherapy Reference Card for Nurses

I would like to share with you a recent initiative by International Network for Cancer Treatment and Research (INCTR) Palliative Access/ PAX Program and MNJ Institute of Oncology and Regional Cancer Hospital in Hyderabad.

Virginia LeBaron who is a Nurse in the INCTR Palliative Access/ PAX Program has developed a handy pocket chemotherapy reference card for oncology nurses at MNJ. It describes frequently administered chemotherapeutic drugs at MNJ, indications for their use, common side effects, and specific nursing considerations for each drug. I am grateful to Virginia and Dr Gayatri Palat (who is a consultant in Palliative Care at MNJ) for giving me the permission to use this blog to disseminate their work.

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.

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.

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 ........

Multi-Centre Study on Pediatric Brain Tumours in India

In India, CNS tumours are the third most common childhood cancer behind leukemias and lymphomas. However, CNS tumours are a heterogeneous collection of many pathologies and till recently there has been limited data from India describing their epidemiology. For this reason the recent paper in Neurology India made welcome reading (Jain et al, 2011). In terms of results, the paper does not offer anything spectacularly new. The most common primary pediatric brain tumors were astrocytic tumors (34.7%), followed by medulloblastoma and supratentorial primitive neuro-ectodermal tumors (22.4%), craniopharyngiomas (10.2%) and ependymal tumors (9.8%). The most common astrocytic tumor was pilocytic astrocytoma.

The two main caveats to interpreting this information are - that it is not population-based data and the information is collated from pathology reports. Upto 20% of childhood CNS tumours may be diagnosed on the basis of radiology only and this group of tumours would be missing.

Despite all this, what has been most fascinating for me is the fact that this paper is a joint effort of seven institutions with nearly 4000 childhood CNS tumour patients. Such multi-institutional studies are not frequent in the paediatric haematology-oncology literature from India and the effort of the authors needs to be acknowledged.

Wilms Tumour in India

Carl Max Wilhelm Wilms was a German pathologist and surgeon who worked extensively on renal tumours towards the end of the 19th century. One of the most common solid tumours in children, nephroblastoma, is also known as Wilms tumour in recognition of his work. In resource-rich countries, the five-year survival for this cancer is 90% and the focus now is on reducing the treatment-related morbidity while maintaining similar outcomes.

Despite being a relatively common childhood cancer, there have been no published studies from India on the outcome of this cancer for over a decade. It is for this reason, that the recently published report from PGI Chandigarh (Trehan et al, JPHO, 2011) is so timely. 23 children with Wilms tumour were seen over a five year time period (1999 to 2003). Three did not start treatment and abandoned after diagnosis. In the remaining 20 treatment was based on the SIOP philosophy of neoadjuvant or preoperative chemotherapy. There was one treatment related mortality (5%), three relapses (15%) and one abandonment on therapy (5%) leading to a five-year event-free survival of 75%.

Detailed analysis of causes of treatment failure would be needed to further improve outcomes. What is noteworthy is that the three relapses happened in two Stage II patients and one Stage III patients. Staging of the chest was done by x-ray which would be standard practice in many centres in India. I wonder whether a CT Chest may have upstaged these patients at diagnosis and consequently they might have received more intensive chemotherapy leading to reduced risk of relapse. I think it is a question worth answering in the future.

How does this compare to other centres in India? The difficulty is the lack of published and peer-reviewed literature. Nevertheless, long term event-free survival of 73% and 77% have been reported from Tata Memorial Hospital (SIOP 2005) and AIIMS (SIOP 2009) based on data obtained from scientific presentations of annual SIOP congresses.