It is not what you say, but how you say it that matters

So says Hanan El Malla, a psychologist at the Children’s Cancer Hospital, Cairo, Egypt. And very rightly so.  We as doctors are often guilty of so many basic communication errors when dealing with our patients. We don't talk enough, don't talk early enough, don't listen, don't simplify and then there are all the nuances of the way we talk - condescending, impatient, impersonal, lack of empathy. Traditionally, we in India have not paid attention to our communication skills (and have never been trained) and there are still many non-believers among us that remain to be convinced about the importance of communication. This becomes all the more relevant in children with cancer, where a treating physician will have to make several conversations (some difficult ones) with the child and the family over the period of their treatment.

In a study of 304 parents of children with cancer treated at the Children's Cancer Hospital in Cairo, Hanan and her colleagues looked at PARENTAL TRUST IN HEALTHCARE during treatment as a function of the communication with them at the beginning. There were six independent variables which were significantly related to parental trust.

1. Information received about the child’s disease
2. Information received about the child’s treatment
3. Opportunity to communicate with the child’s physicians
4. Being satisfied with the conversational style of the child’s physicians
5. Perception that the child’s physicians were sensitive to the parent’s emotional needs
6. Considering that the child’s physicians had met the parents with care

Further, parental trust in the physician and the medical care was NOT RELATED to the amount of information given to the parents of children with cancer.

Why is all this important? Because communication and trust are so inextricably linked with treatment abandonment. As part of initiatives to prevent and tackle treatment abandonment, one has to address communication.

Leukaemia mis-diagnosed

We know that childhood cancer is underdiagnosed in resource-limited settings. Patients presenting with leukaemia who have fever and anemia may be misdiagnosed as malaria, those with seizures and space-occupying lesion may be mis-diagnosed as tuberculoma or neurocysticercosis, etc. I have however not found a lot of evidence which investigates this phenomenon.

Then I came across this blogpost on Alex's Lemonade Stand Foundation which talks about Dr Terry Vik's work  While reading 3000 slides for suspected malaria in children in Kenya, a trained technician picked up 5 possible cases of leukaemia. The study is in its early stages yet and I keenly look forward to its conclusion.

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.

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."