A Parents Guide to Childhood Cancer - The Max Institute of Cancer Care Version

When a child is diagnosed with cancer, the family faces a variety of new medical terms and challenges. It is vital that parents understand the many aspects of the illness and treatment, as well as the experiences they may face and have to cope with during the treatment process. At such times, consistent, repeated and reliable information is invaluable. One way to deliver this is through written information in simple language targeted at parents and carers. There are many resources available online - here are two of my favourite ones - The Children's Oncology Group Family Handbook and the Children's Cancer and Leukemia Group Parents Guide. 

I had not been able to find a similar good resource targeted at parents of children with cancer in India till I came across and excellent resource made by St Jude India ChildCare Centres and the clinical team at Tata Memorial Centre, Mumbai. With their permission we have now adapted for the use of our parents whose children are being treated at Max Institute of Cancer Care. They are available in English and in Hindi.

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.

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.

Communication in Paediatric Cancer Patients: A Parent's Perspective

Clear and honest communication done sensitively is important in the holistic management of children with cancer and their parents. Little research has been done in India to assess the health information needs of sick children (and their parents). Also the quality and adequacy of information given by health professionals not been looked at.

To address this knowledge gap, Dr Tullika Seth, a haematologist at All India Institute of Medical Sciences has done a pilot study where she interviewed parents of children aged 10 to 18 years with acute lymphocytic leukaemia (Seth T, Indian Journal of Palliative Care, Jan-Apr 2010). The results clearly show that in the Indian context, parents wanted little information to be shared with their children (65% did not want their children to be informed of the diagnosis; 60% did not want the child to be informed about side effects of therapy and especially about long term effects). There was even a stronger opinion about not involving children with decision-making (95% did not want them to involved with making any decision about the treatment; 100% did not want them to involved with making any decision about stopping curative treatment when such a situation arose).

These findings would be useful to health professionals in "forging an alliance with the family to facilitate communication" as Dr Seth says. They also offer us insight into the different attitudes and practices in India compared to the Western context, where patient autonomy is more visible.