'Lack of Awareness, Resources Major Factors in Low Rate of Childhood Cancer Survival'

While over three lakh children are diagnosed with cancer worldwide each year, 50,000 new childhood cancer cases are reported every year in India. Survival is a bigger challenge in India as many children with cancer are malnourished at diagnosis.

International Childhood Cancer Day, which is observed on February 15 every year, is aimed at 'Better Survival' this year. Early diagnosis and treatment coupled with awareness can avert long term impacts and increase survival rate in childhood cancer cases, paediatric oncologists told FactChecker.

We spoke to Dr Neema Bhat, paediatric oncologist and Bone Marrow Transplant (BMT) surgeon with Fortis Hospital, Bengaluru, Dr Girish Chinnaswamy, professor (Paediatric Oncology), Department of Medical Oncology at Tata Memorial Hospital in Mumbai and Dr Srinivas Chilukuri, Senior Consultant-Radiation Oncologist (Paediatric), Apollo Proton Cancer Centre, Chennai.

Edited Excerpts:

Around 20% of children with cancer survive in low-and middle-income countries, according to the World Health Organization. What is the survival rate in India and what are the major factors contributing to it?

NB: The survival rate for childhood cancer in India is approximately 25%-45% in different geographical areas. This is significantly lower than western countries and this is not because there aren't enough doctors or specialised centres in India. It is more due to the delay in diagnosis of cancer in children, especially from the rural and semi-urban areas. Children with cancers in the western countries are treated mostly at specialised hospitals by specialists trained in paediatric oncology, whereas in India, they are sometimes treated by other physicians or surgeons or alternative medicine experts.

SC: Firstly, the diagnosis is usually late in relatively advanced disease and thus, the possibility of cure is lower. This itself is due to lack of awareness, resources including finances and the need to travel to distant places for diagnostic tests. We have found that nearly 70% of children travel more than 500 km to avail the proton therapy facility. Secondly, the treatment compliance is significantly worse which leads to poorer outcomes. However, in small pockets, the outcome of children diagnosed and treated appropriately in high volume centres in India mirror that of the best centres in the west. That is why, there is a strong emphasis on treatment in high volume paediatric centres.

Physical strength to take cancer treatment must also play a role in how children respond to the cure. But, around 40% children with cancer are malnourished at diagnosis in India. How big a role does malnourishment play in survival here?

NB: Nutrition plays a key role in healing tissues from any kind of insult. Chemotherapy, radiation and surgery: all the modalities available to treat paediatric cancers can cause some damage to normal tissues in addition to curing cancer. Nutrition hence plays a very important role in healing the normal tissues. Maintaining normal blood counts is essential to avoid delays in chemotherapy to ensure a better chance at cure. This definitely requires nutrition adequately balanced in proteins, carbohydrates and micronutrients.

Since 80% of children abandon treatment due to financial constraints, alternative medicine, or misinformation that cancer is incurable, do access to proper diagnostic and treatment facilities and financial support play a role in the low detection rate?

NB: Where a person is born should not determine the rights to their cure from a disease. However, this is very true for childhood cancers in India as community awareness about childhood cancer and its curability is minimal among rural communities. Moreover, lack of resources and specialised centres in rural areas, which further cause delay in diagnosis and reduce possibility of cure.

GC: Many children abandon treatment or rather do not seek treatment at all since there is strong belief of incurability of cancer. Much of this perception is derived from personal experiences of adult cancer. Additionally, access to care is a significant problem since childhood cancer treatment is long and intense and hospital based. The logistics of moving to a place closer to cancer centre, loss of wages, uprooting family, belief in incurability all play a role in abandonment. Financial constraint is a problem too, but presently there are many government schemes, non-profits and donors that support childhood cancer care.

Dr Bhat, have you come across gender imbalance in childhood cancer diagnosis since approximately for every 5 boys diagnosed with cancer only 3 girls are diagnosed? What are the factors here?

NB: There has always been gender imbalance in not only the diagnosis, but also the treatment sought for cancer in children. Boys are 10% more likely to be diagnosed at an earlier stage of cancer as their symptoms are addressed on a priority basis and treatment is sought more persistently at better centres. Girls do not even get diagnosed with cancer due to a lower percentage of them reaching higher centres for diagnosis. The gender wise detection and treatment gap in India is in sharp contrast to that in developed economies where it is 1:1. Treatment refusal and abandonment (TRA) data was retrieved from a prospective treatment database maintained on a web-based data entry software (IndiaPod) from 2010-2015. There, 27,307 children were registered and of these, 18,496 were boys and 8,811 were girls with an overall M:F ratio of 2.1:1, which is significantly higher than the ratio of 1.2:1 in high-income countries.

How has the COVID-19 pandemic affected childhood cancer care in India?

SC: Firstly, lockdowns and restrictions on movement, combined with parents/guardians' fear of contracting COVID-19, prevented them from traveling to cancer centres for diagnosis, treatment and follow up. Secondly, some cancer centres were converted to COVID-19 care facilities with redeployment of hospital beds and staff, reducing the resources available for cancer care. This was further exacerbated by scarcity of personnel in hospitals. Finally, treatment regimens for cancer were modified or de-escalated to ameliorate the risk of an anticipated increase in mortality from COVID-19 in immunocompromised patients. From our own experience, it became evident during the initial phase of the pandemic that most children with cancer who contracted COVID-19 needed only a temporary deferral of their cancer therapy during the active symptomatic phase of SARS-CoV-2 infection, and in the vast majority of patients, treatment delays lasted only 2-4 weeks.

NB: Even children who had already been started on treatment or were on active chemotherapy have had their treatment delayed due to parents' hesitation to bring them to hospitals. This has, in turn, affected the diagnosis and outcomes further. A lot of children were diagnosed in a much more advanced stage. Additionally, the delay in availability of Covid vaccine for children has further caused more anxiety in parents.

According to a survey published in The Lancet Child and Adolescent Health Journal, 32% of hospitals saw a decrease in financial support and 19% in available beds. Have you faced such shortages in child cancer care?

NB: Redistribution of healthcare resources during the pandemic led to low bed availability, reluctance of volunteer blood donors caused an acute shortage of blood products and reduced contributions and social support initiatives due to financial uncertainty, have all played a role in the diagnosis and outcomes of paediatric cancers. Also, fewer events/gatherings to increase awareness of paediatric cancer in various communities, have further reduced the likelihood of timely diagnosis of cancer in children.

What are the major differences between cancer in adults and children?

NB: Most cancers in adults are secondary to their lifestyle choices or exposure to environmental toxins or carcinogens. Most childhood cancers are due to genetic mutations, only some of them are secondary to genetic (DNA) defects they might have inherited from their parents. Childhood cancers are definitely more responsive to treatment and hence have much better outcomes compared to cancer in adults.

GC: Many of the cancers in children are what are called embryonal tumors that start developing very early in life. Unlike adult cancers, where lifestyle and environment plays a role, there is no such influence in childhood cancer and genetics is most likely the cause. This, however, is not obvious in many situations. Childhood cancers respond very well to conventional chemotherapy unlike many adult cancers. Children can handle intense chemotherapy far more than adults. Survival of childhood cancer if treated appropriately is far higher than adult cancers.

SC: There are some childhood cancers that almost never occur in adults, and some cancers that affect adults, but virtually never occur in children. There are cancers that, while more common at one age than another, can affect both adults and children. With some exceptions, childhood cancers tend to respond better to certain treatments. This might be because of differences in the cancers themselves, as well as because children often get more intense treatments. Also, children usually don't have many of the other health problems that adults with cancer might have, which can often get worse with treatment.

Do you come across cases of children with cancer showing symptoms of depression?

NB: Despite the stress of paediatric cancer, most patients do not develop clinical depression. But support for mental health can help all patients and families cope with negative thoughts and emotions. Depression might look different in children and adolescents when compared to adults. Children and adolescents may express depression by being more irritable, angry, anxious, or defiant. They may also express more physical complaints than expected to be associated with the treatment or engage in risky behaviors. Younger children diagnosed with cancer are more likely to bounce back to a normal mental state as opposed to teens/adolescents as it is a well-established fact that children are more prone to depression post puberty.

What are the symptoms parents should look out for in children to facilitate early detection?

NB: Symptoms of cancer in children can be very varied depending on the type of cancer. The most common symptoms for parents to watch out for would be weight loss, reduced activity, recurrent fevers, pale appearance, lumps in the neck/abdomen, bony pains/swelling, change in gait or performance in school, early morning headaches with vomiting and vision disturbances.

GC: Most of the time its persistence of a common symptom which alerts the paediatrician to test for something more than a common illness like viral infection etc. It's important to have a continued follow up with the paediatrician in case any illness or symptoms persist for longer than expected.