February 15 was marked as International Childhood Cancer Day. Contrary to the popular belief, pediatric cancer or childhood cancer is very much prevalent in India. The World Health Organisation says, India is home to at least 20% of the global childhood cancer burden, with nearly 75,000 kids getting cancer every year. Though India has made significant progress in ensuring childhood cancer services in the last few years with financial aid being doled out through Ayushmaan Bharat scheme, the outcome still remains unimpressive as compared to global standards. This is mainly due to delay in recognition, diagnosis and cure, say doctors. ARCHANA JYOTI reports.
Various reports assert that the available data shows lower incidence of childhood cancer incidence especially in leukaemia and CNS tumours which may suggest poor awareness of caregivers and delayed diagnosis with many "missed cases". Dr Sameer Bakhshi, from Institute Rotary Cancer Hospital India, AIIMS, Delhi attributes this to significant barriers in early diagnosis, inability to accurately diagnose, poor access to health care facilities, and inability to initiate treatment promptly.
In a study ‘Childhood Cancer in India’, published in ScienceDirect, he expressed concern that incidence data are also skewed towards male preponderance which suggests gender bias in seeking healthcare. “The childhood cancer services in India are predominantly restricted to a few tertiary care centres in major cities. The outcome in major groups of cancer is complicated by delayed and more advanced stages of presentation and poor supportive care during intensive treatment. Treatment refusal and abandonment due to stigma attached to the disease remains major barriers,” he says.
The health expert notes that the situation can be improved by ensuring there is an enhanced awareness about the problem and ensuring access to quality healthcare for all.
"Another major problem is that childhood cancer care services are currently available only at tertiary health centres in major cities, forcing a majority of India to depend on these few centres."
SYMPTOMS
Symptoms of childhood cancers generally include unexplained weight loss, persistent pain in bone, joints or legs, lumps/mass in the abdomen, chest, neck or pelvis, excessive bruising or bleeding, prolonged fatigue, whitish appearance of the pupil etc.
Treatment for such cancers would include surgery, chemotherapy, radiotherapy, or a combination depending on the nature of malignancy and its stage of presentation. Doctors say focus should be on improving awareness about childhood cancers and its symptoms among parents and healthcare providers and improving healthcare access to remote areas. India needs to have a policy framework specifically to address childhood cancer care, according to the health experts.
Dr Shuvadeep Ganguly, Department of Medical Oncology, IRCH, AIIMS, Delhi who is co-author of the study along with Dr Bakshi calls for a more intensive protocol that may result in decreasing relapse rate but the increased incidence of toxicity, which is more common in presence of malnutrition and absence of proper support structure, may offset survival advantage. “Hence, a pragmatic balance is necessary in adopting uniform treatment protocols along with strengthening of supportive care logistics. It is also important to focus on proper pretreatment counselling allaying anxiety and undue fear regarding diagnosis of cancer so that drop-outs are reduced, and effective telephonic tracking mechanism to ensure that each child receives complete care,” he says as per the study.
Since, the cost of cancer care is often financially prohibitive due to significant out of pocket expenditure, the introduction of the National Health Protection Scheme under Ayushman Bharat Program by the Government is likely to ensure healthcare access for the financially needy. “The availability of anti-neoplastic drugs for childhood cancer is still low in both public and private healthcare pharmacies and also remains unaffordable; streamlining medicine procurement and promotion of health insurance is being done by the government to address the same,” notes the study.
The authors also point out that self-reported confidence of undergraduate students in suspecting and referring to childhood cancer cases is lacking even after their paediatric clinical training which suggests a need for more focus on childhood cancer in training curricula. “The regular training of paediatricians through National Training Project in Practical Paediatric Oncology under IAP PHO Chapter is an important initiative which will promote early recognition and referral of childhood cancer cases”
Also, the development of training programs for pediatric oncology nursing as well as other paramedical disciplines is additionally required for dissemination of such services, they say.
If all these are realized then the WHO Global Initiative for Childhood Cancer which was launched in September 2018 setting a target of achieving at least 60 per cent survival for all children by 2030 will be a reality for India too.
ICMR SURVEY ON CHILDHOOD CANCER 2022
Results of a survey published by the Indian Council of Medical Research in September 2022 shows that childhood cancers comprise four per cent of all reported cancers in the national cancer registry programme.
These cancer patients face delayed diagnosis resulting in delayed treatment, incomplete treatment and therefore, low survival rate. As national health programmes and policies are focused on cancers in adults, the ICMR report suggested that specialised policy is developed to address childhood cancer.
The survey showed that the country has just half of the healthcare facilities needed to treat and take care of these children. For example, while only 41.6 per cent of the sampled tertiary level public hospitals in the country had a dedicated pediatric oncology department, 48.8% of private hospitals had these facilities.
The maximum (64%) were available in charitable hospitals. Less than 50% of the tertiary hospitals provided hospice care, play therapy and parental support groups and less than 35% had provision for diagnostics such as Postrom Emission Tomography-Computerise Tomography, bone scan and MIBG scan.
There is very little understanding on what causes cancer in children. Some chronic infections, such as HIV, Epstein-Barr virus and malaria, are risk factors for childhood cancer. While some 10% of all children with cancer have a predisposition because of genetic factors, more research is needed to identify the triggers for the remaining.
Most children with cancer suffer from leukemia (approximately 33 per cent) followed by brain tumors (around 20 per cent) and lymphomas (some 11 per cent).
Fewer children in India survive cancer compared to developed countries. While less than 30% of cancer patients in India and other developing countries survive, the mortality is just around 20 per cent in developed countries.
Delhi has the highest rate of childhood cancers among boys in the age group of 0-14 years in Asia, recently published data from the National Cancer Registry has shown.
Out of every one million boys aged upto 14 years living in Delhi, 203.1 suffer cancer, the data report, that took into account the cancer landscape in India’s select places from 2012-2016, showed.
In the age group of 0-19 years, Delhi trails behind China’s Jiangmen — the highest cancer incidence city among boys in Asia — only by a difference of six cases per million population.
The report includes figures from 28 population-based cancer registries (PBCR) and 58 hospital-based cancer registries (HBCR) in India.
Boys aged upto 14 years contributed 4.7% of all cancer cases in Delhi. The corresponding figure for the 0-19 years age group is 6.3 per cent.
Delhi, thus, topped the list of 28 PBCRs in terms of how many childhood cancers were registered among all cancers. The national capital was followed by the districts of Aurangabad (Maharashtra), Hyderabad (Telangana) and Wardha (Maharashtra) as well as the entire state of Manipur.
Among girls, the trend was not much different. Delhi was followed by Barshi Rural and Aurangabad in Maharashtra and the states of Manipur and Mizoram.
Delhi’s incidence rate of childhood cancers among boys in the 0-14 age group was 203.1 per million population; again, the highest among all the PBCRs.
It was followed by Chennai, Aizawl, Thiruvananthapuram, Patiala, Kollam districts and Bengaluru. The order of PBCRs in this category is not different in the last cancer registry figures. However, the incidence has come down a bit in all these cities except for a couple of outliers.
