Paediatric cancers in India may be killing nearly double the number of children in India compared to developed countries due to issues such as delay in diagnosis and lack of access to treatment, lack of skilled workforce, treatment inertia and avoidable relapse.
A report by the National Centre for Disease Informatics and Research under the Indian Council of Medical Research, in collaboration with the World Health Organisation-India has said that the five-year survival rate of paediatric cancer patients in India is just about 40 per cent.
As per WHO estimates, in high-income countries, on the other hand, more than 80 percent of cancer cases in kids can be treated and cured.
The most common primary sites of pediatric cancers include the blood, bone and brain.
Some of the most common malignancies include leukaemia, lymphoma, central nervous system (CNS) tumours like glioma and medulloblastoma, tumours of the bone and soft tissue like Ewing’s sarcoma, rhabdomyosarcoma and “blastomas” that affect different solid organs.
The NCDIR report titled “A Situational Analysis of Childhood Cancer Care Services in India 2022”, based on a survey in 137 tertiary and 92 secondary care hospitals across 30 states and Union Territories, has been brought out to identify gaps in paediatric cancer care in India that may aid improve outcomes in future.
The latest ICMR-NCDIR National Cancer Registry Report 2021 showed that childhood cancers, in the 0-14-year age group, accounted for 4 percent of all cancers recorded between 2012-2019 in the country.
“Childhood cancers, which form about 5 percent of all cancers, if caught early are amongst the most treatable of all cancers,” said senior oncologist Dr Ravi Mehrotra, commenting on the findings of the report.
“The lack of a formal national childhood cancer plan in addition to nearly half of all these cancers remaining undetected as well as inadequate linkages of the primary physicians to tertiary care health centres stand out as pressing priorities,” added Mehrotra who has headed ICMR’s National Institute for Cancer Prevention and Research in the past.
The report also says that shockingly, nearly 49 percent of paediatric cancers in India remain undiagnosed.
“It’s important to fill this gap and patients should be referred to a qualified paediatric oncologist the soonest,” said Dr Vikas Dua, director, paediatric haematology, haemato - oncology & bone marrow transplant with Fortis Memorial Research Institute in Gurugram.
Importantly, the latest report has also underlined that the delivery of childhood cancer care services at over half of the tertiary hospitals was impacted by the Covid-19 pandemic, resulting in a decreased diagnosis of new pediatric cases in a majority of the hospitals and increased rates of treatment abandonment.
Public, private - both doing badly
The survey found that over two-thirds of the government tertiary hospitals had referral linkages with lower-tier non-childhood cancer-treating facilities; however, such links were seen in less than half (45.7 percent) of the private tertiary hospitals.
Also, childhood cancer care services were provided at over one-third (39.1 percent) of the Secondary level hospitals, which was higher in private (56.5 percent) than public (32.8 percent) hospitals.
However, a dedicated paediatric oncology department was available in less than half of the public and private tertiary hospitals and though the majority of the tertiary level hospitals had supportive care facilities, facilities for hospice care were available in less than half of the hospitals.
The survey also found that only 35 per cent of the private hospitals had a multidisciplinary team approach for childhood cancer treatment.
It also underlined that while 80 percent of the tertiary hospitals had facilities for CT scans, MRI and ultrasonography; the availability of bone scans and PET scans was lower, especially in public sector hospitals.
Shockingly, less than a quarter (20.8 percent) of the public hospitals had facilities for Haemopoietic Stem Cell Transplantation (HSCT) compared to half of the private hospitals (54.3 percent).
Acute crisis of specialised manpower
According to the report, at public tertiary hospitals, less than half of the hospitals had a pediatric oncologist (48 percent), pediatric oncosurgeon (14.2 percent), pediatric intensivist (38.9 percent), medical oncologist (46.7 percent) and palliative care physician (37.6 percent).
Palliative care and nurses specialised in pediatric cancer were available in less than 50 percent of the public and private tertiary hospitals.
Is Ayushman Bharat not good enough?
The report noted that “the most frequent challenge patients and their caregivers faced regarding treatment was treatment denial and treatment abandonment, for which financial constraints were the most commonly cited reason.”
This is despite the fact the most commonly adopted financing mechanism comprises the Ayushman Bharat (Pradhan Mantri Jan Aarogya Yojana) scheme at public tertiary level hospitals and secondary level public hospitals and state-specific schemes at private tertiary hospitals.
Under AB-PMJAY, nearly 50 crore Indians belonging to the poorest households are offered hospitalisation benefits of Rs 5 lakh for secondary and tertiary healthcare.
Experts such as Mehrotra point out that a key reason for the low survival rate due to childhood cancer may be financial toxicity, largely due to huge out-of-pocket expenditure on treatment.
“In spite of the Ayushman Bharat and some state insurance schemes, a large chunk of the population is still left out,” he said.
Based on the findings, the NCDIR report has reiterated a skewing in the availability of childhood cancer care services at the tertiary level of health care, saying that most childhood cancers are associated with non-modifiable risk factors.
“The key to a better prognosis and favourable outcomes is early and accurate diagnosis and timely initiation of effective treatment,” it adds.
The need of the hour is to formulate a childhood cancer policy that will enable timely diagnosis, treatment, supportive care and follow-up through well-defined care pathways, the report also notes.
Currently, the national-level programmes and policies mainly focus on adult cancer and related cancer risk factors primarily implemented through the National Prevention and Control of Cancer, Diabetes, Cardiovascular Disease and Stroke.
There is, however, a need for a well-defined evidence-based national-level policy dedicated to childhood cancer, the latest report has said.