Cancer in children: Diagnosis delayed is treatment denied, study calls for prompt action

While the Covid-19 pandemic last year forced millions of people in the country to stay at home, a couple lived for about eight months in a hospital room 450 km away from their hometowns in Jammu and Kashmir, waiting for a ‘miracle’.

The first signs of trouble appeared in October 2019. Their three-year-old son became ill and had a fever. The doctors told them it was probably typhoid fever, caused by a bacterial infection. Within a few days, their child recovered from that fight.

But it wasn’t long before the fever returned. This time, medical tests revealed that their son Divyansh, who his father Diljeet Palsar says was the most active child in his prep class, was suffering from something else, a more serious condition.

Diljeet Palsar, Anjana Rathore and their five-year-old son Divyansh. (Photo: Diljeet Palsar)

Concerned, Diljeet and his wife set out at 10 a.m. one evening in October and traveled up a bumpy hilly road from their hometown in Jammu and the Kishtwar district of Kashmir to a major hospital in the city of Jammu. But there were no beds available.

They drove on and reached the Dayanand Medical College and Hospital in Ludhiana in Punjab, where they would spend most of the next two years. On his fourth birthday, Divyansh was diagnosed with acute lymphoblastic leukemia (ALL), a type of blood cancer. EVERYTHING can move forward quickly. The disease requires urgent attention.

In India, nearly 77,000 children and teenagers (0-19 years) are diagnosed with cancer every year. A report from the Indian Council of Medical Research (ICMR) released last week said 7.9 percent of all cancers in India between 2012 and 2019 were found in children under 14.

DELAYED TREATMENT

And yet, according to the National Society for Childhood Cancer Cankids Kidscan, about 50 percent of children with cancer in India remain undiagnosed and have no access to treatment. Those who do have access to care often receive it at an advanced stage of the disease, when the chances of a cure are less.

A study of nearly 3,000 childhood cancer patients over two years in northern and eastern India revealed that it takes an average of 56 days from the onset of symptoms for a child with cancer to begin treatment in India.

In 25 percent of cases, it takes 112 days or nearly four months between the onset of symptoms and the start of treatment, according to the study sponsored by Cankids Kidscan.

What could happen during this two to four month delay?

According to Dr. Ramandeep Arora, who led the study, delaying each day may cause the disease to progress, grow and spread. “Once that happens, the patient needs more care, has less chance of recovery and more side effects of the treatment. In addition, the costs are piling up and so is the fear facing the family,” he said.

REASONS FOR DELAYED TREATMENT

According to the study, the delay in childhood cancer treatment can be divided into three categories. These are:

– patient interval (time before the patient approaches a healthcare provider)
– diagnostic interval (time between first presentation to a healthcare provider and diagnosis) and
– treatment interval (time between diagnosis and start of treatment).

The study found that both the mean patient interval and mean treatment interval are three days each.

However, the greatest delay occurs in the diagnosis phase. It takes a family, on average, 37 days to navigate primary and secondary health care before reaching a specialist hospital and receiving a diagnosis. This figure is anywhere in the range of 0 and 1,448 days, according to the study.

“The reasons for a major delay in the diagnosis phase are that families don’t have access to nearby facilities or a good enough transportation system, don’t have the financial resources, or just don’t know where to go. Few people know where to go for childhood cancer, and there is no one to give the signposts for the same,” said Dr. Ramandeep Arora.

“One of our survivors went to 22 health centers before reaching the right one,” said Poonam Bagai, founder and president of Cankids Kidscan.

There are 24 designated centers treating childhood cancer in the UK, said Dr. Arora. If a child has cancer, all the family needs to do is find the nearest center and go there.

Recognizing that India is a much larger country, Dr. Arora that if even one or two such centers were established in every state of India and a database was established for people to refer to to find where to go, the situation and survival outcomes for childhood cancer in India would greatly improve .

SO, WHAT SHOULD BE DONE?

The government should focus its resources and services on specific geographic areas without facilities, said Dr. Ramandeep Arora. This research, along with other studies, should be used to understand where the gaps in access to childhood cancer care are and how to fill them. In the next phase, the study will plot its data on a map of India, providing region-by-region data.

Poonam Bagai, Founder Chairman of Cankids Kidscan, said: “It was important for us to do this research to get real data and patient journey mapping so we can tell the National Health Mission and the central and state governments where the energy should be and what we should focus on.

“This will enable better programs and policies. The study highlights the need to map healthcare centers in each state with clearly defined referral routes and to raise awareness among healthcare professionals about how to diagnose and refer to. on pediatric cancer care and resource guides are made available to everyone so that families can have good access to care.”

Today Divyansh is in his seventh maintenance cycle and his results have been good so far. Just before he turns six, he knows all his medications and when to take them. He knows what he can and cannot eat and makes sure to wash his hands as he was taught when he was first diagnosed two years ago.

(Photo: Diljeet Palsar)

“He’s very brave. He never makes us feel the magnitude of the problem,” Divyansh’s father Diljeet Palsar told India Today.

Diljeet believes that the support and prayers of people from different walks of life in his hometown of Divyansh have helped him regain his health. That, and the fact that Divyansh was diagnosed and started treatment within a month of the onset of his symptoms. Avoiding delays can make all the difference, Diljeet said.

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