Twin hurdles in cancer survival data hunt

Twin hurdles in cancer survival data hunt

Hospital-hopping by patients and inadequate resources have hobbled government efforts to determine what proportion of patients survive cancer in India, although 27 centres are operating nationwide to assess the magnitude and patterns of cancer, researchers have said.

Only four among the 27 cancer registries run by the Indian Council of Medical Research (ICMR) were able to provide patients’ survival data to an international research initiative to determine how cancer survival figures vary across the world. The findings were published on Tuesday.

The four cancer registries — in Assam, Kerala, Sikkim, and Tamil Nadu — that contributed to the global study represented a cumulative local population of 5.8 million, or less than 0.5 per cent of India’s population, scientists associated with the study said.

The study that drew on cancer survival data from over 270 registries from 67 developed and developing countries had covered 18 per cent of the global population with country figures ranging from 100 per cent in several developed countries to 5 per cent in Brazil, 2.8 per cent in China, and 0.9 per cent in Russia.

“It is such a pity — the data from India have lots of gaps,” said Michel Coleman, professor of epidemiology at the London School of Hygiene and Tropical Medicine in the UK who led the study published in the journal, Lancet Oncology.

While the ICMR cancer registries — many of them operating for over two decades —have successfully been able to assess the magnitude of cancer as well as patterns of specific cancers in different parts of the country, doctors who manage the registries say tracking survival figures is challenging.

“Patients often move from hospital to hospital and many don’t return for follow-ups,” said Pramod Kumar Jhulka, professor of oncology at the All India Institute of Medical Sciences, New Delhi, and the head of the cancer registry in Delhi monitoring cancer across the National Capital Region.

Senior oncologists say regular follow-up of cancer patients is important for individual patients as well as to help monitor treatment outcomes and tailor standard treatment protocols suitable for patients in India. “Survival data will help us determine the impact of new anti-cancer drugs,” Jhulka said.

Survival figures from cancer are typically defined as the proportion of patients who survive five years after first diagnosis. Oncologists in India say most patients in India are diagnosed in the late stages in which survival rates are lower.

“Unfortunately we see this 80:20 figures in India — 80 per cent of patients get diagnosed in stages when survival rates are only 20 per cent,” said G.K. Rath, the head of the AIIMS Rotary Cancer Institute.

The study coordinated by Coleman tried to determine survival rates in cancers of the breast, cervix, colon, lung, liver, ovary, rectum, prostate, stomach and leukaemia. The limited data contributed by the four Indian registries suggest that survival from breast cancer in India has increased by about 12 per cent between the periods 1995-99 and 2005-2009. But India’s 60 per cent survival rate in breast cancer during 2005-09 was lower than the 88 per cent survival rate in the US.

“This is not really surprising — the lower survival rates could be attributed to a combination of factors, including late diagnosis and poor access to treatment which would also show up with other diseases,” said a senior oncologist in one of the registries.

The staff and funding available with the registries make it difficult to track all documented patients, said a senior scientist associated with the study.

“But only such population-based cancer registries can provide robust evidence to evaluate whether better access to diagnosis and treatment is producing better cancer outcomes,” the scientist said.

A senior ICMR official said the registries have initiated a study to determine survival rates among patients with cancers of the breast, cervix, and head and neck.

“We hope to release preliminary data from this study shortly,” said A. Nandkumar, director of the National Cancer Registry Programme, Bangalore.