Financial, logistical support reduce paediatric cancer treatment abandonment rates: TMH analysis
A holistic cancer care approach that includes financial, logistical, nutritional and treatment support has considerably brought down the treatment abandonment rate among paediatric cancer patients at the Parel’s Tata Memorial Hospital (TMH)
A holistic cancer care approach that includes financial, logistical, nutritional and treatment support has considerably brought down the treatment abandonment rate among paediatric cancer patients at the Parel’s Tata Memorial Hospital (TMH).
Analysis of 10-year patient data, carried out by the hospital, has revealed that the treatment abandonment rate dropped from 10.4% in 2010 to 3.7% in 2020. Preliminary data compiled up to June this year showed that the abandonment rate was around 2.4%.
The hospital defines abandoned treatment as failure to begin cancer-directed treatment or to have started treatment but subsequently discontinued it at least for four weeks. Before 2010, the treatment dropouts were estimated to be more than 20%. “Financial constraints and logistical issues such as accommodation in Mumbai were among the topmost reasons for abandoning cancer treatment,” said medical oncologist Dr Shripad Banavali, who is also the director of academics at the TMH. “We probed all these reasons and decided to tackle every aspect that prompted parents to discontinue their child’s treatment mid-way or not initiate the treatment at all,” he said.
In 2009, an internal audit conducted by the TMH found that nearly 70% of paediatric patients coming to the facility were from a lower socioeconomic background, about 60% of the parents were illiterate and almost 90% of the patients travelled from long distances for treatment. Of the 1400 paediatric patients who came to TMH in 2009, over 20% had abandoned treatment, the audit revealed.
A telephonic audit of families, who abandoned treatment, revealed that lack of quality and affordable housing in Mumbai, travel from long distances, cost of food and local travel, loss of income, lack of family donors for blood components, misplaced faith in alternative medicine, and a sense of hopelessness regarding the curability of cancers were among the key reasons.
Based on the findings of the audit, the hospital set up the Improving Paediatric Cancer Care and Treatment (ImPaCCT) Foundation in 2010 to ensure that no child coming to TMH goes without treatment or leaves treatment mid-way. “To start with, we got some funds from a United States-based organisation to hire support staff,” said Shalini Jatia, secretary of ImPaCCT Foundation.
“We hired data managers, paediatric social workers and formed a paediatric social support group which included a network of hospital staff, NGO’s among others and worked out a system wherein all paediatric cancer patients are covered for everything right from the time they arrive at the hospital,” said Jatia, adding that from smaller contributions in the initial years, the foundation now raises nearly ₹30 crore to ₹35 crore annually.
The foundation leverages funds through four sources- corporates, government, non-profits and individual donors. It covers accommodation for every paediatric patient enrolling in the general category and their parents or caregivers and offers meals and snacks to minimise the out-of-pocket expenditure. The accommodation given to the children is commonly in non-profit run homes, guest houses etc, that are connected to the hospital through shuttle services to avoid travel expenditure.
Treatment time for most childhood cancers ranges from six months to 18 months. Blood cancers — leukaemias and lymphomas — and brain tumours are among the commonest childhood cancers. “With timely and complete treatment, the outcomes of childhood cancers are extremely good,” said Dr Girish Chinnaswamy, head of paediatric oncology at TMH. “Unfortunately, those who abandon the treatment suffer from advanced disease and eventually succumb,” he said.
An estimated 60,000 children are diagnosed with cancers in India every year. “In the West, the childhood cancer cure rates are nearly 85%, because almost every patient gets treatment. In India, the cure rates would be only about 35% to 45% as a large number of patients don’t get treatment,” said Dr Chinnaswamy adding that TMH has a 75% childhood cancer cure rate.
The ImPaCCT Foundation’s robust abandonment tracking system involves data managers and social workers closely following up with the child’s parents and caregivers. The team constantly counsels them, to ensure that they come back for treatment. During the pandemic, the hospital staff was actively in touch with patients on phone and WhatsApp and many patients were encouraged to get blood tests and other basic examinations done locally.
“A similar holistic model can be replicated in adult cancer patients too, as the treatment abandonment rate among adults is likely to be much higher,” said Dr Banavali.
The TMH is the country’s biggest cancer facility and it receives a large pool of patients under one roof. Over the years, the hospital has worked towards decentralising cancer care by starting similar centres in other parts of the country such as Varanasi, Sangrur, Guwahati among other cities. “There is a definite need to develop more cancer centres across the country, and decentralise the treatment options further so that people don’t have to travel all the way to Mumbai,” said Soumitra Ghosh, associate professor at the Centre for Health Policy, Planning and Management, Tata Institute of Social Sciences. “When patients have treatment options in their own states, their out of pocket expenditure reduces and they are more likely to continue the treatment,” he said.