Barriers to Early Diagnosis in India
There are several studies highlighting the barriers to diagnosis for children with cancers across India 18-21. One of the major contributors to treatment delay is lack of awareness of symptoms. This is especially complicated in the case of brain tumours, where most patients may present with non-specific symptoms such as headache, vomiting and seizures 21. As a result, a high proportion of cases may be misdiagnosed and treated as meningo-encephalitis due to a lack of easily available neuro-imaging and neurosurgical resources, which are primarily found in tertiary care institutions 22.
With 70% of the population situated in rural areas, lack of diagnostic neuroimaging facilities and establishment of referral pathways gravely delays diagnosis 23. In addition, patients faced several barriers in navigating through public hospitals as compared to private/ trusts 18. Poor infrastructure and staff shortages combined with an increasing demand from the population led to longer waiting times and eventually delayed diagnosis18.
Another cause of delay in diagnosis of cancer is the lack of education and the poor perception of the severity of the disease24. A cross-sectional study conducted in a tertiary centre in Odisha, India noted half of their patients had never heard of cancer before, and almost none of them were aware of the treatments available 25.
Since most tertiary centres located in metropolitan cities, the rural population must travel far distances to get diagnosed and treated26. A study across seven care facilities in India concluded that the median travel distance was 338km, with an average travel time of 9 hours 17. This increases the overall cost to families, as they would have to pay for transportation and accommodation costs. In addition, the breadwinner of the family might have to leave their job temporarily, leading to the loss of income and increased financial hardship for the family. Although National Schemes such as the Ayushman Bharat Program ensures coverage of cancer treatment for the poor, they do not address other financial burdens faced by families before they receive treatment27.