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.