Discussion
Data on the spectrum of CNS tumors remains to be consistent with studies
in India and in the West. Medulloblastoma, low- grade glioma and
ependymoma are the most common CNS tumors. However, very few optic
pathway tumors were diagnosed, as compared to the UK, where optic
pathway tumors make up 5.2% of all tumors. A possible explanation for
this could be that these tumors are diagnosed and treated elsewhere, for
example by ophthalmologists, reflecting the fragmented nature of care in
India. Furthermore, this study detected a greater proportion of high
grade/ metastatic tumors compared to low grade tumors. Tumors that did
not need any form of treatment or chemotherapy were not reported in this
study.
Low-grade tumors have significantly higher TDI than high grade tumors.
This is consistent with past research, which concluded that aggressive
tumors had relatively shorter TDIs 29. This is due to
the rapid onset of symptoms, leading to a quicker diagnosis. On the
other hand, slow growing tumors take longer to be diagnosed and hence
are identified at an advanced stage. Low-grade gliomas were seen to have
one of the highest TDIs in the UK and South India, where the SI was
twice as long as the PI. This could possibly be due to lack of proper
referral pathways or the failure to detect signs and symptoms as being
related to a brain tumour by the initial HCPs.
Tumours located on the midline had the lowest TDI of 2.1 weeks, which is
strikingly different to the UK data which concluded that anatomically
midline tumors were associated with longer TDIs (Table 2). Inversely,
cerebellar tumors had one of the longest TDI of a median of 4.1 weeks,
whereas cerebellar tumors were seen to have one of the shortest TDIs of
7.4 weeks. Whilst we cannot ascertain the reason behind this
discrepancy, we will review this in future surveys. Table 2 shows the
differences between TDIs and PIs the HeadSmart data in the UK and this
study findings based on tumour type.
All patients received a Magnetic Resonance Imaging (MRI) scan the same
day they arrived at the hospital, which indicates good imaging
infrastructure in the specialist centres. The age-specific differences
in TDI are interesting. Children <5 years of age were noted to
have relatively short TDI, but longer PI. This could be explained by the
inability of young children to clearly express how they are feeling and
can often lead to a substantial delay. Older children aged 12 and above
were seen to have the highest TDI, with a significantly longer SI.
Adolescent patients are present distinct psychological and physiological
challenges that can lead to certain signs and symptoms going undetected
and this is in keeping with previous studies
Patients who lived in the city had a significantly shorter TDI, PI and
SI as compared to patients who lived in villages. However, the
correlation between distance from home and hospital where the first
diagnosis was made is a bit unclear. The risk of visiting more HCPs
prior to diagnosis increases with distance as patients living more than
20km away from the hospital are 8.6 times more likely to have visited
more HCP prior to diagnosis.
Signs and symptoms are consistent with UK data. Special consideration
must be given to recognizing motor and visual signs. Earlier studies
indicate the difficulty of assessing these signs in children.
Furthermore, behavioural signs such as lethargy are also hard to assess,
but most also be given importance as they are the most common
behavioural sign of tumour 12. A further study on the
most common signs and symptoms presented by specific tumors in India
could help raise awareness to HCPs and could aid in reducing SI for some
tumors.
Since most of the data was collected from retrospective notes from the
doctors, there is likely to be some recall bias. Since most hospitals in
this experiment were privately owned or run by Non- Governmental
Organizations (NGOs), it does not account for cases diagnosed at public
institutions. There were also social factors where the patients may not
have wanted their doctor to know that they visited more doctors thereby
under-reporting HCPs seen.
A prospective study or data collection from cancer registry would be the
ideal way obtaining this type of data. However, there is no national
registry data that contains this information and this survey provides
key baseline data upon which further awareness programmes to promote
early diagnosis can be evaluated.
The strategies needed to overcome identified barriers should involve
proper education and training of healthcare workers and involve
establishing clear referral pathways. It is crucial for all
paediatricians and primary healthcare providers to be sensitized to
signs of cancer in children. There have been initiatives in India to aid
this. A National Training Project under the Indian Association of
Paediatrics IAP PHO Chapter has played an important role in promoting
early detection and referral for paediatric cancer cases30. HCPs not only should be trained but should also
have guidelines that can aid them in diagnosing brain cancers earlier.
HeadSmart is a campaign established in the UK, which assists HCPs in the
assessment of children who may have brain tumours14.
This guideline has drastically helped reduce diagnostic intervals of
paediatric brain cancers in the UK. A similar guideline tailored to the
Indian system can greatly benefit HCPs in India.
Another strategy to combat delay in diagnosis is to establish a clear
referral network through government health care policies. Current
protocols such as MCP-841 has improved overall survival of Acute
Lymphocytic Leukaemia (ALL) 31. Establishment of a
proper referral pathway for paediatric brain cancers can significantly
benefit patients by reducing patient and diagnostic intervals, which can
lead to quicker treatment.
Additionally, more resources should be invested to incorporate holistic
care for all patients. A study in TATA Memorial Hospital concluded that
holistic patient support, which involved Accommodation, Nutritional and
Educational support, made a measurable impact on children with
haematological malignancies32. This can aid in
reducing the financial burden and help prevent treatment abandonment.
Overall, the diagnostic intervals for paediatric brain tumors were
comparable to data in the UK. Moreover, all patients received an MRI
within a day, indicating that infrastructure was not a barrier in this
study. However, many low-grade and optic pathway tumour were unaccounted
for. A possible explanation could be that optic pathway tumour could
have been treated at an ophthalmologist setting. Tamil Nadu has one of
the best healthcare systems in India, meaning that the data presented
cannot be extrapolated to other states or to the whole country.
Extending this methodology to other areas with poorer healthcare
provisions, could provide a better understanding of diagnostic intervals
at a national level.