Radiation Therapy is fundamental to tumour control and cure. For a wide range of tumours, we have advanced to relevant outcomes with a fairly satisfactory quality of life. India offers varying themes. We have a flagship proton therapy centre with most centres still treating majority of the outpatients on cobalt machines. Although I practise conformal therapies and stereotactic procedures but having trained and seen the diverse healthcare centres, I am mindful of the complete gamut of treatment continuum.
Radiation Oncologists have been aware of side effects of treatment from the earlier orthovoltage era and it has transformed to current understanding about patient reported outcomes and quality of life. As our knowledge has grown towards the underlying genetic origins of radiation response, it is a far cry from routine clinical practise as majority of cancer advancements have not translated to clinics.
The costs of treatment are demanding, as cancer has affected economically productive age groups across geographies. Policy response towards cancer management is ineffective as we cope with our burgeoning population. While western countries see their population as a demographic dividend, it is a different story in India as the healthcare suffers from duality (at the federal and provincial level). We still lack meaningful trials with end points of what constitutes a salutary end point- survival or survival with some side effects.
The quality of life depends on socio-cultural contexts wherein we lose the focus on the patient’s response towards illness. Anxiety is ubiquitous as a mortal response, but coping up with the same depends on the system of healthcare and its provisions. Presently, it is challenging to keep patients motivated towards basic skin care/ oral health or diet wherein it is problematic to break down their preconceived notions. Although it is simpler to access opioids (as part of the pain management), it is problematic to adjudge the stepping up of WHO pain ladder management as their pain response is usually coloured by their treatment perceptions.
One of the major pain points in developing countries is lack of electronic medical records and portability of clinical notes. Niti Aayog (or translated to “Planning Commission) has examined this idea with various stakeholders in both public and private sector, It continues a challenge to realize it. The data protection bill is pending that would make it liable for the stakeholders if it leaks as health data is marked as “critical asset”. Data localization norms are still under consideration leading to acrimonious debates with an overarching government access.
The way out is to spell out the health outcomes from therapeutic interventions; specifically for chronic diseases like cancer. We need to look beyond survival and determine socio-culturally sensitive end points. A mobile application presents an attractive solution to “track users” but has its own complex set of challenges, principally in the user interface. Most users are unaware of its utility and would
The European quality of life charts would be grossly inapplicable locally. Besides recall bias, an onerous patient rush in outpatient departments would deem it impossible except for the controlled conditions. Besides, smoking cessation is a challenging scenario as tobacco substitutes are more expensive than the tobacco itself!
Finally- clinical stage at presentation. Most patients usually present as locally advanced tumours that necessitates larger clinical volumes. It is uncommon to see an early stage head and neck cancer and bulk of tumours are usually in stage III and IV. I’d also illustrate an example of carcinoma cervix treated about 14 years back at an outside institution. She had presented with persistent pain in the lower abdomen, and she had been cycling through various specialities. Luckily for her, the attending gynaecologist referred her to us wherein we got the FDG-PET scan and MRI Pelvis with contrast done. While the primary was cured, she had extensive fatty changes in the pelvis with uterine ballotment because of pyometra. Clinically, she had a severely stenosed vagina that made assessment of the para difficult. Her right ureter was “trapped” in the fatty changes (extensive fibrosis)- she had been treated on Cobalt by AP/PA. These are classical issues that I face locally and would make routine assessments very challenging.
I have touched on the health outcomes for a commissioned article (though not specifically relating to cancer) but as an adjunct towards gearing our health policy for more meaningful outcomes. We need a broad overview of our treatment protocols and shift to more conformal techniques. While a long shot but the practitioners at the peripheral level need to be aware of potential issues that may develop in long-term survivors and its appropriate management.