Cancer is India’s fourth biggest cause of death 1.15 million new cases were reported in 2019, with the rate anticipated to double by 2040 as a result of demographic shifts.  In India, cancer care is concentrated in tertiary hospitals and large cancer centers in metropolitan areas, where infrastructure and human resources enable the delivery of high-quality cancer care. Sadly, this is not true of smaller District level hospitals. 

Cancer carries the usual baggage of long drawn disease – Access to good healthcare is only one factor. Affordability is a major hurdle. The sheer unpredictability of outcome, the difficult treatment involved, toxicity of the offered “cure”, and the emotional toll on patient & family are significant factors to consider. The disease has significant physical, emotional, social, and economical consequences for those who are diagnosed, and their families. Their pre-diagnosis journey is also frequently preceded by a period of nonspecific symptoms. They are fortunate when these are discovered through routine screening. Patients are then thrown into a whirlwind of diagnostic testing, invasive procedures, and complicated treatments with little warning or opportunity to process their situation. 

During the unprecedented COVID-19 pandemic, the already existing issues prevailing in the cancer ecosystem got augmented causing further pain in the patient/caregiver units. COVID -19 called into question practically every aspect of health-care delivery, including family experiences. The pandemic worsened the situation for cancer patients, with infection control measures delaying diagnosis and treatment, pushing patients from curative to palliative care, and worsening COVID-19 outcomes for cancer patients infected with SARS-CoV2. The number of new patients registered declined by 54% between March 1 and May 31, 2020, from 112 270 to 51 760, while the number of patients who had follow-up visits decreased from 634 745 to 340 984. (46% reduction). 

The sweeping impact of the pandemic on patients’ health and well-being emphasized the need to enhance quality of care and improve clinical outcomes in order to ensure survivorship – where patients will have stronger self-efficacy and better self-management of their treatment when their priority treatment are met with an increased adherence to health promotion methods, less pain and symptom burden, and enhanced quality of life. This strategy must consider the complexity and the triple burden that patients face: the sickness itself, navigating the health system to get the required care, and maneuvering through that care. It must also consider the values and preferences in relation to treatment burden, taking note of the strain on patients as a result of care demands and the capacity of patients to respond to these demands. The unprecedented uncertainty surrounding the pandemic situation only emphasized the importance of developing individualized, effective, and patient-focused tactics in delivering prompt and quality cancer care. 

The irony of the situation was that tertiary care centres had indeed put in place steps to regulate crowding, and ensuring patient care for seriously ill patients with advanced disease. These steps were lost in the general panic.

Patient-centered care has been defined as care that is focused on the patient and their unique health care requirements- it changes the focus of health-system strengthening away from maximizing the number of services given toward maximizing the outcomes obtained based on patient need. This approach to care aims to encourage people to take an active role in their own treatment. It necessitates that physicians, radiologic technologists, and other health-care professionals improve their communication skills and effectively address patient demands. Patient-centered care also necessitates the health care professional act as patient advocates and strive to offer not just effective but also safe treatment. Doing so fosters a relationship between a patient and his or her physician by allowing for shared decision-making and ensuring that communication is sensitive to the patient’s needs and skills. 

Improving patient-based care can also provide greater insight into how we can improve the health-care system as a whole, including how to consider gender-related issues that are important to patients. For instance, women are often stigmatized by cancer, especially due to malignancies related with reproduction (e.g., breast cancer), or those which are socially associated with sexual indiscretions (e.g., cervical cancer).

Additionally, India’s evolving healthcare system will be required to manage patient complexity, with new and revised tactics including the creation of a patient awareness and navigation system that prededes treatment. Information. This will prove to be efficient and useful of for boosting cancer screening participation and ensuring adherence to follow-up tests. Similarly, Patients follow-up protocol can be improved with oral medication provided at local Health & Wellness Centres (Former PHCs), with Hospital visits to monitor drug toxicity reduced by a third. 

Logistic requirement needs such as cost of transport, & Accommodation in far off Centres, making alternate arrangements at home, are all deterrents in follow-up monitoring. Such structural and cultural barriers to care need to be addressed, as well as such as stressful interactions including managing health claims, coordination of care, discovering and understanding resources to administer self-care, in line with physician recommendations.

¹. Ranganathan, Priya, et al. “Impact of COVID-19 on cancer care in India: a cohort study.” The Lancet Oncology 22.7 (2021): 970-976.

Author

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Ms Jyotsna Govil, Chairperson, Indian Cancer Society