Navigating the Unknown: Ms. Nishu Goel’s Insights for Newly Diagnosed Cancer Patients at Cancer Conclave 2024

Thank you Vivek for inviting me. It’s great to be part of the Cancer Conclave 2024 with CRSF, Uhapo, and Utsaah Foundation. And big thanks to Dr. Kumar Prabhash and Dr. Vijay Patil for organizing this, and of course to you Vivek. The best part of this collaboration is that we come together to discuss how these clinicians, patient advocates, and support groups can be of great help in addressing the challenges of newly diagnosed cancer patients. That’s a big step forward. So, without further ado, I’ll start my presentation on navigating a cancer diagnosis.

Among cancer patients, 2 main concerns often arise: “Why Me?” and “Will I survive?” Patients and their caregivers seek reasons to understand if they will make it through this difficult situation.

To address these concerns and focus on receiving timely treatment, we need to find ways to overcome obstacles. This involves identifying agencies and resources that can help mitigate problems that may arise.

Firstly, let me introduce you to the issues within the healthcare system. Vandana discussed the challenges faced by high-income countries, as well as the accessibility, resource, and affordability issues present in low and medium-income countries. It’s crucial to seek out cancer care facilities and continue treatment despite these challenges.

The Tata Memorial Centre has established around 9 institutes across the country and coordinates with National Cancer Grid (NCG) members to provide standardized and evidence-based care. Initiatives like the medical social worker department, which dates back to 1941, exemplify the efforts to improve cancer management both nationally and globally. These initiatives have implemented Standard Operating Procedures (SOPs) to ensure quality care across different regions.

• Health Equity 

Encompasses ensuring equal access to high-quality cancer care and support services, regardless of socioeconomic status, geographic location, race, ethnicity, or other social determinants of health. Here’s how accessibility, resource availability, infrastructure, and affordability play a role in promoting health equity for cancer patients:

• Accessibility – Cancer patients should have equitable access to cancer screening, early detection, diagnosis, treatment, and supportive care services. Barriers to accessibility, such as lack of transportation, long travel distances to treatment centers, and limited availability of healthcare providers specializing in cancer care, must be addressed. Telemedicine and mobile health units can help improve access to cancer care, particularly in rural or underserved areas.
• Resource and Infrastructure – Disparities in resource allocation and healthcare infrastructure can affect cancer outcomes. Access to state-of-the-art cancer treatment facilities, equipment, medical technology, and skilled healthcare professionals must be equitable across all communities. Investments in building and upgrading healthcare infrastructure, particularly in underserved regions, are essential to ensure that cancer patients receive timely and effective care.
• Affordability – Cancer treatment can be financially burdensome, leading to disparities in access to care. High costs of cancer drugs, treatment procedures, and supportive care services can pose significant barriers, particularly for individuals without adequate health insurance coverage or financial resources. Affordable health insurance options, financial assistance programs, and policies to reduce out-of-pocket costs for cancer patients, such as caps on co-payments and deductibles, are essential for promoting equity in cancer care.

Efforts to address health equities for cancer patients should focus on improving accessibility, resource allocation, infrastructure development, and affordability of cancer care services. Collaborative approaches involving healthcare providers, policymakers, advocacy organizations, and community stakeholders are necessary to ensure that all cancer patients have equitable access to the care and support they need to achieve the best possible outcomes.

1. Barriers To Care 

 The obstacles or challenges that impede access to timely and effective cancer prevention, diagnosis, treatment, and supportive care services. Some common cancer care barrier services include –

Lack of awareness – Many people may not be aware of the signs and symptoms of cancer, leading to delayed diagnosis and treatment initiation.

Fear and anxiety – The fear of cancer diagnosis, treatment side effects, and uncertainty about the future can prevent individuals from seeking or adhering to recommended care.

Logistics (Accommodation, and Funding) – Issues such as lack of transportation, inability to afford accommodation near treatment centers, and financial constraints can hinder access to cancer care.

Lack of Social Support – Lack of emotional, practical, or financial support from family, friends, or community can make coping with cancer and navigating the healthcare system more challenging.

Attitudes, beliefs, and perceptions – Cultural beliefs, stigma associated with cancer, and misconceptions about treatment effectiveness can deter individuals from seeking appropriate care.

Low health literacy – Limited understanding of health information, medical terminology, and treatment options can impede decision-making and adherence to treatment plans.

Poor health-seeking behavior – Some individuals may delay seeking medical attention, ignore symptoms, or avoid screening due to various reasons such as denial, fear, or mistrust of the healthcare system.

Addressing these barriers requires a multi-faceted approach involving education, community outreach, psychosocial support, policy changes, and improvements in healthcare infrastructure to ensure that all individuals have equal access to quality cancer care.

• Poor Health Outcomes

Poor health outcomes in cancer care can stem from various factors, including deficiencies in preventive measures, late-stage presentation of the disease, attrition, and dropout from treatment, and gaps in the care continuum. Let’s explore each of these factors –

• Poor preventive measures – Inadequate emphasis on cancer prevention strategies, such as screening programs, lifestyle modifications, and vaccination against cancer-causing viruses (e.g., HPV vaccination for cervical cancer prevention), can lead to higher rates of cancer incidence and mortality. Lack of awareness about preventive measures and limited access to screening services, particularly among underserved populations, contribute to poor health outcomes.
  
• Late-stage presentation – Delayed diagnosis and presentation of cancer at advanced stages can significantly impact treatment outcomes and survival rates. Factors contributing to late-stage presentation include limited access to healthcare services, lack of knowledge about cancer symptoms, fear or mistrust of the healthcare system, and cultural or social barriers to seeking timely medical attention. Early detection through screening programs and raising awareness about the importance of symptom recognition can help improve health outcomes by enabling timely intervention and treatment initiation.
  
• Attrition and dropout – Cancer treatment often involves complex and prolonged regimens, including surgery, chemotherapy, radiation therapy, and supportive care. Attrition and dropout from treatment can occur due to various reasons, such as treatment-related side effects, financial constraints, logistical challenges (e.g., transportation difficulties, childcare responsibilities), psychological distress, and lack of social support. Failure to complete recommended treatment courses can compromise treatment efficacy and worsen health outcomes.
  
• Gaps in the care continuum – Cancer care is a continuum that spans from prevention and early detection to diagnosis, treatment, survivorship, and end-of-life care. Breaks or discontinuities in this continuum, such as inadequate coordination of care, fragmented healthcare delivery systems, transitions between healthcare providers or settings, and disparities in access to follow-up care and supportive services, can lead to suboptimal outcomes for cancer patients. Comprehensive, patient-centered care models that address the holistic needs of cancer patients across the care continuum are essential for improving health outcomes and quality of life.

These challenges need to be addressed with an approach involving healthcare system reforms, community-based interventions, patient education and empowerment, policy changes, and efforts to address social determinants of health. By addressing the underlying factors contributing to poor health outcomes in cancer care, we can work towards reducing disparities and improving the overall quality of cancer care and patient outcomes.

Time-delay in treatment-seeking pathways

In 2013, researchers at the Acharya Harihar Regional Cancer Institute in Odisha conducted a study. They surveyed patients who stayed in the hospital (IPD patients) to find out how long it took for them to start treatment after they first noticed symptoms. The process usually begins when signs and symptoms appear, then the person talks to family and friends, sees a doctor or another healthcare provider, and is eventually referred to a cancer specialist for diagnosis and treatment. Based on the survey of these patients, the researchers found that it took about 1 year and 8 months for a person to start treatment after noticing symptoms. Although the study was done in 2013, I believe things have improved since then with better medical facilities and advances in cancer treatment. It’s concerning that despite progress in cancer care, there are still delays like this in our healthcare system.

Actual Data of Time delay in treatment-seeking pathways (2013 – Study report of Acharya Harihar Regional Cancer Institute in Odissa)

1. Appearance of signs and symptoms
2. First consultation with family and friends

Consultation with doctor

Consultation with other health systems

1. Referred by Doctor
2. Oncologists
3. Diagnosis and Treatment

Average Time from Onset of Unusual Symptoms to first consultation with family – 271 days

Average time to seek healers and alt therapy – 139 days

First consultation with doctor – 1 yr

First consultation with oncologist – 1 yr 2 ½ months

Total number of days from onset of unusual symptoms to start of treatment – 533 days (1 yr 8 months approx.)

Need GAP Analysis

Survey to Identify Gaps in Delivery of Care

Cross-sectional survey at five TMC centers across 4 states: Maharashtra(Mumbai, Kharghar), Uttar Pradesh(Varanasi), Punjab(Sangrur), Assam(Guwahati).

We have surveyed 1674 patients in these centers to examine the gaps in cancer care. In this survey, we divided the patients into 4 categories –

1. New registration – 473 patients
2. 15 days post registration – 412 patients
3. MID treatment – 456 patients
4. Long-term follow-up – 333 patients

Total: 1674 patients

Gaps: Information needs, Logistics, Accommodation, Finances, Travel), Language barrier, Long-waiting time, Overcrowding, Treatment delays, Prognosis and toxicity of treatment, Emotional Support

Early Patient Satisfaction (63-70%) Increased to 80-83% in patients surveyed in later phases (p<0.001) guiding greater focus on new patients.

KEVAT Observation Project on Newly Registered Patients at ACTREC – MARCH 2023

There were around 100 newly registered patients in the month of MARCH 2023, We confirmed their status of investigations using EMR reports. In this observation, the Telephonic follow-up of delayed patients was conducted after 4 working days. 

• We found out that we have 44 patients who required assistance with incomplete work, billing for work not done, missed consultations, and financial help).
• Among them, 39 patients do not require any assistance.
• 5 patients where taking treatment outside 
• 2 referred for treatment outside
• 10 no communication established/dropouts?

So, after these core observations, we found that more than 40% of patients required care assistance but had not approached healthcare facilities. For this purpose, pro-active advocacy is crucial because waiting for the patient to come to you might lead to the meltdown of lots of verticals. So, instead, we need to try and concentrate on what we can offer to improve our healthcare system for patient efficacy of care.

Patient Needs Identified in Various Phases of Cancer Care

Patients’ needs vary across different phases of cancer care, and addressing these needs is crucial for providing comprehensive support and improving outcomes. Here’s a breakdown of patient needs identified in various phases of cancer care –

• Screening and Early Detection
  • Education about the importance of screening and early detection
  • Addressing religious and cultural beliefs that may influence screening participation
  • Financial concerns related to the cost of screening tests
  • Lack of awareness about available screening programs
  • Fear of receiving a cancer diagnosis during screening

• Diagnosis
  • Timely referral for diagnostic tests and evaluations
  • Addressing psychosocial concerns related to anxiety and uncertainty following diagnosis
  • Financial concerns regarding diagnostic procedures and consultations
  • Logistics of scheduling and attending diagnostic appointments
  • Communication barriers, including language and cultural differences

• Workup
  • Improving health literacy to understand diagnostic results and treatment options
  • Providing emotional and social support to cope with the stress of diagnosis
  • Financial and logistics planning for upcoming treatment and appointments
  • Timely development of a treatment plan and involving patients in decision-making

• Treatment
  • Addressing myths and misconceptions about cancer treatment modalities
  • Supporting patients in adjusting to altered relationships and roles within their families and communities
  • Managing unrealistic expectations regarding treatment outcomes
  • Addressing treatment-related issues and side effects, including pain, nausea, and fatigue
  • Financial concerns related to the cost of treatment and associated expenses
  • Logistics challenges, such as transportation to treatment facilities

• Follow-up
  • Helping patients adapt to a “new normal” post-treatment and addressing body image concerns
  • Providing psychosocial rehabilitation and support services to address emotional and social needs
  • Managing fear of cancer recurrence and providing reassurance and support
  • Offering end-of-life care planning and support for patients with advanced disease

By recognizing and addressing these diverse needs throughout the cancer care continuum, healthcare providers can better support patients and improve their overall quality of life during and after cancer treatment. It’s essential to adopt a patient-centered approach that considers individual preferences, values, and cultural beliefs to provide holistic care that meets patients’ unique needs and preferences.

What are the Solutions?

1. Multidisciplinary team and approach towards support that involves advocates, support staff, and homecare individuals. Communication needs to be established among these verticals so that they can determine the patient’s problems accurately.
2. We need to work together by adopting a multi-disciplinary approach as soon as the treatment starts. There should be a resource directory available for the patients to access and approach whenever necessary. 
3. There should be cancer care individuals available to interface at different standpoints, especially during the transition of care.
4. Be a cancer advocate. A group of students approached me and told me about the initiative they are undertaking to create 3 fundraisers to provide benefits to 50% on cancer treatment and 50% on cancer research. 

I was really impressed and happy with the student’s initiative to join forces and advocate for patients. We can learn a lot from each other, and working together is essential to achieve our goals in patient advocacy. The true celebration of Cancer Day will only happen when there’s a day without cancer.

Thank you so much for joining us…

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