Title : Unveiling gaps in cancer care: A qualitative study on the needs of patients from Northeast India
Abstract:
Background: Cancer is the leading cause of death worldwide, with the WHO projecting a 45% increase in global cancer deaths from 2008 to 2030 (1, 2). Beyond health impacts, cancer imposes significant economic strains, particularly on younger, low-income individuals (3). The extensive economic burden of cancer is well-documented (4-7), exacerbated by late-stage diagnoses due to inadequate screening awareness (8). Rising cancer care costs result in higher out-of-pocket expenses (OOPEs), medical debt, and bankruptcies, with cancer patients facing more significant financial burdens compared to those with other conditions (9-12). India experiences the highest OOPEs globally, with 62.6% of health expenditures attributed to this cause. Inadequate health insurance is a primary factor (13). The Indian government’s 2018 launch of the Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (AB PM-JAY) aims to reduce these disparities by providing cashless cancer treatments through over 28,000 hospitals (14, 15). Meghalaya's Health Insurance Scheme (MHIS), which has been aligned with AB PM-JAY since 2012, seeks to minimise OOPEs and enhance healthcare services (16). Effective communication with healthcare providers is crucial, influencing decision-making, treatment adherence, and overall patient satisfaction, reducing distress and improving quality of life (17-19). Addressing financial aspects through patient-centred plans is essential to mitigate financial toxicity (20, 21).
Aim: This study aims to explore the financial experiences and needs of cancer patients within a tribal population in Northeast India.
Methods: This qualitative study utilised in-depth face-to-face interviews with cancer patients and their family members, covering head and neck cancer, gastrointestinal cancer, and respiratory cancer from stage I-IV. 19 interviews were conducted with 12 patients and seven caregivers at a hospital outpatient department (OPD) Civil Hospital, Meghalaya.
Results: The study identified five key themes: Initial Symptoms and Health-Seeking Behaviour: Participants described delayed healthcare-seeking due to lack of awareness and cultural beliefs. Perception of Cancer and Treatment: Misconceptions about cancer and its treatment influenced patients' decisions and compliance. Financial Burden and Insurance Coverage: High treatment costs, limited health insurance, and significant out-of-pocket expenses created substantial financial stress. Treatment Pathways and Satisfaction: Patients faced challenges navigating treatment options and expressed varying satisfaction levels with care. Support Systems and Coping Mechanisms: Family and community support and psychological coping strategies were crucial for managing the cancer journey.
Discussion: The study investigates cancer patients' needs and experiences, highlighting the significant impact of cultural beliefs, financial concerns, and healthcare-seeking behaviours. Patients often initially interpret symptoms through artistic lenses, attributing illness to supernatural causes like black magic, which aligns with existing literature on cultural frameworks shaping health behaviors (22). The transition from traditional to formal healthcare systems is complex, with delays and misdiagnoses common, reflecting barriers such as health literacy and structural inequalities (23). Culturally sensitive healthcare approaches, integrating traditional healing with biomedical care, may enhance early detection and health outcomes (24).
Keywords: Cancer, Cost Communication, Financial Burden, Out-of-Pocket Expenditure, Health Care.
