Cancer-related costs, the resulting financial impact and coping strategies among cancer survivors living in a setting with a pluralistic health system: a qualitative study

BACKGROUND: Evidence on the financial experiences of cancer survivors living in settings with pluralistic health systems remains limited. We explored the out-of-pocket costs, the resulting financial impact and the coping strategies adopted by cancer survivors in Malaysia, a middle-income country with a government-led tax-funded public health sector, and a predominantly for-profit private health sector. METHODS: Data were derived from 20 focus group discussions that were conducted in five public and private Malaysian hospitals, which included 102 adults with breast, cervical, colorectal or prostate cancers. The discussions were segregated by type of healthcare setting and gender. Thematic analysis was performed. RESULTS: Five major themes related to cancer costs emerged: 1) cancer therapies and imaging services, 2) supportive care, 3) complementary therapies, 4) non-medical costs and 5) loss of household income. Narratives on out-of-pocket medical costs varied not only by type of healthcare setting, clinical factors and socioeconomic backgrounds, but also by private health insurance ownership. Non-health costs (e.g. transportation, food) and loss of income were nonetheless recurring themes. Coping mechanisms that were raised included changing of cancer treatment decisions, continuing work despite ill health and seeking financial assistance from third parties. Unmet needs in coping with financial distress were especially glaring among the women. CONCLUSION: The long-term costs of cancer (medications, cancer surveillance, supportive care, complementary medicine) should not be overlooked even in settings where there is access to highly subsidised cancer care. In such settings, patients may also have unmet needs related to non-health costs of cancer and loss of income.