Conceptualization and sources of costs from breast cancer: findings from patient and caregiver focus groups.

Assessment of economic burden of breast cancer to patient and family has generally been overlooked in assessing the impact of this disease. We explored economic aspects from the perspective of women and their caregivers. Focus groups were conducted in 3 Quebec cities representing urban and semi-urban settings: 3 with 26 women first treated for non-metastatic breast cancer in the past 18 months, and 3 with 24 primary caregivers. We purposefully selected participants with different characteristics likely to affect the nature or extent of costs. Thematic content analysis was conducted on verbatim transcripts. Costs of breast cancer could be substantial, but were not the most worrisome aspect of the illness during treatments. Some costs were considered unavoidable, others depended on ability to pay. Costs occurred over a long period, with long term impact, and were borne by the whole family and not just the woman. Principal cost sources discussed were those associated with accessing health care, wage losses, reorganization of everyday life, and coping with the disease. This study provided deeper understanding of cost dynamics and the experience of costs among Canadian women with non-metastatic breast cancer, whose treatment and medical follow-up costs are borne through a system of universal, publicly funded health care. Copyright (c) 2004 John Wiley & Sons, Ltd.