The hidden costs: a qualitative study of financial toxicity in hereditary cancer syndromes across Canada

Identifying financial toxicity (FT) following a cancer diagnosis is critical for providing interventions and support to patients. There is virtually no research on FT in patients with hereditary cancer syndromes (HCS), which account for approximately 10% of all cancers. This thesis examines FT related to two common types of HCS: hereditary breast and ovarian cancer syndrome (HBOC) and Lynch syndrome (LS). A qualitative interpretative description study was employed. Patients across three provinces in Canada with a confirmed molecular diagnosis of HBOC or LS were invited to participate in semi-structured interviews. Data saturation was achieved after interviewing 73 participants diagnosed with HBOC (n= 39) or LS (n= 34). Thematic analysis employing constant comparison was used to analyze the transcripts. Participants described several aspects of FT categorized under three primary themes: 1) objective financial burden (direct out-of-pocket (OOP) medical costs, direct OOP non-medical costs, indirect costs); 2) evaluation of financial resources; 3) subjective financial distress (distress due to financial resource management, basic needs insecurity, future financial insecurity). Findings revealed many interrelated objective and subjective aspects of FT. Evaluation of one’s financial resources emerged as a key factor in the experience of financial distress. Developing policies that facilitate solutions to mitigate FT experienced by patients with HCS is urgently needed.