Understanding the full breadth of cancer-related patient costs in Ontario: a qualitative exploration

This research informs existing work by examining the full scope of out-of-pocket costs and lost income, patients’ private insurance behaviors, and their overall management of finances during their cancer treatment. The intent was to gain a deeper understanding of patient circumstances and the related costs.

Participant qualitative interviews were conducted in person during outpatient clinic visits or by telephone and were recorded between June 2011 and July 2012. Interviews were transcribed verbatim and subjected to a descriptive qualitative analysis. The research team collaborated early in the process (after three subjects were enrolled) to develop a preliminary coding framework. The coding framework was modified to incorporate additional emerging content until saturation of data was evident. Transcripts were coded using the qualitative software NVivo version 9.0.

Fifteen patients agreed to participate in the study and 14 completed the interview (seven breast, three colorectal, two lung, and two prostate). Consistent with existing published work, participants expressed concerns regarding expenses related to medications, complementary/alternative medicines, devices, parking and travel. These concerns were exacerbated if patients did not have insurance or lost insurance coverage due to loss of work. Although many acknowledged in hindsight that additional insurance would have helped, they also recognized that at the time of their diagnoses, it was not a viable option. Previously unidentified categorical costs identified in this study included modifications to housing arrangements or renovations, special clothing, fitness costs and the impact of an altered diet.

We confirmed the results of earlier Canadian quantitative work. Additionally, cost categories not previously explored were identified, which will facilitate the development of an improved and more comprehensive quantitative questionnaire for future research. Many patients indicated that supplemental health insurance would have made their cancer journey less stressful, highlighting existing gaps in the government funded health care system.