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Abstract
Objectives To characterise patient-reported financial burden of living with advanced colorectal cancer in Alberta, Canada, as part of a larger prospective cohort study characterising the experiences of people living with advanced colorectal cancer.
Methods Patients were recruited from Alberta’s tertiary cancer centres between January 2018 and July 2020. Enrolled participants were invited to complete the Patient Self-Administered Financial Effects (P-SAFE) questionnaire at 1 month post-enrolment and every 6 months thereafter, until death or end of study (December 2020). The questionnaire captured consumption expenditure, out-of-pocket costs, including travel and parking costs, dissaving strategies and productivity impacts of patients and caregivers over the past 28 days.
Results Of 87 eligible patients, 56 completed at least one P-SAFE survey. They reported an average of $C401 in out-of-pocket costs (eg, medications, vitamins/supplements, devices) over the past 28 days (median $C84, range $C0–$C4475), plus an average of $C249 per 28 days for travel and parking (median $C80, range $C0–$C2680). Patients reported an average of two trips per month to their cancer centre, travelling anywhere from 6 to 500 km one way. 88% of employed patients and 88% of employed caregivers reported impacts on employment; 34% of patients made significant asset decisions (eg, withdrew savings, downsized home). 30% of patients reported high perceived financial burden (ie, ‘somewhat’, ‘large’ or ‘worst possible’ financial difficulty) in the past month.
Conclusions This cross-sectional descriptive analysis suggests that the financial burden of advanced colorectal cancer is high, as evidenced by high out-of-pocket costs, impacts on employment and self-reported financial difficulty.
- Cancer
- Gastrointestinal (lower)
- Outpatients
- Palliative Care
- Supportive care
Data availability statement
Data are available on reasonable request. Aggregate, deidentified data may be made available on reasonable request from the corresponding author. The data are not publicly available, consistent with the ethics approval.
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Data availability statement
Data are available on reasonable request. Aggregate, deidentified data may be made available on reasonable request from the corresponding author. The data are not publicly available, consistent with the ethics approval.
Footnotes
JS and AS are joint senior authors.
Presented at This work has been presented in part at the following conferences: 3rd and 4th Joint Sapporo Conference for Palliative and Supportive Care in Cancer, 27 April 2023–29 April 2023, Sapporo, Japan; 23rd International Congress on Palliative Care, 18 October 2022–21 October 2022, Montreal, Canada; MASCC/ISOO 2022 Annual Meeting, 23 June 2022–25 June 2022, Toronto, Canada; Canadian Cancer Research Conference (CCRC) 2021, 8 November 2021–11 November 2021 (virtual); 2021 Canadian Association for Health Services and Policy Research (CAHSPR) Annual Conference, 19 May 2021–21 May 2021 (virtual); 2021 Canadian Centre for Applied Research in Cancer Control (ARCC) Conference, 17 May 2021–18 May 2021 (virtual); 2021 Hospice Palliative Care Ontario (HPCO) Annual Conference, 18 April 2021–20 April 2021 (virtual); 11th World Research Congress of the European Association for Palliative Care (EAPC), 8 October 2020–9 October 2020 (virtual). This work has been published in part through the following conference abstracts: Supportive Care in Cancer 2022; 30(Suppl 1):S129, https://doi.org/10.1007/s00520-022-07099-y; Palliative Medicine 2020; 34(Suppl 1): 169, https://doi.org/10.1177/0269216320958098.
Contributors JS, AS, ME and SW conceived of the study. JS, AS, ME and SW acquired the funding. JS, AS, ME, PB and SW contributed to the study design including developing the study protocol, designing/selecting the data collection tools and developing the analysis plan. BME and CJL provided expert advice on collecting financial effects data and use of the P-SAFE tool. SK and CB were responsible for recruitment of study participants and collection of data. PB, ME, PS, PA and AS all participated in data analyses. All authors participated in data interpretation. PB drafted the manuscript and all authors have reviewed and critically revised it. All authors have read and approved the final manuscript. AS is responsible for the overall content of the manuscript and acts as guarantor.
Funding This work was supported by a Canadian Institutes of Health Research Operating Grant: Partnerships for Health System Improvement for Cancer Control (HRC-154127).
Competing interests AS has received an honorarium and travel expense reimbursement from the Canadian Society of Palliative Medicine and travel expense reimbursement from the Canadian Partnership Against Cancer. AS has an academic contract with Queen’s University, a leadership position with Lakeridge Health, an academic position with University of Calgary (non-financial) and a clinical position with Alberta Health Services.
Provenance and peer review Not commissioned; externally peer reviewed.
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