Introduction: Cost is a commonly mentioned barrier to cancer screening, particularly colonoscopy. However, rarely is the issue of cost and perceived costs explored in-depth. We used Photovoice, a community-based participatory research method, to explore people's descriptions of cost-related struggles and successes in the context of colon cancer screening.

Methods: To examine issues related to cost, we prioritized recruitment in medically underserved regions of our city. All participants were screened for colon cancer using colonoscopy. We conducted three Photovoice groups, totalling 18 participants. The project was conducted during 6 months, with each group lasting approximately 12 weeks, during which participants took photographs and discussed their photographs in both individual and group sessions. Transcripts from group and individual sessions were inductively coded using a team approach. Three main themes emerged.

Results: Colonoscopy is costly. Colonoscopy is expensive and the true cost is difficult to predict. Costs might change if a polyp is detected. Yet there are costs beyond the medical bill. Patients may need to pay for the preparation solution or take unpaid time off work. An acquaintance must also take time off from work to escort the patient to the test. Some participants described doing the bowel preparation while at work, or working a double shift the day before the colonoscopy so as not to lose a day's pay or get in trouble at their job for missing hours.

Having insurance may not be “enough”. Participants described working extra hours or second jobs just to afford insurance premiums, and even then wondering if they had “enough insurance.” Insurance was not stable - participants had lost insurance due to divorce or job change, or anticipated that they might lose their insurance in the future.

People weigh current and future costs. High healthcare costs may lead patients to make difficult choices about healthcare adherence, cut back on necessities like food in order to afford care, borrow money or put expenses on credit, skip prescription medicine, or put off seeking care. The participants recognized that delaying care could lead to worse health problems; they anticipated and feared the consequences of delayed care. This fear was weighed against what could be afforded in the moment.

Underlying these themes was that family members and friends could support or enable health-protective behaviors through encouragement, loaning money, or taking time off to accompany a person to a colonoscopy appointment. Screening as an individual endeavor is challenge and participants wondered aloud how somebody might do colonoscopy if they did not have people to help them.

Conclusions: Some research suggests that increasing perceived risk or educating patients about the benefits of a procedure can reduce the perceived cost. While this may be true for some people, it minimizes the struggles that other people go through to access healthcare and how they contemplate these difficult choices.

Our data suggest that some low-income patients weigh the costs of inaction or delayed action for prevention, and are cognizant of the risks, yet the financial constraints laid on them are very real. Out of pocket costs and the instability of health insurance meant participants had difficult choices about when to access healthcare and what recommendations they should carry out. Interventions that are sensitive to these struggles and aim to work with patients to navigate these choices may be more successful than an educational or persuasion-only approach. Future research might explore how people under severe financial constraints make choices about adhering to healthcare recommendations, asking how people make choices between food and a prescription, or a paid day of work and a cancer screening test.

Citation Format: Jean Hunleth, B. Olivia Hughes, Sarah Smith, Natasan McCray, Deborah Bowen, Aimee James. Cost and consequences: Ways in which cost is a barrier to colon cancer screening. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr A50.