Administrative Burdens Associated with Delays in Care Among U.S. Cancer Patients

Background and Purpose: While navigating a potentially life-threatening or -limiting illness, U.S. cancer patients and their caregivers must also attend to a range of administrative tasks in order to pay for their healthcare, including calculating cost estimates, negotiating with insurers, and attending to frequent billing statements. Excessive administrative tasks (i.e., administrative burdens) have been shown to reduce utilization of public benefit programs, however study of their impact on timely access to healthcare (in particular, cancer care) and treatment adherence is limited.

Methods: We surveyed U.S. cancer patients to determine the extent to which administrative burdens were associated with cost-related delays and nonadherence to care. We created summary measures of five administrative tasks (i.e., estimating costs of treatment, scans/diagnostics, prescriptions; and working with insurers to appeal or inquire about coverage) and five cost-related nonadherence items (i.e., delaying or forgoing treatment, scans, bloodwork, filling prescriptions; or cutting pills in half to make them last longer). We used multivariable logistic regression to adjust for potential confounders and determine the independent relationship between administrative burden and the odds of delaying or forgoing care due to cost.

Results: Three thousand recruitment emails were sent, and 510 surveys were completed (17% response rate). Most respondents were women (65%), over 55 years (58%), and Non-Hispanic white (71%). Just under one-half (48%) had received a Bachelor’s degree or higher, and the most commonly reported annual income range was $50,000-$74,999 (21%). Frequently reported cancer diagnoses included early-stage breast (22%), prostate (10%), and colorectal (8%). Fifty-five percent (n=280) reported never or rarely engaging in the surveyed tasks, and 9% (n=46) engaged in four or more administrative tasks. The mean total tasks (of five possible) was 1.0 (SD=1.43). One-third of respondents (n=146) reported engaging in any cost-related nonadherence: on average, participants engaged in 1 (SD=1.65) nonadherent behavior to reduce costs associated with care. In a logistic regression model controlling for age, race/ethnicity, education, and gender, administrative burden was associated with increased odds of any cost-related nonadherence (OR = 1.59, 95% CI: 1.34, 1.90). The more burden respondents experienced, the greater the odds a respondent would engage in cost-related nonadherence. Younger age and identifying as Black/African American were independently associated with increased odds of cost-related nonadherence.

Conclusions and Implications: Administrative burdens increased the odds of cost-related nonadherence by nearly 60%, taking the form of delayed or skipped doctor appointments, tests and bloodwork, and prescription fulfillment. Younger patients and those identifying as Black/African American were more likely to experience administrative burdens and cost-related nonadherence. Administrative burden can disrupt access to care: historically excluded patient populations are disproportionately exposed to these hardships. Social workers in direct practice need to be aware of these barriers to ensure equitable access to care for all patients, and social workers in administrative or research roles must endorse practices to alleviate or eliminate administrative burden, including financial advocacy and navigation programs and systemic changes to healthcare billing and payment structures. Reducing the administrative complexity of healthcare through universal, human-centered design could reduce burdens and increase access to care.