In a survey of 510 U.S.-based cancer patients and survivors, we found a positive, independent association between administrative payment tasks and cost-related delays in and nonadherence to care, which took the form delayed or skipped doctor appointments, tests and bloodwork, and prescription fulfillment. Younger patients and those identifying as African American were more likely to experience administrative payment tasks and cost-related nonadherence. At the item level, every administrative task was associated with an increase in the odds of cost-related nonadherence, and the strongest indicator was patient report that they at least sometimes estimated out-of-pocket costs before agreeing to treatment.
Administrative tasks may interfere with timely access to care. Previous research has demonstrated how administrative burdens interfere with Medicaid enrollment, selection of Medicare plans, [16] and utilization of employer-sponsored health insurance [17]. Few studies have examined the relationship between administrative tasks and access to healthcare. However, our findings are consistent with those of a recent study in which 24% of insured adults reported that administrative burdens led to delayed or forgone medical care. As in our study, the researchers found that these burdens were most pronounced in young adults and those identifying as non-white [18].
Nonadherence has been reported as a means of coping, however maladaptively, with the high cost of cancer treatment across a broad range of populations, including adolescents and young adults, gynecological cancer patients, breast cancer patients, and caregiver-patient dyads [19– 22]. Predictors of nonadherence include lower income, less education, lack of insurance or prescription drug coverage, high out-of-pocket medical costs, and enrollment in a high deductible health insurance plan without an accompanying health savings account [23]. To that end, our findings suggest administrative burden may be another predictor of nonadherence.
Although our analysis found an association between administrative payment burden and cost-related nonadherence, we do not know the exact motivations, or combination of motivations, for such nonadherence. The Burden of Treatment Theory can help to disentangle the complex relationship between the patient’s workload in order to receive care and their decisions about adherence to recommended care, by encouraging consideration of the negative impact of the uncompensated effort required to co-manage the physical and psychosocial side effects of treatment with the purely financial effects. Reductions to administrative burden on patients, whether through patient-level education interventions, the adaptation of hospital-based navigation programs, or policy-focused changes to insurance systems, will be crucial action-items. Behavioral economics approaches, which encompass both psychological and economic motivations, may also help to provide insight into the development and testing of human-centered healthcare processes designed to reduce administrative burden [24,25].
Our findings support the idea that administrative burdens are unequally distributed. For example, completing administrative work “successfully” (i.e., to ensure adherence with insurance regulation to facilitate expected payment for medical services) is a function of the combined cognitive, physical, and material capabilities of the patient’s social network, resources that vary substantially across patient populations. When capabilities are overwhelmed, policies change, and/or resources are exhausted, the patient’s wellbeing and treatment engagement may be compromised, with the potential for disparities in outcomes [8]. Individuals and families that lack the various forms of capital (e.g., knowledge, cultural, language, time/money) needed to effectively engage with the healthcare system—as well as those who have been historically, and often purposefully, excluded from accessing these forms of capital—are at a disadvantage. At its most extreme, excessive administrative burdens exclude some individuals and groups from health and social benefits entirely [26].
Limitations
These findings should be interpreted considering certain limitations. These data were collected using online recruitment and survey strategies which mean that the respondents were trusted to report their disease status accurately. There have been problems with online bots responding to research surveys, however we took measures to reduce the likelihood of tampering. Participants were formally registered with and compensated by consumer research company as survey respondents, so their humanity was verified through the registration process. Respondents were not informed of the eligibility requirements prior to the screening process, so the likelihood of someone completing the survey who did not have a history of cancer was low. Finally, insurance type was measured using an item that we found difficult to interpret because Medicare and Medicaid were clustered into a single response category. Insurance type is a meaningful variable to examine in the context of administrative payment burdens, however due to it low interpretability, we left it out of multivariate analyses. Further, as this study was designed to assess the financial concerns of insured cancer patients and survivors, so we did not capture the experiences of the uninsured. The uninsured experience high financial toxicity and financial barriers to care and represent 11% of the U.S. population [27,28]. Health insurance status and type should be captured via a more precise item in future studies of administrative burdens and cost.