key: cord-1010611-celx93b4
authors: Carlos, Ruth C.; Lowry, Katy; Sadigh, Gelareh
title: The COVID-19 Pandemic: A Patient-Centered Model of Systemic Shock and Cancer Care Adherence
date: 2020-06-03
journal: J Am Coll Radiol
DOI: 10.1016/j.jacr.2020.05.032
sha: e91ee40a47af4190b6fb37b84cf2b8c1783c6802
doc_id: 1010611
cord_uid: celx93b4

nan

Systemic stressors, such as the 9/11 attack or the 2008-09 financial crisis, resulted in multi-dimensional changes at multiple levels conceptualized to influence patient outcomes such as survival and health-related quality of life (HRQL). COVID-19 represents a natural experiment to assess the effects of such external stressors on patient outcomes. First, COVID-19 created an economic crisis, with at least 36 million Americans filing for unemployment (1). Fewer jobs result in less income and lost insurance coverage, exacerbating healthrelated financial hardship especially in cancer patients. Second, the threat of COVID-19 is stressful among cancer patients or older individuals, who are at elevated risk for and poorer outcomes after infection. Third, during the pandemic, people curtailed outside activities and care institutions reduced non-urgent service availability. The World Health Organization (WHO) previously outlined a model applicable to the severe acute respiratory syndrome (SARS) epidemic in 2003 (2), adapted for the current pandemic (Fig. 1) . This model accounts for the patient-level factors and health system factors that independently influence care utilization, leading to patient-initiated or provider-initiated care delay or nonadherence. We adapted a model developed by Yabroff et al (3) that additionally integrates COVID-19 related changes at the national, state or local levels interacting with patient-level and system-level characteristics to heighten or mitigate the risk of distress and financial hardship (Fig. 2) .

Omnipresent media attention, shelter-at-home orders resulting in social isolation, state-and localleadership distrust and local COVID infection rates induce distress in multiple domains e.g. anxiety, depression or loneliness and can result in inappropriate coping behavior (e.g. increased smoking or alcohol use). In addition, the emotional and financial distress from COVID-19 may result in care nonadherence as a maladaptive coping response (3).

During the acute phase of the pandemic, health systems closed outpatient centers, delayed non-urgent care and focused efforts on managing those with COVID-19, leading to predominantly provider-initiated care delays (4). However, patients wary of COVID-19 have also self-restricted seeking medical attention even when necessary (5).

As we transition into the recovery phase, we slowly reschedule delayed imaging cases, including cancer screening and surveillance, using expert guidelines to ensure that patients remain safe (6) . However, services delays will likely continue as radiology practices accommodate pent-up demand of previously delayed imaging, cope with current imaging needs and decrease throughput to ensure appropriate cleaning of imaging equipment.

Patient-initiated nonadherence is also projected to persist even after "reopening." (7) We hypothesize that multiple factors beyond price sensitivity and cost of care. Information dissemination during the acute phase of the pandemic seemed to have been driven by ideology, half-truths and mistruths, leading to mistrust of institutions traditionally thought to be a public good. Perceptions of lack of protection from their employers and the literal risk of life to provide essential services has further eroded belief in the system. Civic leaders at all levels and healthcare systems, physicians and other providers must regain trust that will promote appropriate care utilization as we recover. Otherwise, continued patient-initiated delays in seeking care may result in greater disease severity, complications and more difficult treatment after diagnosis. Among those eligible for cancer screening, patient-initiated delays or nonadherence even after availability of services resumes raises concern for stage-shift of cancer, i.e. later stage detection that would have otherwise been diagnosed earlier.

Where multiple forms of screening exist, price sensitivity may steer patients preferentially to one screening test or another, either due to COVID-related insurance change or income loss. Specific to breast screening, as a US Prevention Service Task Force (USPSTF) Grade B service, digital mammography is fully covered by all non-grandfathered plans (~98% of the insurance market) under the ACA; however, tomosynthesis may require a copayment determined by insurance benefits. Cost-based preference for digital mammography may result in false positives that could have been avoided by tomosynthesis.

Among those in the cancer survivorship period, delay of screening or surveillance imaging may result in delayed detection of recurrent disease. For example, among breast cancer patients, outcomes correlate with adherence to breast cancer screening, diagnostic and treatment services (8). The risks due to nonadherence in these women are particularly concerning given the risk of local and distant cancer recurrence, second breast cancers and the need for management of long-term therapy including endocrine therapy. To date, COVID-19 pandemic has decreased care utilization among cancer patients. Oncology provider visits dramatically declined by nearly half between the first week of March and the first week of April 2020 and rebounded to only 74% of normal volumes by early May (9).

As data continue to emerge, a disproportionate burden of infections, adverse outcomes and deaths are borne by African Americans and Hispanics, particularly at the epicenter of the pandemic (10), providing an uncomfortable update on persistent disparities. Many of us are privileged to work from home even as essential workers, have reasonable sick leave policies or have enough resources to accept a furlough. We are internetenabled with fast speeds that allow binge watching our favorite mindcandy or Zooming with friends and coworkers to maintain social contact and connection. Social determinants of health, broader determinants of wellness beyond race or income, include living situations (e.g. high-density housing), access to care (e.g. functional reliable public transit), and community (e.g. socioeconomic status of the neighborhood) have assumed a greater prominence and indicate additional populations with higher risks of COVID-related emotional and financial distress. Those who work or live where safe distancing is not possible or have zerohour contracts with no guarantees of minimum work hours or sick leave may be more susceptible to emotional and/or financial distress and more likely to forgo preventive or diagnostic care.

Both conceptual models presented in this article indicate that psychosocial distress and financial distress have the potential to influence care nonadherence. Depression and social well-being (including loneliness and social connection) increased the probability of early discontinuation of endocrine therapy (11) . Insurance type (12) and insurance loss (13) even in the era of the Affordable Care Act results in decreased care access and increased care nonadherence.

Cancer patients are at increased risk for financial hardship due to high out-of-pocket medical expenses and lost income caused by cancer and treatment. Financial hardship includes three main domains of material conditions (e.g., medical debt), psychological responses (e.g., financial worry) and coping behaviors (e.g., care nonadherence), and is linked to worse health-related quality of life (HRQL), and survival. High out of pocket expenses lead in change, delay or nonutilization of care including medication in 12-75% of patients (14) . For these patients, COVID-related financial hardship can exacerbate existing financial risk in this vulnerable population.

Perceived self-efficacy, belief that one can perform difficult tasks to obtain desired outcomes, confers a sense of control to modify stressful environments (15) that can translate into resilience during COVID-19 related distress and financial hardship risks. Self-efficacy played a moderating role in the relationship between depression and distress in cancer patients. Financial self-efficacy (i.e. confidence in managing money) independently predicts financial hardship among cancer patients and their caregivers and among multiple sclerosis patients (16) . We posit that high general and/or financial self-efficacy predicts improved well-being (17) and lower prevalence of care nonadherence, promoting resilience during a systemic stressor that mitigates its deleterious effects. Institutional practices can also be structured to support patient self-efficacy.

COVID-19, like other pandemics and systemic shocks, affected the whole of society, led to a nearcomplete halt of economic activity and care provision focused on the most acute cases. Even after entering the recovery period, there remains a possibility of intermittent outbreaks. Patients must make decisions to continue to engage in preventive, diagnostic and therapeutic care, under conditions of uncertainty, possible mistrust and infection fear. The economic consequences further challenge patients to afford care, even if they choose to participate. The conceptual models provide a framework for future analyses of the ongoing consequences of COVID-19. 

Catheterization Laboratory Activations in the United States during COVID-19 Pandemic

ACR Statement on Safe Resumption of Routine Radiology Care During the Coronavirus Disease 2019 (COVID-19) Pandemic

Delayed cancer screening. EPIC Health Research Network Brief

Racial and Ethnic Groups

Early Discontinuation to Adjuvant Endocrine Therapy in the TAILORx Trial

Financial Burden of Advanced Imaging in Radiology. RSNA 2019 Oral presentation. Health Services Research and Policy: Value, Outcomes and Risk

Insurance Loss in the Era of the Affordable Care Act: Association With Access to Health Services

Pilot Feasibility Study of an Oncology Financial Navigation Program

Perceived Self-Efficacy and its Relationship to Resilience Resilience in Children, Adolescents, and Adults pp 139-150

Patient reported Financial Toxicity in Multiple Sclerosis: Predictors and Association with Neuroimaging and Medication Non-Adherence