Removing the Barriers to Care for Breast Cancer Patients: Improving Timeliness to Care

December 2020 Vol 11, No 12
Desiree Simon, DNP, MSN, BSN, RN
Sarah Cannon East Florida Division Navigation Program
Yesery Rassi, BSN, RN
Sarah Cannon East Florida Division Navigation Program

According to the American Cancer Society, breast cancer is the most common cancer and the second leading cause of cancer deaths in the United States.1 There were an estimated 268,600 new cases of invasive breast cancer and 48,100 cases of ductal carcinoma in situ diagnosed in women in 2019.1 Although the overall rate for breast cancer diagnosis is unchanged, and the death rate has declined to 41,760 in women, black and Hispanic women have higher death rates from breast cancer when compared with white women.1

The literature reveals that key factors such as socioeconomic and cultural disparities often play a direct role in patient outcomes.2 According to an article by Andy Polhamus titled “Breast cancer has worse financial impacts on black women,” black women (58%) reported more negative financial impacts than white women (39%) during cancer care.3 This report included difficulty paying daily expenses while going through medical treatment and difficulty in being able to afford starting medical treatment at all versus white patients.

In a recent study conducted to identify disparities in breast cancer characteristics and outcomes by race/ethnicity, there was evidence that women of black, Hispanic white, American Indian, and Hawaiian ethnicity present with a higher incidence of advanced stages of breast cancer and have a higher risk of death after a diagnosis of breast cancer.4 In addition, women of color were said to have a higher incidence of hormone receptor–negative tumors, which are generally more aggressive than hormone receptor–positive tumors, thus increasing mortality rates among these minority groups.4 With the incidence steadily increasing among these groups of women, it is important to identify barriers experienced by all persons who are diagnosed with breast cancer. Identified barriers, including financial, life and work, and healthcare system barriers, that women of racial minorities face that impact timeliness to care will be discussed in this article.

Financial Barriers

The first barrier to be discussed is the financial burden that impedes timely initiation of care. The staggering costs of cancer care are recognized to be potentially catastrophic for patients with breast cancer.5 Cancer patients experience a higher financial burden—commonly known as “financial toxicity.” This toxicity not only affects the overall quality of life and survival of these patients but causes financial distress to both the patient and their families.6 Racial minorities experience poorer cancer outcomes while shouldering a greater financial burden. For example, black women have higher mortality rates and lower initiation rates for cancer treatments. Unfortunately, adherence to the recommended standard of care shows a direct correlation to the patient’s inability to pay for care.5

Cancer is among the most expensive diseases to treat in the United States, which is in part due to the overutilization of services, access of care to more patients, the growing aging population, and innovation.6 Offering more innovation comes with a cost.6 Of these costs, Medicare and/or private insurance programs only pay approximately one-third, leaving the remaining two-thirds as nonreimbursable or out-of-pocket costs that include direct medical, nonmedical, and indirect charges that patients are responsible for.7

The comfort of having healthcare insurance no longer negates the financial distress associated with cancer.5 Rather, patients are now faced with the exponential burden of the increasing out-of-pocket expenses that surpass income and patient financial reserves.5 Many cancer patients and their healthcare providers are unfamiliar with the benefit information and are unable to have the financial dialogue to explore possible discounted programs for copayment and medication assistance offered by pharmaceutical and community-based foundations.5 These programs provide assistance to patients to avoid the struggle with making difficult decisions to forego, delay, or discontinue required treatments that would otherwise provide better patient outcomes.5 Therefore, it is imperative to address the financial impact of cancer care with every patient at the beginning of the continuum of care and explore various programs that would provide assistance to those who could face this particular barrier.

Life and Work Barrier

Work-life balance is an important factor for all persons in the workforce no matter their role. This balance often becomes unattainable for persons diagnosed with breast cancer. Many women face the daily reality at work during active treatment with unsupportive supervisors, debilitating symptoms, emotional distress, time constraints, and work characteristics.8 The promise for provisional accommodations during treatments to reduce work hours, lighten the workload, or work remotely has often been omitted or never implemented, creating an unsupportive working environment.8 These obstacles experienced by many women in the workforce create many challenges that force them to reevaluate their treatment options. Creating a work environment for healing and balance can be achieved once the identified barriers are intentionally removed.8

Health System Barriers

As policies reshape the platform of healthcare, the public and political sectors have an increasing focus on the importance of cancer care that revolves around improving community awareness, screening and early diagnosis of cancer, and treatment.9 The associated quality of care for patients with cancer often requires access to specialty providers.9 When patients are not managed under specialized care, they are more likely to have poorer outcomes and lower satisfaction reviews, which can be detrimental to their quality of life and survival.9 The specific barriers of restrictive provider networks, stringent preauthorization requirements and policies that were originally developed to reduce overutilization of services and unessential cost, have now affected timeliness to care for many cancer patients.9 It is essential that healthcare providers regain the ability to refer their patients to high-quality providers by streamlining the referral process, increasing in-network specialist availability, and developing programs that would allow uninsured, underinsured, or Medicaid patients to gain timely access to care.

Solutions to Identified Barriers

The significance of removing the barriers that affect timeliness to care is paramount in the outcome of breast cancer patients. Many patients become overwhelmed with the urgency to make a decision about what should be done first, if care is affordable, who should be their specialist, and whether the recommended treatment will cause interruption in their work schedules. Patients may wonder whether they have sufficient financial resources to afford their care. As a result, the concerns and decisions often become so mentally taxing that some patients resolve to delay their care or not pursue cancer care at all. Other patients may develop a false sense of hope, waiting for a miracle to happen. Navigation offers the opportunity to relieve the added stress and redirects and educates patients on treatment options provided by their physicians.

The role of the navigator is to improve cancer screening rates, adherence to treatment regimens, and to improve patient satisfaction by reducing barriers to care.10 Breast cancer patients benefit from navigation because the integration of early intervention and collaboration within the multidisciplinary team improves patients’ overall survival rates.10 Because disparities continue to exist among these high-risk communities, navigation is particularly essential in connecting patients and providers to their support system, and by providing personalized education during a patient’s cancer journey. This guarantees that patients have all the necessary resources to complete their recommended treatment courses.11 The barriers described that affect cancer care are said to be lack of social support, insurance/financial concerns, and communication challenges.2 The literature shows that patient/nurse navigation programs have proved to be beneficial in aiding disadvantaged patients during their cancer journey.2

Navigation for breast cancer patients begins at diagnosis. Patients often feel overwhelmed with thoughts like: this can’t be true; are they sure those results are mine? I did everything right, it’s impossible that I would have cancer; no one in my family has breast cancer; and even, this must be a mistake. The journey for these patients truly begins once the fog of this life-changing diagnosis has been cleared and “the angels” (as they are called) swoop in to provide much needed assistance. That is where the role of navigation begins. The responsibilities of a navigator range from scheduling appointments to educating on diagnosis and treatment modalities. Navigators collaborate with healthcare providers and attend tumor boards to establish multidisciplinary treatment approaches to better serve their patients.

Navigators help provide needed access to community resources and become the central contact not only for patients but also their families and their respective healthcare providers. The role of the navigator is imperative throughout cancer care, as they provide assistance that creates bridges to identified gaps or barriers and/or disadvantages that racial minority breast cancer patients can face. Studies show that having navigators involved in the care of cancer patients aid in the resolution of disparities among these patients.12 However, according to Raj et al, there is also a direct need for more research to be conducted on the financial necessities of diversified patients with breast cancer. It is important to note that along with the need for further research there are demands for further development of implementations and the creation of support instruments that can identify and match patients to resources for financial assistance through cancer care.12

As we know, breast cancer patients experience a plethora of needs for both themselves and their families. In this instance, a newly diagnosed black patient, who ironically works at a sister facility as a certified nursing assistant, was burdened with the frustration of her diagnosis, the struggling reality of maintaining her home, and the inability to pay both inpatient and outpatient out-of-pocket health cost. She also juggled transportation issues of going to work, keeping her doctor appointments, attending chemotherapy and radiation treatments through the means of public transportation, hospital-based transportation, and rides from family and friends. These challenges have now become her new reality.

The role of her nurse navigator was to ensure that she remained committed and compliant with the recommended treatment plan. This daunting task included navigating through community resources that were no longer in existence, programs that had limited or no remaining resources, and asking for referrals from other colleagues. The frustration that resounded from many navigators was heard by our phenomenal leadership team, and it developed what we now rave over, a resource website called Wellist.13

This digital online platform offers patients local and national nonclinical resource information. Wellist Integrated Patient Experience Solutions strengthens the empathetic care delivered by frontline staff to ensure patient satisfaction, enhance staff production, and address barriers to cancer care adherence across the continuum.13 Despite the challenges of COVID-19, when many community agencies struggled to keep their doors open, let alone provide the needed assistance or support to our cancer patients, Wellist provided hope to this patient, offering transportation vouchers, referrals to community programs, and more. In addition, this patient was also assisted through her employer financial assistance program for additional monetary support. Wellist addressed many of the day-to-day challenges that prevent timeliness to care.

OncoLink is another digital platform and the largest Internet informational website for cancer that provides up-to-date tools and educational materials to support healthcare professionals on treatment education, psychosocial support, and survivorship plans for patients and their families.14 These tools complement the role of navigators by empowering patients to make informed decisions, assisting them in becoming active participants in their care, and promoting advocacy for better patient outcomes.

Triage Cancer is another tool that offers navigators resources to support their patients by decreasing the health disparity curve. This application not only offers educational resources but also advocates for healthcare, finances, insurance, employment, and consumer rights coupled with legal counsel support for cancer patients and their families.15 These programs provide additional support that allows patients to be treated, heal, and recover without the added stress of life’s concerns. These are just a few accessible solutions that support breast cancer patients and improve timeliness and access to care. It is vital that navigators become knowledgeable and familiar with these available resources to help patients and their caregivers on their cancer journey.

Conclusion

Socioeconomic and cultural disparities continue to play a role in the outcome of breast cancer patients. The identification of barriers at diagnosis is crucial to flatten the disparity curve and address the increasing incidence of mortality among minority groups. The removal of financial toxicities and life and work barriers that contribute to poorer cancer outcomes will create more opportunity for better outcomes. Health system barriers are at center stage for healthcare policy reform. The attempt to eliminate restrictive practices needs to coincide with addressing the inadequacies many patients are plagued by and with determining possible solutions to eradicate these known barriers. Resources such as Wellist, Triage Cancer, OncoLink, and navigation offer support for much needed resources and allow patients to focus their efforts on their mental and physical health. These platforms are pivotal steps for improving the trajectory for patient outcomes by removing barriers and improving timeliness to care.

References

  1. American Cancer Society. Breast Cancer Facts & Figures. www.cancer.org/research/cancer-facts-statistics/breast-cancer-Facts-figures.html. Accessed September 10, 2020.
  2. Hendren S, Chin N, Fisher S, et al. Patients’ barriers to receipt of cancer care, and factors associated with needing more assistance from a patient navigator. J Natl Med Assoc. 2011;103:701-710.
  3. Polhamus A. Breast cancer has worse financial impact on black women. HEM/ONC Today. 2018;19(14):42.
  4. Ooi SL, Martinez ME, Li CI. Disparities in breast cancer characteristics and outcomes by race/ethnicity. Breast Cancer Res Treat. 2011;127:729-738.
  5. Wheeler SB, Spencer JC, Pinheiro LC, et al. Financial impact of breast cancer in black versus white women. J Clin Oncol. 2018;36:1695-1701.
  6. Zafar SY, Abernethy AP. Financial toxicity, part I: a new name for a growing problem. Oncology. 2013;27:80-149.
  7. Gupta D, Lis CG, Grutsch JF. Perceived cancer-related financial difficulty: implications for patient satisfaction with quality of life in advanced cancer. Support Care Cancer. 2007;15:1051-1056.
  8. Sun W, Chen K, Terhaar A, et al. Work-related barriers, facilitators, and strategies of breast cancer survivors working during curative treatment. Work. 2016;55:783-795.
  9. Kwon DH, Tisnado DM, Keating NL, et al. Physician-reported barriers to referring cancer patients to specialists: prevalence, factors, and association with career satisfaction. Cancer. 2015;121:113-122.
  10. Basu M, Linebarger J, Gabram SGA, et al. The effects of nurse navigation on timelines of breast cancer care at an academic comprehensive cancer center. Cancer. 2013;119:2524-2531.
  11. Freund KM. Implementation of evidence-based patient navigation programs. Acta Oncol. 2017;56:123-127.
  12. Raj A, Ko N, Battaglia TA, et al. Patient navigation for underserved patients diagnosed with breast cancer. Oncologist. 2012;17:1027-1031.
  13. Wellist. Wellist Integrated Patient Experience Solutions. https://wel list.com. Accessed September 1, 2020.
  14. OncoLink. Getting Treatment. www.oncolink.org. Accessed September 23, 2020.
  15. Triage Cancer. Beyond Diagnosis. https://triagecancer.org. Accessed September 23, 2020.
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Last modified: February 18, 2021

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