Community Outreach and Prevention

Navigation is an important aspect of oncology care. The National Cancer Institute Center for Health Disparities defines patient navigation as follows: “Patient navigation refers to support and guidance offered to persons with an abnormal cancer screening or a new cancer diagnosis in accessing the cancer care system, overcoming barriers, and facilitating timely, quality care provided in a culturally sensitive manner. Patient navigation is intended to target those who are most at risk for delays in care, including racial and ethnic minorities and those from low-income populations. Furthermore, patient navigation targets specific time points in the cancer care continuum; we operationally define patient navigation as starting at the time of an abnormal screening result and ending at the determination that the screening test was a false positive or, for those individuals with a new cancer diagnosis, continuing through the completion of cancer treatment. The goal of patient navigation is to facilitate timely access to quality cancer care that meets cultural needs and standards of care for all patients.”¹

Patient navigation is recognized by the Commission on Cancer (CoC) as an essential component of oncology care. CoC organizations are mandated to have navigation in place and be able to speak to the standard at the time of survey. The CoC standard 3.1, which refers to patient navigation, states: “Patient navigation in cancer care refers to specialized assistance for the community, patients, families, and caregivers to assist in overcoming barriers to receiving care and facilitating timely access to clinical services and resources.” Resources identified may be provided on-site or by referral.² Program evaluation is done yearly and reported to the cancer committee. Processes are modified or enhanced each year to address additional barriers identified by the community needs assessment (CNA).

Each navigation program is unique because it is based on the results of the CNA done by the organization or community that identifies the disparities and barriers that patients face. The navigation process is modified or enhanced each year to address additional barriers identified by the CNA. The CNA identifies barriers to care in the community and allows for the development of programs and community outreach events to decrease identified barriers. It also highlights issues related to access to care. A CNA is done every 3 years, and the navigation program is established/changed to meet the needs identified.³

The Healthy People 2020 initiative identifies topics considered to be social determinants of health and identifies goals to improve healthcare, which include improving access to care and decreasing disparities. The 4 components of access to care are coverage, services, timeliness, and workforce. Access to health services is essential as disparities in access to health services affect individuals and society and leads to delays in care, lack of preventive services, hospitalizations that could have been avoided, and unmet health needs.⁴

Access to healthcare impacts:

• Overall physical, social, and mental health status
• Prevention of disease and disability
• Detection and treatment of health conditions
• Quality of life
• Preventable death

Healthcare today is very complex. It is becoming increasingly more difficult for patients to obtain timely care and become connected to the resources they need. One of the hats that navigators wear is that of helping to decrease barriers to care, identify resources that will help the patient through the course of treatment, and assist in making sure patients are getting the recommended screenings needed to stay healthy. Goals of navigation include targeting those populations with the greatest needs, decreasing barriers to care and improving access to the healthcare system with the goal of improving timely high-quality care along with improved outcomes.

The navigator process assists patients throughout the cancer care continuum, which progresses from prediagnosis/diagnosis to treatment to posttreatment and survivorship to end-of-life care.

Although there is no consensus around an optimal point for the patient’s entry into patient navigation in the cancer continuum, the patient-navigator relationship begins at the initial contact with the patient. Early contact with the patient is important for establishing a relationship with the patient.

However, the navigator could enter into the continuum at any point depending on the scope of the program at each institution.⁵ There are many components to navigation. This module will focus on community outreach, which includes prevention and screening.

Patients face many barriers to care. These can be broken down to the following areas:

• Logistical
• Financial
• Treatment
• Social
• Communication
• Emotional/physical health

Logistical barriers include transportation issues, distance from the cancer center, lack of family/social support, poor care coordination, and multiple appointments at different locations. Resources vary throughout the country, so it is important that the navigator have a working knowledge of local resources. Navigators can assist with troubleshooting resources and empowering the patient to come up with a transportation plan to get back and forth to treatment.

Resources for transportation include the following:

• Local American Cancer Society programs
• Community transit systems
• Public transportation services
• Private services
• Some Medicaid plans may provide transportation assistance
• Charity Air flights
• Friends, family, and community resources

The Affordable Care Act has expanded insurance coverage and helped to remove barriers to care by obtaining insurance coverage for previously uninsured patients, prohibited the denial of insurance to people with preexisting conditions, extended dependent coverage, and requires insurance providers to cover cancer screening.⁶ According to Cancer Facts & Figures 2015, 1 in 5 people with health insurance who are diagnosed with cancer use all or most of their savings because of the financial cost of dealing with cancer. Patients who have no insurance or are underinsured have higher medical costs, poorer outcomes, and higher rates of death.⁷

Financial toxicity is a huge barrier for cancer patients and often impacts a patient’s decision to stay on treatment. Financial toxicity refers to the way out-of-pocket expenses can drain the wallets of cancer patients, affect quality of life, and, in fact, become an adverse event of treatment. Patients often face high copays both for clinic visits and medications, face job loss as a result of their diagnosis and treatment, and are unable to meet their financial obligations such as rent, food, and other monthly bills. In addition, many patients have a low socioeconomic status, which affects their ability to meet basic needs. If a cancer center has a financial advocate, the patient should be set up to meet them at their first clinic visit. Financial resources include the following:

• Disease-specific organizations
• Cancer care
• Charity care at the point of care
• Financial advocate if available
• Pharmaceutical companies/specialty pharmacies
• American Cancer Society
• Chronic Disease Fund
• Patient Access Network
• Vocational rehabilitation
• Local charitable organizations

The navigator can assist patients in overcoming treatment barriers by connecting patients with disease-specific organizations such as Support for People with Oral and Head and Neck Cancer or the Multiple Myeloma Research Foundation. Providing patient education and support is a large part of the navigator’s role.

Education regarding treatment and side effects can help patients better understand their treatment and be more compliant in care. It is important to ascertain what the patient’s goals of care are and how a navigator can advocate for the patient and support those goals. This is especially true since their goals may not be congruent with those of the healthcare team. Compliance issues may arise when these goals are not aligned.

Treatment-related toxicities are often a reason patients do not adhere to the prescribed plan of care. Patients often wish to “give up” on getting treatment due to the side effects that impact their quality of life. Navigators play a key role by addressing the patient’s concerns and making sure that the team is aware of the patient’s side effects. Assuring that patients are connected with the proper resources during treatment, such as a pharmacist, a nutritionist, and a supportive care team, can help the patient make it through treatment.

Treatment barriers may include the following:

• Lack of adherence to prescribed regimen, especially oral oncolytics
• Treatment side effects
• Lifestyle/habits
• Complacency
• Lack of understanding of treatment plan
• Patients lost to follow-up care

Emotional and social barriers can manifest in many ways. Social/emotional barriers that impede care may include the following: age, comorbidities/sensory changes, environmental factors (smoking/alcohol use), lack of family/social support, poor family dynamics, mental health issues, and living conditions.

As navigators, it is important to realize that we cannot change the family dynamics, but we can try to connect patients with resources to live a healthier lifestyle, such as smoking cessation programs, counseling, community resources for drug and alcohol abuse, and assisting them with finding a primary care provider to follow them in survivorship care. Other ancillary services such as nutrition, physical therapy, mental health counseling, occupational therapy, and integrative therapies such as acupuncture, reiki, and massage may help in obtaining a healthy lifestyle as well as helping mange the side effects of treatment. Providing calendars and written material at the appropriate literacy level and in the patients’ language are useful tools to help patients.

It is important to remember the caregiver(s) in the treatment plan. Caregiving is not easy, and many caregivers get overwhelmed. They will need additional support as well. Resources for caregivers include counseling, support groups, respite care, and connecting them with the cancer center social worker.

Spiritual distress is a disruption of a person’s belief or value system that can occur at any time in the disease course. It often surfaces at a time of stress, and it is important for the navigator to identify/understand cultural norms related to the patient’s health and illness. Healthcare providers need to ensure that their beliefs/values do not interfere with care. Resources for spiritual distress include the following: the pastoral care department, local clergy, and the patient’s clergy and support system.

Communication barriers come in many forms such as speaking a different language, sensory changes such as visual or hearing loss, cognitive loss, and literacy issues. There is often confusion surrounding tests, medication administration, appointments, and the treatment plan. Navigators can assist in eliminating communication barriers by using translation services and providing educational materials in the patient’s language that is culturally sensitive and at the appropriate literacy level. Communication must be assessed at each patient interaction to evaluate the patent’s understanding of the disease and treatment, as well as to make sure the team knows what the patient’s goals of care are.

Some tools that can assist in communication are written calendars, smartphone applications, and reminder phone calls.

Screening and Prevention Guidelines

Two organizations that develop cancer screening guidelines are the US Preventive Services Task Force and the American Cancer Society. These guidelines are periodically revised based on systematic evidence reviews. Navigators need to keep up to date on the changing cancer screening recommendations and guidelines and be able to speak to patients regarding this important aspect of care. Early detection saves lives as cancer diagnosed at an earlier stage is easier to treat and has better outcomes.

Cancer-related checkups should include examination for cancers of the thyroid, testicles, ovaries, lymph nodes, oral cavity, and skin. Health counseling about tobacco, sun exposure, diet and nutrition, risk factors, sexual practices, and environmental and occupational exposures should be discussed at each checkup. Several organizations recommend a number of cancer screening guidelines. However, recommendations for screening for colon, breast, cervical, lung, and prostate cancer are very similar. The Table depicts an overall summary of screening guidelines for these 5 most common cancers. Every effort should be made to educate and reduce the barriers to screening. Healthcare providers need to take a more proactive approach. They should discuss these cancer screening guidelines with the patient and recommend which test is most appropriate to increase patient awareness and promote long-term health. Patients must also take greater responsibility for their health to lower their risk for cancer.¹⁸

Conclusion

Navigation is a dynamic and constantly changing field. The role was originally developed to help eliminate barriers to care and to promote timely diagnosis and treatment for cancer in underserved populations. Since its inception in the 1990s, the role has grown across the disease trajectory and has helped to identify and eliminate communication, logistical, emotional/social, financial, and treatment-related barriers. 

Test Your Knowledge

1. The Commission on Cancer defined patient navigation as
a) Specialized assistance for the community, patients, families, and caregivers to assist in overcoming barriers to receiving care and facilitating timely access to clinical services and resources
b) Providing assistance with environmental issues such as housing and food
c) Assessing the patient’s barriers to care and assisting the patient in implementing a plan to overcome those barriers
d) Assisting the patient in obtaining financial resources

2. A community needs assessment must be done every 3 years.
a) True
b) False

3. The recommendations for breast cancer screening for a 60-year-old woman is:
a) Clinical breast exam only
b) Yearly mammogram
c) Yearly breast MRI
d) The woman does not need to be screened

4. The best way that a navigator can communicate with a Spanish-speaking patient regarding treatment is by
a) Having the patient’s family or friends act as interpreters
b) Providing educational materials in Spanish
c) Use a language service to translate the information in the patient’s language
d) Use drawings to communicate

5. You are helping a newly diagnosed multiple myeloma patient find transportation options. A resource that could be utilized for this patient to assist with transportation is:
a) The Susan G. Komen Foundation
b) The HealthWell Foundation
c) Corporate Angels Network
d) The American Cancer Society

Answers
1, a; 2, a; 3, b; 4, c; 5, d.

References

1. Freund KM, Battaglia TA, Calhoun E, et al. National Cancer Institute Patient Navigation Research Program: methods, protocol, and measures. Cancer. 2008;113:3391-3399.
2. American College of Surgeons Commission on Cancer. Cancer Program Standards 2012: Version 1.2.1: Ensuring Patient Centered Care. www.facs.org/quality%20programs/cancer/coc/standards. Accessed March 2016.
3. Wright J, Williams R, Wilkinson JR. Development and importance of health needs assessment. BMJ. 1998;316:1310-1313.
4. Office of Disease Prevention and Health Promotion. US Department of Health and Human Services. Healthy People: Access to Health Services. www.healthypeople.gov/2020/topics-objectives/topic/Access-to-Health-Services. Accessed March 6, 2016.
5. Blaseg KD, Daugherty P, Gamblin KA. Oncology Nurse Navigation: Delivering Patient Centered Care Across the Continuum. Pittsburgh, PA: Oncology Nursing Society; 2014.
6. McDougall JA, Ramsey SD, Shih YCT. Financial toxicity: a growing concern among cancer patients in the United States. www.ispor.org/news/articles/ISPORConnections_Vol20No2_MarchApril2014.pdf. Accessed March 1, 2016.
7. American Cancer Society. Cancer Facts & Figures 2015. Atlanta, GA: American Cancer Society; 2015. www.cancer.org/research/cancerfactsstatistics/cancerfactsfigures2015/index. Accessed April 10, 2016.
8. American Cancer Society. What are the key statistics about breast cancer? www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-key-statistics. Accessed March 20, 2016.
9. Siu AL; US Preventive Services Task Force. Screening for breast cancer: US Preventive Services Task Force recommendation statement. Ann Intern Med. 2016;164:279-296.
10. American Cancer Society. The American Cancer Society guidelines for the prevention and early detection of cervical cancer. www.cancer.org/cancer/cervicalcancer/moreinformation/cervicalcancerpreventionandear lydetection/cervical-cancer-prevention-and-early-detection-cervical-can cer-screening-guidelines. Accessed July 16, 2016.
11. US Preventive Services Task Force. Cervical Cancer: Screening. www.uspreventiveservicestaskforce.org/Page/Document/UpdateSummaryFinal/cervical-cancer-screening. Accessed March 20, 2016
12. American Cancer Society. American Cancer Society recommendations for colorectal cancer early detection. www.cancer.org/cancer/colonandrectumcancer/moreinformation/colonandrectumcancerear lydetection/colorectal-cancer-early-detection-acs-recommendations. Accessed January 6, 2016.
13. US Preventive Services Task Force. Screening for colorectal cancer: US Preventive Services Task Force recommendation statement. Ann Intern Med. 2008;149:627-637.
14. American Cancer Society. American Cancer Society recommendations for prostate cancer early detection. www.cancer.org/cancer/prostatecancer/moreinformation/prostatecancerearlydetection/prostate-cancer-early-detection-acs-recommendations. Accessed March 20, 2016.
15. Moyer VA; US Preventive Services Task Force. Screening for prostate cancer: US Preventive Services Task Force recommendation statement. Ann Intern Med. 2012;157:120-134.
16. Wender R, Fontham ET, Barrera E Jr, et al. American Cancer Society lung cancer screening guidelines. CA Cancer J Clin. 2013;63:107-117.
17. Moyer VA; US Preventive Services Task Force. Screening for lung cancer: US Preventive Services Task Force recommendation statement. Ann Intern Med. 2014;160:330-338.
18. American Cancer Society. American Cancer Society Guidelines for the Early Detection of Cancer. www.cancer.org/healthy/findcancerearly/cancerscreeningguidelines/american-cancer-society-guidelines-for-the-early-detection-of-cancer. Accessed April 30, 2016.

Additional Reading

Campbell C, Craig J, Eggert J, et al. Implementing and measuring the impact of patient navigation at a comprehensive community cancer center. Oncol Nurs Forum. 2010;37:61-68.
Carroll JK, Humiston SG, Meldrum SC, et al. Patients’ experiences with navigation for cancer care. Patient Educ Couns. 2010;80:241-247.
Fillion L, de Serres M, Cook S, et al. Professional patient navigation in head and neck cancer. Semin Oncol Nurs. 2009;25:212-221.
Freeman HP, Rodriguez RL. History and principles of patient navigation. Cancer. 2011;117(suppl 15):3539-3542.
Koh C, Nelson JM, Cook PF. Evaluation of a patient navigation program. Clin J Oncol Nurs. 2011;15:41-48.
Palos GR, Hare M. Patient, family caregivers, and patient navigators: a partnership approach. Cancer. 2011;117(suppl 15):3592-3602.
Swanson J, Koch L. The role of the oncology nurse navigator in distress management of adult inpatients with cancer: a retrospective study. Oncol Nurs Forum. 2010;37:69-76.