Patient Navigation Based Care-delivery to Reduce Inequities in Cancer Care Among Immigrants and Refugees: A Commentary on the Successes and the Unmet Needs

Introduction

As of 2019, a total of 44.9 million documented immigrants and refugees (IRPs) reside in the US.¹ Although annual refugee resettlement and ceiling policies have led to smaller numbers and slower rates of refugees arriving in the US in recent decades, from 250,000 in 1980 to fewer than 12,000 in 2020,² there have been periodic upshifts due to political circumstances. For example, after the recent political change in Afghanistan in August 2021, a total of 150,000 Afghan refugees arrived in the US.¹ The constant and diverse stream of IRPs poses many healthcare challenges including healthcare access and routine health maintenance given their new and unfamiliar context. At the same time, healthcare systems do not have adequate familiarity, fiscal and human resources, or trusted connectors to these communities to forge bridges to healthcare quickly.³

The ongoing influx of IRPs within the United States has generated heterogeneity among this group in terms of spoken language, culturally-based health behaviors, and health literacy rates.⁴ Moreover, IRPs are faced with their own unique physical and psychological health challenges that, in some cases compel their emigration here. Indeed, given the diversity of racial, ethnic, and religious beliefs, IRP populations will have different sociocultural norms that influence healthcare decisions.^5–8 As such, diverse approaches to addressing their unmet health needs and specific health challenges are necessary. At the same time, IRPs share some commonalities with historically underserved communities in the U.S., including the lack of healthcare access and limited health literacy. IRP’s therefore similarly struggle to navigate the complex healthcare systems, which leads to suboptimal use of primary care visits and preventive healthcare, including cancer screening.⁹ Furthermore, most patient education materials are developed at high school level standards in the US, and resources for those with low English proficiency and health literacy are lacking.^10,11 This gap poses additional challenges to cancer screening and control within the IRPs. Given the influx of IRPs, patient navigators (PNs) to help them navigate through the US healthcare system and to assist with coordination of healthcare screenings, follow up medical appointments would be invaluable.

While immigrants and refugees vary in literacy rates, employment rates, and financial securities, some challenges may overlap.^12,13 For example, among the refugee populations, suboptimal use of cancer screening may be related to limited access to resources and barriers related to social determinants of health (SDOH) such as food and housing insecurities, barriers to language, technology, transportation, and neighborhood factors.^14,15 However, among the immigrant populations, low cancer screening rates may not be directly related to the barriers associated with the SDOH, but other overlapping factors such as lack of trust in preventive healthcare and healthcare systems and/or cultural beliefs limiting timely cancer screening procedures.¹⁶ Other impediments include the inability to leave work for medical appointments, difficulties navigating through the system to schedule an appointment, fear of an abnormal test result, and anxiety around spousal and family acceptance of cancer screening.^17,18

The ongoing COVID-19 pandemic has significantly affected IPRs.¹⁹ The above SDOH specific to IPRs were further exacerbated during the pandemic with loss of job/economic insecurity, high population density, public transport dependency, high contact risk jobs, comorbidities, poor digital health access, fear/xenophobia, and loss of insurance.^20,21 More specifically cancer patients have been significantly affected by the pandemic as evidenced by the World Health Organization reporting significant disruptions in cancer care early in the pandemic, delaying diagnosis, therapy, and clinical trials.^22,23 A retrospective cross-sectional study conducted by Hsueh et al. demonstrated that limited English proficiency was associated with lower video visit usage.²⁴ For many IPRs who have limited English proficiency, problems with access to telemedicine and scarcity of multi-lingual PNs or translators posed a significant challenge. Utilization of PNs must be viewed within the context of the ongoing COVID-19 pandemic, which as described above has exacerbated health disparities for IPRs as a whole and even more specifically in the subset IPR cancer patients.

Patient navigation, a critical need for the underserved

To address both the shared system-level and specific sociocultural barriers to healthcare, linguistically appropriate and culturally tailored care-delivery models, i.e. innovative methods that employ utilization of PNs, have been deployed with moderate success.^25–27 The use of patient navigation, specifically within the context of cancer control, has been assessed to elucidate barriers and facilitators to improved care access.^18,28 Certain factors have portended success including collaboration with the local community – based organizations (CBOs) or faith-based organizations (FBOs), and using mobile and telehealth-based care-delivery models which have yielded positive gains in mammography and cervical cancer screening among various IRPs.^26,27 Herein, a discussion on the historical aspects of PN in the US is necessary. The effective involvement of CBOs and FBOs in cancer care delivery to IRPs in the US may also be supportive in expanded discussions on equity.

Historical aspects of patient navigation in cancer control across the globe

In the early 1990s, under the pioneering work of Dr. Harold Freeman, care-delivery models incorporating PNs gained traction. PN- based care-delivery improved cancer screening rates among diverse populations, especially in low-and middle-income countries (LMICs).^29–32 For example, the Cancer Project launched in a province of India used volunteer village health workers to help spot early signs of head and neck cancer, resulting in over 50% of those referred for screening testing positive for cancer.³³ In the Caribbean, Badal et al. developed a program to train lay navigators in multiple domains of cancer care aligning with the guidelines of the American Cancer Society and the National Cancer Institute (NCI). This PN training course focused on development of a set of comprehensive core competencies, clinical PN skill requirements and curriculum development.³⁴ A total of 28 participated in this program with varied backgrounds, and programmatic skills were evaluated in three areas (navigation skills, research skills and professional sills). The ACS/NCI guidelines’ based training was successful and the lay navigators evaluated that the objectives of the curriculum and the content were met.³⁴

Patient Navigation in Cancer Prevention, and screening

Genetic testing

One area of cancer control that PNs are underutilized is cancer genetic testing and counseling. The overall rates of genetic testing for cancer susceptibility are lower across all underserved populations in the US, Europe, and Asia, and clinical studies exploring the barriers in genetic testing and counseling among IRPs are limited.^35–40 Unfortunately, multiple factors play a role in access or referral to genetic testing, such as the availability of genetic counseling and testing services in rural communities, insurance coverage, patients’ perspectives, and provider-patient interactions.⁴¹ Due to increases in providers’ time constraints, with training, PNs can function as liaisons to increase access and promote genomic literacy for high-risk families to genetic counseling sessions.⁴² Culturally tailored genetic counseling has been successful among Black women.¹¹ Permuth-Wey et al. successfully developed a BRCA1/2 genetic education material for Black women, which was personalized and relevant to Black communities in a 12-page booklet; the authors minimized technical and medical jargon, and used images and clinical vignettes as an adjunct to the existing patient education materials. Although limited among IRPs, family-centered genetic counseling, and community-based genetic counseling education have been successful care-delivery models in counseling for cystic fibrosis among newborns.^42,43 In a study by Cheung et al., culturally informed genetic services were evaluated among Somali immigrants in Minnesota. The authors conducted semi-structured interviews examining perspectives on genetics, barriers to genetic services, genetic testing, and the influence of religious and cultural beliefs in a thematic approach. Participants verbalized lack of familiarity with genetics, family, cultural and religious beliefs playing a significant role in the uptake of genetic testing.⁴⁴ Patient navigation was also successful in monitoring follow- up appointments for genetic counseling and testing services among patients who tested positive for Lynch Syndrome (LS) screen . Miesfeldt et al. evaluated patients who had a positive LS screening test, and through navigation, 42% of these patients underwent genetic counseling, and 33% attended genetic testing, indicating the efficacy of PN.⁴⁵

Within the US, PNs’ role in advancing cancer control also gained interest.^46,47 In a recent policy statement by the American Society of Clinical Oncology (ASCO), the organization underscored the vital need to provide equitable access to cancer research, prevention strategies to reduce aggressive cancer incidences, and treatment.⁴⁸ These disparities have highlighted the unmet needs and opportunities for health systems’ strategic planning of infrastructure, workforce development, PN training, community-based participatory research (CBPR), and community-academic collaborations.^48,49 Lastly, the underutilization of leveraging faith-based organizations in many of the outreach efforts has lessened the impact of dedicated research databases for data collection.⁴⁸ Through the partnership with CBOs and FBOs, many studies have reported PN-guided improvements in cancer screening for breast cancer.^18,50,51 Efforts to train CHWs in low- and middle-income countries have also been successful in demonstrating the ability to increase early detection of breast cancer.^32–34 As an example, Gutnik et al reported on an effort in Tanzania wherein the absence of access to mammography, CHWs were trained to help women learn how to perform breast self-examinations (BSE) resulting in significant downstaging of diagnoses after three years.³² Results from a program in Malawi using laywomen to conduct clinical breast examinations (CBE) and provide related education reported positive outcomes for participants who received the education and CBE, and a motivation to share their acquired knowledge to increase screening among their social networks.^33,34

Patient Navigation in Cancer treatment, and survivorship

PNs are underutilized in active cancer treatment, survivorship and palliative care which represents a growth opportunity. In a study, Rohan et al., examined PNs and community health workers engagement across National Comprehensive Cancer Control Programs (NCCCP) and reported that 82% (n=53) of 65 NCCCP action plans had content related to PN, and their involvement in cancer screening (60%), and survivorship (55%). The majority of these plans (81%) described workforce development, training and standardizing roles and competencies. However, the patient level involvement of PN included addressing their barriers in 36% (n=23) of patients, outreach (36% (n=19)), resource dissemination (25% (n=13)), psychosocial support (9% (n=5)), clinical trial discussion (8% (n=4)),reducing disparities (40% (n=21)), highlighting the unmet needs in this area.⁴⁷ Other studies also highlight the efficacy and potential opportunities of PN- based care-delivery and cancer care navigation to address the barriers, including patient education based on an individual’s health literacy, connection to community resources, and offering cancer screening via governmental programs.^52–54

Regrettably, while the number of cancer survivors from underserved communities, including IRPs, is increasing, overall inequities in cancer survivorship are worsening.⁵⁵ Potential reasons for overall inequities in cancer survivorship include fragmented care after patients no longer see their oncologist, lack of knowledge of appropriate health behaviors after cancer, and barriers to information about financial or psychosocial support.^56–58 All of these reasons are compounded for non-English speakers and immigrants.^59,60 The ongoing challenges for cancer survivors, including managing their long-term treatment-related toxicities and psychosocial aspects, continue across all underserved communities, including IRPs.⁶¹ However, there are currently few models for delivering culturally-tailored and linguistically-appropriate care for IRPs in terms of survivorship.^62,63 Wenzel et al. conducted focus groups evaluating the role of community health workers in navigating and coordinating cancer treatment and addressing the needs among older African American cancer survivors. Although most of the study participants had limited prior experience with navigation, the authors reported participants’ acknowledgment of their support in both formal and informal caregiving and the need for ongoing studies in this area.⁶⁴

The paucity of health literacy-led cancer education tools and care delivery, an unmet need

Currently, educational material dedicated to patients with low health literacy is lacking.^11,65 Most cancer centers in the US offer patient educational resources in English and Spanish leaving out all other languages for minority and refugee populations. Nevertheless, even for English proficient patients, there is a dearth of educational resources for patients with low health literacy, as reviewed by Parker et al.¹¹ The authors reported a paucity of literature in health literacy-based development and a lack of incorporating participants’ feedback into chemo education tools for breast cancer patients. The authors identified crucial gaps in three categories: 1) theoretical underpinnings using theoretical frameworks for educational material development, 2) health literacy principles, and 3) pilot testing of the educational materials.¹¹ The emphasis was on written material development in the first two categories to promote clarity/ readability of the content and graphics and illustrations. Only three pilot studies in their review incorporated feedback from patients and their families into the written content.^66–68 Furthermore, given the rapidly evolving changes in the field of oncology and advances in technology, patients’ learning styles have evolved with preferences of video/online-based information in addition to written materials.^69–71 In a Rural Oncology Literacy Enhancement Study (ROLES), Martinez- Donate et al. conducted in-depth interviews and health literacy assessments among five rural oncology clinics. They found multiple unmet patient navigation needs, health literacy limitations leading to barriers in quality cancer care.⁵² More recently, Suk et al. showed that those of Asian ethnicity had higher rates of overdue cervical cancer screening compared to non-Hispanic White individuals with lack of knowledge reported as the biggest barrier to receiving timely screening across all study groups, further highlighting the gaps in health literacy and the important role PNs can play in cancer screening of IRPs.⁷² At a healthcare systems’ level, lack of patient education material based on their health literacy is a barrier, and we must develop patient education material focusing on various health literacy levels, and utilization of PNs in patient education may temporarily overcome some of the existing barriers.

The importance of patient navigation models and future directions

Research and previous experience have demonstrated that patient navigation plays a vital role in cancer control and cancer care delivery, particularly in meeting sociocultural and language needs; and addressing the SDOH-related barriers to healthcare access among minority communities, including IRPs.^{18,25,31,54,73} Despite the shortage of multilingual PNs, some institutional investment may contribute to building a deep trust among the communities and patients, especially for those with mistrust in the health systems, and for those who are linguistically challenged to address their worry and fear around cancer screening procedures, treatment and survivorship.^16,27 Similarly, collaboration with community- and faith-based organizations in care-delivery models are of utmost importance to bridge the gaps and build trust between the providers and patients.^27,74 Many other providers and researchers have also used mobile health technologies such as a mobile mammographic unit delivering the screening at faith-based organizations, catering to women with language and transportation barriers.¹⁸ Although a few studies examined screening and education on cervical and colorectal cancer screening and other behavioral and lifestyle modifications such as smoking cessation, expansion of these efforts through multilingual PN-based care delivery with community engagement and outreach is vital to the target populations.⁷⁵ Furthermore, future efforts in dedicating research funding to PN-led care in these areas are essential to address the inequities across the cancer continuum.

Conclusions

As the U.S. becomes increasingly diverse, new models of care delivery drawing on lessons learned from the successful use of PNs in LMICs can be used to address barriers to quality cancer care faced by IRPs. Optimizing collaborations with the community- and faith-based organizations can assist in overcoming cultural and linguistic hurdles and building trust between individuals and the health care system. More research is needed to define best practices and demonstrate cost-effectiveness to build sustainable programs.

Conflict of interest

None

Funding

Previously funded by Susan G. Komen Foundation

Ethical statement

Research was approved by the IRB at MCW, and the research has been conducted in accordance with institutional guidelines and ethics committee

Acknowledgement

We acknowledge all the community partners and the faith-based centers in Milwaukee and the neighboring counties for their dedication and support in bringing breast cancer awareness among women. Also, the authors are thankful to the community leaders, volunteers, CHWs, navigators and the interpreters who spent countless number of hours throughout the study period

Author contributions

i. Sailaja Kamaraju, MD, MS: conception and design
ii. Sailaja Kamaraju, Melissa DeNomie, Anjishnu Banerjee, Arman Tahir, Fauzie Quereshi: Data collection and assembly
iii. Sailaja Kamaraju, Anjishnu Banerjee, Melissa DeNomie: Data analysis, manuscript writing
iv. Melinda Stolley: mentor

All authors have approved the manuscript