Patient Navigation to Enhance Access to Care for Underserved Patients with a Suspicion or Diagnosis of Cancer

Innovative strategies aimed at achieving timely referrals for patients with cancer, particularly those with limited resources, are needed. One such strategy is patient navigation (PN), which is a coordinated process of assistance that helps patients overcome personal and system barriers to obtain timely care. This article reports the results of a study designed to evaluate an evidence‐based and culturally sensitive PN program aimed at reducing the time to referral to a cancer center for patients with a suspicion or a diagnosis of cancer seen at a public general hospital in Mexico.

Abstract

Background.

Interventions aimed at improving access to timely cancer care for patients in low‐ and middle‐income countries (LMIC) are urgently needed. We aimed to evaluate a patient navigation (PN) program to reduce referral time to cancer centers for underserved patients with a suspicion or diagnosis of cancer at a public general hospital in Mexico City.

Materials and Methods.

From January 2016 to March 2017, consecutive patients aged >18 years with a suspicion or diagnosis of cancer seen at Ajusco Medio General Hospital in Mexico City who required referral to a specialized center for diagnosis or treatment were enrolled. A patient navigator assisted patients with scheduling, completing paperwork, obtaining results in a timely manner, transportation, and addressing other barriers to care. The primary outcome was the proportion of patients who obtained a specialized consultation at a cancer center within the first 3 months after enrollment.

Results.

Seventy patients (median age 54, range 19–85) participated in this study. Ninety‐six percent (n = 67) identified >1 barrier to cancer care access. The most commonly reported barriers to health care access were financial burden (n = 50) and fear (n = 37). Median time to referral was 7 days (range 0–49), and time to specialist appointment was 27 days (range 1–97). Ninety‐one percent of patients successfully obtained appointments at cancer centers in <3 months.

Conclusion.

Implementing PN in LMIC is feasible, and may lead to shortened referral times for specialized cancer care by helping overcome barriers to health care access among underserved patients.

Implications for Practice.

A patient navigation program for patients with suspicion or diagnosis of cancer in a second‐level hospital was feasible and acceptable. It reduced patient‐reported barriers, and referral time to specialized appointments and treatment initiation were within international recommended limits. Patient navigation may improve access to care for underserved patients in developing countries.

Introduction

Noncommunicable diseases, such as cancer, have surpassed infectious diseases and represent one of the most threatening health issues in low‐ and middle‐income countries (LMICs) [1]. By 2025, 60% of new cancer cases and 68% of all cancer deaths will occur in the developing world, and health systems in these countries are struggling to respond to the rising cancer burden [2]. Although cancer incidence and mortality have been reduced in developed countries, LMICs face considerable barriers to cancer control, including limited human and financial resources, poorly developed health care services, poverty, and an uniformed population [3].

The incidence of advanced disease and mortality‐to‐incidence ratios are considerably higher in LMICs than in developed nations [4]. This phenomenon is partially driven by diagnostic and treatment delays [5], which are a consequence of inequities in health care access, sociocultural barriers, and poor awareness about adequate cancer screenings. As in other LMICs, cancer mortality rates in Mexico are in part driven by late diagnosis and limited access to care [6]. Mexico's health care system is highly fragmented, which represents a challenge for referrals between primary care hospitals and cancer centers. The Mexican health care system is composed of three large segments: social security institutions that provide access to medical care to formally employed Mexicans and their families; care provided by the Ministry of Health to unemployed or informally employed Mexicans without access to social security; and private insurance catering to the general population and mostly financed through out‐of‐pocket payments. Multiple parallel health care systems for different population groups increase inequity and reduce total available resources, which contributes to delays in cancer care [7]. In Mexico, most delays occur before patients arrive at cancer centers, due to prolonged waiting times, poor accessibility, and lack of coordinated referral systems. Long intervals between problem identification and treatment have mostly been attributed to health care system delays, which also represent one of the main causes of the higher incidence of advanced disease seen in other LMICs [8], [9]. Previous studies conducted within the Mexican health care system have shown that health system delays for patients with breast cancer have a median length of 5 months, and that these delays are closely correlated with a higher frequency of advanced stages at the time of diagnosis [10].

Innovative strategies aimed at achieving timely referrals for patients with cancer, particularly those with limited resources, are needed [9]. One such strategy is patient navigation (PN), which is a coordinated process of assistance that helps patients overcome personal and system barriers to obtain timely care [11]. Studies have shown that PN can improve quality of care, reduce health disparities, and lead to a higher proportion of patients receiving standard cancer care among underserved populations in the U.S. [12], [13]. However, no formal interinstitutional navigation programs of this type currently exist in Mexico.

In this pilot study, we evaluated an evidence‐based and culturally sensitive PN program aimed at reducing the time to referral to a cancer center for patients with a suspicion or a diagnosis of cancer seen at a public general hospital in Mexico City. Our predefined main objective was for patients to obtain a referral to a cancer center and a specialist appointment within the first 3 months after enrollment in the program.

Materials and Methods

We evaluated the feasibility of a PN intervention for patients with a suspicion or diagnosis of cancer seen at Ajusco Medio General Hospital (AMGH) who needed a referral to a specialized center for diagnostic or therapeutic procedures.

Participants and Settings

Eligible participants were men and women aged ≥18 years with suspicion or diagnosis of cancer treated at AMGH. The patient navigator and the principal investigators (Y.C.G. and E.S.P.C.) presented the PN program to physicians, nurses and administrators at AMGH, and an office was set up for the patient navigator in the main hospital building. Patients were identified and referred to the PN program by physicians from the following medical specialties: surgery, dermatology, urology, hematology, gastroenterology, family medicine, and emergency medicine. Additionally, the patient navigator identified cases diagnosed with cancer at the pathology department, informed their treating physicians about biopsy results, and offered inclusion in the PN program.

AMGH is a second‐level public hospital located in southern Mexico City providing medical care to uninsured patients who mostly pay out of pocket. It has 144 beds and provides the following medical services: general surgery, urology, dermatology, gastroenterology, obstetrics, pediatrics, pulmonary medicine, cardiology, oncologic surgery, and emergency care [14]. Diagnostic radiology offered by the hospital includes X‐rays, computed tomography, and ultrasound. Additionally, it has an anatomopathology unit that provides histopathology and cytology studies [14]. AMGH did not offer routine screening for breast, cervical, or colorectal cancer during the study period. The hospital was selected as the study site based on the approximate number of cancer cases diagnosed in 2014 (n = 82) (Yanin Chavarri‐Guerra, M.D., M.Sc., Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubiran, personal communication, November 2015).

Patients with previous malignancies, as well as those with private health insurance coverage or social security, were excluded. Institutional Review Board (IRB) approval was obtained at the researchers' institution (Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubiran) and at AMGH.

Interventions

Consecutive patients seen at AMGH over a 15‐month period who fulfilled inclusion criteria were invited to participate. After signing appropriate informed consent, baseline sociodemographic data were obtained. Patients completed a psychosocial interview to obtain information regarding the existence of perceived barriers to health care access (such as financial burden, fear, communication issues, transportation, caregiving, housing, and disability). A trained patient navigator assisted patients with scheduling, completing paperwork, obtaining results, addressing transportation issues, and other barriers. The patient navigator conducted weekly follow‐up telephone calls with participants. During each call, the patient navigator asked the patients about barriers to care encountered during the previous week, and suggested strategies to overcome them. These calls continued until an appointment with a specialist at a cancer center was obtained. At this point, the intervention was terminated, patients completed a patient satisfaction survey evaluating their experience with PN, and the patient navigator enquired about any barriers still perceived by the patient.

Outcomes and Statistical Considerations

Our primary objective was assessing the feasibility of the PN program. Investigators determined that the patient navigator program would be considered feasible if at least 70% of enrolled patients obtained an appointment with a specialist at a cancer center within 3 months from enrollment. As secondary objectives, we assessed changes in the number of barriers after the PN intervention, as well as patient satisfaction after completion of the PN intervention using a Likert‐type questionnaire.

Data are presented as medians, means, or proportions. Descriptive statistics were used to analyze clinical and demographic characteristics. Confidence intervals (CIs) of proportions were used to assess feasibility. Using a 95% CI and a margin of error of 0.3, we calculated that a sample size of at least 68 patients who obtained an appointment with a specialist at a cancer center was necessary to establish feasibility.

We used paired t tests to assess changes in barriers to health care access before and after PN. A two‐sided p value of <.05 was considered significant. We reported here all enrolled patients signed an IRB‐approved patient consent form. XLSTAT software version 2017.6 was used for statistical calculations. This manuscript follows the recommendations for reporting feasibility studies developed by Thabane et al. [15].

Results

A total of 70 patients signed consent and were enrolled between January 2016 and March 2017 (Fig. 1). Median age was 54 years (range 19–85), and 56% (n = 39) were female. Demographic characteristics are shown in Table 1. Median follow‐up was 58.5 days (range 0–267). Referral diagnoses included genitourinary (33%, n = 23), gastrointestinal (23%, n = 16), endocrine (18%, n = 13), hematologic (10%, n = 7), breast (3%, n = 2), and other malignancies (13%, n = 9). Forty‐nine percent of patients (n = 34) reported deprivation (markers of poverty) in at least one basic need (education, housing, running water, toilet access, electricity, and/or concrete flooring). Median distance from the patients' home to AMGH was 13.2 kilometers (range 2.1–42.7), and median transfer time by public transportation was 87 minutes (range 20–172).

Figure 1.

Study flow diagram. Patients were enrolled at the second‐level hospital and referred to a cancer center for diagnostic workup, treatment, or both.

Abbreviation: PN, patient navigation.

Table 1. Baseline sociodemographic characteristics.

^aAverage monthly household income in Mexico is $835 USD [20].

Barriers to Health Care Access and Patient Satisfaction

Ninety‐six percent of patients (n = 67) identified at least one barrier to health care access (median number of barriers 3, range 0–9). At baseline, the most frequently identified barriers were financial burden (71%) and fear (53%; Fig. 2). At the end of follow‐up, 45% of patients reported facing no barriers in health care access, and the median number of identified barriers decreased to one (range 0–6; p < .01). Fifty patients completed the satisfaction questionnaire, of whom 98% (n = 49) were highly satisfied with the PN program, 94% (n = 47) believed it helped them obtain counseling or answers regarding their health issues, and 100% felt supported by the patient navigator (Fig. 3).

Figure 2.

Perceived barriers at baseline and after patient navigation. Contains the proportion of patients reporting each barrier (orange at baseline; blue at study end).

Figure 3.

Patient satisfaction questionnaire results. Contains the proportion of patients that answer each question of the patient satisfaction questionnaire at the end of the study. Each bar corresponds to a question. Q1: My health concerns were understood. Q2: I obtained counseling regarding my health issues. Q3: I was treated with respect. Q4: I participated in decisions regarding my health care. Q5: I had enough time with the patient navigator. Q6: I felt supported by patient navigation. Q7: Making an appointment was easy. Q8: I knew what was the next step on my health care. Q9: I trusted the patient navigator. Q10: I knew whom to contact when I had doubts. Q11: I am satisfied with the help I received from patient navigation.

Patient Navigation Outcomes

Ninety‐seven percent of patients (n = 68) were successfully navigated to a specialized center (Fig. 1). Goals of referral were treatment initiation in 50% of cases; diagnostic workup in 28%; and both in 22%. Malignancy was ruled out after diagnostic workup in 15 patients (22%). Median time to referral was 7 days (range 0–49), and time to first specialist appointment was 27 days (range 1–97). Ninety‐one percent of patients (n = 64, 95% CI 83%–96%) had a specialist appointment within the first 3 months after enrollment. Among the 51 patients in whom a diagnosis of cancer was confirmed, 98% (n = 50, CI 89.7%–99.6%) had a specialist appointment within the first 3 months after enrollment, with a median time to first specialist appointment of 27 days (range 1–97) and a median time to treatment initiation of 64 days (range 3–204). For the 15 patients in whom cancer was ruled out, median time to first specialist appointment was 24.5 days (range 1–94). The navigator contacted each patient a median of 6 times during follow‐up (range 1–24), spending a median of 135 minutes (range 45–270) with each individual. The navigator had to place a median of 7 phone calls (range 1–69) to obtain one appointment at a cancer center.

Discussion

Our results demonstrate that an evidence‐based and culturally sensitive patient navigation program for patients with suspicion or diagnosis of cancer at a general hospital in an LMIC is feasible, and that such a program may lead to an improved time to referral for specialized cancer care.

PN programs first emerged in high‐income countries as a strategy to improve cancer care among patients from underserved populations. Such programs have been used in different scenarios across the continuum of cancer care, including diagnosis, treatment surveillance and palliative care, and in various settings, such as community and academic hospitals. Outcomes vary widely from study to study, but overall results suggest that PN has the potential to improve cancer‐screening rates; reduce diagnostic delays; favor treatment adherence and follow‐up; and improve patient satisfaction with cancer care [11], [16].

In our study, we evaluated the benefit of a PN program for referring patients with a suspicion or diagnosis of cancer from a general hospital to a specialized cancer center. In Mexico, as in many other countries (including both high‐income and LMICs), fragmented health care systems limit access to timely cancer care. First‐ and second‐level hospitals, for instance, usually lack the personnel and equipment necessary to accurately diagnose or rule out cancer. On the other hand, most cancer centers only provide care for those patients with a confirmed cancer diagnosis, which means that in many cases, patients may require several visits to various centers before obtaining an accurate diagnosis and referral. All of these technical and administrative barriers lead to diagnostic and therapeutic delay, which in turn may lead to worse outcomes. In fact, a qualitative study conducted among uninsured Mexican patients demonstrated that many required repeated imaging studies and biopsies before a diagnosis of cancer was made, and that this led to diagnostic delays of as long as 12–18 months in some cases [17]. In our study, approximately half of the patients needed support in order to confirm or rule out a suspicion of cancer through procedures not available at the referring second‐level hospital. In these cases, the patient navigator was able to help them obtain a definitive diagnosis at a specialized center by assisting their treating physician in selecting the most appropriate specialized center for preforming the needed testing and by helping patients comply with administrative requirements at the referral institution. Moreover, a quarter of patients requiring diagnostic workup were able to receive appropriate treatment after returning with their results to the referring hospital. This highlights some of the difficulties encountered in developing countries during the complex journey toward a diagnosis of cancer, and shows that PN may be a useful strategy to overcome those difficulties.

Identifying barriers to care also allows navigators to focus on resolving other issues that contribute to delays [11]. In our study, the most common barriers were financial burden and fear, which are also reported by Latinos with cancer in the U.S. [17]. This highlights the need for public health educational research in LMICs in order to increase cancer awareness through education, empowering the public with health‐related information and reducing fear of cancer prevention practices. Interestingly, we found a reduction in the number of barriers at the end of follow‐up, which may be a consequence of PN. Furthermore, our results showed that PN decreased barriers and improved referral times even though a high proportion of the population was living in extreme poverty and deprivation (half of our patients reported living without at least one basic need), both of which have been shown to be associated with poor cancer outcomes in large urban areas [18].

Delays in treatment initiation can be attributed to both the patients and the health care system [9], [10]. Our study was designed to shorten health care system delays by allowing for swifter referral between centers. In countries with integrated health care systems, guidelines have been drafted to determine what is considered an acceptable delay. In the U.K.’s National Healthcare System, for instance, the recommended time from referral to specialist opinion is 2 weeks, and time to treatment initiation is 62 days [19]. In contrast, health care system delays up to 5 months have been reported for patients with cancer in Mexico [9]. Our results (4 weeks to a specialist opinion and 64 days to treatment initiation) represent an improvement over local historical data, and mirror recommendations from high‐income countries [19].

The main limitation of our study is the lack of a control arm. However, establishing the feasibility of PN within a fragmented health care system in an LMIC paves the way for future studies comparing PN with standard care. Patients with all tumor types at various time points in their disease trajectory were included. Although this may be seen as a limitation, it also shows that PN could be useful for all cancer patients. Additionally, the types of tumors included in our study differ from the most commonly reported malignancies in Mexico and in the rest of Latin America, such as breast and cervical cancer [6], [7]. This is mainly a consequence of the fact that AMGH did not offer mammographic screening on a routine basis during the study period, and that Mexico City's Ministry of Health has a special program for the detection and referral of patients with abnormalities on cervical cytology. However, we believe that this is not a limitation but a strength of the study, because it shows that PN can help patients with less common tumors, which have historically been overlooked by health care authorities. Finally, we did not measure the cost‐effectiveness of the PN intervention, mainly because this was a single‐arm study. However, we acknowledge that including cost‐effectiveness will be fundamental for future studies of this type of interventions in limited‐resource settings, and for the inclusion of PN as standard of care.

Conclusion

Our study shows that PN represents a feasible and innovative solution to overcoming health care system barriers in LMIC, and that it may decrease referral times to cancer centers for patients with a suspicion of cancer or with cancer. Targeted interventions such as PN could allow patients to obtain timely care, and warrant further research.

Author Contributions

Conception/design: Yanin Chavarri‐Guerra, Enrique Soto‐Perez‐de‐Celis, Alexandra Bukowski, Paul E. Goss

Financial support: Yanin Chavarri‐Guerra

Administrative support: Yanin Chavarri‐Guerra, Enrique Soto‐Perez‐de‐Celis

Provision of study material or patients: Sandra L. San Miguel de Majors, Jesus Sanchez‐Gonzalez, Samuel Ahumada‐Tamayo, Lorena Viramontes‐Aguilar, Oscar Sanchez‐Gutierrez, Bernardo Davila‐Davila, Paul E. Goss

Collection and/or assembly of data: Yanin Chavarri‐Guerra, Enrique Soto‐Perez‐de‐Celis

Data analysis and interpretation: Yanin Chavarri‐Guerra, Enrique Soto‐Perez‐de‐Celis, Wendy Ramos‐López, Jesus Sanchez‐Gonzalez, Samuel Ahumada‐Tamayo, Lorena Viramontes‐Aguilar, Oscar Sanchez‐Gutierrez, Bernardo Davila‐Davila, Patricia Rojo‐Castillo, Viridiana Perez‐Montessoro, Alexandra Bukowski, Paul E. Goss

Manuscript writing: Yanin Chavarri‐Guerra, Enrique Soto‐Perez‐de‐Celis

Final approval of manuscript: Yanin Chavarri‐Guerra, Enrique Soto‐Perez‐de‐Celis, Wendy Ramos‐López, Sandra L. San Miguel de Majors, Jesus Sanchez‐Gonzalez, Samuel Ahumada‐Tamayo, Lorena Viramontes‐Aguilar, Oscar Sanchez‐Gutierrez, Bernardo Davila‐Davila, Patricia Rojo‐Castillo, Viridiana Perez‐Montessoro, Alexandra Bukowski, Paul E. Goss

Disclosures

Yanin Chavarri‐Guerra: Roche (RF). The other authors indicated no financial relationships.

(C/A) Consulting/advisory relationship; (RF) Research funding; (E) Employment; (ET) Expert testimony; (H) Honoraria received; (OI) Ownership interests; (IP) Intellectual property rights/inventor/patent holder; (SAB) Scientific advisory board