Opt-Out Patient Navigation to Improve Breast and Cervical Cancer Screening Among Homeless Women

Abstract

Background:

A patient navigation model was implemented to improve breast and cervical cancer screening among women who were homeless in five shelters and shelter clinics in New York City in 2014.

Materials and Methods:

Navigation consisted of opt-out screening to eligible women; cancer health and screening education; scheduling and following up for screening completion, obtaining, and communicating results to patients and providers; and care coordination with social services organizations.

Results:

Women (n = 162, aged 21–74, 58% black) completed mammogram (88%) and Pap testing (83%) from baselines of 59% and 50%, respectively. There was no association between mental health or substance abuse and screening completion. Adjusted analysis showed a significant association between refusing/missing Pap testing and older age (odds ratio [OR] 1.12, 95% confidence interval [CI] 1.04–1.20); independent predictors of mammogram included more pregnancies (OR 0.57, 95% CI 0.37–0.88) and older age (OR 0.84, 95% CI 0.79–0.90).

Conclusions:

Opt-out patient navigation is feasible and effective and may mitigate multilevel barriers to cancer screening among women with unstable housing.

Introduction

Every night, more than 500,000 people experience homelessness in the United States.¹ Up to 70% of the homeless are from racial and ethnic minorities; close to 40% are women.^1,2 People who are homeless have twice the cancer mortality of the general population.^3,4 Moreover, cancer is among the top two leading causes of mortality in the persons who are homeless and older than 45,^3,5 in part, due to a high burden of risk behaviors due to multiple social factors, including early sexual activities, multiple partners, smoking, and poor access to cancer screening.^6
–8 The annual and biennial mammography rates among women who are homeless aged 50–74 were 32% and 47%–59%, respectively,^8

–11 compared with 71%–74% in the general population.¹² Self-reported Pap testing rates among women who were homeless were reported ∼55%,^10,11,13 despite positive attitudes toward cancer screening.^9,10 Majority of the persons who experience homelessness are from racial and ethnic minority and share some of common barriers to cancer screening with minorities, including lack of insurance, lack of regular source of care and provider, and language barriers.^14

–18 There are specific provider- and system-level barriers related to their social condition as well,^7

–11 including difficulty preparing for screening procedures, keeping appointments, navigating the complex healthcare system, inadequate screening recommendations by the providers, and stigma and misconceptions regarding their healthcare priorities.^7,9,13,19,20

Navigation models have improved breast cancer screening up to 87% for racial and ethnic minorities and refugee women,^21

–25 shown sustained improvement in cervical cancer screening rates among minorities from 16%–59% to 82%,^21,25,26 and improved the follow-up rates for abnormal Pap tests up to 35%.^26,27 However, these strategies have not yet been evaluated in the homeless who face additional barriers to care. We developed and assessed an opt-out cervical and breast cancer screening navigation program delivered in the shelters and shelter-clinics in New York City (NYC) among women who were not up-to-date with recommended screening.

Materials and Methods

Settings and participants

At NYU Lutheran an on-site patient navigator was introduced to improve breast and cervical cancer screening among women who were homeless. The study received Institutional Review Board approval from the NYU Lutheran and was conducted in five shelters (each with 100–300 occupants) and shelter clinics in NYC, from January 2014 to October 2014. Shelters had daily or weekly clinics providing care to persons who were homeless as well as surrounding low-income communities. Participants were women residing in the shelters or using shelter clinics for care. For breast cancer screening, we only approached and included women aged 50–74. For cervical cancer screening, we only approached and included women aged 21–65. Participants with average risk for breast cancer, who had their last mammogram more than 2 years before the encounter, were considered eligible for breast cancer screening.^28,29 Participants with average risk for cervical cancer, who had their last Pap testing more than 3 years before the encounter, were considered eligible for cervical cancer screening.^28,29 At least 4 days a week in the shelters and shelter-based clinics, the navigator offered services to all women who were eligible irrespective of their housing status. More than 85% of women who are homeless live in the shelters, and navigation was not offered to women who primarily resided on streets.

Navigation was offered as opt-out meaning that it was offered before any medical visit and irrespective of any medical provider contact in the clinic or in the shelters.

Navigation

Included a combination of health education and navigation to address: (1) misconceptions about breast and cervical cancers and screening (targeted education on importance of screenings and strategies to overcome barriers); (2) difficulty navigating health systems, including making and keeping appointments for screening, follow-ups, and obtaining test results (via scheduling original and follow-up appointments, reminders, and obtaining and communicating results); (3) problems to follow instruction for mammogram or Pap testing; (4) difficulty securing an escort to procedure and assistance with transportation and escorting patients if needed; and (5) addressing incomplete screening process with helping follow-up on results and schedule subsequent procedures/tests when abnormal (Table 1).

Table 1.

Cancer Screening Navigation for Women Who Were Homeless, New York City, 2014

Item	Description	Refs.
Breast- and cervical cancer-tailored health education and navigation counseling via face-to-face, phone, printed materialsFormat: lay language, English/Spanish, face-to-face, and written materials	Breast and cervical cancer, their risks and consequences, screening methods and their risks and benefits, barriers among persons who are homeless and methods to address them, potential results of screening and the subsequent care, navigator role and offerings, obtaining results, communicating with providers, and what happens next	^{21 –23,25 –27, 30 –34}
Scheduling and reminding of appointments and follow-ups	Making mammogram and Pap testing appointments on-time or later, regularly communicating and coordinating for screening with participants and shelter case workers, following up regarding appointments and when no show-up/missed appointment, making reminder calls for procedures, following up with participant during navigation period	^{21,25 –27, 34 –36}
Preparation for screening tests	Instruction for preparation for Pap testing, addressing questions with screening day necessities	³⁵
Transportation assistance and accompanying patients	Accompanying person to and from procedures/screening test if needed, Helping with screening site address and how to get to the site	³⁵
Obtaining/documenting results of screening	Following up with person after screening, helping obtain the screening results, notifying person and providers	^{25,26,33, 36}
Scheduling and facilitating appointment after screening with providers	Facilitating follow-ups for continuing medical care to discuss the results of mammogram and Pap testing and necessary follow ups	^{21,25 –27,33}
Coordination	Coordinating with participant's case worker/social worker/substance abuse counselor if participant is in drug rehab program or when needed	³⁷

The navigator approached participants in waiting rooms of shelter clinic or gathering rooms of the shelters, elicited age eligibility and interest, and described and obtained consent. The navigator used a private room for culturally tailored health education regarding cancer and cancer screening (adapted from the American Cancer Society and National Institute of Cancer patient education materials), explained screening options, addressed specific barriers, scheduled screening appointments at facilities considering participants' preferences or geographic proximity, followed up regularly with patients to assure screening appointment attendance and completion, and obtained and communicated results with the patients and providers. The navigator contacted participants 2 days prior and after screening and followed up for obtaining results postscreening. The navigator provided printed materials regarding cancer screening and screening locations and offered group classes addressing women's health issues. First navigation visit, face-to-face, took 20 minutes on average. Navigation was continued afterward via phone calls or during follow-up schedules, which varied in time and location. Navigation continued for up to 6-month postenrollment, and at least 3 months after concluding screening tests to obtain results and schedule follow-up care. Navigation ended if the participant refused participation any time after the start of navigation process, navigator was unable to locate/contact participant after 3 months, or no screening test was performed after 6 months of navigation.

Free MetroCards were provided for traveling to screening sites. The screening costs were covered through New York State cancer screening initiatives, community health centers grants, or Medicaid with no out-of-pocket payment. The navigator was a bilingual (Spanish and English speaking) minority female, had previously worked with the underserved communities and had knowledge of community resources, completed AmeriCorps training for working with the community,³⁸ and received real-time support from medical providers. Navigator was employed by and received salary from the NYU Lutheran Family Health Centers that had a contract with the shelters for providing care. Regular meetings at shelter clinics and with shelter staff were held to facilitate navigation process and troubleshoot and address existing barriers, improve synergy and collaboration, and support for the navigator.

Statistical analyses

The primary outcomes were the rates of breast and cervical cancer screening completion, meaning that screenings were performed and the results were obtained and communicated with the patients and providers. Self-reported data were collected on sociodemographics and potential predictors, including age, ethnicity/race, health insurance, duration of homelessness, alcohol, smoking, substance abuse, history of mental illness, history of sexually transmitted infections, number of pregnancies, and number of children. Descriptive statistics and bivariate analyses using two-sided chi square, student t-test, and multivariable logistic regression with adjusted odds ratios with 95% confidence interval (CI) were performed in 2015. In logistic regression, variables were included in the models when bivariate analysis showed significance (defined as p ≤ 0.1) or when clinically plausible. SPSS Version 21.0 (IBM, Armonk, NY) was used.

Results

Between January 2014 and October 2014, 162 women received cancer screening navigation. Sociodemographic data are presented in Table 2. Approximately, 20% of eligible persons who were approached for navigation in the shelter clinics or shelters refused participation.

Table 2.

SocioDemographics of Homeless Women Enrolled in the Study, New York City Shelters and Shelter Clinics, 2014

Variable	N (%)
Age (n = 162), years
Mean ± SD	45.25 ± 12.9
Range	21–72
Years of homelessness (n = 156)
Mean ± SD	1.51 ± 1.69
Range	0.2–10
Number of pregnancies (n = 133)
Mean ± SD	3.04 ± 2.88
Range	0–13
Number of children n = 133
Mean ± SD	1.70 ± 1.80
Range	0–8
History of STI	117/162 (72.2)
Ethnicity/Race
Black	95 (58)
Hispanic	32 (19)
White	30 (18)
All other	8 (5)
History of substance abuse	92 (56)
History of mental illness	122 (75)

STI, sexually transmitted infection.

Overall, 46/52 (88%) and 119/143 (83%) of the women who were homeless completed breast and cervical cancer screening, respectively. Attrition rates, meaning refused or missed appointments during navigation period, were 4/52 (7%) and 14/143 (10%), respectively. Four percent and 7% of participants were scheduled and still awaiting their mammogram or Pap testing at the time of analysis, respectively. Six participants (6/143) had abnormal Pap tests; two had known Human Papillomavirus infection, one received loop electrosurgical excision procedure, and two received colposcopy. Four participants had abnormal mammogram and received follow-up care. All women received MetroCards for transportation.

Unadjusted statistical analyses showed no significant relationship between ethnicity/race, history of substance abuse, smoking, mental health, years of homelessness or number of pregnancies, and completion rates of mammogram or Pap testing. However, older women were more likely to refuse Pap testing (p < 0.01). In logistic regression analysis, when age, ethnicity/race, history of substance abuse, mental health, years of homelessness, and number of pregnancies were in the model, adjusted analysis showed significant association between older age and missing Pap test (p < 0.001; odds ratio [OR] 1.12, 95% CI 1.04–1.20) and between completing mammogram and increased number of pregnancies (p < 0.001; OR 0.57, 95% CI 0.37–0.88) and older age (p < 0.001; OR 0.84, 95% CI 0.79–0.90). Pap tests were performed in two shelter clinics and mammograms at two collaborating hospitals and a radiology office. Main reasons for refusal for Pap testing and mammogram included discomfort with the test and its environment, not believing in screening, and preferring self-breast exam. Lack of time or concerns over expenses were not reasons for refusal or missing appointments.

Discussion

The rates of completed mammography and Pap testing among women who are homeless, including baseline rates among homeless women in the same facilities and shelters where the current study was performed are low; 47% to 59% and 55%, respectively,^8,10,11,13 compared with the national rates of 74% and 75%.¹² There was no association between history of substance abuse and mental health and screening completion rates indicating that these potential barriers were mitigated, at least to some degree, using navigation process. Older women were less likely to complete either screening, which may need a more targeted education and navigation process. Our study provides preliminary evidence of the feasibility and efficacy of an opt-out cancer health navigation in the shelters and shelter clinics tailored toward specific needs, barriers, and circumstances of the persons who experience homelessness. Our participants, such as majority of persons who are homeless, lived in the shelters, which improved their accessibility for follow-ups and scheduling.

Having a female minority navigator with prior experience working with the underserved community may have helped to create better rapport with homeless women who often suffer abuse and face stigma. Regular communication and monthly staff meetings with all medical, nonmedical, and support personnel at shelter clinics or in shelters to introduce navigation model and address recurrent or upcoming issues, enhance collaboration, and provide support for staff and the navigator were useful strategies. Our study, however, is not without limitations. We did not directly compare navigated participants with the ones without navigation. However, previous baseline data from the same facilities help us better interpret our findings.^8,9,13 We included multiple sites and shelters from both Manhattan and Brooklyn, which may help with generalizability of our findings, however, our results may not apply to persons who are homeless in other United States urban areas.

The homeless face provider- and system-level barriers related to their social condition,^7

–11 including barriers in preparing for screening procedures, keeping appointments, navigating the complex healthcare system, inadequate screening recommendations by the providers, and stigma and misconceptions regarding their healthcare priorities.^7,9,19,20 Adaption and translation of evidence-based approaches, including navigation models for cancer screening among the underserved and minorities,^{14
–16,25,30
–32,34,36,39,40} are necessary to reduce the enormous disparities in cancer-related outcomes and mortality among women who are homeless or with unstable housing, addressing the strategic objective of the National Center to Reduce Cancer Health Disparities and the requirement of Affordable Care Act to improve preventive services for adults in Medicaid. Our pilot study has a potential for dissemination, as there are many shelters and shelter clinics in virtually every large city across the United States and the world.

Footnotes

Acknowledgments

Authors thank the leadership at the NYU Lutheran Community Medicine Program, including Drs. Sckell, Pagano, and Rabiner, and Barbara Connan and Aaron Felder for their continuous support and invaluable contributions to this project. Authors specially thank Ms. Orquidea Alcantara and medical providers and staff at collaborating shelter clinics and shelters.

Author Disclosure Statement

No competing financial interests exist.

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