Public Health, Epidemiology, and Cervical Cancer Research in At-Risk Communities

Rates of cancer are directly impacted by strong public health policies that educate patients and provide access to free screenings or tests. In the United States, the Pap test helped reduce rates of cervical cancer by at least 70% since the 1950s [1]. Cervical cancer was once the leading cause of cancer-related death in American women. It now has a five-year survival rate of more than 65%1, a landmark achievement in public health.

The recognition of cancer as a public health issue, particularly in underserved, low-income communities, was an important moment in US medical history. This was driven by epidemiological research analyzing disease frequency in relation to various demographic and socioeconomic factors including race, ethnicity, income, geographic location, age, sex and more.

These studies had been used for decades to track infectious disease, but their application to noninfectious disease, like cancer, was relatively new in the 1960s. When applied to cervical cancer, the studies almost uniformly found that the highest rates of cervical cancer were concentrated in poor and/or minority communities with low rates of Pap testing [2-6]. These early studies called for public health efforts aimed at educating patients and physicians on the benefits of Pap testing to diagnose cervical cancer at earlier, nonterminal stages.

In the 1960s many American physicians were still skeptical of the Pap test and did not always recommend it for their patients. For instance, a 1960-62 survey of 2,000 women in San Diego found that 93% had never been told to have a Pap test by a doctor [5]. This was remarkable, as the Pap test had been used in the United States for some time and was considered a standard screening tool.

By the 1970s, Pap testing was more frequent for all women in the US, leading to reduced cervical cancer rates and deaths [7]2. But epidemiological studies surrounding these factors were lacking, as most large-scale studies were focused on separating groups by age and stage of cancer diagnosis [7] but not other factors.

Dr. Stern’s research on cervical cancer in the 1970s involved innovative epidemiological studies in vulnerable communities3. Her focus on effective, community-based clinical outreach and empathy for patients, unique at the time,4 provided strategies for setting up successful cervical cancer screening clinics.

Identifying Communities with High Rates of Cervical Cancer

Epidemiological studies in the 1960s generated new public health policies, and as a result, cervical cancer rates nationwide were decreasing. But were rates decreasing among the most vulnerable communities? Few studies focused solely on low-income and/or underrepresented minority populations [5, 8]. In fact, the US National Cancer Institute did not begin collecting socioeconomic information on cervical cancer patients until the mid-1970s [9]1.

In 1974 and 1975 Dr. Stern designed a series of survey studies with colleagues in the UCLA School of Public Health. [10, 11]. The stated goal of this research was to determine how Pap testing frequency was related to cervical cancer rates and socioeconomic factors, particularly race, ethnicity, and income. This information could be used to determine the effectiveness of Pap testing as a screening tool and how often it was used by different communities5.

Prior to conducting these surveys, Dr. Stern and her colleagues integrated existing data from different sources to generate a comprehensive view of how cervical cancer differentially affected Los Angeles neighborhoods. This included publicly available records on cervical cancer frequency and associated deaths and US Census data about income, race, and ethnic distribution. Their research found that the rates of cervical cancer diagnosis and mortality were twice as high as among lower-income, inner city Los Angeles neighborhoods compared to middle income areas.

The subsequent surveys focused on three representative communities:

• A low-cancer rate, middle-income neighborhood with equal representation among white, Latina, and Black women; 321 women were interviewed.

• A high-cancer rate, low-income neighborhood; 33% of respondents were Latina and 64% were white; 179 women were interviewed.

• A high-cancer rate, low-income, inner-city neighborhood; 98% of respondents were Black; 200 women were interviewed.

The surveys found that, along with elevated cervical cancer rates, women from lower income areas reported having fewer Pap tests. Only one-third of low-income women had been tested twice in the past five years compared to about 90% of middle-income women6. These differences seemed to be more dependent on income as opposed to race and/or ethnicity, as all women from the middle-income groups had increased rates of Pap testing. However, within poorer communities, Latinas had the lowest rates of Pap testing with 24% never having had a Pap test as contrasted with 5% to 12% of Black and white women. Overall, these surveys reflected serious disparities in women’s healthcare that needed to be addressed.

Developing Guidelines for Engaging At-Risk Communities in No-Cost Cancer Screening Clinics

The ultimate goal of the surveys was to identify key areas for establishing a community-based cervical cancer screening clinic [12] with the aims of:

• Determining if women were interested in free cancer screening.

• Identifying strategies that would help engage women to make and keep appointments.

• Demonstrating how clinics can function as part of the community.

• Establishing methods for training healthcare workers to effectively communicate with patients.

As part of this study, Dr. Stern and her colleagues asked Los Angeles County public health professionals for advice in approaching potential patients and advertising no-cost clinic services. Based on this feedback, Dr. Stern’s group offered additional services such as breast exams along with Pap testing. These healthcare professionals were women from the local communities who were able to understand patient concerns and explain medical procedures and results in a relatable manner. Many could also speak Spanish, which was essential, since one of the clinic sites was in a Spanish-speaking neighborhood.

Recruiters went door-to-door, visiting more than 1,200 households in the two low-income areas from the survey studies described above. Of the 500 women that were eligible, one third made and kept appointments, a high success rate for a two-week pilot study. To help women keep appointments, Dr. Stern’s group provided a wide variety of free services including taxi rides and on-site babysitting as well as evening appointments. The taxi service was used by a third of participants, highlighting the crucial role of transportation in healthcare access7.

They also hired a woman nurse practitioner to perform the Pap tests and pelvic exams, which was unheard of at the time. The patients appreciated this effort and in post-visit questionnaires, 77% of the women said they would prefer a female nurse or doctor to perform a similar exam in the future.

Fifty percent of the women they screened had not had a Pap test in the previous two years, and 30% of the Latina women had never had a Pap test. The fact that Dr. Stern and her group made these efforts in the 1970s speaks to their progressive mindset and dedication to helping patients.

Long-Term Impact and Conclusions

Dr. Stern’s forward-looking focus on communication and empathy was evident in an article which quotes a healthcare worker from the clinic [12]:

“A worker must know what she is talking about. She should be friendly and easy going and should not be like an officer taking down information. The women live in an area where crime is high and you have to let them know you are in their neighborhood for a purpose. You have to know when women don’t want to talk…When you can laugh with a woman and she sees that you like her and her children, then she’ll begin to trust you. Once you start to communicate, she’ll accept an appointment.”

This quotation in one of Dr. Stern’s last published papers reflects the importance of working within a community to advance public healthcare policy.


Footnotes:

1These numbers are derived from the NIH National Cancer Institute’s SEER database (Surveillance, Epidemiology, and End Results Program). This site provides long-term and short-term trends for specific types of cancer including statistics relating to frequency, survival and mortality. These data can be filtered by patient sex, age, race, ethnicity or stage of cancer at diagnosis. SEER began collecting cervical cancer mortality data in 1975 but the major drop in deaths from Pap testing in the 1960s and early 1970s isn’t fully captured by this data.

The average 5-year survival rate for cervical cancer across all stages of cervical cancer diagnosis and all patients is at 66.3%. However, for the earliest stage of cervical cancer (termed “localized” on the SEER website), the 5-year survival rate is greater than 90%. These statistics are frequently updated and the numbers reported here reflect 2011-2017 trends.

2In addition to questions relating to differences in cervical cancer rates and mortality across different income, racial, and ethnic groups, there was a broader issue in the field. Many physicians didn’t believe the Pap test was the reason cervical cancer death rates were plummeting [7]. There were no coordinated clinical trial efforts. Such double-blind studies would have been challenging, making it difficult to determine the precise impact of the Pap Test [1]. Skeptics of cytopathology were dubious of these claims [13], as well as the link between dysplasia and cervical cancer. However, today the Pap test is widely regarded as a vital tool in reducing cervical cancer incidence and deaths.

3Dr. Stern’s former graduate students, Dr. Marilyn Winkleby (Professor of Medicine, Stanford Prevention Center) and Dr. Anna Wu (Professor of Preventive Medicine, Keck School of Medicine at USC) were consulted to place her research in context.

4Other articles published at this time often focused on the attitudes of women who did not show up for screenings, often casting them in a negative light. For example, a 1970 report on cervical cancer screenings in Louisville, Kentucky [6] stated: “It is quite obvious that this older group of women present a problem. They seem recalcitrant to screening, usually have advanced disease, and, consequently, contribute appreciably to the difficulty in obtaining a dramatic drop in death rate.”

5See Footnote #2. Dr. Stern was also interested in using this data to help improve the efficacy of the Pap test in reducing mortality from cervical cancer, adding to the growing evidence that the Pap test was a successful public health tool.

6Due to the issues with Pap testing standardization at the time, including technical problems and physician errors, annual testing was crucial for continuous monitoring.

7This is still true today. See this review [14].


References:

1. Safaeian, M., D. Solomon, and P.E. Castle, Cervical cancer prevention--cervical screening: science in evolution. Obstet Gynecol Clin North Am, 2007. 34(4): p. 739-60, ix.
2. Kegeles, S.S., et al., Survey of beliefs about cancer detection and taking Papanicolaou tests. Public Health Rep, 1965. 80(9): p. 815-23.
3. Lundin, F.E., Jr., et al., Morbidity from cervical cancer: effects of cervical cytology and socioeconomic status. J Natl Cancer Inst, 1965. 35(6): p. 1015-25.
4. Breslow, L. and J.R. Hochstim, Sociocultural Aspects of Cervical Cytology in Alameda County, Calif. Public Health Rep, 1964. 79: p. 107-12.
5. Martin, P.L., Detection of Cervical Cancer; a Study of Motivation for Cytological Screening. Calif Med, 1964. 101: p. 427-9.
6. Christopherson, W.M., et al., Cervix cancer control in Louisville, Kentucky. Cancer, 1970. 26(1): p. 29-38.
7. Cramer, D.W., The role of cervical cytology in the declining morbidity and mortality of cervical cancer. Cancer, 1974. 34(6): p. 2018-27.
8. Burns, E.L., et al., Detection of uterine cancer. Results of a community program of 17 years. Cancer, 1968. 22(6): p. 1108-19.
9. Singh, G.K., et al., Persistent area socioeconomic disparities in U.S. incidence of cervical cancer, mortality, stage, and survival, 1975-2000. Cancer, 2004. 101(5): p. 1051-7.
10. Stern, E., et al., Papanicolaou testing and hysterectomy prevalence in low-income communities: a survey in Los Angeles County. Natl Cancer Inst Monogr, 1977. 47: p. 113-9.
11. Stern, E., et al., "Pap" testing and hysterectomy prevalence: a survey of communities with high and low cervical cancer rates. Am J Epidemiol, 1977. 106(4): p. 296-305.
12. Misczynski, M. and E. Stern, Detection of cervical and breast cancer: a community-based pilot study. Med Care, 1979. 17(3): p. 304-13.
13. Guzick, D.S., Efficacy of screening for cervical cancer: a review. Am J Public Health, 1978. 68(2): p. 125-34.
14. Scarinci, I.C., et al., Cervical cancer prevention: new tools and old barriers. Cancer, 2010. 116(11): p. 2531-42.