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Disparities in Cervical Cancer Mortality
Among Black, non-Hispanic Women in Massachusetts
A MacMillan1, S Gershman1, A Christie1, G Merriam1, J Nyambose1, E Hawk1, J Nolan2
Massachusetts Department of Public Health1 and JSI Research and Training Institute2
BACKGROUND
In Massachusetts, despite high rates of screening, Black non-Hispanic women are
more likely to be diagnosed at a late stage for cervical cancer, and have the highest
cervical cancer mortality rates compared with women of other racial or ethnic
groups (2.5 per 100,000 for Black non-Hispanic women vs. 1.4 per 100,000 for White
non-Hispanic women). The Massachusetts Department of Public Health has
established the goal of reducing the proportion of Black, non-Hispanic women
diagnosed with late stage (regional and distant) cervical cancer to 2 per 100,000 by
2016.
The methodology behind this project is depicted in the following visual:
The Massachusetts Cancer Registry, the Behavioral Risk Factor Surveillance
System, the Office of Clinical Prevention Services and the Comprehensive Cancer
Control program collaborated to prepare presentations on incidence, mortality, and
screening to illustrate cervical cancer disparities in Massachusetts.
Average Annual Age-Adjusted
1
Cervical Cancer Incidence and Mortality
2
incidence
Rates for Females by Race/Ethnicity
Massachusetts, 2003-2007
Hispanic
10.0
*
2.5
6.4
*
5.6
White, non-Hispanic
1.4
0.0
1
Facilitation guides were tailored to the four types of focus groups (Black NH cervical
cancer survivors, Black NH women without cervical cancer, community leaders, and
providers). Topics included:
Understanding the purpose of a Pap test, how it is performed, and how often they
should be screened for cervical cancer.
Facilitators and barriers, such as insurance status, to getting a Pap test.
Screening, treatment, and follow-up experiences and the patient-provider relationship.
Cultural perspectives on the Pap test and cervical cancer diagnosis
Recommendations to increase cervical cancer screening rates and follow-up among
Black, non-Hispanic women.
9.6
Black, non-Hispanic
Asian, non-Hispanic
Key research questions identified based on Behavioral Risk Factor Surveillance System
and Massachusetts Cancer Registry data.
mortality
2.0
4.0
6.0
8.0
Age-Adjusted Rates per 100,000
age-adjusted to 2000 U.S. Standard Population
2
10.0
12.0
per 100,000
*
the age-adjusted mortality rate was not calculated since there were fewer than 20 deaths
Source: Massachusetts Cancer Registry and MassCHIP v300 r324
Prevalence of Cervical Cancer Screening
(Pap Smear Within Past 3 Years),
Among Massachusetts Women, 2010
100
80
60
40
20
0
Percent
Percent
Massachusetts Invasive Cervical Cancer
Incidence by Stage at Diagnosis, 2003-2007
Localized
Regional
Distant
Unknow n
Stage at Dx
n=486
Black non-Hispanic
n=139
n=802
n=7,591
White NH
White non-Hispanic
Source: Massachusetts Cancer Registry
92
90
88
86
84
82
80
Black NH
Asian NH
Hispanic
Recruitment took several forms: flyers at health centers, Craigslist, ads in local papers
(for women with and w/o cervical cancer), community networks (for community
leaders), and contacts at health and participating cancer center (for providers).
Six focus groups were conducted: one with survivors (6 women), one with Black women
from the general population (11 women) ; one with community leaders (5 participants);
three provider roundtables (total 42 providers).
Final Report included summaries of consumer, community leader, provider perspectives.
Race/Ethnicity
Source: Behavioral Risk Factor Surveillance Survey
PURPOSE
To learn why the cervical cancer mortality rate for Black, non-Hispanic
women is twice that of White non-Hispanic women, and why Black nonHispanic women are diagnosed at later stages.
Providers “should not
undertreat cancer under
new guidelines. These are
guidelines, not laws.”
“Even though in Massachusetts everybody has health insurance,
not all policies cover services equally and sometimes you can get
sub-standard treatment.“
Focus Group Participant
Provider
METHODS
MDPH contracted with JSI Research and Training Institute to
conduct a series of focus groups with consumers, providers
and community leaders to explore and identify factors
contributing to a late stage at cervical cancer diagnosis.
“I had an abnormal Pap smear and they wanted to
freeze my cervix, so I left that provider. They told me
that they would watch me but I didn’t trust him; he
waited until my warts turned to cancer.” Survivor
We acknowledge the Centers for Disease Control and Prevention for its support of the staff under cooperative agreement 1U58DP003920-01awarded to the
Massachusetts Cancer Registry at the Massachusetts Department of Public Health. The contents of this work are solely the responsibility of the authors and do not
necessarily represent the official views of the Centers for Disease Control and Prevention. Additionally, thanks are given to Janie Hynson, BSPH and Xue Dai as authors
of the JSI report, and JSI team members Tajan Braithwaite, MPH, Tom Mangione, PhD, Wendy Chow, MPH, and Rachel Morse, MSHS.
“I am human; I even had a
doctor who didn’t want to
touch me. They don’t know
how to treat a patient.” Survivor
“I cannot emphasize how
important the relationship with
care providers is, especially
given the fact that you have to
get naked. . .it’s very hard to
maintain dignity in that
situation.”
Community Leader
Copies of the full JSI report are available upon request from [email protected]
RESULTS
Key findings:
Follow-up medical care after an abnormal Pap test result is a significant challenge.
Inadequate or no insurance coverage is a barrier to screening and follow-up
Constant changing of both treatment and screening guidelines causes confusion
among patients and providers.
Challenges in the patient-provider relationship impact screening, treatment, follow-up,
and quality of care.
Further investigation of data sources is needed in order to track and analyze patient
histories.
Education for both providers and patients is key to
improve screening practices.
Misinformation causes confusion regarding Human
Papilloma Virus (HPV) vaccination.
Culture influences health-seeking and health
decision-making.
Other significant barriers affect access and navigation
of the health care system.
Further research is needed to determine the role of
biological factors in the high cervical mortality rates
among Black non-Hispanic women.
Participant recommendations:
Develop a cervical cancer screening education and
awareness campaign
Simplify and educate patients about the insurance process and enrollment; Reassess
coverage of state-provided insurance plans
Clarify and educate patients and providers about screening guidelines
Continue to research biological factors related to increased cervical cancer mortality
rates among Black non-Hispanic women
Improve physical access to cervical cancer screening
Increase use of patient-level navigators
Further examine patient-level cancer data
Implement changes in provider practices and procedures; improve quality of providerpatient relationships
Limitations:
Small numbers due to low cervical cancer incidence and mortality overall
Small focus group sample size of women with cervical cancer and lack of recruitment
of women with late stage cervical cancer.
Limited geographic area represented (Boston)
Lack of representation of Haitian women
Lack of representation of two large health centers in Boston
Short time frame limited a more thorough and comprehensive assessment
Challenges accessing patient-level data for purposes of recruitment.
NEXT STEPS
Media Campaign focusing on breast and cervical cancer that will
emphasize the benefits and importance of early detection and of followup of abnormal results with a doctor. Media will include newspapers,
buses/billboards, posters at YMCA, nail salons, gas pumps, and social
media.
Campaign for Providers that will offer online Continuing Medical
Education credits through the Massachusetts Medical Society.