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Disclaimer:
The information in this Community Profile Report is based on the work of theNew OrleansAffiliate of Susan G. Komen for the Cure® in conjunction with key community partners. The findings of the report are based on a needs assessment public health model but are not necessarily scientific and are provided "as is" for general information only and without warranties of any kind. Susan G. Komen for the Cure and its Affiliates do not recommend, endorse or make any warranties or representations of any kind with regard to the accuracy, completeness, timeliness, quality, efficacy or non-infringement of any of the programs, projects, materials, products or other information included or the companies or organizations referred to in the report.
Acknowledgements (1 page)
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Instructions:
The New Orleans, Louisiana Affiliate of Susan G. Komen for the Cure® sincerely appreciates the time and effort that Community organizations and key individuals have given to provide the information included in the 2011 Community Profile.
Donna Williams
Louisiana Breast & Cervical Health Program
LouisianaStateUniversitySchool of Public Health
Mari Nakayoshi
Louisiana Breast & Cervical Health Program
Patricia Andrews
Louisiana Tumor Registry
Tracy Conlin Dreiling
Author
Community Profile Team Leader
Volunteer
Lisa Plunkett
Community Profile Team Member
Executive Director
Susan G. Komen for the Cure® New Orleans Affiliate
Lori Barthelemy
Community Profile Team Member
Board Secretary
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Table of Contents
Executive Summary...... 5
About Susan G. Komen………………………………………………………………………5
Introduction……………………………………………………………………………………5
Statistics and Demographic Review………………………………………………………..6
Health Systems Analysis…………………………………………………………………….8
Community Perspectives……………………………………………………………………8
Priority Setting Process……………………………………………………………………12
2011 – 2013 Affiliate Action Plan…………………………………………………………12
Introduction...... 14
About Susan G. Komen…………………………………………………………………….14
Affiliate History……………………………………………………………………………….14
Organizational Structure…………………………………………………………………....14
Description of the Service Area……………………………………………………………15
Purpose of the Report………………………………………………………………………18
Breast Cancer Impact in the Affiliate Service Area………………………………………..20
Data Sources and Methodology Overview………………………………………………20
Overview Of Affiliate Service Area………………………………………………………..20
Selection of Priority Parishes……………………………………………………………...23
Conclusions…………………………………………………………………………………24
Health Systems Analysis of Target Communities…………………………………………25
Overview of Continuum of Care…………………………………………………………..25
Data Sources and Methodology…………………………………………………...... 26
Themes from Health Systems Provider Surveys………………………………………..26
Assets and Partnerships…………………………………………………………………...27
Louisiana Breast and Cervical Health Program (LBCHP)……………………………..28
Conclusions…………………………………………………………………………………29
Breast Cancer Perspectives in the Target Communities…………………………………30
Methodology………………………………………………………………………………..30
Conclusions…………………………………………………………………………………32
Conclusions and Action Plan…………………………………………………………………33
Target Community Finding………………………………………………………………...33
Health System Conclusions……………………………………………………………….33
Community Perspectives Conclusions…………………………………………………...34
Priority Setting Process……………………………………………………………………34
2011 – 2013 Affiliate Priorities and Objectives………………………………………….35
References……………………………………………………………………………………..37
2011 Komen New Orleans Affiliate Community Profile
Executive Summary
About Susan G. Komen for the Cure®
Nancy G. Brinker promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever. In 1982 that promise became Susan G. Komen for the Cure® and launched the global breast cancer movement. Today, Komen for the Cure is the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find a cure. Komen has more than 120 Affiliates around the globe working to meet unmet breast health needs. Thanks to events like the Komen Race for the Cure®, we have invested more than $1.9 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world. For more information about Komen for the Cure®, breast health or breast cancer visit or call 1-877-Go-Komen.
Introduction
The Susan G. Komen for the Cure® New Orleans Affiliate was founded in 1992 by Patricia C. Denechaud and the late Dr. Merv Trail. The New Orleans Affiliate shares the common mission of other Affiliates to eradicate breast cancer as a life threatening disease by advancing research, education, screening and treatment.
New Orleans is the Southeastern tip of the state of Louisiana. It is the largest city in Louisiana and is the center of the largest metropolitan area in Louisiana, the Greater New Orleans Metropolitan Area. The New Orleans Affiliate serves the Greater New Orleans Metropolitan Area. The statistical area includes seven parishes: Orleans, Jefferson, St. Bernard, St. John the Baptist, St. Charles, Plaquemines and St. Tammany. Washington Parish is added into the combined statistical area.
The first Susan G. Komen for the Cure New Orleans Race for the Cure® was held in New Orleans in 1995. The Race quickly became the major fundraising event for the Affiliate with participation and community support growing each year. In 2010, The New Orleans Race for the Cure® set a new record of 10,500 participants. The Race Committee has set a goal of 15,000 participants for the upcoming 2011 Race. The Affiliate’s grant program was initiated in 1995 and to date has awarded $2,904,667. In 2011 a total of $514, 177.00 has been given in Community Health Grants. The New Orleans Affiliate is led by a volunteer Board of Directors (BOD) and an Executive Director (ED). The Affiliate’s ability to hire an ED and obtain office space in 2000 has significantly stabilized the Affiliate leadership and visibility in the community. Visibility within the community has paved the way for successful fundraising events such as the Summer Cure Chef’s Wine Dinner and the Salute to Survivors Annual Luncheon.
The overall purpose of the Susan G. Komen for the Cure® Community Profile is to assure that the mission and non-mission work of the Affiliate is targeted and non-duplicative. A quality Community Profile helps the Affiliate to understand the state of breast cancer in its service area. The Community Profile assists the Affiliate to establish focused granting priorities, establish focused education activities, drive public policy efforts, strengthen/increase partnerships and sponsorships and establish direction for marketing and outreach activities.
Statistics and Demographic Results
A variety of data sources was used to prepare the 2011 New Orleans Affiliate Community Profile (CP). Parish level demographic estimates were obtained from Thompson Reuters. Incidence and mortality rate estimates for zip codes were also obtained from Thompson Reuters as well as from the Louisiana Breast and Cervical Health Program. Parish level 2009 population estimates were available from the U.S. Census Bureau. Other demographic data were obtained from the Census Bureau’s American Community Survey 2007 and the 5 year estimates (2005-2009). The U.S. Census Bureau created these estimates to be compared to 2000 data for a view of demographic changes in the New Orleans Region that was greatly impacted by Hurricane Katrina in 2005. Data on parish level incidence and mortality rates (2003-2007) were collected from the National Cancer Institute’s State Cancer Profiles website (
The Susan G. Komen New Orleans Affiliate serves eight parishes. These parishes make up the statistical area of the Greater New Orleans Metropolitan Area. The total population of the Greater New Orleans Metropolitan statistical area is 1,190,632. Jefferson Parish and Orleans Parish account for two-thirds of the total population. Females account for little over one half of the total population at 51.9%. Sixty percent of the population is white, thirty-four percent are African American and six percent is Hispanic/Latino. In Orleans Parish, the second most populated parish, African Americans account for sixty percent of the population, thirty percent are white and five percent are Hispanic/Latino. The median household income in the Greater New Orleans Metropolitan Area is $46, 496 with 16.2 % of the population living below the poverty level. (U.S. Census Bureau- American Community Survey 5 year estimates 2005-2009)
The aftermath of Hurricane Katrina in 2005 created more health disparities in the New Orleans greater Metropolitan area health care system. Charity Hospital, the region’s principal health care service provider to uninsured residents in the area, was damaged beyond repair and failed to reopen. According to the Kaiser state health facts.org, 18% of Louisiana’s population is uninsured, which is above the national average. Approximately 25% of non elderly adults (ages 18-64) are uninsured. This is much higher than the national average of 17% for this age group ([1]Health Challenges for People of New Orleans).
The burden of having no insurance and the difficulties accessing needed care fall unequally across the community. Vulnerable populations in the region have an even higher rate of uninsured individuals. In the Greater New Orleans Area, about one – third of adults (35%) are economically disadvantaged, a composite measure used to identify those who may be facing economic hardships. Thirty percent are African American (a group in New Orleans that has a long history of disparities in health coverage and access), and nearly one in ten (9%) area residents previously relied on the now defunct Charity Hospital for health care. These former Charity users were more prevalent in Orleans Parish than throughout the entire region. A profile of the population who formerly relied on Charity Hospital shows that the majority of this group was economically disadvantaged. Charity Hospital played an important role in delivering health care to those with limited resources. Two-thirds of former Charity users were African American. Following the closure of Charity Hospital, this is a group that that can be expected to face particular challenges accessing health services post-Katrina (Health Challenges for the People of New Orleans).
Breast cancer is the most frequently diagnosed cancer among women both nationally and in the state of Louisiana. The average annual incidence rate for white women in the United States (2003-2007) is 126.5. Southeast Louisiana white women have a slightly lower average of 123.7. However, African American women in Southeast Louisiana have a slightly higher average annual incidence rate of 119.7 over the US average of 118.3. Even more alarming are the higher rates of mortality for both African American and white women in Southeast Louisiana (38.2 and 25.2) in comparison to the United States average mortality rates (32.4 and 23.4). (US rates from the Surveillance, Epidemiology and End Results Program of the National Cancer Institute)
Data collected for the 2011 Community Profile reveals that several of the eight parishes served by the Komen New Orleans Affiliate have higher average annual mortality rates for both African American and white women. Parishes that have higher rates for African American women are Jefferson Parish, Orleans Parish and St. John the Baptist. White women have higher than average annual mortality rates in Jefferson Parish, Orleans Parish, St. Bernard and Washington Parish.
When looking at Mortality rates, one must consider stage of diagnosis. Stage of diagnosis is important when looking at the breast health of a community. It is one of the most important factors contributing to mortality and in determining the prognosis and treatment options for breast cancer. Unfortunately, several parishes in the Affiliate service area have high averages of late stage diagnosis, in particular for the African American women. These parishes are St. Charles Parish (40.6%), St. John the Baptist (44.1%), St. Tammany Parish (42.9%) and Washington Parish (52.9%).
Of all the eight parishes served, Washington Parish has the highest percentage of uninsured women with 29.6% being uninsured, Orleans follows with 28.7% of women uninsured. St. John the Baptist has 18.6% uninsured, St. Charles has 13.8% and St. Tammany has 12.2% of uninsured females. Washington Parish and Orleans Parish also have the highest populations of individuals living below the poverty level. Orleans Parish has 23.7% living below the poverty level and Washington Parish has 19.4%. (US Census Bureau)
The Community Profile team considered all data which included Average Annual Mortality rates, late stage diagnosis, high rates of uninsured females and high poverty levels when prioritizing parishes. Considering all of the data, six of the eight parishes were chosen as top priorities for the 2011 Community Profile. They are Orleans Parish, Jefferson Parish, St. John the Baptist, St. Tammany Parish, St. Charles Parish and Washington Parish. The data also suggests that African American women are at a greater disadvantage in many of the parishes due to economic, education and health care access; therefore, African American women will also be a top priority for the New Orleans Affiliate. Additional specifics regarding these variables are found in greater detail in the CP section on Breast Cancer Impact in the Affiliate Service Area.
Health Systems Analysis
Several methods were used to gather health systems data for priority parishes. These included an updated inventory of programs and services, asset mapping and provider surveys. A Provider survey questionnaire was developed using the Continuum of Care model with questions specific to access, screening, diagnosis, treatment and aftercare. This gives an overview of how women in the communities are able to move through the health care system. These providers were selected because they are vital leaders within these populations considered economically and medically disadvantaged. They play key roles in assisting these patients in obtaining quality health care. Some are oncologists, radiologists and surgeons serving the breast health patient. Others are support staff in clinics and local hospitals who work directly with the breast health patient. Several work with the Louisiana State University School of Public Health and the Louisiana Cancer Registry.
The data gathered with the help of the provider surveys describes common gaps and barriers that patients face when seeking breast health information, screening and treatment. Some common themes emerged from the data gathered. The most common is that patients living outside of Orleans Parish have little or no access to free mammography screening. This inhibits the uninsured from getting proper screening. Providers also suggest that the Emergency Medicine system is overtaxed due to lack of system support for uninsured. Many of the patients seeking breast health care are using the Emergency Departments as their primary provider of health care.
Providers acknowledge that they lack the funding and staff support to properly reach and educate the underserved about breast health. This is particularly true for the African American and low income patients, thus limiting the continuum of care for these patients. Many uninsured women diagnosed with breast cancer are at a disadvantage for treatment options if they live outside of Orleans Parish. Extensive travel and limited support from family and friends for transportation is a huge barrier for these patients. These barriers inhibit these patients from proper care and navigation of the continuum of care.
Community Perspective
Analysis of the breast health care in the community involved looking at a map of the region. Locations of area hospitals and clinics were documented within each community. Only those clinics that offer breast health education, screening or treatment were listed. Both Komen funded and non-Komen funded clinics were mapped.
When assessing the breast health needs of the New Orleans Affiliate service area, it is important to look at the entire Continuum of Care that was mentioned in the above section: Health Systems Analysis. In order to correctly navigate the Continuum of Care (COC), a patient needs to have adequate access to proper screening. Along with proper screening, a patient must be educated about breast health. If there is an abnormality found during screening, the patient must get guidance for further testing. Once the additional testing is completed, a patient may be given a breast cancer diagnosis. This patient must be able to navigate the system to get the proper treatment options. A patient should be made aware of any clinical trials that she may be eligible to participate in without cost to the patient. During and after treatment it is imperative that the patient seek follow-up care to assure the best possible prognosis. See Figure 1. There are many reasons a patient may not stay in the COC. The committee must consider these reasons and help create solutions to keep patients in the Continuum of Care.
Figure 1: The Continuum of Care (COC)
To better understand the COC in the communities served by the Komen New Orleans Affiliate, the Community Profile team gathered more qualitative data by surveying women in several of the priority parishes. Not all of the women surveyed are considered the underserved. However, most are uninsured and economically disadvantaged. These patients were provided a survey. The questionnaires contained twelve questions about general breast health. A second section was added with seven questions to be answered by breast cancer survivors only. The questionnaires were given to the women by the clinic supervisors. Four clinics agreed to participate. Each of the clinics is located in priority parishes. Two are in Orleans parish, one in St. Charles Parish and one in Washington parish. The clinics were chosen because of the patient populations that they serve as well as the parish statistics on late stage diagnosis and high average annual mortality rates. A large portion of the participants in these clinics are African American.
A total of 48 surveys were given to patients. Twelve patients were given the questionnaires in each clinic. The response rate was lower than expected, with fewer than half completing the survey. Twenty forms were completed.
Some examples of the general breast health questions are as follows: