Evaluation of Community-Based Projects to Reduce Cancer Disparities among Underrepresented Groups and Participants Satisfaction in Health Disparities Projects

Cancer is the second leading cause of death in the United States. The objectives of this study were to evaluate cancer prevention programs and participants satisfaction in 51 disparities projects in Florida. This three-phase evaluation included evaluability assessment, process, immediate outcome and impact evaluation using qualitative assessment, case study, document analysis, face-to-face interviews, and survey. In 2006-2007, a total of 3,165, and in 2008-2009, a total of 1,632 individuals participated in the programs respectively. In breast and cervical cancer prevention programs, change of proportion of African-American and Haitian recruitment significantly increased from 2006-2008 to 2007-2009 (-11.3 to 3.4). Among other services, all means of outreach such as mobile vans, faith-based activities, health fairs, and small-group education sessions also increased by 5.3%, 7.9%, 5.5%, and 9.4% respectively. In participants' satisfaction the majority of respondents (N=231) were 35-54 years old (46.7%), non-Hispanic Black (81.7%), female (70.3%), high school and some college educated (58.8%), and with income less than $25,000 (65.5%). The majority of the participants were very satisfied with the program staff’s training, cultural sensitivity, language skills, resources, education materials, referral system, and changing behavior (mean score: 4.5-4.7) and with the overall project and the project’s role in improving their quality of life.


Introduction
Cancer is the second leading cause of death in the United States, surpassed only by cardiovascular diseases, being responsible for one in every four deaths. The Centers for Disease Control and Prevention (CDC) reported that 567,614 people had died from cancer, and more than 1.48 million people were diagnosed with cancer in 2009 alone 1 . Smith estimated that the total projected cancer incidence will increase by approximately 45%, affecting 2.3 million people in the US by the year 2030 2 . The physical, emotional, mental, and spiritual tolls of cancer diagnoses on the survivor, their friends and family are incalculable but financial costs of cancer is overwhelming. The National Institutes of Health (NIH) estimated that cancer has cost the United States approximately $263.8 billion in medical costs and lost productivity in 2010 3 .
The National Cancer Institute 3 (NCI) estimated that 1,660,290 people in the United States will be diagnosed with and 580,350 will die from cancer of all sites in 2013, narrowing the gap with the first place killer of cardiovascular disease. The Surveillance, Epidemiology and End Results (SEER) Cancer Statistics Review inform us that the national median age at diagnosis for cancer of all sites was 66 years of age from 2006-2010 4 . The age-adjusted incidence rate was 463.0 per 100,000 people per year. The median age at death for cancer of all sites was 72 years of age for the same time period. The age-adjusted death rate was 176.4 per 100,000 people per year.
The prevalence of cancer nationwide is also astonishing with approximately 13,027,914 people affected in 2010. That's over 4.2% of the entire US population diagnosed with cancer. The SEER Program also calculated the lifetime risk of having cancer to be 41.24% based on rates from 2007-2009 4 . This means that 1 in 2 men and women will be diagnosed with some form of cancer at some point during their lifetime. These national trends are also reflected in the  5,6 . African Americans are more likely to die of cancer than any other race or ethnicity with the age-adjusted death rate for cancer of all sites of 211 per 100,000 population 7,8,9 . Compare that with 175 for whites, 123 for American Indians/Alaska Native, 117 for Hispanics, and 109 for Asians/Pacific Islanders 9 . Since age is the primary risk factor of cancer, elderly people are also more likely to be diagnosed with and die from the disease. Extra measures should be taken in order to protect these at-risk populations.
Cancer was the second leading cause of death in Florida in 2005. In 2004-06, the average number of cancer cases diagnosed was 101,516; the incidence rate was 563 per 100,000 10 . According to the same report, 40,140 cancer deaths with an age-adjusted death rate of 162 per 100,000 occurred in 2006-08 in Florida. About 2,600 deaths due to breast cancer and 300 deaths due to cervical cancer occurred in Florida annually 11 . Cancer-related disparities exist among minorities; Black males had the highest age-adjusted mortality rate for all cancers combined among the four race groups (547.7 per 100,000) 12,13 . Prostate cancer mortality rates accounted for much of this difference. Black males had a mortality rate of 54 per 100,000 from prostate cancer, whereas white males had a rate of 19 per 100,000 14 . Cancer puts an enormous economic burden on Floridians, with approximately $3.8 billion in hospital charges for in-patient hospital care in 2005 for those with a primary diagnosis of cancer. When including patients with a secondary diagnosis of cancer, the total hospital charges are $19 billion. Hospital charges in 2005 for colorectal cancer were $557 million; for lung and bronchus $514 million; for breast, colorectal and cervical cancers combined $703 million 15 .
The elimination of disparities in the burden of cancer is one of the overarching themes of the both government and non-government national institutions (ACS challenge goals). A series of reports published by ACS in the late 1980s documented large disparities in cancer burden by race and ethnicity, socioeconomic factors such as poverty, inadequate education, and lack of health insurance appeared to be far more important than biological differences 16-20, . American College of Physicians' position paper indicated overwhelming evidence that racial and ethnic minorities are prone to poorer quality health care than white Americans, even when factors such as insurance status are controlled 21 . The cause of these disparities are multifactorial, however, social and economic factors as well as being in underserved communities play a critical role 22 . Considering these factors, earlier in 2000 the "Reducing Racial and Ethnic Health Disparities: Closing the Gap Act" was enacted in an effort to mobilize underserved communities in Florida to address and eliminate health outcome disparities and promote disease prevention activities 23 .

Materials and Methods
The cancer projects were evaluated along with all other projects in the area of cardiovascular diseases, diabetes, maternal and infant mortality, HIV/AIDS, adult and child immunization, and oral health care. Two funded projects were intended to focus on breast and cervical cancers, however, due to the demands from underserved communities some colorectal and prostate cancer screening were done. The evaluation was done in three phases. The first phase involved qualitative assessment and a case study approach to evaluate each project's goals, objectives, plans, resources, achievements, needs and other topics that are contextual to each project. Content analysis, telephone interviews and surveys are used in this step to establish process measures 24 . The second phase included an evaluability assessment for clarifying program designs, exploring program reality, and, if necessary, helping redesign programs to ensure that they meet the criteria such as a) well-defined program goals, objectives, and performance measures, b) plausible program goals and objectives, c) ability to obtain relevant performance data (or use alternative methods to collect data, d) agreement on the evaluation. The third phase included immediate outcome and impact evaluation and actual immediate outcome and impact measures.
The objectives of evaluability assessment were twofold: to delineate whether a program can be meaningfully evaluated and whether evaluation is likely to contribute to improve program performance 25 . Both qualitative and quantitative methods are used for an evaluability assessment. Documents analysis, interview, and face-to-face meetings with the program manager, data manager, and previous evaluator were the primary methods to establish evaluability of the program.

Process Measures
From 2006 to 2007, a total of 3,165 individuals participated in the cancer prevention programs. Of these, 6 were males and 3,159 were females. As well, 5 were American Indian, 92 were Asian Pacific Islander, 1,701 were Black, and 1,162 were White. Of these, 2,854 participants identified themselves as Latino, and 265 were listed as other ethnic background. From 2007 to 2008, a total of 3,208 individuals participated in the program. Of these, 13 were males and 3,195 were females. As well, 193 were Asian Pacific Islander, 1,363 were Black, and 1,371 were White. Of these, 2,810 identified themselves as Latino, and 320 were listed as other ethnic background. From 2008 to 2009, a total of 1,632 individuals participated in the programs. Of these, 50 were males and 1,582 were females. As well, 6 were Asian Pacific Islander, 749 were Black, and 682 were White. Of these, 1,377 identified themselves as Latino, and 256 were listed as other ethnic background ( Table 2). * The total number is more than total participants because of the duplication of racial identity.

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Evaluation of Community-Based Projects to Reduce Cancer Disparities among Underrepresented Groups and Participants Satisfaction in Health Disparities Projects In breast and cervical cancer prevention programs, change of proportion of African-American or Black recruitment significantly increased from 2006-08 to 2007-09 from -11.3% to 3.4% (Figure 1). Among "other" ethnic groups, Haitian participants increased significantly. Among other services, all means of outreach such as mobile vans, faith-based activities, health fairs, and small-group education sessions also increased-by 5.3%, 7.9%, 5.5%, and 9.4% respectively ( Figure 2).

Immediate Outcome and Impact Measures
There was a significant change in the proportion of participants who were screened for breast cancer by clinical breast examination and mammography; for cervical cancer Overall, breast and cervical cancer programs had mixed success throughout the funding period. Outreach efforts were reasonably successful (Figure 2), and increased referrals to health care providers may have impacted overall quality-of-life-related outcomes; however, due to lack of individual data, this could not be established at this point.

Participants' Satisfaction:
In complex programs that deal with health disparity issues, participants' satisfaction about the outreach efforts, services provided, and self-reported gain in knowledge, skills, and behavior may be considered as immediate outcomes 26,27 . To understand participants' satisfaction with different aspects such as program access, staff skills, cultural sensitivity, and overall satisfaction, a survey was conducted among participants through the respective program offices. A 30-item survey instrument (Appendix-1) was developed that included demographics and satisfaction levels in a 5-point Likert Scale. The survey was distributed among program offices in Florida through the Office of Minority Health, Florida Department of Health. The program offices mailed or electronically sent the survey to the program participants with return instructions. By completing the survey, the participants provided the informed consent to take part in this evaluation research. The survey was approved by the Institutional Review Board (IRB) at the Florida A&M University (FAMU).    The project/program I participated in provided necessary services to me. 209 (4.7) 0.5 2.0 5.0 The project/program I participated in had sufficient staff to provide necessary services. 208 (4.7) 0.6 1 5 The project/program staff was very much sensitive to my culture. 209 (4.7) 0.6 3 5 The project/program staff understood my language and spoke accordingly. 207 (4.7) 0.5 3 5 The project/program staff had necessary training and skills to provide services as needed. 209 (4.7) 0.5 3 5 The project/program I participated in had sufficient resources to provide necessary services. 209 (4.6) 0.6 1 5 The project/program I participated in provided me services that were not available to me from any other project or program. 208 (4.5) 0.8 1 5 I have received helpful educational materials from the project/program. 209 (4.7) 0.7 1 5 I have received necessary referral services whenever needed from the project/program. 206 (4.6) 0.6 3 5 In my opinion, the program/project I attended performed a good job. 207 (4.7) 0.5 3 5 The project/program helped me to adopt a new health-related behavior. 209 (4.6) 0.7 1 5 The Overall I am satisfied with the program/project. 209 (4.8) 0.5 1 5 A total of 231 surveys were returned to the evaluator through the Office of Minority Health. However, in final analysis 19 participants were excluded who responded that their age was less than 18 years. The majority of respondents were 35-54 years old (46.7%), non-Hispanic Black (81.7%), female (70.3%), high school and some college educated (58.8%), and with income less than $25,000 (65.5%). The demographics of the participants who have completed the survey were further broken down by gender, age, insurance, income, marital and employment status ( Table 4).
The majority of the responding participants received services during the 2008-2009 program period (65.6%) and participated in Cardiovascular Diseases and Diabetes programs (37.3% and 30.6%, respectively). The majority of the participants were very satisfied with the program staff's training, cultural sensitivity, language skills, resources, education materials, referral system, and changing behavior (mean score: 4.5-4.7 on a 5-point Likert Scale). The participants were also satisfied with the overall project and the project's role in improving their quality of life. They valued the programs and wanted them to continue (Table 6).

Conclusion
Despite multiple challenges, the 51 Closing the Gap (CTG) programs are making enormous strides in eliminating health disparities in diabetes, cardiovascular diseases, cancer, HIV/AIDS, adult and child immunization, maternal and infant mortality, and oral health in Florida. There are three cancer projects among the Closing the Gap programs ( Table  1). The goal of two of the cancer projects is to increase the rate of early detection of breast and cervical cancer among minority women in the front porch communities of Dade and Palm Beach counties. The goal of the third CTG cancer project is to increase the rate of early detection of colorectal cancer in the front porch communities of Pinellas County. Nineteen CTG projects have been serving front porch community members in Palm Beach, Duval, Hillsborough, Escambia, Jackson, Citrus, Lake, Sumter, Marion, St. Lucie, Broward, Orange, Leon, Gadsden, Jefferson, Taylor, Dade, Lee, Collier, and Alachua counties 23 .

Discussion
The overall objectives of this evaluation were to establish the immediate impacts and some outcomes of these projects quantitatively. Due to the lack of individual level disaggregated data, a unique methodology was developed to quantify some of these immediate impacts and outcomes. However, since this methodology used an aggregated level of data, conclusions on individual levels may lead to ecological fallacies. Additionally, participants' satisfaction is considered a significant impact/outcome; however, one must consider the fact that in some cases, the participants were comparing project services with the virtually non-existent services that they had previously experienced as the standard of care. In this evaluation, the survey on participants' satisfaction may not be representative to all the program participants since data were nonrandomly selected. Due to inconsistency of data collection some outcome/impacts that were establish in 2006-2008 period could not be compared to 2008-2009, which has limited the ability to draw conclusion in continuous form of these evaluation period (2006)(2007)(2008)(2009).
A great deal of qualitative information was generated on the programs' cultural sensitivity, staff communication, community health workers recruitment, different types of barriers, and facilitators of success in the past evaluation 24 . Along with these factors, health literacy and access to services must be examined. Furthermore, a separate study found that travel impediments may influence access to health care, particularly in cancer screening 28 . Future programs should consider incorporating these factors in providing services.