Institute Research Projects
Project EXPORT: Addressing Cancer Disparities in New Jersey Communities
Funding: National Center on Minority Health and Health Disparities, NIH
Principal Investigator: Diane R. Brown, Co-Principal Investigators: Ronald A. Morton, John C. Grew
UMDNJ has recently awarded a grant of $1.2 million to develop a Center of Excellence in Health Disparities in New Jersey. The grant is entitled “Addressing Cancer Disparities in New Jersey Communities” and focuses on the development of resources and infrastructure for cancer research, training, community education and outreach to minority communities. There is no current NIH-funded center in New Jersey, although the state of New Jersey: 1) is the most racially and ethnically diverse state in the nation and 2) has numerous health disparities and is consistently ranked among the ten highest states in the nation for cancer morbidity and mortality.
The grant was awarded to UMDNJ’s Institute for the Elimination of Health Disparities (IEHD) working in collaboration with the Cancer Institute of New Jersey (CINJ) and New Jersey City University (NJCU). New Jersey City University (NJCU) is a Minority Institution (MI) with a predominantly Latino student body. Faculty from UMDNJ’s New Jersey Medical School (NJMS) and the School of Public Health (SPH) are also participating in research activities and community outreach and education. Dr. Diane R. Brown, Executive Director of IEHD is the Principal Investigator and Dr. Ronald A. Morton, Director of Urologic Oncology at CINJ is Co-Principal Investigator. Dr. John Grew is the Co-Principal Investigator from NJCU.
The contiguous cities of Newark and Jersey City will be the initial focus because of their large and diverse African American and Latino populations. However, as the Center develops and grows, other New Jersey communities will be included. The specific aims of the grant are to: 1) build research capacity at UMDNJ and NJCU for the conduct of health disparities research designed to eliminate cancer disparities among minorities in New Jersey; 2) enhance and promote the capacity to increase the participation of African-Americans, Latinos and other health disparity groups in biomedical and behavioral research as well as prevention and intervention activities; and 3) develop a planning process for the conduct of health disparities research addressing the elimination of cancer disparities among minorities. To accomplish these objectives, the grant proposes major components in the following areas: administration, coordination and planning; research and pilot projects; community outreach and information dissemination; training and mentoring; and health disparities education. To guide the implementation of its activities, the new center has a national external scientific advisory board and a local community advisory board. With three years of support devoted to planning and development, this grant will enable the collaboration to augment and strengthen the institutional infrastructure and capacity to conduct research (basic, clinical, behavioral, and/or social sciences). It is expected that the activities will lead to the development of a larger comprehensive grant application (P60) to establish a comprehensive Center of Excellence on health disparities research, community outreach, and training.
Clinical Trials and Cancer Treatment Decision-Making: A Pilot Study to Examine Awareness, Access and Utilization by Diverse New Jersey Populations
Funding: Cancer Institute of New Jersey
This is a proposal to assess the extent to which participation in clinical trials is a part of the treatment decision-making process for persons diagnosed with cancer in New Jersey. The project is a follow-up to the many efforts undertaken in New Jersey to publicize and recruit persons into clinical trials. The proposed project will also assess differences by race/ethnicity, gender and cancer site in knowledge of clinical trials, access to clinical trials, as well as actual participation. The research uses a telephone survey of cancer survivors diagnosed during 2001 prior to major New Jersey clinical trials initiatives such as Project Impact and Clinical Trials Connect. These findings will be contrasted with data from a telephone survey of cancer survivors diagnosed during the latter part of 2003 and early 2004, after the initiation of these major New Jersey clinical trials initiatives. The proposed project will be implemented by the UMDNJ’s Institute for The Elimination of Health Disparities in collaboration with the Office of the NJ State Cancer Registry and be implemented over a two year period. The specific aims are to: 1) examine the extent to persons diagnosed with cancer in New Jersey are knowledgeable of clinical trials and how to access them and to determine if there are disparities in these outcomes by race/ethnicity, gender and cancer site; 2) examine the extent to which clinical trials are a part of treatment decision-making among persons diagnosed with cancer in New Jersey and to determine if there are disparities in these outcomes by race/ethnicity, gender and cancer site; 3) examine the extent to which persons diagnosed with cancer in New Jersey have participated in cancer clinical trials and their assessment of participation and to determine if there are disparities in these outcomes by race/ethnicity, gender and cancer site; and 4) assess the extent which the gap in clinical trial participation rates between African Americans and Caucasians have changed (decreased) after the implementation of the specific New Jersey clinical trials initiatives. Findings from the study are expected to provide a basis for future interventions.
Spiritual-Based Intervention for African American Women with Breast Cancer
Funding: U.S. Department of Defense
Social support has been shown to have value in decreasing morbidity and possibly in increasing length of survival in cancer patients (Spiegel, 1990;Fawzy, Cousins, Fawzy, et al., 1990). Yet, few studies using psychosocial interventions have included African Americans, even though breast cancer mortality is higher for African American women than their Caucasian counterpart. Some studies have noted the significance of religion and spirituality in the lives of African Americans, while other studies have suggested a link between spiritual well-being and the ability to cope with chronic illnesses, such as cancer. However, few studies have examined the impact of a spiritual -based social support intervention on enhancing treatment-related outcomes for African American women with breast cancer. The proposed work has four objectives: 1) to utilize a network of oncology services, churches, and community organizations to recruit African American women diagnosed with breast cancer for project participation; 2) to implement the spiritual-based intervention; 3) to assess the efficacy of the intervention to positively impact treatment-related outcomes; and 4) to refine the intervention for broader dissemination. Based upon a social support paradigm, four hypotheses are posed: (H1) Women in the spiritual-based intervention will have less depression, anger and anxiety than women who are in the control groups. (H2) Women in the spiritual-based intervention will have greater overall quality of life than women who are in the control groups. (H3) Women in the spiritual-based intervention will have greater use of health promoting behaviors than those who are in the control groups. (H4) Women in the spiritual-based intervention will have greater treatment compliance than those who are in the control groups.
The intervention involves an experimental/control group design approach. The experimental support group (intervention group) will receive the Spiritual-based support intervention. There will be two control groups: control group A will include participants in a traditional support group model and control group B will include individuals who receive the standard care consisting of no additional structured support. An Advisory Committee comprised of breast cancer survivors and local clergy will provide guidance to project implementation. The basic content for the support groups covers well-established topics ranging from grief, family and intimate relationships to self esteem, stress management and goal-setting. However, the spiritual support group encompasses exercises and practices such as prayer, and personal expressions of spirituality. Over a three year period the intervention will be tested in three separate rounds. Each round consists of seven sessions, with one session held each month. It is projected that 45 women will participate in each round, 15 women in each group. Participants will be African American breast cancer patients within 24 months of diagnosis, 40 to 65 years of age, diagnosed at stage I, II, or III, have no history of recurrent disease and present with a maximum of one co-morbid condition. Data will be gathered through a pre-test at baseline (T1), a post test at the conclusion of the 7 month intervention (T2), and at a three-month follow-up at the end of the support group sessions (T3). The outcome measures have been validated on minority and/or illness populations. Participants will receive a $70 incentive at the end of each round. Given the higher mortality rate among African American breast cancer patients, it is hoped that the intervention will be successful in demonstrating an improved quality of life and mental health for African American women with breast cancer; that they will exhibit more health promoting behaviors and that they will be more adherent to their treatment regimens. Findings may also give scientific recognition to the importance of spirituality as an activity that can be legitimately used to complement medical care.
Understanding Diabetes Self-Management in Culturally Diverse Urban Populations Funding: Institute for the Elimination of Health Disparities
Principal Investigator: Diane R. Brown, Ph.D.; Co-Investigator: Valerie N. Pogue, MPH
The purpose of the study was to obtain a better understanding of diabetics’ perceptions of self-management, and whether or not they currently engage in self-care practices. The data collected will serve as a foundation for the development of a community-based intervention to improve self-management within the diabetic community of Essex County, with the possibility of expansion to other parts of NJ. Diabetes is both a public health and a financial burden. It is the 6th leading cause of death and currently affects 17 million people in the US. It is estimated that this disease costs $100 billion per year, and this is attributed to healthcare expenditures and lost wages due to disability.
Self-care is the idea that individuals will work with the healthcare provider towards maintaining good health. It has proven to be an effective mechanism, but not for all populations. Specific to minorities and persons of low income, there is evidence of an educational barrier. These individuals lack access to educational resources, and have a variety of perceptions regarding the disease, that are embedded in their culture, and their upbringing. Such perceptions and beliefs decrease the likelihood of adherence and compliance with medical regimens. And while these two variables are not the key concepts being discussed, they must be addressed as they represent barriers to self-management.
Three questions were derived from the existing literature to help successfully guide our research efforts: What are the needs of diabetic patients, according to the patients themselves; How do these needs differ by culture; and What can be done to help patients improve or adopt self-care practices. Focus groups were the method used to collect information, because they are the most effective at capturing one’s beliefs, values and feelings about a particular topic. Three focus groups were held in Sept & October of 2004; one was facilitated in English, and the other two in Creole. A total of 22 diabetics participated in this study, meeting one or more of the following criteria: diabetic; patient of the East Orange Primary Care Center; at least 18 years of age; and of African American or Haitian descent.
The results showed that a major need among diabetics is that of information. This was more of an implication, and not directly stated, but patients need to understand that complications are not inevitable, and usually result from non-compliance; they don’t have to happen. Specific to Haitian participants, they need to be informed about the effectiveness of modern medicine, without being culturally insensitive. They can supplement their medical regimens with home remedies, but they should not act as a substitute. Another theme revolving around information, deals with perceived severity. Some of the participants will only go for regular medical check-ups, when they perceive that there is a problem. The focus should be on the importance of regular monitoring of the disease, or primary prevention of complications. It comes up again, specifically with Haitian patients, but reliance on home remedies is common. They don’t require money, and are customary in their homeland, where access to basic healthcare resources is limited. The results also show that there is a language barrier among some of the Haitian patients. Some felt that language inhibited their ability to adhere with medical regimens. Other participants were more fluent in the English language, or had family members who were able to translate.
Culture was not as blatantly obvious with the African American population. For this group, adherence issues were related to lifestyle. Some participants expressed extreme frustration around having to give up foods that they were accustomed to (i.e. high fat, high salt food) so they would rather eat what they want, versus submit to a disease in which they didn’t have enough information about what the end result would be.
The following are pivotal to the improvement of, and/or adoption of self-care techniques among the study population: Education about disease prevention (What progressive measures are being taken towards a cure?); Information on accessing necessary resources & access to the resources; Providing directions in multiple languages (Spanish, Creole, etc.); Information on living with diabetes (Doesn’t have to alter entire lifestyle, and the end result doesn’t have to be death).
The diabetic population studied had the desire to work collaboratively with the physicians to improve their health, but there were so many missing pieces that prevented them from doing so. As we saw from the results, Haitian patients were dealing with language barriers, as well as lacking access to health insurance and appropriate glucose monitoring devices. African Americans wanted more information on how to find a happy medium between managing their health, and maintaining some semblance of their current lifestyle (how can I control the disease without letting it control my life); they also wanted to know what progressive measures are being taken to find a cure for this chronic illness. Hence, the key to improved self-management practices revolves around diabetics having access to the resources that they feel are necessary, as well as more information on how to deal with this chronic condition.
Resources and Strategies for Community-Based Cancer Prevention and Control in a Diverse Urban Population
Funding Cancer Institute of New Jersey
Statistics from the New Jersey State Cancer Registry clearly show disparities in cancer incidence and mortality by gender, race, age and geographic location. Despite encouraging strides made in the assessment and treatment of many cancers, New Jersey residents in a number of population subgroups do not seem to be benefiting from these advances. These disparities suggest an inconsistency in access and use of screening, education and treatment services. In an effort to address these disparities and develop services that are culturally competent and responsive to the needs of diverse populations, the proposed project will identify existing cancer resources in the greater Newark area and use focus groups to gain community perspectives on the screening, educational and unmet treatment needs. The focus groups will be conducted with diverse ethnic populations including Latinos, Blacks of various ethnic backgrounds, and Caucasian residents of Newark. This proposed project will assess the current availability, awareness and perceptions of screening, education and treatment services for each of the following cancer sites: breast, prostate, lung and colon cancer. After assessing the gaps in service, a community-based cancer summit will be convened for the purposes of sharing findings with the broader community, devising appropriate community-based strategies and establishing an implementation plan to meet service needs.
Increasing Prostate Cancer Screening Among Insured Men
Diane R. Brown, PhD, Principal Investigator
Funding: Department of Defense
Despite having access to health care through insurance coverage, many men lack knowledge about prostate cancer and screening for early detection. The lack of knowledge may impact their ability to make informed decisions regarding prostate specific antigen (PSA) testing. This is a critical issue for men who unknowingly may be at high risk for prostate cancer, and delay seeking prostate cancer screening because of their lack of knowledge or other barriers. This delay in screening may result in diagnosis of advanced disease and potentially greater mortality. Particularly among minority men, specifically African American and Latino the delay in screening contributes to higher rates of advanced disease and higher rates of mortality due to prostate cancer. In light of the need to understand factors influencing prostate cancer screening among men with health insurance, the purpose of the proposed exploratory project is to: 1) Assess barriers to prostate cancer screening among insured men, 2) Assess the extent to which barriers to prostate cancer screening differ in minority men and 3) Utilize findings to devise appropriate interventions that increase knowledge and use of prostate cancer screening among insured men.