Sarah Gehlert

Applying What We Know to Accelerate Cancer Prevention

Research says we already know how to prevent half of all cancers; now we need to put knowledge into action. Research says we already know how to prevent half of all cancers; now we need to put knowledge into action. More than half of the cancer occurring today is preventable by applying knowledge that we already have. Tobacco, obesity, and physical inactivity are the modifiable causes of cancer that generate the most disease. Cancer burden can be reduced by alterations in individual and population behaviors and by public health efforts as long as these changes are driven by sound scientific knowledge and social commitment to change. The obstacles to these efforts are societal and arise from the organization of institutions, including academia, and in the habits of daily life. To achieve maximal possible cancer prevention, we will need better ways to implement what we know and improved infrastructure that will better incentivize and support transdisciplinary, multilevel research and successful intervention.

Recruitment of minority and underserved populations in the United States: The centers for population health and health disparities experience

OBJECTIVE The recruitment of minority and underserved individuals to research studies is often problematic. The purpose of this study was to describe the recruitment experiences of projects that actively recruited minority and underserved populations as part of The Centers for Population Health and Health Disparities (CPHHD) initiative. METHODS Principal investigators and research staff from 17 research projects at eight institutions across the United States were surveyed about their recruitment experiences. Investigators reported the study purpose and design, recruitment methods employed, recruitment progress, problems or challenges to recruitment, strategies used to address these problems, and difficulties resulting from Institutional Review Board (IRB) or Health Insurance Portability and Accountability Act of 1996 (HIPAA) requirements. Additionally, information was collected about participant burden and compensation. Burden was classified on a three-level scale. Recruitment results were reported as of March 31, 2007. RESULTS Recruitment attainment ranged from 52% to 184% of the participant recruitment goals. Commonly reported recruitment problems included administrative issues, and difficulties with establishing community partnerships and contacting potential participants. Long study questionnaires, extended follow-up, and narrow eligibility criteria were also problematic. The majority of projects reported difficulties with IRB approvals, though few reported issues related to HIPAA requirements. Attempted solutions to recruitment problems varied across Centers and included using multiple recruitment sites and sources and culturally appropriate invitations to participate. Participant burden and compensation varied widely across the projects, however, accrual appeared to be inversely associated with the amount of participant burden for each project. CONCLUSION Recruitment of minority and underserved populations to clinical trials is necessary to increase study generalizbility and reduce health disparities. Our results demonstrate the importance of flexible study designs which allow adaptation to recruitment challenges. These experiences also highlight the importance of involving community members and reducing participant burden to achieve success in recruiting individuals from minority and underserved populations.

The challenges of collaboration for academic and community partners in a research partnership: Points to consider

The philosophical underpinning of Community-Engaged Research (CEnR) entails a collaborative partnership between academic researchers and the community. The Community-Based Participatory Research (CBPR) model is the partnership model most widely discussed in the CEnR literature and is the primary model we draw upon in this discussion of the collaboration between academic researchers and the community. In CPBR, the goal is for community partners to have equal authority and responsibility with the academic research team, and that the partners engage in respectful negotiation both before the research begins and throughout the research process to ensure that the concerns, interests, and needs of each party are addressed. The negotiation of a fair, successful, and enduring partnership requires transparency and understanding of the different assets, skills and expertise that each party brings to the project. Delineating the expectations of both parties and documenting the terms of agreement in a memorandum of understanding or similar document may be very useful. This document is structured to provide a “points- to-consider” roadmap for academic and community research partners to establish and maintain a research partnership at each stage of the research process.

Human Subjects Protections in Community-Engaged Research: A Research Ethics Framework

In the 30 years since the belmont Report, the role of the community in research has evolved and has taken on greater moral significance. Today, more and more translational research is being performed with the active engagement of individuals and communities rather than merely upon them. This engagement requires a critical examination of the range of risks that may arise when communities become partners in research. In attempting to provide such an examination, one must distinguish between established communities (groups that have their own organizational structure and leadership and exist regardless of the research) and unstructured groups (groups that may exist because of a shared trait but do not have defined leadership or internal cohesiveness). In order to participate in research as a community, unstructured groups must develop structure either by external means (by partnering with a Community-Based Organization) or by internal means (by empowering the group to organize and establish structure and leadership). When groups participate in research, one must consider risks to well-being due to process and outcomes. These risks may occur to the individual qua individual, but there are also risks that occur to the individual qua member of a group and also risks that occur to the group qua group. There are also risks to agency, both to the individual and the group. A 3-by-3 grid including 3 categories of risks (risks to well-being secondary to process, risks to well-being secondary to outcome and risks to agency) must be evaluated against the 3 distinct agents: Individuals as individual participants, individuals as members of a group (both as participants and as nonparticipants) and to communities as a whole. This new framework for exploring the risks in community-engaged research can help academic researchers and community partners ensure the mutual respect that community-engaged research requires.

Mammary Cancer and Social Interactions: Identifying Multiple Environments That Regulate Gene Expression Throughout the Life Span

Now that the human genome has been sequenced, along with those of major animal models, there is an urgent need to define those environments that interact with genes. The traditional view focuses on ways that gene products interact with the nuclear environment to regulate cell function, causing the physiologic changes, behaviors, and diseases manifest throughout development and aging. Although this view is essential, it is equally essential to understand the converse relationship, namely, to identify those environments at higher levels of organization that regulate the expression of specific genes. Given the vastness of this problem, one effective strategy is to start with a trait for which some of the genes have already been identified, such as malignant disease. In rats, social isolation and hypervigilance increase the incidence of mammary tumors, accelerate aging, and shorten the life span. We propose that similar environmental regulation of gene expression may underlie the disproportionately high mortality from premenopausal breast cancer of Blacks, a minority group that can experience high levels of loneliness and hypervigilance. Our goal is to identify which environments- social, psychological, hormonal, and cellular-regulate genetic mechanisms of mammary cancer risk as well as the specific times in the life span when they do so.

Challenges for Multilevel Health Disparities Research in a Transdisciplinary Environment

Numerous factors play a part in health disparities. Although health disparities are manifested at the level of the individual, other contexts should be considered when investigating the associations of disparities with clinical outcomes. These contexts include families, neighborhoods, social organizations, and healthcare facilities. This paper reports on health disparities research as a multilevel research domain from the perspective of a large national initiative. The Centers for Population Health and Health Disparities (CPHHD) program was established by the NIH to examine the highly dimensional, complex nature of disparities and their effects on health. Because of its inherently transdisciplinary nature, the CPHHD program provides a unique environment in which to perform multilevel health disparities research. During the course of the program, the CPHHD centers have experienced challenges specific to this type of research. The challenges were categorized along three axes: sources of subjects and data, data characteristics, and multilevel analysis and interpretation. The CPHHDs collectively offer a unique example of how these challenges are met; just as importantly, they reveal a broad range of issues that health disparities researchers should consider as they pursue transdisciplinary investigations in this domain, particularly in the context of a large team science initiative.

The prevalence of premenstrual dysphoric disorder in a randomly selected group of urban and rural women

BACKGROUND Premenstrual dysphoric disorder (PMDD) was included as a provisional diagnostic category in the appendices of Diagnostic and Statistical Manual of Mental Disorders (DSM)-III-R (then called late luteal phase dysphoric disorder) and remained as an appendix in DSM-IV. Our study aimed to determine the prevalence of PMDD using all four DSM-IV research diagnostic criteria in a representative sample of women of reproductive age in the United States. METHOD Data were collected in the homes of women between the ages of 13 and 55 years in two urban and two rural sites using a random sampling procedure developed by the National Opinion Research Center. Women completed daily symptom questionnaires and provided urine specimens each day for two consecutive ovulatory menstrual cycles (ovulation was estimated for women taking oral contraceptives) and were screened for psychiatric disorders by trained interviewers. Symptoms were counted toward a diagnosis of PMDD if they worsened significantly during the late luteal week during two consecutive ovulatory menstrual cycles, occurred on days in which women reported marked interference with functioning, and were not due to another mental disorder. RESULTS In the final analysis, 1246 women who had had at least one menstrual cycle and were neither naturally nor surgically menopausal nor pregnant were selected. Of the women in the study, 1.3% met criteria for the diagnosis as defined in DSM-IV. CONCLUSIONS The prevalence of PMDD is considerably lower than DSM-IV estimates and all but one of the estimates obtained from previous studies when all DSM-IV diagnostic criteria are considered. We suggest a new process for diagnosing PMDD based on our findings.

Perceptions of Control in Adults with Epilepsy

Summary: That psychosocial problems are extant in epilepsy is evidenced by a suicide rate among epileptic persons five times that of the general population and an unemployment rate estimated to be more than twice that of the population as a whole. External perceptions of control secondary to repeated episodes of seizure activity that generalize to the social sphere have been implicated as causes of these problems. The hypothesis that individuals who continue to have seizures become more and more external in perceptions of control was tested by a survey mailed to a sample of individuals with epilepsy in a metropolitan area of the Midwest. Dependent variables were scores on instruments measuring locus of control and attributional style. The independent variable was a measure of seizure control based on present age, age at onset, and length of time since last seizure. Gender, socioeconomic status, and certain parenting characteristics were included as control variables, as they are also known to affect perceptions of control. Analysis by multiple regression techniques supported the studys hypothesis when perceptions of control was conceptualized as learned helplessness for bad, but not for good, events. The hypothesis was not confirmed when perceptions of control was conceptualized as either general or health locus of control.

Perceptions of Breast Cancer Treatment among African-American Women and Men: Implications for Interventions

BACKGROUNDWhile breast cancer mortality has declined in recent years, the mortality gap between African-American and white women continues to grow. Current strategies to reduce this disparity focus on logistical and information needs, but contextual factors, such as concerns about racism and treatment side effects, may also represent significant barriers to improved outcomes.OBJECTIVETo characterize perceptions of breast cancer treatment among African-American women and men.DESIGNA qualitative study of African-American adults using focus group interviews.PARTICIPANTSTwo hundred eighty women and 165 men who live in one of 15 contiguous neighborhoods on Chicago’s South Side.APPROACHTranscripts were systematically analyzed using qualitative techniques to identify emergent themes related to breast cancer treatment.RESULTSThe concerns expressed most frequently were mistrust of the medical establishment and federal government, the effect of racism and lack of health insurance on quality of care, the impact of treatment on intimate relationships, and the negative effects of surgery, radiation therapy, and chemotherapy.CONCLUSIONSIn addition to providing logistical and information support, strategies to reduce the breast cancer mortality gap should also address contextual factors important to quality of care. Specific interventions are discussed, including strategies to enhance trust, reduce race-related treatment differences, minimize the impact of treatment on intimate relationships, and reduce negative perceptions of breast cancer surgery, radiation therapy, and chemotherapy.

The 2011–2016 Transdisciplinary Research on Energetics and Cancer (TREC) Initiative: Rationale and Design

PurposeRecognition of the complex, multidimensional relationship between excess adiposity and cancer control outcomes has motivated the scientific community to seek new research models and paradigms.MethodsThe National Cancer Institute developed an innovative concept to establish a center grant mechanism in nutrition, energetics, and physical activity, referred to as the Transdisciplinary Research on Energetics and Cancer (TREC) Initiative. This paper gives an overview of the 2011–2016 TREC Collaborative Network and the 15 research projects being conducted at the centers.ResultsFour academic institutions were awarded TREC center grants in 2011: Harvard University, University of California San Diego, University of Pennsylvania, and Washington University in St. Louis. The Fred Hutchinson Cancer Research Center is the Coordination Center. The TREC research portfolio includes three animal studies, three cohort studies, four randomized clinical trials, one cross-sectional study, and two modeling studies. Disciplines represented by TREC investigators include basic science, endocrinology, epidemiology, biostatistics, behavior, medicine, nutrition, physical activity, genetics, engineering, health economics, and computer science. Approximately 41,000 participants will be involved in these studies, including children, healthy adults, and breast and prostate cancer survivors. Outcomes include biomarkers of cancer risk, changes in weight and physical activity, persistent adverse treatment effects (e.g., lymphedema, urinary and sexual function), and breast and prostate cancer mortality.ConclusionThe NIH Science of Team Science group will evaluate the value added by this collaborative science. However, the most important outcome will be whether this transdisciplinary initiative improves the health of Americans at risk of cancer as well as cancer survivors.