| Research in Decision Making Across the Behavioral Research Program and the Office of Cancer Survivorship
The Behavioral Research Program and the Office of Cancer Survivorship at the National Cancer Institute encourage research applications that address decision making across the cancer continuum. A brief description of the decision-making research interests of the Office of Cancer Survivorship, Health Communication and Informatics Research Branch, Applied Cancer Screening Research Branch, Health Promotion Research Branch, and the Tobacco Control Research Branch is provided below.
Decision-Making Research Interests of the Office of Cancer Survivorship (OCS)
Some of the newest targets of interest in the burgeoning field of cancer-related decision making research are the members of the growing population of cancer survivors. While many investigators are familiar with studies that examine health-related decision making in the context of cancer prevention (e.g., lifestyle choices, wellness behaviors), early detection (e.g., utilization of screening techniques such as PAP smears, mammography, colonoscopy, PSA tests) and even treatment selection, few realize that those on the other end of the cancer control continuum, post cancer treatment, face a number of new and previously unexplored challenges to decision making. By virtue of their longer-term life expectancy, many survivors are now becoming candidates for primary (changing health behaviors to prevent new cancers) and secondary (screening for other age-related cancers) prevention, not just tertiary prevention (screening for a cancer recurrence).
Research shows that cancer survivors are high health care utilizers owing to the effects of their cancer and the long-term or late sequelae of treatment approaches for cancer. At the same time, given that the majority of survivors (60%) are also over the age of 65, significant numbers have or are at increased risk for age-related comorbid conditions that will demand care. Despite this, little systematic research exists on how survivors make decisions about their health and behaviors once active cancer treatment ends. In particular, we do not know how cancer survivors decide whether to engage in follow-up care; whom to see for this; when to consider a given symptom worth attending to; whether to adopt lifestyle changes and, if so, which ones; if they will adhere to a given schedule of care or maintenance therapy recommendations; whether to participate in post-treatment clinical trials or research; and even such fundamental issues as whom to tell about their cancer diagnosis or whether to consider oneself a "cancer survivor" or member of some other category (e.g., is not yet a "survivor" [has not passed the 5-year, disease-free mark], wants to forget about cancer and avoid labeling, prefers the term "thriver," etc.).
The Office of Cancer Survivorship (OCS) is interested in supporting research that will enable us to better understand how cancer survivors who are post-treatment negotiate these multiple decision-making points, the impact of their decisions on health care outcomes, and the role that health care providers, systems, and family members may play in influencing these decisions. The OCS is also interested in promoting research that seeks to develop strategies or interventions to provide the information necessary for survivors to make informed decisions about their post-treatment health, and ultimately improve the quality of life and care received by all of those living long-term with cancer.
Decision-Making Research Interests of the Health Communication and Informatics Research Branch (HCIRB)
The Health Communication and Informatics Research Branch (HCIRB) recognizes the perspective espoused by Howard Leventhal at Rutgers University and Baruch Fischhoff at Carnegie Mellon University that individuals lead active, goal-oriented lives. In pursuit of those goals, people make literally hundreds of health-related decisions daily. A great number of those decisions will be small and automatic ("What should I order for breakfast?"), while others will be undeniably consequential and will require reasoned thinking ("What form of treatment shall I select based on my diagnosis of prostate cancer?"). It is the goal of research within the HCIRB to understand how the information environment can be modified through advances in health communication and informatics to support positive health outcomes from daily decision-making. Specifically, the HCIRB seeks to support communication research across the cancer continuum to enable decisions leading to: (a) healthier and cancer-free lifestyles; (b) the optimal use of early detection procedures to eradicate cancer's presence before it spreads; (c) the effective use of treatment; and (d) vigilance in order to prevent recurrence and/or metastasis.
To achieve these ends, the HCIRB will continue its investments in traditional areas of health communication, such as message framing and diffusion, to understand how these basic communication processes are related to effects on decisional heuristics and outcomes. Much of this basic research is still needed in order to understand how to create more effective public service campaigns for health behaviors that are becoming increasingly more complex and nuanced all the time (e.g., decisions to seek age-appropriate screening tests). At the same time, the HCIRB understands that an infusion of applications in medical and consumer informatics is opening up a new era of communication research. Research must be conducted in the context of decision support technologies to improve the ways in which informatics applications support enhanced decision making both for clinicians and their patients. Research is also needed to understand how the artifacts of decision support technologies (e.g., Web site printouts) influence the quality of patient-provider communications, especially in the context of collaborative decision making.
Decision-Making Research Interests of the Applied Cancer Screening Research Branch (ACSRB)
Cancer screening recommendations have shifted from solely promoting the use of screening tests to promoting informed decisions about whether or not to get screened. An increasing number of controversies over the risks and benefits of cancer screening tests, such as the PSA to detect prostate cancer and mammograms for women in their 40s, have combined with forces such as direct marketing of medical tests to consumers to compel this shift in perspective. As a result, cancer screening intervention research and practice now frequently considers an informed decision-rather than screening uptake-as the outcome of interest.
Very little is known about the processes of screening decisions or how best to measure informed decision making as an outcome. The lack of validated measures impedes the progress of such useful research. Therefore, development of measures for both research and surveillance would facilitate evaluation of intervention studies and contribute to understanding and monitoring the relationship between decision processes and trends in cancer screening. The ACSRB would like to support the development and dissemination of such measures in order to stimulate more coordinated research in this area.
Research on decision making about cancer screening can take many useful forms. Although the nature of the process requires adapting interventions to individuals' values and preferences, this adaptation can be accomplished using a variety of approaches, such as printed materials, telephone or computer-based counseling, or person-to-person interaction. Each approach can be designed to influence a variety of outcomes, such as increasing relevant knowledge, patient and/or provider satisfaction with the process (or decision), or perhaps even screening rates or health outcomes. The ACSRB is interested in research to improve our understanding of the patient, provider, and health system factors that influence decision making and the development of strategies that can effectively communicate information about screening.
Decision-Making Research Interests of the Health Promotion Research Branch (HPRB)
In response to the two program announcements related to decision making in cancer control, the Health Promotion Research Branch is particularly interested in promoting research that focuses on processes to maintain an active lifestyle, maintain healthy eating habits, lose weight, and reduce sun exposure. Of particular interest to the HPRB are: (1) studies that examine the moderators and mediators associated with decision-making processes involved in sustaining a behavior change; (2) studies that focus on understanding the mechanisms of sustaining long-term behavior change; (3) studies that test the validity of ecological momentary assessment measures related to decision-making processes; (4) studies that assess how ecological momentary assessment can impact decision-making processes; (5) studies that examine how biological factors (e.g., stress, physical fitness, anxiety, depression, age, gender) and environmental factors (e.g., access to exercise facilities or access to healthy food) may influence decision-making processes related to sustaining healthy behaviors; and (6) studies that compare the decision-making processes involved in initiating and sustaining frequent behaviors (such as healthy eating and physical activity) and less frequent behaviors (such as sun exposure).
Decision Making Research Interests of the Tobacco Control Research Branch (TCRB)
The Tobacco Control Research Branch is interested in promoting the following types of decision-making research: (1) studies that examine decision-making factors related to why initial smoking leads to continued smoking (e.g., the interplay of sensory, social, and biological factors that lead to continued use); (2) studies that examine the decision to quit smoking, including when and how to quit (e.g., use of behavioral and/or pharmacological approaches to quitting); (3) studies that examine how individuals maintain smoking abstinence or relapse; (4) studies that examine decisions to switch types and brands of products; (5) and studies that examine how individuals initiate tobacco use and make initial product choices.
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