New Assessment Tool Individualizes Risk Factors for Breast Cancer 

Robin N. Cline, Health Communications Intern, National Cancer Institute 

As of May 1999, NCI had distributed more than 18,000 copies of the risk disk and had received approximately 400 feedback questionnaires from the recipients. The majority of the people ordering the disk were cancer patients (46 percent), followed by clinicians (40 percent), general public (9 percent), scientists (4 percent), and media (1 percent). The majority of questionnaire respondents were doctors and other health professionals (85 percent).

The respondents' feedback indicates that the over-whelming majority find the Breast Cancer Assessment Risk Assessment Tool easy to use (99 percent), appropriate in length (97 percent), and useful in discussing breast cancer risk (94 percent). Most respondents had used the tool in their medical/health practices, primarily in an office or consultation room setting. Other locations included exam rooms, nurses' stations/areas, pharmacies, research offices, health fairs, and a mammography van. Some individuals ordered the tool for private use. 

Sixty-eight percent of the respondents found the risk disk to be complete. However, almost one-third of the respondents felt that it did not provide enough information about other factors that may play a role in estimating the risk of developing breast cancer. The risk factors included in the tool are the number of first-degree relatives with breast cancer, age at first menstrual period, previous breast biopsies, age at first live birth, personal history of breast abnormalities, age, and race. Other identified or proposed risk factors (e.g., age at menopause, dense breast tissue, use of birth control pills or hormone replacement therapy, diet, alcohol use, radiation exposure, and exposure to environmental pollutants) are not included in the program because evidence is inconclusive or their contribution as risk factors cannot be determined precisely. 

Respondents also suggested that the tool be available in Spanish and online (i.e., Internet). In response to these suggestions, an online version of the Breast Cancer Risk Assessment Tool is under development. An updated version of the risk disk, which will be translated into Spanish, is slated for release at the beginning of next year and will include information about and risk estimates for rare, but serious adverse outcomes of tamoxifen use (e.g., endometrial cancer, deep vein thrombosis, and pulmonary embolism). The revisions will allow this assessment tool to provide the most complete information available to assist health care professionals and women review the individual benefits and risks of using tamoxifen to reduce the likelihood of developing breast cancer.

NCI is committed to facilitating discussion between health care professionals and their patients and to providing accurate information to assist them in making health and lifestyle decisions. The Breast Cancer Risk Assessment Tool is the first of its kind developed by NCI to give an estimated risk of developing a specific cancer. As this product is further refined and additional feedback is collected, NCI may explore other similar opportunities.

To request a copy of the Breast Cancer Risk Assessment Tool (available for Mac or Windows) or publications about breast cancer and tamoxifen, call the National Cancer Institute's Cancer Information Service at 1-800-4-CANCER. Information may also be obtained from NCI's Web site, http://cancertrials.nci.nih.gov. For more information about the risk disk, contact Anne Lubenow in the Office of Cancer Communications at 301-496-6667. 

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The National Library of Medicine Builds the Human Body Digitally 

To produce the human cryosection, researchers take slices of a cadaver, of a thickness less than one millimeter, photograph the sections, and digitize the photographic images; they then "build" a three-dimensional replica of a human body, piece by piece. Using CT, a form of radiography, a three-dimensional image of a body structure is constructed by computer from a series of plane cross-sectional images made along an axis (radiography being a picture of the internal organs produced on a sensitive surface, such as film, by a form of radiation such as an X-ray). MRI is a noninvasive diagnostic technique that produces computerized images of internal body tissues and is based on nuclear magnetic resonance of atoms within the body that are induced by the application of radio waves. These miracles of modern information technology are extremely useful to medical research and clinical practice.

Researchers working under the auspices of NLM created "the cyberspace couple" and, via the Internet, more than 1,000 licensees in 30 countries are utilizing these images (e.g., as "surgical simulators" in which physicians rehearse delicate medical procedures on the computer before actually entering the operating room). The VHP images are "recyclable cadavers" that help medical students learn about anatomy via the computer. Other researchers are undertaking "virtual prototyping," which uses the computer to create perfectly fitted hip and knee replacements. 

The Human Gene Map
The Human Genome Project (HGP) is an international scientific collaboration aimed at achieving a basic understanding of the entire genetic content, or genome, of a human being. The project intends to identify all the genes in the nucleus of a human cell; to establish or map where those genes are located on the chromosomes in the nucleus; and to determine by a process known as sequencing the order of the DNA's chemical subunits encoding the genetic information. HGP is a mammoth enterprise that is now entering its final phases, with completion due in 2003. When it is finished, a genetic blueprint for the human species will be available.

A working draft of HGP's "book of life" is nearing completion in 2001. The gene map will enable scientists to identify and isolate genes that directly cause human ailments or increase susceptibility to disease. A running update on HGP's progress can be found at URL http://www.ncbi. nlm.nih.gov/genemap99/. 

From the National Library of Medicine (www.nlm.nih.gov). 

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NIEHS' Guide to International Environmental Health Research

The EHIS provides access to environmental health news and research articles through a variety of features including:

Environmental Health Perspectives, a monthly peer-reviewed science and environmental health news journal. 

Environmental Health Perspectives Supplements, bi-monthly monographs, and an annual review of environmental health.

Report on Carcinogens, prepared by the National Toxicology Program (NTP).

Historical Control and Chemical Health and Safety Databases.

The EHIS website can be found at http://ehis.niehs.nih.gov/.
 

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Evaluation Reporting Template for IHC Applications

Section II focuses on the results of formative and process evaluations, as contributors to application design and development. These items elicit information to help potential users and purchasers judge validity of the content, appropriateness of the application to their specific needs, and whether sufficient testing was done to ensure that the application functions as intended. This section attempts to go beyond the simple disclosure of the descriptive elements (e.g., identity of the developers, sponsorship and purpose of the application) to encourage disclosure of whether and how potential users and other "experts" were involved in application development and how extensively the application was tested prior to release.

Section III focuses on the results of any outcome evaluations performed. The list of outcomes are not exhaustive but includes those most commonly encountered, ranging from user satisfaction to changes in morbidity or mortality, reduced costs, or organizational change. Potential outcomes are broadly defined because individual developers, users, and purchasers may have very different needs and expectations. For example, while one developer or potential purchaser may be interested in an application that improves management of specific chronic disease symptoms, another may be solely interested in improving general patient satisfaction. Classifications of evaluation designs from the U.S. Preventive Services Task Force are included to provide information relevant to the internal validity of the results (i.e., the strength of evidence that the observed results are due to the intervention). Descriptions of samples are also included to provide information relevant to the "generalizability" of results.

Section IV focuses on information about evaluators and funding to provide potential users and purchasers with information about potential biases or conflicts of interest relevant to the evaluation. The template also attempts to increase accountability for IHC applications by encouraging the disclosure of the person(s) responsible for design and content (Section I) and evaluation (Section IV).