Evaluation of the National Cancer Institute's clinical trials booklet.

Evaluating the impact of written materials is a means to enhance the effectiveness of patient education, yet few controlled studies of publications have been completed. In 1984, as a result of a needs assessment, the National Cancer Institute (NCI) developed and pretested the booklet "What Are Clinical Trials All About?" The booklet was designed to help cancer patients make informed decisions about participation in clinical trials, which are critical for improving cancer treatment. The booklet, which is currently available, has been used internationally as a model for communicating information on clinical trials. Since 1985, the booklet has been used by the Cancer Information Service (CIS) as an educational tool for answering questions from cancer patients about treatment and clinical trials. The CIS, which has traditionally assisted NCI in the development and testing of educational materials, was involved in the pretesting and particularly the posttesting of this booklet. The CIS regional offices at Fox Chase Cancer Center and Sylvester Comprehensive Cancer Center together with National Institutes of Health Clinical Center and North Memorial Medical Center conducted a posttest evaluation of the booklet's effectiveness for cancer patients. Two hospitals tested the booklet on patients who were eligible for a specific clinical trial, and two hospitals tested the booklet on patients who were theoretically eligible for a clinical trial (with a cancer site and stage for which a trial existed). Patients were randomly assigned: 203 experimental subjects received the booklet, and 194 control subjects were not given the booklet until after a 2-week posttest examining attitudes, knowledge, and beliefs about clinical trials.(ABSTRACT TRUNCATED AT 250 WORDS)

The first 15 years: what has been learned about the Cancer Information Service and the implications for the future.

The Cancer Information Service (CIS) has been in existence for over 15 years. During that period, lessons have been learned that have been used to increase the effectiveness of the network. This paper lists 12 of those lessons, covering issues such as giving sophisticated medical information; reaching diverse target audiences; using the mass media; developing systems needed for quality assurance, research, and information technology; and nurturing a local-national partnership. The paper also discusses major accomplishments of the program and lists recommendations for meeting the challenges to be faced by the CIS in the future.

History of the Cancer Information Service.

The Cancer Information Service (CIS) was established on July 1, 1975, following the mandate of the National Cancer Act of 1971 giving the National Cancer Institute (NCI) new responsibilities for educating the public, patients, and health professionals. Funded under a contract mechanism, the CIS has become one of the longest-running community programs in NCI. The CIS has been able to set up and maintain high-quality service, giving accurate, up-to-date medical information to cancer patients and their families and friends, to health professionals, and to the general public. The CIS network, which has taken more than 5 million calls since its inception, has weathered many changes, both at the national and the local level. Its current call volume, in excess of 500,000 calls per year, makes it one of the most heavily utilized health-related telephone helplines in the country. Using a standardized Call Record Form, data on calls have been recorded consistently since 1983; the dataset now contains information on more than 4.2 million calls. An outreach component that acts as NCI's field arm has been part of the CIS since its inception. The CIS has matured into a stable system that has been reconfigured into 19 regional offices, covering the entire country. These offices run the telephone service and serve as NCI's outreach arm, working with intermediaries to carry out NCI information and education programs in local communities.