Few nationally representative surveys have assessed the cancer-related information seeking behavior of the American public. Data for our analysis were from the 2003 Health Information National Trends Survey (HINTS). The goals of our analysis were to characterize cancer information seekers (3,011) and nonseekers (3,348) in terms of sociodemographic, health care access, and health status variables, and to describe the nature of the cancer-related information being sought by information seekers. Significant and independent associations with seeking status were identified for gender, age, race, income, education, personal and family history of cancer, and having a usual source of health care. Information seekers were less likely to be male (OR = .51); aged 65 or older (OR = .40); Hispanic (OR = .60); to have a usual source of health care (OR = .70); and more likely to have incomes greater than $50,000 (OR = 1.50), some college (OR = 1.87) or a college degree (OR = 2.95), a prior cancer diagnosis (OR = 3.57), or a family history of cancer (OR = 2.17). Among cancer information seekers, the most frequently searched topic was cancer site-specific information (50.2%). Individuals who reported searching for cancer site-specific information were most frequently looking for information about breast cancer (23.8%), prostate cancer (11.5%), and skin cancer (11.3%). The HINTS survey provides a unique opportunity to explore the characteristics of information seekers and nonseekers and the content of information being sought by the public in a nationally representative sample; understanding gained from this effort provides generalizable and policy-relevant information about the American public's information needs.

Cancer-Related Information Seeking: Hints from the 2003 Health Information National Trends Survey (HINTS)

The Cancer Information Service (CIS), the voice of the National Cancer Institute (NCI) for more than 20 years, disseminates information through two channels: a toll-free telephone service (1-800-4-CANCER) and an outreach program which develops partnerships with organizations that reach underserved populations. In 1996, the telephone service handled approximately 500,000 calls on a range of topics, including cancer treatment, clinical trials, coping issues, referrals to services, prevention, causes, and symptoms of cancer. As part of a national telephone service user survey, conducted in 1996, that examined the impact of the CIS program, callers were asked what additional sources they went to for the same information that they requested from the CIS. The survey revealed that the CIS plays a critical role for information seekers. Almost 59% of surveyed callers contacted no other sources to address the topic they discussed with the CIS. Almost half of the callers who contacted other sources made all of those...

The use and selection of sources in information seeking: the Cancer Information Service experience. Part 8.

Telephone counseling in psychosocial oncology: a report from the Cancer Information and Counseling Line.

The Cancer Information Service (CIS) of the National Cancer Institute (NCI) is a health communications program that disseminates information through two channels: to individuals through a toll-free telephone service and to organizations (serving primarily underserved populations) through an outreach program. People call the 1-800-4-CANCER line to meet a variety of information needs. The information specialists who respond to these calls are prepared to answer questions ranging from cancer prevention to early detection, treatment, and survivorship. In a 1996 random sample survey, 2,489 callers were asked why they called, how they valued the information, and what health-related actions they took or decisions they made since their call. Results show the CIS is highly valued by its users, with satisfaction high across gender, age, education, and racial/ethnic groups. While differences in satisfaction were observed by caller type and subject of inquiry, nearly all respondents reported that contact with the CIS increased knowledge, provided reassurance, and influenced decisionmaking and health behavior. Overall, 95% were satisfied with CIS information, 98% trusted the information, 92% reported an increase in knowledge, 69% felt reassured, and 73% said the information helped them to better cope with their concerns. Eight out of 10 callers reported the information they received had a positive impact, with 56% reporting taking a positive health action. Results demonstrate that health communications programs like the CIS can fill information gaps consumers must bridge to make informed health care decisions and can play an important public health role in motivating people to take actions to reduce risks and/or make decisions that lead to improved health status.

The value and impact of the Cancer Information Service telephone service. Part 4.

The Cancer Information Service (CIS) was established in 1975 by the National Cancer Institute (NCI) to meet the information needs of cancer patients, their families, health professionals, and the public. As the nation's foremost source for cancer information, the CIS applies a unique health communications model to bring the latest research findings on cancer prevention, detection, treatment, and supportive care to the nation. It does this through two main program components: a toll-free telephone service (1-800-4-CANCER) and an outreach program that focuses on providing technical assistance, specifically to partners reaching minority and underserved audiences. During its 22-year history, more than 7.5 million callers have reached the CIS telephone service. In addition, 100,000 requests are received each year from 4,500 organizations nationwide seeking cancer-related outreach expertise. This overview describes the CIS model for health communications, describes the program's impact in broad terms, and defin...

Evaluating the Cancer Information Service: a model for health communications. Part 1.

The Cancer Information Service (CIS) provides accurate, up-to-date information to cancer patients, their families, the general public, and health professionals. In 1996, the CIS telephone service received 208,971 calls from people with questions about cancer treatments and clinical trials (total calls = 500,000). Cancer information specialists are trained and certified to access the PDQ database of treatment options and clinical trials, to translate medical information into understandable terms in order to help callers make treatment decisions, and to discuss clinical trials proactively. A telephone service user survey was conducted to assess the satisfaction and impact of the assistance and information provided to CIS callers. Almost half of the callers (46% of those calling for treatment information, 50% calling for clinical trial information) discussed the CIS information with a physician. Over half (55% treatment, 54% clinical trial) said the information helped them make a treatment decision. Twenty-four percent of treatment and 64% of clinical trial callers had enrolled in or had considered a clinical trial. Almost all (95%) were satisfied with information received from the CIS. The authors find that the CIS is fulfilling its role in disseminating information on cancer treatment and clinical trials through its telephone service. The CIS proactively educates treatment callers about clinical trials. However, the CIS needs to apply other strategies to reach medically underserved populations. Although most callers were able to understand the information, clinical trial callers found the information more difficult than did treatment callers. The CIS is working to simplify written clinical trial information.

K Laepke

Papers

Treatment and clinical trials decisionmaking: the impact of the Cancer Information Service. Part 5.