Primary care physicians' attitudes, knowledge, and practices related to cancer clinical trials.

BACKGROUND: Participation of patients in cancer clinical trials is disappointingly low and several physician-based factors are thought to be responsible. METHODS: In 1998-1999, the National Cancer Institute (NCI) conducted a probability survey of three primary care physician groups to gain a better understanding of the barriers to clinical-trial patient accrual from their perspective. RESULTS: Findings from this survey of 706 primary care physicians indicate that the vast majority (98%) refer their patients with cancer to a specialist for cancer treatment and rarely bring up the topic of cancer clinical trials. Frequently cited reasons for not mentioning clinical trials are preferring to leave that discussion to the oncologist (41%) and being unaware of any clinical trials that may be available for the patient (37%). CONCLUSION: Primary care physicians may represent an important untapped resource for introducing the concept of clinical trials as an option to newly diagnosed cancer patients.

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

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 defines the critical role evaluation plays in each program component. The overview describes two customer satisfaction and impact surveys performed by an independent survey research firm in 1996 to evaluate the CIS model: (a) the telephone service user survey, a random sample of 2,489 persons representing major caller groups who were interviewed 3 to 6 weeks after their initial call to the CIS; and (b) the outreach partner survey, a random sample of 867 partner organizations, the majority of which reach minority and underserved audiences with information and programs, surveyed within a few months after a contact with the CIS outreach program. Impact data for both program areas were favorable: Approximately 8 out of 10 CIS callers reported that the information they received had a positive impact (either in eliciting a positive action [56%] or in reassurance of decisions made [22%]) and two-thirds of CIS partners said the CIS has an important impact on their programs.

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

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 contacts before calling the CIS. Younger callers (under 40), those with a higher level of education, and those seeking information about treatment and causes of cancer were more likely to contact other sources for the same information. Health professionals, libraries, and bookstores were the most commonly used non-CIS sources. This variety in information seeking highlights the need for services, like the CIS, that can meet the diverse information needs of callers.

Appendix to Part 1: Description of survey methods for the CIS telephone service user survey and CIS outreach partner survey.

Both the CIS telephone service user survey and CIS outreach partner survey were statistically based surveys conducted in accordance with standard research practices and techniques. Following are descriptions of the research designs for each survey, the sample selection techniques employed, and the response rate statistics.

Building effective partnerships: a national evaluation of the Cancer Information Service outreach program. Part 2.

The Cancer Information Service's (CIS) nationally coordinated, regionally focused outreach program establishes partnerships with government, nonprofit, and private organizations to reach underserved and minority populations. A national random sample telephone survey, conducted with 867 partner organizations who had contact with the CIS in early 1996, assessed the types of CIS assistance used, satisfaction with and usefulness of these services, organizational characteristics, and the overall impact on partners' cancer-related programs. CIS partners provide programs for the medically underserved (79%) and specific racial and ethnic groups (72%) and address a range of cancer control issues. Partners use and highly value an array of CIS assistance. Over 90% are satisfied with the CIS services. Diffusion of accurate and science-based information, materials and resources is a key element of the outreach assistance. Two out of three partners are receiving late-breaking news and scientific information from the CIS and 86% are disseminating it to their constituents. The majority of those partners surveyed reported that they rely on the CIS to assist with their most important cancer programs. Sixty-eight percent of the partners rated the CIS assistance as important or very important to their cancer-related programs. These survey results indicate that the CIS outreach program provides key support to partners' cancer programs and has an impact on their efforts. The results support the effectiveness of a regionally based outreach program working in partnership with existing organizations at the state, county, and local level who are addressing the needs of underserved populations.

Reaching minority and underserved populations: the impact of the Cancer Information Service's outreach program. Part 3.

Through its regional outreach program, the Cancer Information Service (CIS) develops partnership with organizations that reach minority and underserved populations and connects them with accurate cancer information and an array of support services and resources. To evaluate the usefulness, satisfaction, and impact of the CIS outreach program on partner organizations, a national random sample survey was conducted by an independent research firm in 1996. This paper focuses on the survey results of 359 special population partner organizations that identified their main audience as a specific racial or ethnic group and/or the underserved. Almost all (84% to 93%) rated the services provided by the CIS outreach program to be very important or important to meeting the goals of their projects. A large majority of these special population partners stated that the CIS provided them with the latest cancer information (67%) and National Cancer Institute (NCI) resources (83%), and more than half (57%) utilized CIS expertise to develop and plan programs. Special populations partners were more likely to use an array of CIS assistance than other CIS partners. Furthermore, they were more likely to be heavy users of CIS assistance and more likely than other CIS partners to indicate that the CIS had an important impact on their programs. The results indicate that the CIS's nationally coordinated, regionally focused outreach program provides critical support and has an important impact on the cancer-related programs of partner organizations that reach minority and underserved audiences.

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

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.

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

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.

Coping with cancer: the impact of the Cancer Information Service on patients and significant others. Part 6.

The Cancer Information Service (CIS) has been the voice of the National Cancer Institute (NCI) for more than 20 years. In 1997, the CIS telephone service received 14,689 inquiries from the public about coping with cancer and its consequences (total calls = 500,000). In a random sample survey of 2,489 CIS callers conducted in 1996, respondents who stated they called the CIS for coping information were asked to evaluate the information provided by the CIS, overall satisfaction with this information, and what impact this information had on patients and significant others. Most of those who called about coping were not the patients (33%) themselves; rather, they were significant others of patients (spouses/partners [21%], parents [16%], friends/coworkers [11%], other family [19%], other [9%]). The information received was new to most callers (> or = 93%). Respondents were satisfied with the information (92%) and felt the CIS information specialist was knowledgeable (95%) and trustworthy (96%). Respondents (patients/significant others) stated that the information made it easier to adjust to the illness (52%/80%), reassured them (68%/69%), and helped them find community support (34%/39%). Patients and significant others evaluated the CIS information exchange differently; significant others rated it higher than did patients. Results indicated that the CIS model of health communications had a positive impact on persons coping with a diagnosis of cancer. Further research is needed to understand how the information needs of patients differ from those of their significant others, and training is needed to tailor the information exchange to meet those unique needs.

Promoting cancer prevention and screening: the impact of the Cancer Information Service. Part 7.

Cancer Information Service (CIS) inquiries about cancer prevention and screening are an important opportunity to educate callers about primary or secondary cancer prevention, facilitate their decision-making, and, where appropriate, encourage action. An evaluation was conducted to assess whether these callers' information needs are being satisfied and to determine if the information provided facilitates decisionmaking and subsequent risk reduction actions. A random sample of 2,489 callers was surveyed during a 5-week period, 3 to 6 weeks after their initial call to CIS; prevention or screening was stated as the main reason for calling by 331 respondents. A series of questions was asked regarding level of satisfaction with CIS's performance and how helpful the information provided was in terms of feeling more knowledgeable, making decisions, and taking action. The vast majority of respondents were satisfied with the information received, found it to be helpful, felt more knowledgeable as a result, and would call CIS again with subsequent questions. Although demand characteristics are a possible source of bias, nearly three-quarters of the respondents reported subsequently discussing the information provided with someone else, and almost half sought additional information recommended by CIS. Nearly two-thirds of primary prevention respondents and about half of secondary prevention respondents indicated that they had taken some risk-reducing action subsequent to their interaction with CIS. The CIS is effectively satisfying the information needs of prevention and screening callers; information it is providing is effectively facilitating decisionmaking and stimulating callers to take action.