This study examines the information needs of cancer patients who contacted the National Cancer Institute's (NCI's) Cancer Information Service (CIS) via a toll-free telephone number. Records from 19,030 calls received from cancer patients between September 2002 and August 2003 were analyzed to determine differences in subjects of interaction (main topics of inquiry and discussion) for subgroups of patients based on demographic characteristics and stage along the cancer care continuum (pretreatment, in-treatment, post-treatment, recurrence). Females were more likely than males to inquire about cancer screening/diagnosis, support services, psychosocial issues, and general cancer site information, but they were less likely to seek specific cancer treatment information. Older patients were more likely than younger patients to seek specific treatment information, but they were less interested in support services, psychosocial issues, and prevention/risk factors. Compared with White callers, Hispanics and most minorities were more likely to seek support service information, and African Americans were more likely to have questions related to psychosocial issues. Compared with patients in treatment, patients in recurrence were more likely to seek specific treatment information; patients not in treatment were more likely to seek medical referral information; and patients in post-treatment were more likely to seek screening/diagnosis and prevention/risk factor information. Findings will help the CIS and other cancer-focused organizations address the distinct information needs of different subsets of cancer patients.
In this large randomized trial among callers to the Cancer Information Service (CIS), tailored print materials were tested for efficacy in promoting colorectal cancer (CRC) screening (fecal occult blood test [FOBT], flexible sigmoidoscopy, or colonoscopy). All participants completed baseline interviews at the end of their usual service calls to the CIS, as well as short-term (6-month) and longer-term (14-month) telephone follow-up interviews. The study sample (n = 4,014) was restricted to English-speaking CIS callers 50 + years of age, who would be eligible for CRC screening at 14 months follow-up and did not call the CIS about CRC or CRC screening. Four experimental conditions were compared: a single untailored (SU) mailout of print material (the control condition); a single tailored (ST) mailout of print material; four (multiple) tailored (MT) mailouts of print materials spanning 12 months, all of which were tailored to information obtained at baseline; and four (multiple) retailored (MRT) mailouts also spanning 12 months, with retailoring of the print materials (mailouts 2, 3, and 4) based on updated information obtained from the 6-month follow-up interviews. Consistent with the main hypothesis of this trial, a significant linear trend across the SU, ST, MT, and MRT groups was found at 14 months (42%, 44%, 51%, and 48%, respectively, p = 0.05). Only for MT was there a significant difference compared with SU (p = 0.03) for the sample as a whole, while no differences were found for MT vs. MRT at 14 months. Significant moderator effects in the predicted direction were found among females, younger participants, and among those with a history of CRC screening, all of which involved the SU vs. MT MRT comparisons. Only among younger participants (ages 50-59) was there a difference between SU vs. ST at 14 months. Given these results, we conclude from this trial the following: (1) the MRT intervention failed to show added benefit beyond the MT intervention, (2) the significant intervention effects involving the MT and MRT conditions can be explained by tailoring and/or the longitudinal nature of both interventions, and (3) the most compelling evidence in support of tailoring was found for the ST condition among younger participants, where a significant need for interventions exists at the national level. Directions for future research are discussed in light of the results summarized above.
Three large randomized trials are described from the Cancer Information Service Research Consortium (CISRC). Three web-based multimedia programs are being tested to help newly diagnosed prostate (Project 1) and breast cancer patients (Project 2) make informed treatment decisions and breast cancer patients prepare for life after treatment (Project 3). Project 3 is also testing a telephone callback intervention delivered by a cancer information specialist. All participants receive standard print material specific to each project. Preliminary results from the two-month follow-up interviews are reported for the initial wave of enrolled participants, most of whom were recruited from the Cancer Information Service (1-800-4-CANCER) telephone information program (Project 1 = 208, Project 2 = 340, Project 3 = 792). Self-reported use of the multimedia program was 51%, 52% and 67% for Projects 1–3, respectively. Self-reported use of the print materials (read all, most or some) was 90%, 85% and 83% for Projects 1–3, respectively. The callback intervention was completed by 92% of Project 3 participants. Among those using the CISRC interventions, perceived utility and benefit was high, and more than 90% would recommend them to other cancer patients. Five initial lessons learned are presented that may help inform future cancer communications research.
Since searching for health information is among the most popular uses of the Internet, we analyzed a survey of 6,019 callers to the National Cancer Institute's (NCI's) Cancer Information Service (CIS) to assess Internet usage and interest in technologies to access health and cancer information. Findings suggest that about 40% of CIS callers used the Internet to obtain cancer information and, of these, only about 20% found all the information they sought. Nearly 33% of Internet users called the CIS to discuss information found on the Internet; most (>90%) reported that the CIS was helpful. Those who sought cancer information on the Internet were more likely to call the CIS about this information if they found all or most of the information they were seeking, compared with those who found some or little of the information. New communication services endorsed by most CIS callers included e-mails from an information specialist and telephone support from the CIS while on the Internet. The survey results indicate the importance of multiple access points, both traditional and technology based, and that there is still a need for more traditional, personalized forms of health communication. A crucial question is how best to harness and integrate these new technologies within the current generation of mediated health information systems.
Purpose When faced with a significant recruitment challenge for three nationwide psycho-educational trials targeting prostate and breast cancer patients, the Cancer Information Service Research Consortium initiated outreach efforts to increase accrual. Recruitment is reported by major outreach strategy to inform the use of similar campaigns, either as primary recruitment efforts or to supplement “in-reach” recruitment within oncology settings. Methods During a 33-month period, recruitment was tracked from the National Cancer Institute’s Cancer Information Service (CIS), the American Cancer Society (ACS), Dr. Susan Love Research Foundation’s Love/Avon Army of Women (AOW), Internet advertising, press releases, radio/television interviews, recruitment materials in community venues, and outreach to churches and cancer support organizations. Results Across projects, the majority (89%) of recruited participants (N = 2,134) was obtained from the CIS (n = 901, 19 months of recruitment), AOW (n = 869, 18 months), and ACS (n = 123, 12 months). Other efforts showed minimal gain in recruitment. Conclusions Cancer information programs (e.g., CIS, ACS) and registries of individuals willing to participate in cancer-related research (e.g., AOW) can represent exceptional resources for outreach recruitment of cancer patients, especially when the eligibility criteria are highly restrictive. However, these resources do not yield samples representative of the larger population of adults diagnosed with cancer, and conclusions from such trials must be tempered accordingly. Implications for cancer survivors Inadequate recruitment to randomized controlled trials limits the creation of useful interventions for cancer survivors. By enrolling in cancer registries and taking part in research, cancer survivors can contribute to the development of effective resources for the survivor population.
Through the National Cancer Act and its amendments (National Cancer Act, 1971; National Cancer Act Amendments, 1974), the U.S. Congress mandated that the National Cancer Institute (NCI) - the nation's lead agency for cancer information and research - provides accurate, up-to-date information about cancer to all segments of the U.S. population. In 1975, the NCI established the Cancer Information Service (CIS), a premieer resource for providing cancer information and education to the nation. The CIS is designed to maximize reach to the public by responding to the cancer needs of clients through several communication technologies, including a telephone service, e-mail, and real-time instant messaging. By offering cancer information to the public through one-on-one interactions with CIS information specialists, the CIS is in a unique position to fill the gap that lies between the preferred, interpersonal source of the health care provider and the actual, impersonal Internet. Cancer Information Service can play an important role in providing health care practitioners, health departments, caregivers, and researchers with up-to-date and accurate information about cancer and clinical trials. Currently, 10% of CIS callers are health professionals. Referring patients to the CIS can augment health practitioners' ability to convey important health information to patients. The CIS program uses NCI resources to educate clients on cancer prevention, early detection, treatment, and rehabilitation and smoking cessation in simple terms that they can understand. Additionally, the CIS works with organizations to develop educational programs and interventions to reach underserved populations. A unique component of this information and education program is its ability to contribute to the field of health communications research by collaborating in research studies throughout the U.S. Finally, since its inception in 1975, the CIS has assisted international organizations with starting a cancer information service and as such is seen as a "stem cell" from which many international CIS programs have derived.
Military veterans are at high risk for nicotine dependence. This clinical demonstration project used invitational letters, referral to the National Cancer Institute's Smoking Quitline, and local Veteran Affairs prescriptions for tobacco cessation to evaluate whether this low-cost method would potentially reduce smoking in separated veterans who served in Afghanistan and Iraq. Three cohorts (500 each) of recently separated veterans from Afghanistan and Iraq were contacted by survey letters. Interested veterans received follow-up telephone calls using standardized scripts. They were referred to the National Cancer Institute's Smoking Quitline (1-877-44U-QUIT) and offered local Veteran Affairs pharmacologic treatment for smoking cessation. Forty-three percent of respondents who were smokers were interested in the clinical program; of these, 77% participated. At 2 months follow-up, 38% of participants self-reported maintained smoking abstinence. Results suggested that the intervention was feasible and assisted the small number of veterans who participated.
Established in 1975, the National Cancer Institute's (NCI's) Cancer Information Service (CIS) is a national information and education network that serves the nation by providing the latest scientific cancer information to the American public. The purpose of this study was to determine the public's awareness of the CIS and other national cancer and health organizations by analyzing data from the NCI's Health Information National Trends Survey (HINTS 2003). This study also examined sociodemographic, health, and communication correlates of awareness of CIS and other national health organizations: American Cancer Society (ACS), National Institutes of Health (NIH), and NCI. Results indicated that awareness of the CIS was low (32.8%). Some subgroups were more likely to be aware of the CIS than others. When comparing awareness levels of the four national health organizations, marked differences in patterns of awareness among specific subgroups emerged for many sociodemographic variables. For example, minority groups were significantly more aware of the CIS than Whites; however, for all three other organizations a greater percentage of Whites were aware of each organization. For the NIH, NCI, and ACS, respondents in the highest income group were most aware of each organization and, as income level increased awareness also increased. The CIS, respondents with the lowest income levels, however, were more aware of the CIS compared with middle- and high-income groups. A similar pattern was found for other sociodemographic variables. Results of this study will guide the development of a targeted promotional campaign for the CIS.
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