Mary Anne Bright

Cancer patients' information needs across the cancer care continuum: evidence from the cancer information service.

ABSTRACT This study examines the information needs of cancer patients who contacted the National Cancer Institutes (NCIs) 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.

The Efficacy of Tailored Print Materials in Promoting Colorectal Cancer Screening: Results From a Randomized Trial Involving Callers to the National Cancer Institute's Cancer Information Service

ABSTRACT 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.

Exploring e-Health usage and interest among cancer information service users: the need for personalized interactions and multiple channels remains.

ABSTRACT 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 Institutes (NCIs) 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.

Awareness of the National Cancer Institute's Cancer Information Service: Results from the Health Information National Trends Survey (HINTS)

Established in 1975, the National Cancer Institutes (NCIs) 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 publics awareness of the CIS and other national cancer and health organizations by analyzing data from the NCIs 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.

Cancer Patient and Survivor Research From the Cancer Information Service Research Consortium: A Preview of Three Large Randomized Trials and Initial Lessons Learned

The authors describe 3 large randomized trials from the Cancer Information Service Research Consortium. 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 also tests a telephone callback intervention delivered by a cancer information specialist. All participants receive standard print material specific to each project. Preliminary results from the 2-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: n =208; Project 2: n =340; Project 3: n =792). Self-reported use of the multimedia program was 51%, 52%, and 67% for Projects 1, 2, and 3, respectively. Self-reported use of the print materials (read all, most, or some) was 90%, 85%, and 83% for Projects 1, 2, and 3, respectively. The callback intervention was completed by 92% of Project 3 participants. Among those using the Cancer Information Service Research Consortium interventions, perceived usefulness and benefit was high, and more than 90% reported that they would recommend them to other cancer patients. The authors present 5 initial lessons learned that may help inform future cancer communications research.

Patient-centered communication in cancer care: The role of the NCI's Cancer Information Service

While patient-centered care and the reduction of suffering due to cancer are primary goals of the NCI, improvement in the delivery of patient-centered communication has been identified as a key NCI research priority. As research on patient-centered communication evolves, the potential contributions of programs such as the National Cancer Institute’s (NCI) Cancer Information Service (CIS) cannot be overlooked. The purpose of this paper is to describe how the six core functions of patient-clinician communication described in the literature (fostering healing relationships, exchanging information, responding to emotions, managing uncertainty, making decisions and enabling patient-self management) are embedded in the work of the CIS. The communication process used by the CIS to extend the patient-centered communication role of the clinician will be discussed. CIS training and quality management systems will be described. Lastly, suggestions for the role of CIS in future health information delivery and research will be explored.

The National Cancer Institute's Cancer Information Service: A New Generation of Service and Research to the Nation

ABSTRACT The National Cancer Institute (NCI), the nations leading agency for cancer information and research, mandated by the U.S. Congress to provide accurate, up-to-date information about cancer to all segments of the U.S. population, established the Cancer Information Service (CIS) on July 1, 1975. Using a two-pronged approach, the telephone information service and education programs for the public and health professionals, the CIS was designed to maximize its reach. In 1982, the CIS implemented three tools: the Call Record Form to record data about each call to the service, a national user survey, and a system of national test calls. These resulted in a rich data source and an infrastructure that allowed collaborative health communications research with the CIS to emerge later in the decade. As the CIS embarks on a new generation of service to the nation, it is now characterized by three vital components that advance the NCIs overall mission of cancer prevention and control: a Partnership Program, Multichannel Contact Centers, and a Health Communications Research Program.

The International Cancer Information Service: A Worldwide Resource

The need for accurate and relevant cancer information continues to grow worldwide. While healthcare professionals are the preferred source of cancer information, their time is limited, and patients are often not sure what to ask and their questions do not always come to mind in the physician’s office. In its 30-year history, the National Cancer Institute’s (NCI’s) Cancer Information Service (CIS) has shown that it can increase users’ confidence in their ability to seek more information, understand the causes and risk factors for cancer, and participate in decisions about their treatment. In 1996 the International Cancer Information Service Group (ICISG) was formed to facilitate the development of CIS programs throughout the world. A network of nearly 50 cancer organizations from 30 countries, the ICISG strives to provide its member organizations with standards and resources to ensure that the cancer information is of high quality, credible, and up-to-date and that it is delivered in a personal manner that complements and supports the patient/physician relationship. The ICISG offers worldwide resources that can augment the healthcare professionals’ offering of information and support to cancer patients and their families.

The CIS model for collaborative research in health communications : A brief retrospective from the current generation of research

ABSTRACT The Cancer Information Service (CIS) of the National Cancer Institute (NCI) is the premiere organization for providing cancer information to the nation. The CIS provides a stellar example of how a service organization dedicated to health communications also can serve as a laboratory for research. This journey by the CIS into health communication research is described briefly, along with the current generation of research summarized in this issue of the Journal of Health Communication (JHC). The CIS model for collaborative research is presented as an exemplar that other service organizations might embrace as a strategic tool for quality improvement in health communications.

A case study in dissemination: lessons learned from a pilot study involving the National Cancer Institute's Cancer Information Service.

ABSTRACT The Cancer Information Service Research Consortium (CISRC) was funded by the National Cancer Institute to disseminate as a pilot study a longitudinally tailored print intervention to promote the 5 A Day for Better Health program among callers to the National Cancer Institutes Cancer Information Service (CIS). Using a one-group (intervention-only) study design, 1,022 eligible CIS callers were enrolled to receive the intervention consisting of four mailings of tailored print materials over a 3-month period. Program evaluation focused on process and implementation evaluation, including adherence to the baseline interviews by CIS information specialists based on live-call monitoring (n = 55 eligible callers), and the timeliness of the intervention mailouts (4,088 scheduled mailouts). Adherence to the baseline interviews by CIS information specialists was extremely high, exceeding 90% for all indicators of quality control. Of the 4,088 intervention mailings, 75% occurred on or before the target date, while 95% occurred within 21 days of the target date. All delays in the scheduled mailouts occurred in the first mailing, due to changes made in the production process (batch printing of all tailored print materials at baseline). This change required additional system upgrades and more intensive and time-consuming quality control than originally anticipated, which was exacerbated by the faster-than-expected accrual of eligible participants. Based on this pilot study, the CIS is now positioned for widespread dissemination of the 5 A Day tailored print intervention. Several key lessons learned are also identified to facilitate the transition from research to dissemination.