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.

Documenting the health insurance needs of cancer patients and providing scarce resolutions.

The American Cancer Society's Health Insurance Assistance Service provides callers to its National Cancer Information Center with detailed knowledge to help them access or maintain health insurance coverage for which they might be eligible. Demographic data from April 2009 to June 2011 show that 76 % were uninsured and between the ages of 40-60; 65 % were Caucasian, 17 % African American, and 12% Hispanic; and monthly incomes were $1,999 or less. Current trends indicate that callers are similar to those identified in various health care reform publications: callers are unable to afford co-pays; facilities are requesting cash upfront; callers report loss of coverage, less adequate or less affordable coverage from employers; large out-of-pocket expense or high deductibles are needed; and modification of the CDC's Breast and Cervical Screening Program's eligibility guidelines create challenges. Six lessons that have been learned while initiating and managing this program are presented.

Results of nine Connecticut Cancer Partnership implementation projects.

The Connecticut Cancer Partnership (Partnership), through funds from the Connecticut legislature, the AttorneyGeneral Fund and some limited federal funding, has spearheaded the implementation of a series of projects by Connecticut institutions and State of Connecticut departments. Among them are projects in prevention, detection, treatment, survivorship and end-of-life care, along with programs that target ethnic and uninsured populations. This article highlights funding sources, procedures for choosing projects and summaries for nine completed projects of interest to practicing physicians. It also includes a listing of additional projects currently underway. The use of shared funding among the State's partners highlights the energy of the Partnership in carrying out the common vision embodied in the Connecticut Cancer Plan.

Development and utilization of complementary communication channels for treatment decision making and survivorship issues among cancer patients: The CIS Research Consortium Experience.

OBJECTIVE: Cancer patients and survivors are assuming active roles in decision-making and digital patient support tools are widely used to facilitate patient engagement. As part of Cancer Information Service Research Consortium's randomized controlled trials focused on the efficacy of eHealth interventions to promote informed treatment decision-making for newly diagnosed prostate and breast cancer patients, and post-treatment breast cancer, we conducted a rigorous process evaluation to examine the actual use of and perceived benefits of two complementary communication channels -- print and eHealth interventions. METHODS: The three Virtual Cancer Information Service (V-CIS) interventions were developed through a rigorous developmental process, guided by self-regulatory theory, informed decision-making frameworks, and health communications best practices. Control arm participants received NCI print materials; experimental arm participants received the additional V-CIS patient support tool. Actual usage data from the web-based V-CIS was also obtained and reported. RESULTS: Print materials were highly used by all groups. About 60% of the experimental group reported using the V-CIS. Those who did use the V-CIS rated it highly on improvements in knowledge, patient-provider communication and decision-making. CONCLUSION: The findings show that how patients actually use eHealth interventions either singularly or within the context of other communication channels is complex. PRACTICE IMPLICATIONS: Integrating rigorous best practices and theoretical foundations is essential and multiple communication approaches should be considered to support patient preferences.

Responding to a significant recruitment challenge within three nationwide psychoeducational trials for cancer patients.

PURPOSE: When faced with a significant recruitment challenge for three nationwide psychoeducational 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 and 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.

The development and preliminary testing of a multimedia patient-provider survivorship communication module for breast cancer survivors.

OBJECTIVE: This paper describes the development of a theory-guided and evidence-based multimedia training module to facilitate breast cancer survivors' preparedness for effective communication with their health care providers after active treatment. METHODS: The iterative developmental process used included: (1) theory and evidence-based content development and vetting; (2) user testing; (3) usability testing; and (4) participant module utilization. RESULTS: Formative evaluation of the training module prototype occurred through user testing (n = 12), resulting in modification of the content and layout. Usability testing (n = 10) was employed to improve module functionality. Preliminary web usage data (n = 256, mean age = 53, 94.5% White, 75% college graduate and above) showed that 59% of the participants accessed the communication module, for an average of 7 min per login. CONCLUSION: The iterative developmental process was informative in enhancing the relevance of the communication module. Preliminary web usage results demonstrate the potential feasibility of such a program. PRACTICE IMPLICATIONS: Our study demonstrates survivors' openness to the use of a web-based communication skills training module and outlines a systematic iterative user and interface program development and testing process, which can serve as a prototype for others considering such an approach.

The NCI's Cancer Information Service's Research Continuum Framework: integrating research into cancer education practice (1999-2004).

Between 1999 and 2004, the National Cancer Institute's (NCI) Cancer Information Service's (CIS) Research Initiative supported over 50 research projects representing a broad range of activities from research capacity building, development, implementation to diffusion and dissemination. These research activities are represented in the CIS Research Continuum Framework which the authors describe through a number of short case studies. Based on the experiences and successes of the CIS, other professionals working in the cancer field might consider establishing collaborative relationships across the research continuum and participating in research that has relevancy to advances in cancer education.

Future directions for the cancer information service and cancer education.

From its beginnings in the 1970s, the National Cancer Institute's (NCI's) Cancer Information Service (CIS) has developed as a vibrant program for providing health care professionals and the public with relevant cancer-related information through telephone, mail, and online communication. The CIS has become an important contributor to health communication and health education research. Through its network of community partnerships, it has disseminated relevant cancer information and health promotion programs to vulnerable and hard-to-reach populations. It has become a model for the development of health information and education programs around the world. However, the CIS is still growing; it is continually innovating and refining its programs and services. This concluding article examines the potential for increasing CIS contributions to cancer education and cancer control in the future.

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.

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

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.

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

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 randomized controlled trial of multiple tailored messages for smoking cessation among callers to the cancer information service.

Self-help materials computer-tailored to the specific needs of smokers have shown promise as a high-reach, low-cost intervention for smoking cessation. Adding tailored cessation materials to telephone-based cessation counseling may be a way of generating greater efficacy in promoting and maintaining cessation. The objective of this study is to assess the efficacy of adding different types of behavioral smoking cessation materials to brief telephone-based cessation counseling.A total of 1,978 smokers calling the National Cancer Institute's (NCI's) Cancer Information Service (CIS) for help in quitting smoking initially received brief cognitive-behavioral cessation counseling from a CIS information specialist. Following a baseline interview administered by the information specialist, subjects were randomly assigned to one of four conditions, each delivered by U.S. mail: a single, untailored smoking cessation guide (SU); a single, tailored smoking cessation guide (ST); a series of four (multiple) printed materials tailored only to baseline data (MT); and a series of four (multiple) printed materials tailored to baseline as well as retailored using 5-month interim progress data (MRT). The primary outcome measure was 7-day point prevalence abstinence rates assessed using a computer-assisted telephone interview (CATI) at 12-month follow-up.At 12-month follow-up, using intent-to-treat, imputed, and per-protocol analyses, no differences were found among the four experimental conditions (linear trend), or when the ST, MT, and MRT groups were compared with the control (SU) group. Participants in the two multiple message group conditions combined (MT + MRT), however, had significantly higher abstinence rates than participants in the two single message group conditions combined (SU + ST). Moreover, among subjects who reported quitting at the 5-month follow-up, participants receiving the MRT materials reported higher abstinence rates at 12 months than the other three groups combined (SU + ST + MT). The results of this study support the effectiveness, over and above a single telecounseling interaction, of multiple tailored print material contacts on cessation. These effects, however may be due to tailoring, or the longitudinal nature of the two multiple tailored conditions, or both. The strongest evidence for tailoring occurred in the MRT condition for relapse prevention, suggesting that print materials tailored to interim progress may be especially effective in this context. The qualities of specific psychosocial and communication elements in tailored materials should receive attention in future research.

Multiple tailored messages are effective in increasing fruit and vegetable consumption among callers to the Cancer Information Service.

Results are reported from a large (n = 3,402) four-group randomized trial to increase fruit and vegetable consumption among callers to the National Cancer Institute's (NCI's) Cancer Information Service (CIS) using tailored print materials. Following a baseline telephone interview, which included a brief educational message (BEM), participants were assigned randomly within CIS offices to one of four groups: single untailored (SU) group-one untailored set of materials; single tailored (ST) group-one tailored booklet; multiple tailored (MT) group-four tailored materials; and multiple retailored (MRT) group-four tailored materials with retailoring based on new information obtained at 5 months follow-up. Follow-up telephone interviews were conducted at 5 (n = 2,233) and 12 months (n = 1,927) after baseline. The main outcome measure was self-reported fruit and vegetable consumption using a seven-item food frequency questionnaire. At 12 months follow-up, there was a significant linear trend across groups of 0.21 servings (p = 0.0002). Specific nested hypotheses then were tested and revealed significant mean serving differences between SU (5.07) vs. MT (5.64) (p = 0.002) and SU vs. MRT (5.71; p < 0.001). Although the mean for ST (5.40) was greater than that for SU (5.07), the difference was not statistically significant (p = 0.07), and no difference was found between MT vs. MRT (p = 0.69). A higher proportion of recipients of tailored materials reported reading all of the materials and believing that they were written especially for them. No differences by experimental condition were found for the perceived usefulness or motivational impact of the print materials. In this trial, MT print materials were more effective at increasing fruit and vegetable (FV) consumption than were SU materials. The intervention mechanisms responsible for this effect merit further research. Retailoring did not produce a significant difference when compared with longitudinal baseline tailoring.

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.

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.

Nutrition and physical activity during and after cancer treatment: an American Cancer Society guide for informed choices.

Cancer survivors are often highly motivated to seek information about food choices, physical activity, dietary supplement use, and complementary nutritional therapies to improve their treatment outcomes, quality of life, and survival. To address these concerns, the American Cancer Society (ACS) convened a group of experts in nutrition, physical activity, and cancer to evaluate the scientific evidence and best clinical practices related to optimal nutrition and physical activity after the diagnosis of cancer. This report summarizes their findings and is intended to present health care providers with the best possible information on which to help cancer survivors and their families make informed choices related to nutrition and physical activity. The report discusses nutrition and physical activity issues during the phases of cancer treatment and recovery, living after recovery from treatment, and living with advanced cancer; selected nutritional and physical activity issues such as body weight, food choices, and complementary and alternative nutritional options; and selected issues related to breast, colorectal, lung, prostate, head and neck, and upper gastrointestinal cancers. In addition, handouts containing commonly asked questions and answers and a resource list are provided for survivors and families. Tables that grade the scientific evidence for benefit versus harm related to nutrition and physical activity for breast, colorectal, lung, and prostate cancers are also included for this growing body of knowledge to provide guidance for informed decision making and to identify areas for future research.