Linda Fleisher

Cancer patient preferences for quality and length of life

Optimal patient decision making requires integration of patient values, goals, and preferences with information received from the physician. In the case of a life‐threatening illness such as cancer, the weights placed on quality of life (QOL) and length of life (LOL) represent critical values. The objective of the current study was to describe cancer patient values regarding QOL and LOL and explore associations with communication preferences.

Exploring the potential of web 2.0 to address health disparities

This article addresses use of the Internet and Web 2.0 technologies by racial and ethnic minorities and explores the potential opportunities and challenges in leveraging Web 2.0 approaches to impact health disparities. These opportunities and challenges include developing approaches and methods to (a) identify strategies for integrating social media into health promotion interventions focused on major health-related issues that affect members of medically underserved groups; (b) amalgamate techniques to leverage and connect social-media technologies to other evidence-informed online resources; (c) integrate health communication best practices, including addressing health literacy issues; (d) capitalize on social networking to enhance access and communication with health care providers; and (e) advance current efforts and ongoing expansion of research participation by individuals from underserved communities.

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 cancer information among Asian Americans.

The present study aimed to find the awareness level of cancer information among Asian Americans in the Delaware Valley region (Pennsylvania and South Jersey). A cross-sectional self-report survey was conducted with a sample of 1374 Asian Americans including Chinese, Korean, Vietnamese and Cambodians. The sample was collected by using a stratified-cluster proportional sampling technique. This paper assessed self-reported smoking behaviors, knowledge of smoking cessation methods, availability of health professionals advice in quitting smoking in the past 12 months, awareness of the National Cancer Institutes Cancer Information Service, knowledge of, and interest in participation in cancer clinical trials for identified Asian smokers. Overall, the level of awareness of cancer information services among the four subgroups was low. Among current and former smokers, only 31% had been advised by a health care professional to quit smoking. Forty-three percent used at least one smoking cessation method to quit in the past. The results also reveal an increased awareness level among those who had health insurance, higher education and were less likely to speak their native language. Significant differences on cancer awareness existed among the four ethnic groups as well. This study suggests urgent needs to educate Asian Americans about important cancer control issues and services and highlights the differences in baseline knowledge and attitudes among the various ethnic groups.

Colorectal Cancer Knowledge is Not Associated with Screening Compliance or Intention

Background. Increasing colorectal cancer (CRC) screening is a public health goal. We hypothesized that non-compliant, average risk women would demonstrate low levels of CRC knowledge and underestimate their CRC risk. Methods. Participants identified prior to routine gynecological visits completed a survey assessing demographics, CRC knowledge, risk perception, and screening intention. Results. The 318 participants demonstrated high levels of CRC knowledge. The majority estimated their risk incorrectly and had no intention of screening participation in the future. There were no consistent relationships between knowledge, risk perception, and screening intent. Conclusions. Knowledge alone is an inadequate stimulus of screening adherence.

Build It, and Will They Come? Unexpected Findings From a Study on a Web-Based Intervention to Improve Colorectal Cancer Screening

Given the extensive use of the Internet for health information, Web-based health promotion interventions are widely perceived as an effective communication channel. The authors conducted this study to determine use of a Web-based intervention intended to improve colorectal cancer screening in a population of women who are at average risk and noncompliant to current screening recommendations. The study was a randomized controlled trial designed to compare the effectiveness of colorectal cancer screening educational materials delivered using the Internet versus a printed format. In 3 years, 391 women seen for routine obstetrics/gynecology follow-up at 2 academic centers provided relevant survey information. Of these, 130 were randomized to the Web intervention. Participants received voluntary access to a password-protected, study-specific Web site that provided information about colorectal cancer and colorectal cancer screening options. The main outcome measures were self-reported and actual Web site use. Only 24.6% of women logged onto the Web site. Age was the only variable that differentiated users from nonusers (p = .03). In contrast, 16% of participants self-reported Web use. There was significant discordance between the veracity of actual and self-reported use (p = .004). Among true users, most (81%) logged on once only. These findings raise questions about how to increase use of important health communication interventions.

Randomized Trial of a Web-Based Intervention to Address Barriers to Clinical Trials

PURPOSE Lack of knowledge and negative attitudes have been identified as barriers to participation in clinical trials by patients with cancer. We developed Preparatory Education About Clinical Trials (PRE-ACT), a theory-guided, Web-based, interactive computer program, to deliver tailored video educational content to patients in an effort to overcome barriers to considering clinical trials as a treatment option. PATIENTS AND METHODS A prospective, randomized clinical trial compared PRE-ACT with a control condition that provided general clinical trials information produced by the National Cancer Institute (NCI) in text format. One thousand two hundred fifty-five patients with cancer were randomly allocated before their initial visit with an oncologist to PRE-ACT (n = 623) or control (n = 632). PRE-ACT had three main components: assessment of clinical trials knowledge and attitudinal barriers, values assessment with clarification back to patients, and provision of a video library tailored to address each patients barriers. Outcomes included knowledge and attitudes and preparation for decision making about clinical trials. RESULTS Both PRE-ACT and control interventions improved knowledge and attitudes (all P < .001) compared with baseline. Patients randomly allocated to PRE-ACT showed a significantly greater increase in knowledge (P < .001) and a significantly greater decrease in attitudinal barriers (P < .001) than did their control (text-only) counterparts. Participants in both arms significantly increased their preparedness to consider clinical trials (P < .001), and there was a trend favoring the PRE-ACT group (P < .09). PRE-ACT was also associated with greater patient satisfaction than was NCI text alone. CONCLUSION These data show that patient education before the first oncologist visit improves knowledge, attitudes, and preparation for decision making about clinical trials. Both text and tailored video were effective. The PRE-ACT interactive video program was more effective than NCI text in improving knowledge and reducing attitudinal barriers.

The relationships among knowledge, self-efficacy, preparedness, decisional conflict, and decisions to participate in a cancer clinical trial

Cancer clinical trials (CCTs) are important tools in the development of improved cancer therapies; yet, participation is low. Key psychosocial barriers exist that appear to impact a patients decision to participate. Little is known about the relationship among knowledge, self‐efficacy, preparation, decisional conflict, and patient decisions to take part in CCTs.

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.

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.