Julie Kornfeld

Cancer Information-Seeking Experiences: The Implications of Hispanic Ethnicity and Spanish Language

Background. Strategies to support cancer information-seeking among Hispanics are needed. Methods. We analyzed data from the 2005 Health Information National Trends Survey (HINTS) to explore cancer information-seeking experiences among respondents according to ethnicity and language of interview. Results. Over 80% of Spanish-speaking Hispanics had never looked for cancer information. Compared to English-speaking respondents, Spanish-speaking Hispanics who sought cancer information indicated their search took a lot of effort (67%), was hard to understand (54%), and frustrating (42%). Spanish-speaking Hispanics noted minimal confidence in obtaining cancer information. Conclusions. Language and cultural differences must be considered in the design, implementation, and dissemination of cancer information.

Knowledge of HPV among United States Hispanic women: opportunities and challenges for cancer prevention.

In the United States, Hispanic women contribute disproportionately to cervical cancer incidence and mortality. This disparity, which primarily reflects lack of access to, and underutilization of, routine Pap smear screening may improve with increased availability of vaccines to prevent Human Papillomavirus (HPV) infection, the principal cause of cervical cancer. However, limited research has explored known determinants of HPV vaccine acceptability among Hispanic women. The current study examines two such determinants, HPV awareness and knowledge, using data from the 2007 Health Interview National Trends Survey (HINTS) and a cross-section of callers to the National Cancer Institutes (NCI) Cancer Information Service (CIS). Study data indicate that HPV awareness was high in both samples (69.5% and 63.8% had heard of the virus) but that knowledge of the virus and its association with cervical cancer varied between the two groups of women. The CIS sample, which was more impoverished and less acculturated than their HINTS counterparts, were less able to correctly identify that HPV causes cervical cancer (67.1% vs. 78.7%) and that it is a prevalent sexually transmitted infection (STI; 66.8% vs. 70.4%). Such findings imply that future research may benefit from disaggregating data collected with Hispanics to reflect important heterogeneity in this population subgroups ancestries, levels of income, educational attainment, and acculturation. Failing to do so may preclude opportunity to understand, as well as to attenuate, cancer disparity.

Health and cancer information seeking practices and preferences in Puerto Rico: creating an evidence base for cancer communication efforts.

Effective communication around cancer control requires understanding of population information seeking practices and their cancer-relevant risk behaviors, attitudes, and knowledge. The Health Information National Trends Survey (HINTS) developed by the U.S. National Cancer Institute (NCI) provides surveillance of the nations investment in cancer communication tracking the effects of the changing communication environment on cancer-related knowledge, attitudes, and behaviors. The University of Puerto Rico Comprehensive Cancer Center (UPRCCC), the Puerto Rico Behavioral Risk Factors Surveillance System (PRBRFSS), and the NCI implemented HINTS in Puerto Rico in 2009. In this article we describe the health and cancer information seeking behaviors, sources of information, trust in information sources, and experiences seeking information among the population of Puerto Rico. A total of 639 (603 complete and 36 partially complete) interviews were conducted. Nearly one-third of respondents had ever looked for information about health (32.9%) or about cancer (28.1%). The Internet was the most frequently reported source of information. College educated (odds ratio [OR] = 7.6) and females (OR = 2.8) were more likely to seek health information. Similarly, college educated (OR = 5.4) and females (OR = 2.0) were more likely to seek cancer information. Only 32.7% of respondents had ever accessed the Internet, and college educated were more likely to use it (OR = 12.2). Results provide insights into the health and cancer information seeking behaviors and experiences of the population in Puerto Rico and contribute to the evidence base for cancer control planning on the island.

One Size Does Not Fit All: Differences in HPV Knowledge between Haitian and African American Women

Background: Historically, all black persons, regardless of ancestry or country of origin, have been categorized as one group for cancer research and control efforts. This practice likely masks variability in exposure to determinants of disease, as well as in risk of cancer incidence and mortality. The current study examines potential differences in knowledge of human papilloma virus (HPV) between Haitian women living in Little Haiti, Miami, Florida, and a national sample of predominately African American women. Methods: Data for Haitian women were collected in 2007 as part of an ongoing community-based participatory research initiative in Little Haiti. For purposes of comparison, we used data from a largely African American subsample of the 2007 Health Information National Trends Survey (HINTS). These data sources used identical items to assess HPV knowledge, providing a unique opportunity to examine how this outcome may vary between two very distinct populations who are often grouped together for research and disease surveillance. Results: Relative to the HINTS sample, Haitian women were far less likely to have heard about HPV. Conclusions: Study data highlight important differences in Haitian and African American womens knowledge of HPV, a known determinant of cervical cancer risk. Such findings suggest that continuing to classify persons of similar phenotype but different cultural backgrounds and lifetime exposures as one group may preclude opportunity to understand, as well as attenuate, health disparity. Cancer Epidemiol Biomarkers Prev; 19(2); 366–70

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.

Evaluating the NCI's Cancer Information Service contact centers: Meeting and exceeding the expectations of the public

The National Cancer Institutes (NCIs) Cancer Information Service (CIS) provides cancer information to the public via 1-800-4-CANCER, a smoking quitline, and online. The 2003 National User Survey assessed satisfaction and outcomes among users contacting NCIs CIS by telephone and LiveHelp, an instant messaging service. Ninety-five percent of respondents were very satisfied/satisfied and 88% said their expectations had been met/exceeded. Users reported increased knowledge and self-efficacy. Most had discussed CIS information with a health professional or planned to do so. Of those who contacted CIS about smoking/tobacco use, 14% had quit and 35% cut back. The CIS provides a highly valued, effective service for patients and health professionals.

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 consider establishing collaborative relationships across the research continuum and participating in research that has relevancy to advances in cancer education.

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 CISs 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.

Health Information Seeking and Cancer Screening Adherence Rates

Effective screening tools are available for many of the top cancer killers in the USA. Searching for health information has previously been found to be associated with adhering to cancer screening guidelines, but Internet information seeking has not been examined separately. The current study examines the relationship between health and cancer Internet information seeking and adherence to cancer screening guidelines for breast, cervical, and colorectal cancer in a large nationally representative dataset. The current study was conducted using data from the Health Information National Trends Survey from 2003 and 2007. The study examined age-stratified models which correlated health and cancer information seeking with getting breast, cervical, and colorectal cancer screening on schedule, while controlling for several key variables. Internet health and cancer information seeking was positively associated with getting Pap screening on schedule, while information seeking from any sources was positively associated with getting colorectal screening on schedule. People who look for health or cancer information are more likely to get screened on schedule. Some groups of people, however, do not exhibit this relationship and, thus, may be more vulnerable to under-screening. These groups may benefit more from targeted interventions that attempt to engage people in their health care more actively.

Discussions of Cancer Clinical Trials with the National Cancer Institute’s Cancer Information Service

Clinical trials are essential for the development of new and effective treatments for cancer; however, participation rates are low. One reason for this is lack of knowledge about clinical trials. This study assessed how often clinical trials are discussed on calls to National Cancer Institutes Cancer Information Service (CIS). The authors quantitatively analyzed 283,094 calls to the CIS (1-800-4-CANCER) over 3 years (2006–2008). They calculated descriptive statistics and multivariate regressions to determine whether specific caller characteristics are associated with the presence of a clinical trials discussion. In addition, 2 focus groups were conducted with CIS information specialists (n = 12) to provide insight into the findings. The authors found that approximately 9.3% of CIS calls discussed clinical trials, with higher percentages for patients (12.5%) and family members (15.4%). Calls with Hispanics, Blacks, and Spanish speakers were less likely to include a conversation. For all cancers, patients who are in treatment or experiencing a recurrence were statistically significantly more likely to discuss clinical trials. CIS information specialists reported callers’ limited knowledge of clinical trials. The CIS has the unique ability to make a substantial effect in educating patients about clinical trials as an option in cancer treatment and care.