Linda Squiers

How We Design Feasibility Studies

Public health is moving toward the goal of implementing evidence-based interventions. To accomplish this, there is a need to select, adapt, and evaluate intervention studies. Such selection relies, in part, on making judgments about the feasibility of possible interventions and determining whether comprehensive and multilevel evaluations are justified. There exist few published standards and guides to aid these judgments. This article describes the diverse types of feasibility studies conducted in the field of cancer prevention, using a group of recently funded grants from the National Cancer Institute. The grants were submitted in response to a request for applications proposing research to identify feasible interventions for increasing the utilization of the Cancer Information Service among underserved populations.

Cancer-Related Information Seeking: Hints from the 2003 Health Information National Trends Survey (HINTS)

Few nationally representative surveys have assessed the cancer-related information seeking behavior of the American public. Data for our analysis were from the 2003 Health Information National Trends Survey (HINTS). The goals of our analysis were to characterize cancer information seekers (3,011) and nonseekers (3,348) in terms of sociodemographic, health care access, and health status variables, and to describe the nature of the cancer-related information being sought by information seekers. Significant and independent associations with seeking status were identified for gender, age, race, income, education, personal and family history of cancer, and having a usual source of health care. Information seekers were less likely to be male (OR = .51); aged 65 or older (OR = .40); Hispanic (OR = .60); to have a usual source of health care (OR = .70); and more likely to have incomes greater than

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

50,000 (OR = 1.50), some college (OR = 1.87) or a college degree (OR = 2.95), a prior cancer diagnosis (OR = 3.57), or a family history of cancer (OR = 2.17). Among cancer information seekers, the most frequently searched topic was cancer site-specific information (50.2%). Individuals who reported searching for cancer site-specific information were most frequently looking for information about breast cancer (23.8%), prostate cancer (11.5%), and skin cancer (11.3%). The HINTS survey provides a unique opportunity to explore the characteristics of information seekers and nonseekers and the content of information being sought by the public in a nationally representative sample; understanding gained from this effort provides generalizable and policy-relevant information about the American publics information needs.

Measuring Health Literacy: A Pilot Study of a New Skills-Based Instrument

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.

Implementing and evaluating shared decision making in oncology practice.

Although a number of instruments have been used to measure health literacy, a key limitation of the leading instruments is that they only measure reading ability or print literacy and, to a limited extent, numeracy. Consequently, the present study aimed to develop a new instrument to measure an individuals health literacy using a more comprehensive and skills-based approach. First, we identified a set of skills to demonstrate and tasks to perform. Next, we selected real-world health-related stimuli to enable measurement of these skills, and then we developed survey items. After a series of cognitive interviews, the survey items were revised, developed into a 38-item instrument, and pilot tested using a Web-based panel. Based on the psychometric properties, we removed items that did not perform as well, resulting in a 25-item instrument named the Health Literacy Skills Instrument. Based on confirmatory factor analysis, the items were grouped into five subscales representing prose, document, quantitative, oral, and Internet-based information seeking skills. Construct validity was supported by correlations with the short form of the Test of Functional Health Literacy in Adults and self-reported skills. The overall instrument demonstrated good internal consistency, with a Cronbachs alpha of 0.86. Additional analyses are planned, with the goal of creating a short form of the instrument.

The Health Literacy Skills Framework

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

Although there are a variety of models and frameworks that describe factors that are associated with health literacy skills, few illustrate the full pathway from development and moderators of health literacy skills, their application, and the outcomes that result all in one framework or model. This article introduces the Health Literacy Skills conceptual framework that does encompass this full continuum. To develop the framework, the authors reviewed and built upon existing health literacy frameworks. The Health Literacy Skills framework hypothesizes the relations between health literacy and health-related outcomes and depicts how health literacy functions at the level of the individual. The framework also reflects how factors external to the individual (e.g., family, setting, community, culture, and media) influence the constructs and relations represented in the framework. The framework is organized into 4 primary components: (a) factors that influence the development and use of health literacy skills; (b) health-related stimuli; (c) health literacy skills needed to comprehend the stimulus and perform the task; and (d) mediators between health literacy and health outcomes. Previous theoretical frameworks lend support to the proposed causal pathways it illustrates. The authors hope this conceptual framework can serve as a springboard for further discussion and advancement in operationalizing this complex construct. The Health Literacy Skills framework could also be used to guide the development of interventions to improve health literacy. Future research should be conducted to fully test the relations in the framework.

Prostate-specific Antigen Testing: Men's Responses to 2012 Recommendation Against Screening

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.

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

BACKGROUND The U.S. Preventive Services Task Force (USPSTF) released a draft recommendation advising against prostate-specific antigen (PSA) testing in October 2011, a major shift from previous years of recommending neither for or against PSA testing due to insufficient evidence. PURPOSE The purpose of this study was to assess mens awareness of the new recommendation, and their responses to it. METHODS This study comprised a web survey of men aged 40-74 years that was conducted through GfK Custom Research, LLCs Knowledge Panel® from November 22 to December 2, 2011. Chi-square tests and logistic regression analyses were conducted to identify factors associated with disagreement with and intention to follow the recommendation. Data were analyzed in March 2012. RESULTS The survey sample included 1089 men without a history of prostate cancer. After reviewing the recommendation, 62% agreed with the recommendation. Age and worry about getting prostate cancer were significantly related to disagreement with the recommendation. Only 13% of respondents were intenders (they planned to follow the U.S. Preventive Services Task Force recommendation and not get a prostate-specific antigen test in the future); 54% were non-intenders (they planned to not follow the U.S. Preventive Services Task Force recommendation and get a prostate-specific antigen test in the future; and 33% were undecided. Black race, higher income, having a PSA test in the past 2 years, and being somewhat/very worried about getting prostate cancer were all positively associated with being a non-intender. CONCLUSIONS Study findings suggest that consumers are favorably disposed to PSA testing, despite new evidence suggesting that the harms outweigh the benefits. The new USPSTF recommendation against PSA testing in all men may be met with resistance.

Communicating quantitative risks and benefits in promotional prescription drug labeling or print advertising

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.