Lauren McCormack

Health literacy: what is it?

The concept of health literacy evolved from a history of defining, redefining, and quantifying the functional literacy needs of the adult population. Along with these changes has come the recognition that sophisticated literacy skills are increasingly needed to function in society and that low literacy may have an effect on health and health care. We present a brief history of literacy in the United States, followed by a discussion of the origins and conceptualization of health literacy. Increased attention to this important issue suggests the need to review existing definitions of the term “health literacy,” because despite the growing interest in this field, one question that persists is, “What is health literacy?”

Measuring patient-centered communication in cancer care: A literature review and the development of a systematic approach

Patient-centered communication (PCC) is a critical element of patient-centered care, which the Institute of Medicine (Committee on Quality of Health Care in America, 2001) promulgates as essential to improving healthcare delivery. Consequently, the US National Cancer Institutes Strategic Plan for Leading the Nation (2006) calls for assessing the delivery of PCC in cancer care. However, no comprehensive measure of PCC exists, and stakeholders continue to embrace different conceptualizations and assumptions about how to measure it. Our approach was grounded in the PCC conceptual framework presented in a recent US National Cancer Institute monograph (Epstein & Street, 2007). In this study, we developed a comprehensive inventory of domains and subdomains for PCC by reviewing relevant literature and theories, interviewing a limited number of cancer patients, and consulting experts. The resulting measurement domains are organized under the six core functions specified in the PCC conceptual framework: exchanging information, fostering healing relationships, recognizing and responding to emotions, managing uncertainty, making decisions, and enabling patient self-management. These domains represent a promising platform for operationalizing the complicated PCC construct. Although this study focused specifically on cancer care, the PCC measurements are relevant to other clinical contexts and illnesses, given that patient-centered care is a goal across all healthcare. Finally, we discuss considerations for developing PCC measures for research, quality assessment, and surveillance purposes. United States Department of Health and Human Services, National Institutes of Health, National Cancer Institute (2006). The NCI Strategic Plan for Leading the Nation: To Eliminate the Suffering and Death Due to Cancer. NIH Publication No. 06-5773.

Health Literacy Measurement: An Inventory and Descriptive Summary of 51 Instruments

This article aimed to provide a descriptive review of the psychometric properties and conceptual dimensions of published health literacy measurement tools. PsycINFO and PubMed search from 1999 through 2013, review of the grey literature, and an environmental scan was conducted to identify health literacy measurement tools. For each tool, we evaluated the conceptual dimensions assessed, test parameters, and psychometric properties. Of the 51 tools identified, 26 measured general health literacy, and 15 were disease or content specific, and 10 aimed at specific populations. Most tools are performance based, require in-person administration, and are exclusively available in a pencil and paper testing mode. The tools assess 0 (proxy measure) to 9 of the 11 defined dimensions of health literacy. Reported administration times vary, from less than 1 to 60 minutes. Validation procedures for most of the tools are limited by inadequate power to ensure reliability across subgroups (i.e., race, age, ethnicity, and gender). The health literacy measurement tools currently available generally represent a narrow set of conceptual dimensions with limited modes of administration. Most of the tools lack information on key psychometric properties. Significant work is needed to establish important aspects of the construct, convergent, and predictive validity for many tools. As researchers develop new measures, inclusion of a full range of conceptual dimensions of health literacy, more representative sampling for testing, and additional modes of administration will allow a more refined and flexible approach to research in this field.

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

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.

Implementing and evaluating shared decision making in oncology practice.

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Time trends in late-stage diagnosis of cervical cancer. Differences by race/ethnicity and income.

Early detection and treatment of cervical cancer while it is still localized can greatly improve the probability of survival. Available evidence suggests, however, that women in more vulnerable population groups (eg, the poor, racial/ethnic minorities) are less likely to have their cancer diagnosed while it still is in this early stage.1-3 Analysis of tumor registry data found that only 9.4% of cervical cancers among white women were diagnosed at a late stage, for example, compared with 13.8% for black women.1 Mortality rates were consistent with this differential: 69.6% of white women

The Health Literacy Skills Framework

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.

The Impact of a CAHPS Report on Employee Knowledge, Beliefs, and Decisions

As comparative health plan performance data become more available, large employers are increasingly interested in knowing about the value in providing this information to employees to help them choose a plan. The purpose of this study is to empirically examine some of the key assumptions about how disseminating Consumer Assessment of Health Plans Study (CAHPS) report cards may influence employee knowledge, attitudes, and choice. The study used a quasi-experimental design, with preintervention and postintervention interviews with 958 employees. The findings indicate that exposure to the reports is related to having more information on how well the different plans perform on the CAHPS reporting categories. Furthermore, those who saw the report perceive the reporting categories to be more important in health plan choice than those who did not. Finally, the findings show that those who saw the report are more influenced by information sent by their employer than those who did not see the report.

The Robert Wood Johnson Foundation Diabetes Initiative: demonstration projects emphasizing self-management.

PURPOSE The purpose of the Diabetes Initiative of the Robert Wood Johnson Foundation is to demonstrate feasible and sustainable approaches to promoting diabetes self-management in primary care and community settings. METHODS The Diabetes Initiative of the Robert Wood Johnson Foundation includes 14 demonstration projects in primary care settings and in community-clinical partnerships. Projects serve predominantly indigent populations from varied cultural and linguistic backgrounds in urban, rural, and frontier settings around the United States. This report describes the Initiative, its ecological perspective on self-management, and implications for program development, sustainability, and dissemination. RESULTS Ecological perspectives stress varied levels of influence ranging from individuals to communities and policies. Based on this, the Initiative has identified key resources and supports for self-management (individualized assessment, collaborative goal setting, enhancing skills, follow-up and support, community resources, and continuity of quality clinical care). Lessons learned include the central roles of community health workers, integration of healthy coping and attention to negative emotion and depression in self-management, community partnerships, approaches to ongoing follow-up and support, organizational factors in sustaining programs, and the utility of a collaborative learning network for program development. Sustainability stresses organizational and policy supports for the program. Dissemination of lessons learned will stress collaboration among interested parties, stimulating consumer understanding and demand for self-management services as central to diabetes care. CONCLUSIONS The Diabetes Initiative demonstrates that effective self-management programs and supports can be implemented in real-world clinical and community settings, providing models of worthwhile, sustainable programs.

Similarities and Differences in Choosing Health Plans

Background. Increasingly, consumers have multiple health insurance options. New information is being developed to help consumers with these choices. Objectives. To study similarities and differences in how the publicly and privately insured choose health plans. To explore the effect of traditional enrollment materials and reports developed by the Consumer Assessment of Health Plans Study (CAHPS) on consumers’ perceptions and decision-making. Research Design. Using data from eight CAHPS demonstrations, we tested for significant differences across consumers with employer-sponsored insurance, Medicaid, and Medicare. Subjects. Approximately 10,000 consumers with employer-sponsored, Medicaid, and Medicare health plans. Measures. Perceptions of the health plan selection process, use of information sources, and reactions to and use of traditional enrollment materials and CAHPS reports. Results. Most consumers with all types of insurance thought that choosing a health plan was important and obtained information from multiple sources. Choosing a plan was more difficult for Medicare and Medicaid recipients than for the privately insured. When choosing a plan, Medicaid recipients cared most about convenience and access, whereas the privately insured emphasized providers and costs. The percentage of consumers who looked at and remembered the CAHPS report varied widely from 24% to 77%. In all but one of the demonstration sites, most consumers spent less than 30 minutes looking at the CAHPS report. Conclusions. Group sponsors and the developers of information interventions such as CAHPS may need to invest in developing and testing different reporting approaches for Medicare, Medicaid, and privately insured consumers.