Elizabeth A. Hahn, Ph.D. - US grants

DESCRIPTION (provided by applicant): Background: Low literacy is associated with health disparities in access to health information, understanding of illness / treatment, health status, understanding and use of preventive services, and hospitalizations. Better understanding of patients' health literacy would allow for targeted interventions to reduce identified disparities. However, due to assessment burden, scoring imprecision, and inadequate English and Spanish language equivalence, available health literacy measures are not optimal for use in clinical practice or research. Aims: The aims of this application are 1) to develop English and Spanish language item banks for measuring reading-related health literacy skills; 2) to evaluate the feasibility, validity and acceptability of computer-based methods for comprehensive assessment of health literacy; 3) to develop and pilot computerized adaptive testing (CAT) of health literacy in clinical settings; and 4) to use a theory-driven framework to evaluate the associations between health literacy, patient characteristics, enabling resources, needs, health behaviors related to prevention of cardiovascular disease and cancer, and health status. Methods: State-of-the-science analytical methods will be used to develop sets of health literacy questions ("item banks") to support brief, targeted assessment using CAT. A validated bilingual multimedia "Talking Touchscreen" will be adapted to administer CAT to measure health literacy in English and Spanish primary care patients. A cross-sectional study will use this tool to evaluate the associations between patient characteristics, behaviors, outcomes and health literacy. Significance: This project will advance measurement technique through the development of a state-of-the-science computer adaptive tool that will allow precise and rapid measurement of health literacy, enhance ability to distinguish between language and literacy barriers, and increase understanding of associations between health literacy, health behaviors and health outcomes.

The Outcomes Measurement and Survey Core at the Robert H. Lurie Comprehensive Cancer Center is a new core and is focused on collaboration with Cancer Center members. The Core Facility members are defined as individuals performing research design, psychometrics and research operations support activities for cancer projects involving self-report data. The Core Facility consists of seven faculty-level social scientists and one staff-level research associate, with additional experienced and diverse staff available to support the activities of the Core. Most Core Facility members are member of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and have appointments in academic departments in the Feinberg School of Medicine. For this CCSG renewal, the specific aims of the Core are: 1. to provide consultative and analytic expertise on the best ways to measure outcomes and other information collected by self-report;2. to serve as a central resource for state-of-the-science instruments and measurement methods;and 3. to provide in-house research support services for the collection of outcomes and survey data. During the current usage reporting period 08/01/05 - 07/31/06, the Core worked on 35 separate projects for 28 distinct users, 25 of whom are Cancer Center members. The Core has usage in five different programs and it interacts with several relevant Cores, particularly the Biostatistics Core Facility. In the past 5 years the Outcomes Measurement and Survey Core participated in over 25 primary and subcontract federally-funded grant applications and Core members co-authored over 270 papers collectively. Over the next five years, the Core will continue to provide the Cancer Center with psychometric and survey research support in the areas of study design, data collection, and analysis and interpretation. State-of-the-science psychometric methods and novel multimedia tools will continue to be used. Collaboration with the Biostatistics, Bioinformatics and Clinical Research Office cores is expected to be strengthened due to [unreadable] shared collaborative interests and support of funded projects. The Outcomes Measurement and Survey [unreadable]-[unreadable][unreadable] -[unreadable] Core Facility will continue to respond to user requests for participation in grant applications, expand faculty [unreadable] and staff effort as needed to respond to the changing needs of funded grants, strive to maintain a revenue profile where funded grants represent the majority revenue sources relative to CCSG and institutional funds, and strive to maintain the professional level of faculty and staff through their attendance at and participation in outcomes measurement, survey research and statistical/psychometrics meetings and conferences.

? DESCRIPTION (provided by applicant): There is a critical need to develop better measures to assess adjustment to mechanical circulatory support (MCS) and health-related quality of life (HRQOL) because the impact of this therapy on patients' lives is profound. MCS devices are implanted surgically in patients with advanced heart failure and help the heart pump blood throughout the body. After discharge from the hospital, patients manage and troubleshoot their MCS devices while returning, as best they can, to usual activities of daily living (e.g., home and family responsibilities, work, and recreation). Benefits of MCS include longer survival (as compared to medical management of advanced heart failure), reduced heart failure symptoms, and improved physical function. Device-related complications (including bleeding, infection, device malfunction, and stroke) are risks of MCS implantation. As MCS technology evolves, survival is improving and the risk of adverse events is decreasing. However, future recommendations on the advisability of this expensive technology will depend not only on survivability and the risk of adverse events, but also on other outcomes, such as adjustment to MCS and HRQOL, which are less well defined. Importantly, currently available HRQOL instruments, which are generic or designed for heart failure or other illnesses, do not address many of the issues of concern and unique burdens of MCS on patients' daily lives. Currently, 50,000 to 100,ooo patients are diagnosed with advanced heart failure annually. Given the limited availability of heart transplantation, advanced heart failure patients may be offered MCS as a permanent implant (i.e., destination therapy). We propose to develop an MCS-specific measurement system, which we will refer to as Mechanical Circulatory Support: Adjustment and Quality of Life (MCS A-QOL). Our study design will focus on development and psychometric testing of our MCS A-QOL measurement system and evaluation of our conceptual model, followed by an exploration of usability of our measures (via a mobile app) by patients and providers. With development of a measurement system, our research will advance the field of MCS in patients with advanced heart failure. Use of our valid and responsive MCS A-QOL measures will contribute significantly to more clearly defining the benefits and risks of this evolving technology as compared with medical therapy or other strategies. Thus, survival will become more meaningful, as MCS A-QOL is incorporated into our understanding of risks and benefits.

ABSTRACT ? OUTCOMES MEASUREMENT AND SURVEY CORE The goal of the Outcomes Measurement and Survey Core (OMSC) is to provide consultation and support for projects that involve collecting, analyzing and interpreting self-report data, and to promote the understanding of measurement fundamentals and the improvement of survey research practice. By offering our expertise gained from years of experience with research on self-report data and community-based participatory research, this shared resource provides vital support services for clinical trials, observational studies and health services research projects. OMSC personnel have expertise in survey research methodology, Patient-Reported Outcomes (PRO) measurement, qualitative research methods, psychometrics, as well as study recruitment and retention for adults and children with diverse language, literacy, cognitive, functional and computer skills. The aims of the core are: 1) to provide consultative and practical expertise on self-report measurement, analysis, and interpretation in culturally diverse populations across the lifespan; 2) to serve as a central resource for state- of-the-science PRO instruments and survey methods; and 3) to provide assistance with recruitment of community participants for research studies. To accomplish these aims, OMSC members work closely with Lurie Cancer Center (LCC) investigators and interact with several other complementary Shared Resource Facilities, particularly the Quantitative Data Science Core. During the current usage reporting period, the OMSC worked with 43 different LCC members on 52 projects, across six different LCC research programs. Over the next funding period, the OMSC will continue to provide the Lurie Cancer Center with psychometric and survey research support in the areas of study design, data collection, analysis and interpretation, and will add support for recruitment and retention of community participants in cancer-relevant research.