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Cancer Control Research

Abstract

Several national organizations, including the American Medical Association, the Agency for Health Care Policy and Research, the Food and Drug Administration, and the National Institutes of Health, have stressed the need for improved health care quality indicators. The patients perspective is central to the evaluation of quality outcomes. There is an abundance of patient self-report quality of life (QOL) questionnaires that can be completed serially and used to measure improving or declining perceived health. A major barrier to success in obtaining this QOL data is the fact that over 40 million Americans are functionally illiterate, and another 50 million have marginal literacy skills (Kirsch et al, 1993). Computerized assessment of QOL outcomes, utilizing multimedia technology, may provide a simple and efficient administration method that can be easily incorporated into a busy clinical setting, with minimal burden on staff and patients. Presentation of a question on a computer screen, accompanied by a recorded reading of the same question (Audiovisual Computer-based Testing; or AVCBT) can allow people with limited or even no reading ability to participate in the assessment. A standardized approach across all levels of literacy has the added advantage of reducing the stigma of low literacy. It can also prevent the introduction of systematic method artifacts which might be present due to the mixing of modes of questionnaire administration. This project builds upon successful past and current collaborations between researchers from Evanston Northwestern Healthcare and Cook County Hospital, a public hospital serving primarily indigent, urban ethnic minorities. Specifically, we propose to: 1) Develop and evaluate AVCBT of health status and preference-based QOL outcomes for low literate, English-speaking cancer patients; and 2) Test the equivalence of QOL assessment across low and high levels of literacy. We will first develop the AVCBT platform. Then we will compare one-time AVCBT QOL assessments of 200 cancer patients who test below the seventh-grade reading level ("low literacy group") to those of 200 cancer patients who test at or above the seventh grade reading level ("high literacy group"). Rasch measurement will be used to test the equivalence of health status measurement. We hypothesize that health status items will perform similarly across literacy levels, and that after controlling for group differences in performance status, disease stage, age, gender, ethnicity and socioeconomic status, there will be no significant difference between low versus high literacy patients in AVCBT- measured QOL (both health status and preference-based).