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Literacy-Fair Measurement of Health-Related Quality of Life Will Facilitate Comparative Effectiveness Research in Spanish-Speaking Cancer Outpatients

Hahn, Elizabeth A. MA*; Du, Hongyan MS; Garcia, Sofia F. PhD*; Choi, Seung W. PhD*; Lai, Jin-Shei PhD*; Victorson, David PhD*; Cella, David PhD*

doi: 10.1097/MLR.0b013e3181d6f81b
Comparative Effectiveness

Background: Health-related quality of life (HRQL) assessment is frequently used in comparative effectiveness research, but low-literacy patients are often excluded. Appropriately translated and user-friendly HRQL measures are essential to ensure inclusion of low-literate and non-English-speaking patients in comparative effectiveness research.

Objectives: To compare HRQL responses across literacy levels in Spanish-speaking patients with cancer using a multimedia touch screen program.

Subjects: A total of 414 adult patients with cancer (213 with low literacy and 201 with high literacy).

Research Design: The touch screen system administered 3 questionnaires: The Functional Assessment of Cancer Therapy-General, the Short Form-36 Health Survey, and the Standard Gamble Utility Questionnaire. Measurement bias was evaluated using item response theory. Effects of literacy on HRQL were evaluated using regression models.

Results: Patients rated the touch screen easy to use and commented favorably on the multimedia approach. There was statistically significant item response theory measurement bias in 6 of 10 HRQL subscales; however, only 3 showed meaningful bias. Low-literacy patients had significantly lower mean scores on 3 of 4 Functional Assessment of Cancer Therapy-General subscales, before and after adjustment for patient characteristics. Low-literacy patients also had significantly lower mean scores on 5 of 6 Short Form-36 subscales; adjustment for patient characteristics attenuated or eliminated differences. Similar proportions of low- and high-literacy patients valued their current health as equivalent to perfect health.

Conclusions: This study demonstrates the feasibility of this multimedia touch screen program for low-literacy patients. The program will provide opportunities to evaluate the effectiveness of interventions in more diverse patient populations.

From the *Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL; and †Center on Outcomes, Research and Education, NorthShore University HealthSystem, Evanston, IL.

Supported by grant number #TURSG-02–069–01-PBP from the American Cancer Society.

Presented, in part, at the 2nd Annual Scientific Conference, Critical Issues in eHealth Research: Toward Quality Patient-Centered Care, Bethesda, MD, September 2006; and at the Symposium on Clinical and Comparative Effectiveness Research Methods: II, Rockville, MD, June 2009.

Reprints: Elizabeth A. Hahn, MA, Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, 710 N. Lake Shore Dr., Room 725, Chicago, IL 60611. E-mail:

© 2010 Lippincott Williams & Wilkins, Inc.