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The impact of literacy on health-related quality of life measurement and outcomes in cancer outpatients

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Abstract

Background

Limited evidence exists regarding the relationship between literacy and health-related quality of life (HRQL). Research is needed to develop measurement techniques for low literacy populations and to evaluate potential literacy-related measurement bias.

Methods

A Talking Touchscreen (TT) was developed for an HRQL study. Low (n = 214) and high literacy (n = 201) adult cancer outpatients participated, 70% of whom were from racial/ethnic minorities. Patients completed three questionnaires by TT: FACT-G (cancer-specific), SF-36 (generic health status), and a standard gamble utility questionnaire. Measurement bias was evaluated using item response theory (IRT). Effects of literacy on HRQL were evaluated using regression models.

Results

Most (97%) patients rated the TT easy to use. In IRT analysis, 6/27 FACT-G and 12/31 SF-36 items demonstrated literacy bias; this was relatively balanced (10 items ‘biased against’ low literacy; 8 ‘biased against’ high literacy). Mean literacy group differences were statistically and clinically non-significant for 9/14 HRQL outcomes. Adjustment for bias and/or covariates eliminated most remaining differences.

Conclusions

The TT is valid and useful for HRQL assessment in low literacy populations. There appears to be no systematic literacy bias in reporting HRQL, and low literacy is not an independent risk factor for poorer HRQL.

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Acknowledgements

This study was supported by grant number R01-HS10333 from the Agency for Healthcare Research and Quality, and the National Cancer Institute. Presented in part at the 9th Annual Conference of the International Society for Quality of Life Research (Orlando, FL, November 2002) and at the conference on Advances in Health Outcomes Measurement co-sponsored by the National Cancer Institute and the Drug Information Association (Bethesda, MD, June 2004). The authors thank Drs Ahmad Jajeh, Elizabeth Marcus, T. Mullai, Gail Shiomoto, Samuel Taylor and Mala Vohra for assisting in recruitment of their patients; Veronica Valenzuela, Patricia Diaz and Roger Dimitrov for recruiting and interviewing patients; and Dr Kathleen Yost for consultation on minimally important differences and statistical methods. We also thank all of the patients who participated in this study.

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Authors and Affiliations

  1. Center on Outcomes, Research and Education (CORE), Evanston Northwestern Healthcare, 1001 University Place, Suite 100, Evanston, IL, 60201, USA

    Elizabeth A. Hahn, David Cella, Hongyan Du, Jin-Shei Lai, David Victorson & Sofia F. Garcia

  2. Department of Preventive Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

    Elizabeth A. Hahn

  3. Department of Psychiatry and Behavioral Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

    David Cella & David Victorson

  4. School of Public Health, University of Illinois at Chicago, Chicago, IL, USA

    Deborah G. Dobrez

  5. Department of Family and Community Medicine, University of Arizona, Tucson, AZ, USA

    Barry D. Weiss

  6. Institute for Healthcare Studies, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

    Jin-Shei Lai

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  1. Elizabeth A. Hahn
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  2. David Cella
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Correspondence to Elizabeth A. Hahn.

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Hahn, E.A., Cella, D., Dobrez, D.G. et al. The impact of literacy on health-related quality of life measurement and outcomes in cancer outpatients. Qual Life Res 16, 495–507 (2007). https://doi.org/10.1007/s11136-006-9128-6

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  • DOI: https://doi.org/10.1007/s11136-006-9128-6

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