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

Elizabeth A. Hahn; David Cella; Deborah G. Dobrez; Barry D. Weiss; Hongyan Du; Jin Shei Lai; David Victorson; Sofia F. Garcia

doi:10.1007/s11136-006-9128-6

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

Elizabeth A. Hahn^*, David Cella, Deborah G. Dobrez, Barry D. Weiss, Hongyan Du, Jin Shei Lai, David Victorson, Sofia F. Garcia

^*Corresponding author for this work

Medical Social Sciences

Research output: Contribution to journal › Article › peer-review

31 Scopus citations

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.

Original language	English (US)
Pages (from-to)	495-507
Number of pages	13
Journal	Quality of Life Research
Volume	16
Issue number	3
DOIs	https://doi.org/10.1007/s11136-006-9128-6
State	Published - Apr 2007

Funding

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 Valenzue-la, 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.

Keywords

Literacy
Measurement
Outcomes
Quality of life
Underserved populations

ASJC Scopus subject areas

Public Health, Environmental and Occupational Health

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1007/s11136-006-9128-6

Cite this

@article{75e183208d27448cb356edfb0d5d51cc,

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

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.",

keywords = "Literacy, Measurement, Outcomes, Quality of life, Underserved populations",

author = "Hahn, {Elizabeth A.} and David Cella and Dobrez, {Deborah G.} and Weiss, {Barry D.} and Hongyan Du and Lai, {Jin Shei} and David Victorson and Garcia, {Sofia F.}",

note = "Funding Information: 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 Valenzue-la, 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.",

year = "2007",

month = apr,

doi = "10.1007/s11136-006-9128-6",

language = "English (US)",

volume = "16",

pages = "495--507",

journal = "Quality of Life Research",

issn = "0962-9343",

publisher = "Springer Netherlands",

number = "3",

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T1 - The impact of literacy on health-related quality of life measurement and outcomes in cancer outpatients

AU - Hahn, Elizabeth A.

AU - Cella, David

AU - Dobrez, Deborah G.

AU - Weiss, Barry D.

AU - Du, Hongyan

AU - Lai, Jin Shei

AU - Victorson, David

AU - Garcia, Sofia F.

N1 - Funding Information: 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 Valenzue-la, 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.

PY - 2007/4

Y1 - 2007/4

N2 - 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.

AB - 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.

KW - Literacy

KW - Measurement

KW - Outcomes

KW - Quality of life

KW - Underserved populations

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JO - Quality of Life Research

JF - Quality of Life Research

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ER -

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

Abstract

Funding

Keywords

ASJC Scopus subject areas

UN SDGs

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