Literacy-fair measurement of health-related quality of life will facilitate comparative effectiveness research in Spanish-speaking cancer outpatients

Medical Care

Volumn 48, Issue 6 SUPPL., 2010, Pages

  Hahn, Elizabeth A ^a   Du, Hongyan ^b   Garcia, Sofia F ^a   Choi, Seung W ^a   Lai, Jin Shei ^a   Victorson, David ^a   Cella, David ^a  

^a NORTHWESTERN UNIVERSITY   (United States)

^b NORTHSHORE UNIVERSITY HEALTHSYSTEM   (United States)

Author keywords

Computer testing; Hispanic health; Item response theory; Literacy; Patient reported outcomes

Indexed keywords

ADULT; AGED; ARTICLE; CANCER PATIENT; CLINICAL TRIAL; COMPARATIVE EFFECTIVENESS; COMPARATIVE STUDY; CONTROLLED STUDY; EMOTIONALITY; FEMALE; FUNCTIONAL ASSESSMENT OF CANCER THERAPY GENERAL QUESTIONNAIRE; FUNCTIONAL STATUS; HUMAN; LANGUAGE ABILITY; MAJOR CLINICAL STUDY; MALE; MEASUREMENT ERROR; MENTAL HEALTH; OUTCOME ASSESSMENT; OUTPATIENT; PHYSICAL CAPACITY; PRIORITY JOURNAL; PSYCHOLOGICAL WELL BEING; QUALITY OF LIFE; READING; REGRESSION ANALYSIS; SHORT FORM 36; SOCIAL STATUS; SPAIN; SPEECH; STANDARD GAMBLE UTILITY QUESTIONNAIRE; SYSTEMS THEORY; COMPUTER INTERFACE; EDUCATIONAL STATUS; FEASIBILITY STUDY; HISPANIC; LANGUAGE; METHODOLOGY; MIDDLE AGED; NEOPLASM; QUESTIONNAIRE; SOCIOECONOMICS;

ADULT; AGED; COMPARATIVE EFFECTIVENESS RESEARCH; EDUCATIONAL STATUS; FEASIBILITY STUDIES; FEMALE; HISPANIC AMERICANS; HUMANS; LANGUAGE; MALE; MIDDLE AGED; NEOPLASMS; QUALITY OF LIFE; QUESTIONNAIRES; SOCIOECONOMIC FACTORS; USER-COMPUTER INTERFACE;

EID: 77953641091     PISSN: 00257079     EISSN: None     Source Type: Journal    
DOI: 10.1097/MLR.0b013e3181d6f81b     Document Type: Article

References (41)

1. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. Health literacy: report of the Council on Scientific Affairs. JAMA. 1999;281:552-557.
2. Hahn EA, Cella D. Health outcomes assessment in vulnerable populations: measurement challenges and recommendations. Arch Phys Med Rehabil. 2003;84:S35-S42.
3. Christian MC, Trimble EL. Increasing participation of physicians and patients from underrepresented racial and ethnic groups in National Cancer Institute-sponsored clinical trials. Cancer Epidemiol Biomarkers Prev. 2003;12:277-283.
4. Giuliano AR, Mokuau N, Hughes C, et al. Participation of minorities in cancer research: the influence of structural, cultural, and linguistic factors. Ann Epidemiol. 2000;10:S22-S34.
5. Institute of Medicine. Initial National Priorities for Comparative Effectiveness Research. Washington, DC: Institute of Medicine of the National Academies; 2009.
6. Gibbons RJ, Gardner TJ, Anderson JL, et al. The American Heart Association's principles for comparative effectiveness research: a policy statement from the American Heart Association. Circulation. 2009;119: 2955-2962.
7. DeWalt DA, Berkman ND, Sheridan S, et al. Literacy and health outcomes: a systematic review of the literature. J Gen Intern Med. 2004;19:1228-1239.
8. Baker DW, Parker RM, Williams MV, et al. The relationship of patient reading ability to self-reported health and use of health services. Am J Public Health. 1997;87:1027-1030.
9. Hahn EA, Cella D, Dobrez D, et al. The talking touchscreen: a new approach to outcomes assessment in low literacy. Psychooncology. 2004;13:86-95.
10. Hahn EA, Cella D, Dobrez DG, et al. The impact of literacy on health-related quality of life measurement and outcomes in cancer outpatients. Qual Life Res. 2007;16:495-507.
11. Hahn EA, Cella D, Dobrez DG, et al. Quality of life assessment for low literacy latinos: a new multimedia program for self-administration. J Oncol Manag. 2003;12:9-12.
12. Woodcock RW. Examiner's Manual: Woodcock Language Proficiency Battery-Revised. Allen, TX: DLM Publisher; 1991.
13. Woodcock RW. Examiner's Manual: Woodcock Language Proficiency Battery-Spanish Form. Chicago, IL: Riverside Publishing Company; 1981.
14. Wan GJ, Counte MA, Cella DF, et al. The impact of socio-cultural and clinical factors on health-related quality of life reports among Hispanic and African-American cancer patients. J Outcome Meas. 1999;3:200-215.
15. Marin G, Marin BV. Research with Hispanic Populations. Newbury Park, CA: Sage Publications; 1991.
16. Cella DF, Tulsky DS, Gray G, et al. The functional assessment of cancer therapy scale: development and validation of the general measure. J Clin Oncol. 1993;11:570-579.
17. Cella D, Hernandez L, Bonomi AE, et al. Spanish language translation and initial validation of the functional assessment of cancer therapy quality-of-life instrument. Med Care. 1998;36:1407-1418.
18. Ware JE Jr, Sherbourne CD. The Mos 36-item short-form health survey (Sf-36). I. Conceptual framework and item selection. Med Care. 1992; 30:473-483.
19. Alonso J, Prieto L, Anto JM. La version espanola del Sf-36 health survey (cuestionario de salud Sf-36): un instrumento para la medida de los resultados clinicos. Med Clin (Barc). 1995;104:771-776.
20. Von Neumann J, Morgenstern O. Theory of Games and Economic Behavior. Princeton, NJ: University Press; 1953.
21. Bonomi AE, Cella DF, Hahn EA, et al. Multilingual translation of the Functional Assessment of Cancer Therapy (FACT) quality of life measurement system. Qual Life Res. 1996;5:309-320.
22. Eremenco SL, Cella D, Arnold BJ. A comprehensive method for the translation and cross-cultural validation of health status questionnaires. Eval Health Prof. 2005;28:212-232.
23. Wright BD, Masters GN. Rating Scale Analysis: Rasch Measurement. Chicago, IL: MESA Press; 1985.
24. Holland PW, Wainer H. Differential Item Functioning. Hillsdale, NJ: Lawrence Earlbaum Associates; 1993.
25. van der Linden WJ, Hambleton RK. Handbook of Modern Item Response Theory. New York, NY: Springer-Verlag; 1997.
26. Hudgens S, Dineen K, Webster K, et al. Assessing statistically and clinically meaningful construct deficiency/saturation: recommended criteria for content coverage and item writing. Rasch Meas Trans. 2004; 17:954-955.
27. Shrout PE, Fleiss JL. Intraclass correlations: uses in assessing rater reliability. Psychol Bull. 1979;86:420-428.
28. Blackwelder WC. "Proving the null hypothesis" in clinical trials. Control Clin Trials. 1982;3:345-353.
29. Yost KJ, Eton DT. Combining distribution- and anchor-based approaches to determine minimally important differences: the facit experience. Eval Health Prof. 2005;28:172-191.
30. Ware JE, Snow KK, Kosinski M. Sf-36 Health Survey: Manual and Interpretation Guide. Lincoln, RI: QualityMetric Incorporated; 2000.
31. DeWalt DA, Pignone MP. Reading is fundamental: the relationship between literacy and health. Arch Intern Med. 2005;165:1943-1944.
32. Anderson S, Auquier A, Hauck WW, et al. Statistical Methods for Comparative Studies: Techniques for Bias Reduction. New York, NY: John Wiley & Sons; 1980.
33. Evans GW, Lepore SJ, Moore G, et al. Moderating and mediating processes in environment-behavior research. In: Moore G, Marans RW, eds. Advances in Environment, Behavior and Design: Toward the Integration of Theory, Methods, Research, and Utilization. New York, NY: Plenum Press; 1997:255-285.
34. Gazmararian JA, Baker DW, Williams MV, et al. Health literacy among Medicare enrollees in a managed care organization. JAMA. 1999;281: 545-551.
35. Du H, Valenzuela V, Diaz P, et al. Factors affecting enrollment in literacy studies for English- and Spanish-speaking cancer patients. Stat Med. 2008;27:4119-4131.
36. Baron RM, Kenny DA. The moderator-mediator variable distinction in social psychological research: conceptual, strategic, and statistical considerations. J Pers Soc Psychol. 1986;51:1173-1182.
37. Nielsen-Bohlman L, Panzer AM, Kindig DA; Committee on Health Literacy. Health Literacy: A Prescription to End Confusion. Washington, DC: The National Academies Press; 2004.
38. Hays RD, Morales LS, Reise SP. Item response theory and health outcomes measurement in the 21st century. Med Care. 2000;38:28-42.
39. Cella D, Chang CH. A discussion of Item Response Theory (IRT) and its applications in health status assessment. Med Care. 2000;38:1166-1172.
40. Berkman ND, DeWalt DA, Pignone MP, et al. Literacy and Health Outcomes. Evidence Report/Technology Assessment No. 87. Rockville, MD: Agency for Healthcare Research and Quality; 2004.
41. Wolf MS, Gazmararian JA, Baker DW. Health literacy and functional health status among older adults. Arch Intern Med. 2005;165:1946-1952.