Quality of life (QOL) is a dynamic concept that means different things to different people, both in the general public and within the research community. Because of this, a common definition of QOL has been hard to achieve. This article reviews cross-cultural issues related to QOL research in spinal cord injury (SCI). Many factors influence QOL for persons with SCI, including observable and objective indicators and subjective self-report ones. The World Health Organization’s International Classification of Function, Disability and Health is used in this article as a framework to better understand how these factors may influence QOL. A number of important steps are summarized with respect to measurement issues in QOL. A comparison between data from 2 countries (United States and Brazil) using the International SCI QOL Basic Data Set shows similarities in scores and good reliability in the Brazilian sample. Substantial, significant correlations were observed among the SCI QOL Basic Data Set items and the WHOQOL-BREF within the US sample. The article ends with a set of recommendations for the development of cross-cultural measures of QOL for use in the SCI population.
National Institute on Disability and Rehabilitation Research. National Institute on Disability and Rehabilitation Research; Notice of Proposed Long-Range Plan for Fiscal Years 1999-2004. In: Federal Register. Vol 63. Washington DC: United States Government Printing Office; 1998: 57190–57219.
,
National Institute on Disability and Rehabilitation Research. National Institute on Disability and Rehabilitation Research; Notice of Proposed Long-Range Plan for Fiscal Years 1999-2004
, Federal Register.
, vol. 63
(pg. 57190
-57219
) Committee on Disability in America. Definition and monitoring of disability. In: Field MJ, Jette AM, eds. The Future of Disability in America. Washington, DC: The National Academies Press; 2007:35–64.
,
Committee on Disability in America. Definition and monitoring of disability
, The Future of Disability in America.
(pg. 35
-64
) WHOQOL Group. Study protocol for the World Health Organization project to develop a Quality of Life assessment instrument (WHOQOL). Qual Life Res. 1993;2(2):153–159.
,
Study protocol for the World Health Organization project to develop a Quality of Life assessment instrument (WHOQOL)
, Qual Life Res.
, vol. 2
(pg. 153
-159
) WHOQOL Group. The World Health Organization Quality of Life assessment WHOQOL: Development and general psychometric properties. Soc Sci Med. 1998;46(12):1569–1585.
,
The World Health Organization Quality of Life assessment WHOQOL: Development and general psychometric properties
, Soc Sci Med.
, vol. 46
(pg. 1569
-1585
) Diener E, Suh E, Smith H, Shao L. National differences in reported subjective well-being: Why do they occur? Soc Indicators Res. 1995;34(1):7–32.
,
National differences in reported subjective well-being: Why do they occur?
, Soc Indicators Res.
, vol. 34
(pg. 7
-32
) Post M, Noreau L. Quality of life after spinal cord injury. J Neurologic Phys Ther. 2005;29(3):139–146.
,
Quality of life after spinal cord injury
, J Neurologic Phys Ther.
, vol. 29
(pg. 139
-146
) Dijkers M. Quality of life after spinal cord injury: A meta analysis of the effects of disablement components. Spinal Cord. 1997;35(12):829–840.
,
Quality of life after spinal cord injury: A meta analysis of the effects of disablement components
, Spinal Cord.
, vol. 35
(pg. 829
-840
) Tate DG, Kalpakjian CZ, Forchheimer MB. Quality of life issues in individuals with spinal cord injury. Arch Phys Med Rehabil. 2002;83(Suppl 2):s18–s25.
,
Quality of life issues in individuals with spinal cord injury
, Arch Phys Med Rehabil.
, vol. 83
(pg. s18
-s25
) Bombardier CH, Fann JR, Wilson CS, et al. A randomized controlled trial of venlafaxine XR for major depressive disorder after spinal cord injury: Methods and lessons learned [published online ahead of print November 2, 2013]. J Spinal Cord Med.
,
A randomized controlled trial of venlafaxine XR for major depressive disorder after spinal cord injury: Methods and lessons learned [published online ahead of print November 2, 2013]
, J Spinal Cord Med.
Crewe NM. A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury. Rehab Couns Bull. 2000;43(3):122–133.
,
A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury
, Rehab Couns Bull.
, vol. 43
(pg. 122
-133
) Tate DG, Duggan CH. Stress and Coping Over the Life Course: A Perspective on Women with Spinal Cord Injury. Final Report to the National Institute on Disability and Rehabilitation Research. Ann Arbor, MI: University of Michigan Health System; March 2006.
,
Stress and Coping Over the Life Course: A Perspective on Women with Spinal Cord Injury. Final Report to the National Institute on Disability and Rehabilitation Research.
Duggan CH, Dijkers M. Quality of life after spinal cord injury: A qualitative study. Rehabil Psychol. 2001;46(1):3–27.
,
Quality of life after spinal cord injury: A qualitative study
, Rehabil Psychol.
, vol. 46
(pg. 3
-27
) Duggan CH, Dijkers M. Quality of life—Peaks and valleys: A qualitative analysis of the narratives of persons with spinal cord injuries. Can J Rehabil. 1999;12(3):179–189.
,
Quality of life—Peaks and valleys: A qualitative analysis of the narratives of persons with spinal cord injuries
, Can J Rehabil.
, vol. 12
(pg. 179
-189
) Ustun B, Chatterji S, Kostanjsek N. Comments from WHO for the Journal of Rehabilitation Medicine Special Supplement on ICF Core Sets. J Rehabil Med. 2004;44(Suppl):7–8.
,
Comments from WHO for the Journal of Rehabilitation Medicine Special Supplement on ICF Core Sets
, J Rehabil Med.
, vol. 44
(pg. 7
-8
) Hofstede G. The cultural relativity of the quality of life concept. Acad Manage Rev. 1984;9(3):389–398.
,
The cultural relativity of the quality of life concept
, Acad Manage Rev.
, vol. 9
(pg. 389
-398
) Meade MA, Lewis A, Jackson MN, Hess DW. Race, employment, and spinal cord injury. Arch Phys Med Rehabil. 2004;85(11):1782–1792.
,
Race, employment, and spinal cord injury
, Arch Phys Med Rehabil.
, vol. 85
(pg. 1782
-1792
) Krause JS, Broderick L. Outcomes after spinal cord injury: Comparisons as a function of gender and race and ethnicity. Arch Phys Med Rehabil. 2004;85(3):355–362.
,
Outcomes after spinal cord injury: Comparisons as a function of gender and race and ethnicity
, Arch Phys Med Rehabil.
, vol. 85
(pg. 355
-362
) Albrecht GL, Devlieger PJ. The disability paradox: High quality of life against all odds. Soc Sci Med. 1999;48(8):977–988
,
The disability paradox: High quality of life against all odds
, Soc Sci Med.
, vol. 48
(pg. 977
-988
) Noreau L, Fougeyrollas P, Boschen KA. Perceived influence of the environment on social participation among individuals with spinal cord injury. Top Spinal Cord Inj Rehabil. 2002;7(3):56–72.
,
Perceived influence of the environment on social participation among individuals with spinal cord injury
, Top Spinal Cord Inj Rehabil.
, vol. 7
(pg. 56
-72
) Levasseur M, Desrosiers J, Noreau L. Is social participation associated with quality of life of older adults with physical disabilities? Disabil Rehabil. 2004;26(20):1206–1213.
,
Is social participation associated with quality of life of older adults with physical disabilities?
, Disabil Rehabil.
, vol. 26
(pg. 1206
-1213
) Hays RD, Hahn H, Marshall G. Use of the SF-36 and other health-related quality of life measures to assess persons with disabilities. Arch Phys Med Rehab. 2002;83(Suppl 2):S4–S9.
,
Use of the SF-36 and other health-related quality of life measures to assess persons with disabilities
, Arch Phys Med Rehab.
, vol. 83
(pg. S4
-S9
) Hahn H. Attitudes toward disabilities: A research note on activists with disabilities. J Disabil Policy Stud. 2001;12(1):40–46.
,
Attitudes toward disabilities: A research note on activists with disabilities
, J Disabil Policy Stud.
, vol. 12
(pg. 40
-46
) Forchheimer M, McAweeney M, Tate DG. Use of the SF-36 among persons with spinal cord injury. Am J Phys Med Rehabil. 2004;83(5):390–395.
,
Use of the SF-36 among persons with spinal cord injury
, Am J Phys Med Rehabil.
, vol. 83
(pg. 390
-395
) Miringoff ML, Miringoff ML. The Social Health of the Nation: How America Is Really Doing. New York: Oxford University Press; 1999.
,
The Social Health of the Nation: How America Is Really Doing.
Veenhoven R. Happy life-expectancy. Soc Indicators Res. 1996;39(1):1–58.
,
Happy life-expectancy
, Soc Indicators Res.
, vol. 39
(pg. 1
-58
) Diener E, Oishi S. Money and happiness: Income and subjective well-being across nations. In: Diener E, Suh EM, eds. Culture and Subjective Well-being. Cambridge, MA: The MIT Press; 2000:185–218.
,
Money and happiness: Income and subjective well-being across nations
, Culture and Subjective Well-being.
(pg. 185
-218
) Helliwell JF, Wang S. The state of world happiness. In: Sachs JD, Layard R, Helliwell JF, eds. World Happiness Report. New York: The Earth Institute, Columbia University; 2012:10–57.
,
The state of world happiness
, World Happiness Report.
(pg. 10
-57
) Albright KJ, Forchheimer M, Tate DG. Spirituality and Rehabilitation. In: Frank RG, Rosenthal M, Caplan B, eds. Handbook of Rehabilitation Psychology. 2nd ed. Washington, DC: American Psychological Association; 2009:365–370.
,
Spirituality and Rehabilitation
, Handbook of Rehabilitation Psychology.
(pg. 365
-370
) Matheis EN, Tulsky DS, Matheis RJ. The relation between spirituality and quality of life among individuals with spinal cord injury. Rehabil Psychol. 2006;51(3):265–271.
,
The relation between spirituality and quality of life among individuals with spinal cord injury
, Rehabil Psychol.
, vol. 51
(pg. 265
-271
) Ide M, Fugl-Meyer AR. Life satisfaction in persons with spinal cord injury: A comparative investigation between Sweden and Japan. Spinal Cord. 2001;39(7):387–393.
,
Life satisfaction in persons with spinal cord injury: A comparative investigation between Sweden and Japan
, Spinal Cord.
, vol. 39
(pg. 387
-393
) Hampton NZ, Marshall A. Culture, gender, self-efficacy, and life satisfaction: A comparison between Americans and Chinese people with spinal cord injuries. J Rehabil. 2000;66(3):21–28.
,
Culture, gender, self-efficacy, and life satisfaction: A comparison between Americans and Chinese people with spinal cord injuries
, J Rehabil.
, vol. 66
(pg. 21
-28
) Kennedy P, Lude P, Taylor N. Quality of life, social participation, appraisals and coping post spinal cord injury: A review of four community samples. Spinal Cord. 2006;44(2):95–105.
,
Quality of life, social participation, appraisals and coping post spinal cord injury: A review of four community samples
, Spinal Cord.
, vol. 44
(pg. 95
-105
) Kreuter M, Siosteen A, Erkholm B, Bystrom U, Brown DJ. Health and quality of life of persons with spinal cord lesion in Australia and Sweden. Spinal Cord. 2005;43(2):123–129.
,
Health and quality of life of persons with spinal cord lesion in Australia and Sweden
, Spinal Cord.
, vol. 43
(pg. 123
-129
) Evans RL, Hendricks RD, Connis RT, Haselkorn JK, Ries KR, Mennet TE. Quality of life after spinal cord injury: A literature critique and meta-analysis (1983–1992). J Am Paraplegia Soc. 1994;17(2):60–66.
,
Quality of life after spinal cord injury: A literature critique and meta-analysis (1983–1992)
, J Am Paraplegia Soc.
, vol. 17
(pg. 60
-66
) Wilson JR, Hashimoto RE, Dettori JR, Fehlings MG. Spinal cord injury and quality of life: A systematic review of outcome measures. Evid Based Spine Care J. 2011;2(1):37–44.
,
Spinal cord injury and quality of life: A systematic review of outcome measures
, Evid Based Spine Care J.
, vol. 2
(pg. 37
-44
) Whiteneck GG. The 44th annual John Stanley Coulter Lecture. Measuring what matters: Key rehabilitation outcomes. Arch Phys Med Rehabil. 1994;75(10):1073–1076.
,
The 44th annual John Stanley Coulter Lecture. Measuring what matters: Key rehabilitation outcomes
, Arch Phys Med Rehabil.
, vol. 75
(pg. 1073
-1076
) Hallin P, Sullivan M, Kreuter M. Spinal cord injury and quality of life measures: A review of instrument psychometric quality. Spinal Cord. 2000;38(9): 509–523.
,
Spinal cord injury and quality of life measures: A review of instrument psychometric quality
, Spinal Cord.
, vol. 38
(pg. 509
-523
) May LA, Warren S. Measuring quality of life of persons with spinal cord injury: External and structural validity. Spinal Cord. 2002;40(7):341–350.
,
Measuring quality of life of persons with spinal cord injury: External and structural validity
, Spinal Cord.
, vol. 40
(pg. 341
-350
) Dijkers MP. Individualization in quality of life measurement: Instruments and approaches. Arch Phys Med Rehabil. 2003;84(4 Suppl 2):S3–S14.
,
Individualization in quality of life measurement: Instruments and approaches
, Arch Phys Med Rehabil.
, vol. 84
(pg. S3
-S14
) Hill MR, Noonan VK, Sakakibara BM, Miller WC, SCIRE Research Team. Quality of life instruments and definitions in individuals with spinal cord injury: A systematic review. Spinal Cord. 2010;48:438–450.
,
SCIRE Research Team. Quality of life instruments and definitions in individuals with spinal cord injury: A systematic review
, Spinal Cord.
, vol. 48
(pg. 438
-450
) Schwartz CE, Andresen EM, Nosek MA, Krahn GL. Response shift theory: Important implications for measuring quality of life in people with disability. Arch Phys Med Rehabil. 2007;88(4):529–536.
,
Response shift theory: Important implications for measuring quality of life in people with disability
, Arch Phys Med Rehabil.
, vol. 88
(pg. 529
-536
) Heinemann AW, Tulsky D, Dijkers M, et al. Issues in participation measurement in research and clinical applications. Arch Phys Med Rehabil. 2010;91(9):S72–S76.
,
Issues in participation measurement in research and clinical applications
, Arch Phys Med Rehabil.
, vol. 91
(pg. S72
-S76
) Wild D, Grove A, Martin M, et al. Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: Report of the ISPOR Task Force for Translation and Cultural Adaptation. Value Health. 2005;8(2):94–104.
,
Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: Report of the ISPOR Task Force for Translation and Cultural Adaptation
, Value Health.
, vol. 8
(pg. 94
-104
) Ware Jr JE. Conceptualization and measurement of health-related quality of life: Comments on an evolving field. Arch Phys Med Rehabil. 2003;84(Suppl 2):S43–S51.
,
Conceptualization and measurement of health-related quality of life: Comments on an evolving field
, Arch Phys Med Rehabil.
, vol. 84
(pg. S43
-S51
) Tulsky DS, Kisala PA, Victorson D, et al. Developing a contemporary patient-reported outcomes measure for spinal cord injury. Arch Phys Med Rehabil. 2011;92(10 Suppl):S44–S51.
,
Developing a contemporary patient-reported outcomes measure for spinal cord injury
, Arch Phys Med Rehabil.
, vol. 92
(pg. S44
-S51
) Tulsky DS, Carlozzi NE, Cella D. Advances in outcomes measurement in rehabilitation medicine: Current initiatives from the National Institutes of Health and the National Institute on Disability and Rehabilitation Research. Arch Phys Med Rehabil. 2011;92(10 Suppl):S1–S6.
,
Advances in outcomes measurement in rehabilitation medicine: Current initiatives from the National Institutes of Health and the National Institute on Disability and Rehabilitation Research
, Arch Phys Med Rehabil.
, vol. 92
(pg. S1
-S6
) Ware JE, Gandek B, Iqola Project. Overview of the SF-36 Health Survey and the International Quality of Life Assessment (IQOLA) project. J Clin Epidemiol. 1998;51(11):903–912.
,
Iqola Project. Overview of the SF-36 Health Survey and the International Quality of Life Assessment (IQOLA) project
, J Clin Epidemiol.
, vol. 51
(pg. 903
-912
) WHOQOL Group. Assessment of Quality of Life in Health Care. Geneva: World Health Organization; 1991.
,
WHOQOL Group.
, Assessment of Quality of Life in Health Care.
Jang Y, Hsieh C-L, Wang Y-H, Wu Y-H. A validity study of the WHOQOL-BREF assessment in persons with traumatic spinal cord injury. Arch Phys Med Rehabil. 2004;85(11):1890–1895.
,
A validity study of the WHOQOL-BREF assessment in persons with traumatic spinal cord injury
, Arch Phys Med Rehabil.
, vol. 85
(pg. 1890
-1895
) Barker RN, Kendall MD, Amsters DI, Pershouse KJ, Haines TP, Kuipers P. The relationship between quality of life and disability across the lifespan for people with spinal cord injury. Spinal Cord. 2008;47(2):149–155.
,
The relationship between quality of life and disability across the lifespan for people with spinal cord injury
, Spinal Cord.
, vol. 47
(pg. 149
-155
) Geyh S, Fellinghauer BAG, Kirchberger I, Post MWM. Cross-cultural validity of four quality of life scales in persons with spinal cord injury. Health Qual Life Outcomes. 2010;8:94–109.
,
Cross-cultural validity of four quality of life scales in persons with spinal cord injury
, Health Qual Life Outcomes.
, vol. 8
(pg. 94
-109
) Geyh S, Ballert C, Sinnott A, et al. Quality of life after spinal cord injury: A comparison across six countries. Spinal Cord. 2013;51(4):322–326.
,
Quality of life after spinal cord injury: A comparison across six countries
, Spinal Cord.
, vol. 51
(pg. 322
-326
) Harper A, Power M, WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med. 1998;28(3):551–558.
,
Development of the World Health Organization WHOQOL-BREF quality of life assessment
, Psychol Med.
, vol. 28
(pg. 551
-558
) Charlifue S, Post MW, Biering-Sorensen F, et al. International Spinal Cord Injury Quality of Life Basic Data Set. Spinal Cord. 2012;50:672–675.
,
International Spinal Cord Injury Quality of Life Basic Data Set
, Spinal Cord.
, vol. 50
(pg. 672
-675
) Biering-Sorensen F, Alexander MS, Burns S, et al. Recommendations for translation and reliability testing of international spinal cord injury data sets. Spinal Cord. 2011;49(3):357–360.
,
Recommendations for translation and reliability testing of international spinal cord injury data sets
, Spinal Cord.
, vol. 49
(pg. 357
-360
) Castineira CP, Oyakawa A, Greve J, et al. Reliability of the Portuguese version of the International Quality of Life Spinal Cord Injury Dataset. Poster presented at the 2013 International Spinal Cord Society Meeting; October 27–30, 2013; Istanbul, Turkey.
,
Reliability of the Portuguese version of the International Quality of Life Spinal Cord Injury Dataset
Diener E, Suh EM. National differences in subjective well-being. In: Kahneman D, Diener E, Schwarz N, eds. Well-being: The Foundations of Hedonic Psychology. New York: Russell Sage Foundation; 1999:434–450.
,
National differences in subjective well-being
, Well-being: The Foundations of Hedonic Psychology.
(pg. 434
-450
) Post M. Bernie Brucker Award Talk: Needs and opportunities for cross cultural quality of life studies in rehabilitation medicine. Paper presented at: Division 22 Rehabilitation Annual Meeting 2013; Jacksonville, FL.
,
Bernie Brucker Award Talk: Needs and opportunities for cross cultural quality of life studies in rehabilitation medicine
National Institute of Neurological Disorders and Stroke Common Data Elements: Hamonizing information. Streamlining research. 2014. http://www.commondataelements.ninds.nih.gov/SCI.aspx#tab=Data_Standards. Accessed May 1, 2014. http://www.commondataelements.ninds.nih.gov/SCI.aspx#tab=Data_Standards.
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