Background: Quality of life (QOL) is an important outcome in spinal cord injury (SCI) rehabilitation, but it is unclear how to define and measure it. Objective: The aims of this article are to (a) show how the concepts of QOL and health-related quality of life (HRQOL) have evolved over time, (b) describe the various ways QOL has been defined and measured, and (c) provide recommendations on how to be as clear and consistent as possible in QOL research. Method: A narrative review of the QOL literature was performed. Results: Roots of the term “quality of life” in health care can be traced back to the definition of health by the World Health Organization in 1948. The use of the word “well-being” in this definition is probably a main factor in the continuing confusion about the conceptualization of QOL. Within the field of SCI rehabilitation, the Dijkers’s QOL model, distinguishing between utilities, achievements, and subjective evaluations and reactions, has been very influential and the basis for several reviews and databases. Nevertheless, literature shows that it is still difficult to consistently use the term “quality of life” and categorize QOL measures. Several aspects of QOL that are specific for individuals with SCI have been identified. Conclusions: Researchers should be as specific and clear as possible about the concept and operationalization of QOL in their studies. Readers should not take the term “quality of life” for granted, but should inspect the topic of the study from the actual measures used.

Devivo MJ. Epidemiology of traumatic spinal cord injury: Trends and future implications. Spinal Cord. 2012;50(5):365–372.
Epidemiology of traumatic spinal cord injury: Trends and future implications
Spinal Cord.
, vol. 
50
 (pg. 
365
-
372
)
Jensen MP, Truitt AR, Schomer KG, Yorkston KM, Baylor C, Molton IR. Frequency and age effects of secondary health conditions in individuals with spinal cord injury: A scoping review. Spinal Cord. 2013;51(12):882–892.
Frequency and age effects of secondary health conditions in individuals with spinal cord injury: A scoping review
Spinal Cord.
, vol. 
51
 (pg. 
882
-
892
)
Noreau L, Fougeyrollas P, Post M, Asano M. Participation after spinal cord injury: The evolution of conceptualization and measurement. J Neurol Phys Ther. 2005;29(3):147–156.
Participation after spinal cord injury: The evolution of conceptualization and measurement
J Neurol Phys Ther.
, vol. 
29
 (pg. 
147
-
156
)
Craig A, Tran Y, Middleton J. Psychological morbidity and spinal cord injury: A systematic review. Spinal Cord. 2009;47(2):108–114.
Psychological morbidity and spinal cord injury: A systematic review
Spinal Cord.
, vol. 
47
 (pg. 
108
-
114
)
Post MW, van Leeuwen CM. Psychosocial issues in spinal cord injury: A review. Spinal Cord. 2012;50(5):382–389.
Psychosocial issues in spinal cord injury: A review
Spinal Cord.
, vol. 
50
 (pg. 
382
-
389
)
Hall KM, Cohen ME, Wright J, Call M, Werner P. Characteristics of the Functional Independence Measure in traumatic spinal cord injury. Arch Phys Med Rehabil. 1999;80(11):1471–1476.
Characteristics of the Functional Independence Measure in traumatic spinal cord injury
Arch Phys Med Rehabil.
, vol. 
80
 (pg. 
1471
-
1476
)
Catz A, Itzkovich M. Spinal Cord Independence Measure: Comprehensive ability rating scale for the spinal cord lesion patient. J Rehabil Res Dev. 2007;44(1):65–68.
Spinal Cord Independence Measure: Comprehensive ability rating scale for the spinal cord lesion patient
J Rehabil Res Dev.
, vol. 
44
 (pg. 
65
-
68
)
Dijkers MP. Quality of life of individuals with spinal cord injury: A review of conceptualization, measurement, and research findings. J Rehabil Res Dev. 2005;42: 87–110.
Quality of life of individuals with spinal cord injury: A review of conceptualization, measurement, and research findings
J Rehabil Res Dev.
, vol. 
42
 (pg. 
87
-
110
)
Post M, Noreau L. Quality of life after spinal cord injury. J Neurol Phys Ther. 2005;29:139–146.
Quality of life after spinal cord injury
J Neurol Phys Ther.
, vol. 
29
 (pg. 
139
-
146
)
Fuhrer MJ. Subjectifying quality of life as a medical rehabilitation outcome. Disabil Rehabil. 2000;22:481–489.
Subjectifying quality of life as a medical rehabilitation outcome
Disabil Rehabil.
, vol. 
22
 (pg. 
481
-
489
)
Hill MR1, 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(6):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
)
Elkington JR. Medicine and quality of life. Ann Intern Med. 1966;64:711–714.
Medicine and quality of life
Ann Intern Med.
, vol. 
64
 (pg. 
711
-
714
)
World Health Organization: The constitution of the World Health Organization. WHO Chron. 1947;1:29.
World Health Organization: The constitution of the World Health Organization
WHO Chron.
, vol. 
1
 pg. 
29
 
Spitzer WO. State of science 1986: Quality of life and functional status as target variables for research. J Chronic Dis. 1987;40(6):465–471.
State of science 1986: Quality of life and functional status as target variables for research
J Chronic Dis.
, vol. 
40
 (pg. 
465
-
471
)
Karnofsky DA, Burchenal JH. Clinical evaluation of chemotherapeutic agents in cancer. In MacLeod CM, ed. Evaluation of Chemotherapeutic Agents. New York: Columbia University Press; 1949:191–205.
Clinical evaluation of chemotherapeutic agents in cancer.
Evaluation of Chemotherapeutic Agents.
(pg. 
191
-
205
)
Aaronson NK. Quantitative issues in health-related quality of life assessment. Health Policy. 1988;10(3):217–230.
Quantitative issues in health-related quality of life assessment
Health Policy.
, vol. 
10
 (pg. 
217
-
230
)
Spitzer WO, Dobson AJ, Hall J, et al. Measuring the quality of life of cancer patients. A concise QL-Index for use by physicians. J Chronic Dis. 1981;34:585–597.
Measuring the quality of life of cancer patients. A concise QL-Index for use by physicians
J Chronic Dis.
, vol. 
34
 (pg. 
585
-
597
)
Ware JE Standards for validating health measures: Definition and content. J Chronic Dis. 1987;40:473–480.
Standards for validating health measures: Definition and content
J Chronic Dis.
, vol. 
40
 (pg. 
473
-
480
)
Torrance GW. Utility approach to measuring health-related quality of life. J Chronic Dis. 1987;40(6):593–603.
Utility approach to measuring health-related quality of life
J Chronic Dis.
, vol. 
40
 (pg. 
593
-
603
)
Hunt SM, McKenna SP, McEwen J, Backett EM, Williams J, Papp E. A quantitative approach to perceived health status: A validation study. J Epidemiol Community Health. 1980;34(4):281–286.
A quantitative approach to perceived health status: A validation study
J Epidemiol Community Health.
, vol. 
34
 (pg. 
281
-
286
)
Bergner M, Bobbitt RA, Pollard WE, Martin DP, Gilson BS. The sickness impact profile: Validation of a health status measure. Med Care. 1976;14(1):57–67.
The sickness impact profile: Validation of a health status measure
Med Care.
, vol. 
14
 (pg. 
57
-
67
)
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(6):473–483.
The MOS 36-item Short-Form Health Survey (SF-36). I. Conceptual framework and item selection
Med Care.
, vol. 
30
 (pg. 
473
-
483
)
Wiklund I. The Nottingham Health Profile-a measure of health-related quality of life. Scand J Prim Health Care Suppl. 1990;1:15–18.
The Nottingham Health Profile-a measure of health-related quality of life
Scand J Prim Health Care Suppl.
, vol. 
1
 (pg. 
15
-
18
)
MacKeigan LD, Pathak DS. Overview of health-related quality-of-life measures. Am J Hosp Pharm. 1992;49(9):2236–2245.
Overview of health-related quality-of-life measures
Am J Hosp Pharm.
, vol. 
49
 (pg. 
2236
-
2245
)
Tate DG, Kalpakjian CZ, Forchheimer MB. Quality of life issues in individuals with spinal cord injury. Arch Phys Med Rehabil. 2002;83(Suppl 2):S18–25.
Quality of life issues in individuals with spinal cord injury
Arch Phys Med Rehabil.
, vol. 
83
 (pg. 
S18
-
25
)
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
)
Gill TM, Feinstein AR. A critical appraisal of the quality of quality-of-life measurements. JAMA. 1994;272(8):619–626.
A critical appraisal of the quality of quality-of-life measurements
JAMA.
, vol. 
272
 (pg. 
619
-
626
)
Dijkers MP. Individualization in quality of life measurement: Instruments and approaches. Arch Phys Med Rehabil. 2003;84(4 Suppl 2):S3–14.
Individualization in quality of life measurement: Instruments and approaches
Arch Phys Med Rehabil.
, vol. 
84
 (pg. 
S3
-
14
)
World Health Organization. International Classification of Functioning, Disability and Health. Geneva: Author; 2001.
World Health Organization
International Classification of Functioning, Disability and Health.
Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA. 1995;273(1):59–65.
Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes
JAMA.
, vol. 
273
 (pg. 
59
-
65
)
Sousa KH, Kwok OM. Putting Wilson and Cleary to the test: Analysis of a HRQOL conceptual model using structural equation modeling. Qual Life Res. 2006;15(4):725–737.
Putting Wilson and Cleary to the test: Analysis of a HRQOL conceptual model using structural equation modeling
Qual Life Res.
, vol. 
15
 (pg. 
725
-
737
)
Cella D1, Yount S, Rothrock N, et al.; PROMIS Cooperative Group. The Patient-Reported Outcomes Measurement Information System (PROMIS): Progress of an NIH Roadmap cooperative group during its first two years. Med Care. 2007;45(5 Suppl 1):S3–S11.
PROMIS Cooperative Group. The Patient-Reported Outcomes Measurement Information System (PROMIS): Progress of an NIH Roadmap cooperative group during its first two years
Med Care.
, vol. 
45
 (pg. 
S3
-
S11
)
Krahn GL, Horner-Johnson W, Hall TA, et al. Development and psychometric assessment of the function-neutral health-related quality of life measure. Am J Phys Med Rehabil. 2014;93(1):56–74.
Development and psychometric assessment of the function-neutral health-related quality of life measure
Am J Phys Med Rehabil.
, vol. 
93
 (pg. 
56
-
74
)
Johnston MV, Granger CV. Outcomes research in medical rehabilitation: A primer and introduction to a series. Am J Phys Med Rehabil. 1994;73(4):296–303.
Outcomes research in medical rehabilitation: A primer and introduction to a series
Am J Phys Med Rehabil.
, vol. 
73
 (pg. 
296
-
303
)
Krahn GL, Suzuki R, Horner-Johnson W. Self-rated health in persons with spinal cord injury: Relationship of secondary conditions, function and health status. Qual Life Res. 2009;18(5):575–584.
Self-rated health in persons with spinal cord injury: Relationship of secondary conditions, function and health status
Qual Life Res.
, vol. 
18
 (pg. 
575
-
584
)
Crewe N. Quality of life: The ultimate goal in rehabilitation. Minn Med. 1980;l63:586–589.
Quality of life: The ultimate goal in rehabilitation
Minn Med.
, vol. 
l63
 (pg. 
586
-
589
)
Siösteen A, Lundqvist C, Blomstrand C, Sullivan L, Sullivan M. The quality of life of three functional spinal cord injury subgroups in a Swedish community. Paraplegia. 1990;28(8):476–488.
The quality of life of three functional spinal cord injury subgroups in a Swedish community
Paraplegia.
, vol. 
28
 (pg. 
476
-
488
)
Sjoberg L, Svensson E, Persson LO. The measurement of mood. Scand J Psychol. 1979;20:1–18.
The measurement of mood
Scand J Psychol.
, vol. 
20
 (pg. 
1
-
18
)
Zigmund AS, Saith RP. The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand. 1983;67: 361–370.
The Hospital Anxiety and Depression Scale
Acta Psychiatr Scand.
, vol. 
67
 (pg. 
361
-
370
)
Hitzig SL1, Noreau L, Balioussis C, Routhier F, Kairy D, Craven BC. The development of the spinal cord injury participation and quality of life (PAR-QoL) tool-kit. Disabil Rehabil. 2013;35(16):1408–1414.
The development of the spinal cord injury participation and quality of life (PAR-QoL) tool-kit
Disabil Rehabil.
, vol. 
35
 (pg. 
1408
-
1414
)
Costa P, Perrouin-Verbe B, Colvez A, et al. Quality of life in spinal cord injury patients with urinary tract difficulties. Development and validation of qualiveen. Eur Urol. 2001;39:107–113.
Quality of life in spinal cord injury patients with urinary tract difficulties. Development and validation of qualiveen
Eur Urol.
, vol. 
39
 (pg. 
107
-
113
)
Cook KF, Teal CR, Engebretson JC, et al. Development and validation of Patient Reported Impact of Spasticity Measure (PRISM). J Rehabil Res Dev. 2007;44:363–371.
Development and validation of Patient Reported Impact of Spasticity Measure (PRISM)
J Rehabil Res Dev.
, vol. 
44
 (pg. 
363
-
371
)
Whitehurst DG, Engel L, Bryan S. Short form health surveys and related variants in spinal cord injury research: A systematic review. J Spinal Cord Med. 2014;37(2):128–138.
Short form health surveys and related variants in spinal cord injury research: A systematic review
J Spinal Cord Med.
, vol. 
37
 (pg. 
128
-
138
)
Whitehurst DG, Noonan VK, Dvorak MF, Bryan S. A review of preference-based health-related quality of life questionnaires in spinal cord injury research. Spinal Cord. 2012;50(9):646–654.
A review of preference-based health-related quality of life questionnaires in spinal cord injury research
Spinal Cord.
, vol. 
50
 (pg. 
646
-
654
)
van Koppenhagen CF, Post MW, van der Woude LH, et al. Recovery of life satisfaction in persons with spinal cord injury during inpatient rehabilitation. Am J Phys Med Rehabil. 2009;88(11):887–895.
Recovery of life satisfaction in persons with spinal cord injury during inpatient rehabilitation
Am J Phys Med Rehabil.
, vol. 
88
 (pg. 
887
-
895
)
Post MW, de Witte LP, Schrijvers AJ. Quality of life and the ICIDH: Towards an integrated conceptual model for rehabilitation outcomes research. Clin Rehabil. 1999;13(1):5–15.
Quality of life and the ICIDH: Towards an integrated conceptual model for rehabilitation outcomes research
Clin Rehabil.
, vol. 
13
 (pg. 
5
-
15
)
Dijkers M. “What’s in a name?” The indiscriminate use of the “quality of life” label, and the need to bring about clarity in conceptualizations. Int J Nurs Stud. 2007;44(1):153–155.
“What’s in a name?” The indiscriminate use of the “quality of life” label, and the need to bring about clarity in conceptualizations
Int J Nurs Stud.
, vol. 
44
 (pg. 
153
-
155
)
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):S44–51.
Developing a contemporary patient-reported outcomes measure for spinal cord injury
Arch Phys Med Rehabil.
, vol. 
92
 (pg. 
S44
-
51
)
Van der Zee CH, Post MW, Brinkhof MW, Wagenaar RC. Comparison of the Utrecht Scale for Evaluation of Rehabilitation-Participation with the ICF Measure of Participation and Activities Screener and the WHO Disability Assessment Schedule II in persons with spinal cord injury. Arch Phys Med Rehabil. 2014;95(1):87–93.
Comparison of the Utrecht Scale for Evaluation of Rehabilitation-Participation with the ICF Measure of Participation and Activities Screener and the WHO Disability Assessment Schedule II in persons with spinal cord injury
Arch Phys Med Rehabil.
, vol. 
95
 (pg. 
87
-
93
)
Hörnquist JO. The concept of quality of life. Scand J Soc Med. 1982;10(2):57–61.
The concept of quality of life
Scand J Soc Med.
, vol. 
10
 (pg. 
57
-
61
)
van Knippenberg FC, de Haes JC. Measuring the quality of life of cancer patients: Psychometric properties of instruments. J Clin Epidemiol. 1988;41(11):1043–1053.
Measuring the quality of life of cancer patients: Psychometric properties of instruments
J Clin Epidemiol.
, vol. 
41
 (pg. 
1043
-
1053
)
Gotay CC, Moore TD. Assessing quality of life in head and neck cancer. Qual Life Res. 1992;1(1):517.
Assessing quality of life in head and neck cancer
Qual Life Res.
, vol. 
1
 
Emerson E . Evaluating the impact of deinstitutionalization on the lives of mentally retarded people. Am J Mental Defic.1985;90(3):277.
Evaluating the impact of deinstitutionalization on the lives of mentally retarded people
Am J Mental Defic.
, vol. 
90
 pg. 
277
 
WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med. 1998;28:551–558.
WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment
Psychol Med.
, vol. 
28
 (pg. 
551
-
558
)
Patrick DL, Erickson P. Assessing health-related quality of life for clinical decision making. In Walker SR, Rosser RM, eds. Quality of Life: Assessment and Application. Lancaster, England: MTP Press; 1988:22.
Assessing health-related quality of life for clinical decision making
Quality of Life: Assessment and Application.
pg. 
22
 
Schipper H, Clinch, JJ, Olweny CLM. Quality of life studies: Definitions and conceptual issues. In Spilker B, ed. Quality of Life and Pharmacoeconomics in Clinical Trials. Philadelphia: Lippincott-Raven Publishers; 1996:11–23.
Quality of life studies: Definitions and conceptual issues
Quality of Life and Pharmacoeconomics in Clinical Trials
(pg. 
11
-
23
)
Wood-Dauphinée S, Exner G, Bostanci B, et al.; SCI Consensus Group. Quality of life in patients with spinal cord injury-basic issues, assessment, and recommendations. Restor Neurol Neurosci. 2002;20(3–4):135–149.
SCI Consensus Group. Quality of life in patients with spinal cord injury-basic issues, assessment, and recommendations
Restor Neurol Neurosci.
, vol. 
20
 (pg. 
135
-
149
)
National Institutes of Health. http://www.cancer.gov/dictionary?cdrid=45417. Accessed May 5, 2014. http://www.cancer.gov/dictionary?cdrid=45417.
Center for Disease Control and Prevention. http://www.cdc.gov/chronicdisease/stats/index.htm. Accessed May 5, 2014. http://www.cdc.gov/chronicdisease/stats/index.htm
This content is only available as a PDF.