Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2014 Summer;20(3):167-80.
doi: 10.1310/sci2003-167.

Definitions of quality of life: what has happened and how to move on

Marcel W M Post  1
Affiliations

Definitions of quality of life: what has happened and how to move on

Marcel W M Post. Top Spinal Cord Inj Rehabil. 2014 Summer.

Abstract

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.

Keywords: health status; outcome assessment; quality of life; spinal cord injuries.

PubMed Disclaimer

Figures

Figure 1.
Figure 1.. The Spitzer QL-Index. Reprinted, with permission, from 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;34:591. Copyright © 1981 by C.V. Mosby.
Figure 2.
Figure 2.. Dijkers’s model of quality of life and its evaluation. Reprinted, with permission, from Dijkers MP. Quality of life of individuals with spinal cord injury: A review of conceptualization, measurement, and research findings. J Rehabil Res Dev. 2005;42:89.
Figure 3.
Figure 3.. The Wilson and Cleary model of quality of life. Reprinted, with permission, from 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. Copyright © 1995 by the American Medical Association.
Figure 4.
Figure 4.. PROMIS conceptual framework (http://www.nihpromis.org/measures/domain framework). Copyright © PROMIS Network 2011. Reprinted with permission, PROMIS Health Organization and PROMIS Cooperative Group.
Figure 5.
Figure 5.. Conceptual framework of the Function-Neutral Health-Related Quality of Life Measure. Reprinted, with permission, from 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):60. Copyright © 2014 by Lippincott Williams & Wilkins.
Figure 6.
Figure 6.. A comprehensive model of quality of life. Reprinted, with permission, from Post M, Noreau L. Quality of life after spinal cord injury. J Neurol Phys Ther. 2005;29:140. Copyright © 2005 by Lippincott Williams & Wilkins.
See this image and copyright information in PMC

References

    1. Devivo MJ. Epidemiology of traumatic spinal cord injury: Trends and future implications. Spinal Cord. 2012;50(5):365–372. - PubMed
    1. 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. - PubMed
    1. 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. - PubMed
    1. Craig A, Tran Y, Middleton J. Psychological morbidity and spinal cord injury: A systematic review. Spinal Cord. 2009;47(2):108–114. - PubMed
    1. Post MW, van Leeuwen CM. Psychosocial issues in spinal cord injury: A review. Spinal Cord. 2012;50(5):382–389. - PubMed

LinkOut - more resources