The quality of life that one experiences today is determined by their systems/means of information capture and utilization.Discuss
Answers
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.
Key words: health status, outcome assessment, quality of life, spinal cord injuries
Introduction
Because of improvements in medical care, the average life expectancy of people with spinal cord injury (SCI) has increased considerably in recent decades.1 However, SCI still is a major life event that leads to serious physical disability and a large number of secondary health conditions (SHCs), the most frequent being pain, bowel and bladder regulation problems, muscle spasms, fatigue, heart burn, and osteoporosis.2 Research clearly shows an overall negative impact of SCI on labor market participation, leisure activities, and social relations3; an elevated prevalence of depression, anxiety, and posttraumatic stress disorder (PTSD) compared to the general population4; and on average substantially lower life satisfaction compared to the general population.5
Due to the wide range of consequences of SCI, it is clear that outcome measures covering basic activities of daily living such as the Functional Independence Measure6 or the Spinal Cord Independence Measure7 are insufficient to capture the complexities of living with SCI and thereby to measure rehabilitation outcomes after SCI.8,9 Many agree that quality of life (QOL) should be measured in tandem with traditional outcomes assessing functional rehabilitation, because such measurements provide different yet complimentary information that aids clinicians in their efforts to help those with SCI.10,11