Correlates of a Single-Item Quality-of-Life Measure in People Aging with Disabilities.

Physicians and health care providers understand that a range of health intervention outcomes are important to patients. Among these can be improved daily functioning, restored social interactions and participation, and improved quality-of-life (QOL) along with disease and symptom management. Education and training of medical students, medical residents, and fellows are evolving to address these broader functional and QOL issues.1,2 More specifically, QOL is especially important. Clinicians need to have a solid understanding of how patients rate their overall QOL. The effect of medical interventions on personal QOL, whether improved or harmed, is how most people determine, first, whether those interventions have been helpful and, second, whether they are worth the costs and effort. As described by Andrews and Withey, most people readily provide a response when asked for a global evaluation of their QOL (see Ref. 3, pp. 64–65). They do it promptly and with ease. More recently, Dijkers observed, “Most people do have tabs on their quality of life in a more-or-less quantitative calculus, and can translate their current score into the numbers offered by an investigator.”4 Use of QOL measures in clinical care therefore has the potential to help clinicians focus better on what matters to patients themselves as well as on medical management of patients’ conditions.5 However, measurement of QOL includes many considerations.6–8 The World Health Organization defined QOL as “an individual’s perception of their position in life in the context of the culture and value systems in which they live, in relation to their goals, expectations, standards, and concerns.”9 This definition has been operationalized differently by researchers with emphases on specific elements including measuring expectations vs. experience, considerations of time points in the trajectory of an individual’s life, and dependency on type of population surveyed.10–13 Discrepancies and similarities can occur among different raters, including clinicians, family, and individuals themselves.4,14–18 Items or elements measured in multi-item scales depend on the perspectives used, whether more of researchers’ or patients’.19 Of special interest is the finding of a “disability paradox” in 1999. Albrecht and Devlieger20 highlighted the importance of self-rated QOL. They reported that more than half of individuals with moderate to severe disability and limited resources nonetheless rated their QOL as good to excellent, rather than fair to poor. These findings may seem counterintuitive for those unfamiliar with the lives of people with disabilities. Other studies have shown similar “paradoxical” results in individuals with serious medical conditions who nonetheless rate their QOL as good.5,11 These findings have contributed to specific research on measurement of QOL in populations with different diagnoses. They emphasize the importance of having QOL measured by asking individuals themselves.21,22 Another consideration in multi-item measures is the mix of more objective and the more subjective items in the same scale. This approach is exemplified by tools like the Short Form-36 and the World Health Organization Quality of Life (WHOQOL)-100 and WHOQOL-BREF.9,23–25 Many of these scales target specific concepts like health-related QOL, functionally related QOL, and socially related QOL. Several challenges exist currently in relation to using these scales in daily clinical care. First, measures may not be designed for rapid use in the flow of clinical care. This may be attributed to (1) multiple items in the scale, (2) requirements for computerized scoring, and/or (3) difficult interpretation of results for practical clinical decision-making. Second, some items in the scales do not apply to certain populations. Functionally oriented measures, unless specifically designed and tested, are not applicable to people with disabilities that are otherwise healthy.26,27 Third, some items, such as asking about sexuality, may be seen as intrusive.28 Fourth, the practicality and clinical utility of many QOL measures have not been evaluated. These aspects require systematic planning, training, and measurement.5 In clinical encounters, measures that reflect patients’ or individuals’ points of view, as distinct from clinicians’ views, regarding their own QOL are especially needed. One possibility is to use a single-item, self-defined global QOL measure to address a patient’s subjective, self-rated QOL as a screening tool in busy clinical care. This type of a global measure would have “all domains of life taken together” and “evaluated in one single judgment.”4 An example is a measure “How do you feel about your life as a whole?” with response choices referred to as the Delighted-Terrible Scale (see Ref. 3, pp. 18–20). Specific words anchor seven response choices: Delighted, Pleased, Mostly Satisfied, Mixed (about equally satisfied and dissatisfied), Mostly dissatisfied, Unhappy, and Terrible. This measure is designed as a population survey tool. Two considerations for clinical use of this scale are the use of the term feel in the question and the choice of anchoring terms. The process of rating one’s QOL includes more than feelings. The assessment depends on thoughts, or cognitive assessments, as well. Second, the anchors may not represent, necessarily, an equal linear progression as indicated in the numbers of the scale. They do not necessarily represent “evenly spaced” judgments. However, according to the researchers, the labels were used to decrease the possible ambiguity of meaning of the numeric scores. These two considerations are addressed in another single-item, self-defined subjective QOL measure, the Kemp Quality of Life Scale (KQOL) (Fig. ​(Fig.1).1). In this measure, QOL is considered a single entity that has two extremes: one positive and one negative.29–32 As with other global scales, a person’s QOL can range from low (and negative) to high (and positive). There is also a midpoint where QOL is neither positive nor negative and the person is just “getting by.” This midpoint conveys that the absence of a negative QOL does not imply the presence of a positive QOL. FIGURE 1 Likert scale with anchors for response to KQOL. A large study of aging in individuals with physical impairments used the KQOL measure to assess participants’ QOL.33 Examination of these data could add evidence toward the possible clinical utility of the measure. Therefore, the current report evaluates the KQOL in four groups of individuals with different types of impairments. The objectives were (1) to examine how KQOL scores would be distributed across individuals with cerebral palsy, polio, rheumatoid arthritis, and stroke and (2) to examine differences on key psychosocial and functional variables among those with low, average, and high KQOL scores within each impairment group.