British Journal of Rheumatology 1997;36:786–793 MEASUREMENT OF THE QUALITY OF LIFE IN RHEUMATIC DISORDERS USING THE EUROQOL F. WOLFE*‡ and D. J. HAWLEY† *Arthritis Research and Clinical Center, †Wichita State University and ‡University of Kansas School of Medicine, Wichita, KS, USA SUMMARY The EuroQol is a validated quality of life (QOL) scale that has been used in population and clinical studies, and has been reported in patients with rheumatoid arthritis (RA). It is short, simple to complete, and might be suitable for surveys of rheumatic disease patients. The properties of this instrument were investigated in a postal survey of 1372 rheumatic disease patients, including 537 with RA, 319 with osteoarthritis (OA) and 516 with fibromyalgia. In addition, simultaneous measurements of functional disability, pain, psychological status, global severity and demographic characteristics were made. EuroQol scores (0.57) were significantly lower than VAS health state scores (0.67) and arthritis-related global severity scores (0.62). QOL was similar in RA and OA, but lower in fibromyalgia, across all instruments. The distribution of EuroQol scores had many gaps and was not continuous. EuroQol did not reflect VAS QOL scores at EuroQol levels below 0.5, and the mean score difference between the instruments below that level was 0.43. Many patients with low EuroQol scores (including some with health states that were ‘worse than death’) had high VAS scores. These differences appear to have arisen because disability, pain and depression questions ask about mild or moderate problems, but not both, thereby forcing scale compression in the mid ranges. In addition, the ‘severe’ value is so extremely abnormal that few patients endorse it. Finally, penalty scores are applied to those with at least one maximally abnormal score. The scoring properties and distributional aspects of the EuroQol indicate substantial problems in its use in rheumatic disease patients. K : EuroQol, Quality of life, Rheumatoid arthritis, Osteoarthritis, Fibromyalgia. T EuroQol is a validated, quality of life (QOL) scale which identifies 243 possible health states based on five questions concerning mobility, self-care, usual activity, pain/discomfort, and anxiety/depression, with each item having three possible levels (1, 2, 3) [1–9]. ‘Utilities’ or societal valuations have been placed on each state through a sample of 3235 persons, using time trade-off to determine valuations [10]. Perfect health and death have utilities of 1 and 0, and states worse than death (Q0) are possible. Because it is short, the EuroQol can be particularly useful in surveys. Such an instrument would be valuable in following the course and consequences of chronic rheumatic disorders. A previous report suggested that the EuroQol might be useful in assessing patients with rheumatoid arthritis (RA) [4]. In the current study, undertaken to investigate QOL in rheumatic disease (RD) and to investigate the properties of the EuroQol, the EuroQol was administered to 1372 patients: RA = 537, osteoarthritis (OA) = 319 and fibromyalgia (FIB) = 516. their RD problem every 6 months. Beginning in 1981, all new and returning patients attending the clinic were systematically invited to participate in postal surveys. At the time of the current survey (June 1994), 060% of patients were participating in the postal survey aspect of the study, although others participated through telephone interviews or while attending clinic. In general, patients participating in the postal survey differ slightly from non-participants by virtue of having more education, less pain, less Health Assessment Questionnaire (HAQ) disability and better psychological status [11, 12]. The current report involves 1372 patients who completed a survey questionnaire for the 6 month period beginning June 1994. Five hundred and thirty-seven had RA, 319 had OA and 516 had FIB. Patients with RA met established criteria for diagnosis [13, 14]. Osteoarthritis patients were diagnosed clinically as having OA of the knee, hip or hand, and the group was studied as a whole. Radiographic OA was not a sufficient condition for diagnosis, although it was a necessary condition. Diagnosis required pain or dysfunction at the peripheral joint and radiographic abnormality. Patients satisfied current American College of Rheumatology criteria for diagnosis [15–17]. Patients with FIB had met current or previous published criteria at the time of diagnosis [18]. Overlaps in diagnosis were resolved as follows. RA patients were classified as having RA regardless of any other RD diagnosis; OA patients were classified as OA provided only that they did not have an inflammatory rheumatic disorder; FIB patients did not have diagnosed RA or peripheral joint OA. METHODS The study population consisted of RD patients who had attended an out-patient rheumatology clinic (Arthritis Center, Wichita, KS, USA) and who had agreed to participate in a long-term outcome study which involved completing questionnaires regarding Submitted 10 October 1996; revised version accepted 13 January 1997. Correspondence to: F. Wolfe, Arthritis Research Center, 1035 N. Emporia, Suite 230, Wichita, KS 67214, USA. = 1997 British Society for Rheumatology 786 787 WOLFE AND HAWLEY: EUROQOL IN RHEUMATIC DISORDERS Demographic variables are captured using a method of data capture and entry described by Wolfe et al. [19]. Briefly, by detailed self-report questionnaire and interview, we question patients about all changes in demographic status at each clinic visit and at each questionnaire survey. The CLINHAQ is included in the postal survey [19]. This instrument contains self-reports for the HAQ disability index [20, 21], Arthritis Impact Measurement Scales (AIMS) anxiety and depression index [22], VAS pain, VAS global severity, VAS GI symptoms, VAS sleep problems, VAS fatigue, satisfaction with health, patient estimate of health status, and work ability. In the mailing of July 1994, we also included the EuroQol questionnaire [7, 9]. The specific pain assessment used a double-anchored VAS scale labelled on one end, ‘No Pain’ and on the other end, ‘Severe Pain’. The question read ‘How much pain have you had because of your illness in the past week?’ The range of the scale is 0–3. The specific questions and anchors for the global severity scale read: ‘Consider all of the ways that your illness affects you, rate how you are doing by placing a mark on the line’ (Very Well, Very Poor). The EuroQol consists of five domains of three statements each. Patients were asked to tick one statement for each domain. The domains and statements were as follows. Mobility. (1) I have no problems walking about; (2) I have some problems walking about; (3) I am confined to bed. Self-care. (1) I have no problems with self-care; (2) I have some problems washing or dressing myself; (3) I am unable to wash and dress myself. Usual activities. (1) I have no problems performing my usual activities (e.g. work, study, housework, family or leisure activities); (2) I have some problems with performing my usual activities; (3) I am unable to perform my usual activities. Pain/discomfort. (1) I have no pain or discomfort; (2) I have moderate pain or discomfort; (3) I have extreme pain or discomfort. Anxiety/depression. (1) I am not anxious or depressed; (2) I am moderately anxious or depressed; (3) I am extremely anxious or depressed. ‘Utilities’ or societal valuations are then placed on each state based on a sample of 3235 persons, using time trade-off to determine valuations [10]. Perfect health and death have utilities of 1 and 0, and states worse than death (Q0) are possible. The EuroQol VAS is a single vertical ‘feeling thermometer’ asking people to rate their health between the ‘best imaginable health state’ and the ‘worst imaginable health state’. It is scored between 0 and 100, but has been rescaled here to 0–1 for comparison with the EuroQol. The instructions ask participants to consider ‘all aspects of your health not just your arthritis or muscle problem’. The global severity scale, on the other hand, restricts the question to ‘all the ways that your illness affects you’. The global severity scale has also been rescaled to 0–1 and reversed to be compatible with the EuroQol. The EuroQol represents the calculated utility as determined from the published tariffs [10]. In Table I, we also present the HAQ disability, VAS pain and the anxiety and depression scales of the AIMS. Except for the EuroQol and the anxiety and depression scales, the other scales in this table have been reversed and rescaled to a minimum of 0 and a maximum of 1, for ease of comparison. In all cases, 1 represents the perfect health condition and 0 represents the worst health condition. TABLE I Mean scores and correlations for EuroQol, VAS Health State, VAS Global Severity, HAQ DI, VAS Pain and AIMS Anxiety and Depression RA OA Fibromyalgia All groups N EuroQol EuroQol VAS Global Severity 537 0.57 (0.25) 0.67 (0.19) 0.62 (0.24) 319 0.56 (0.25) 0.68 (0.19) 0.60 (0.23) 516 0.45 (0.31) 0.58 (0.21) 0.50 (0.25) 1372 0.53 (0.28) 0.63 (0.20) 0.57 (0.25) HAQ DI Correlation Correlation Correlation Pain Correlation Correlation Correlation Depression Correlation Correlation Correlation Anxiety Correlation Correlation Correlation 0.60 (0.26) 0.696 0.475 0.622 0.61 (0.25) 0.643 0.552 0.781 2.15 (1.59) −0.546 −0.493 −0.451 3.25 (1.91) −0.477 −0.477 −0.399 0.65 (0.23) 0.645 0.500 0.595 0.55 (0.26) 0.567 0.397 0.699 2.26 (1.67) −0.496 −0.499 −0.486 3.30 (1.84) −0.431 −0.433 −0.422 0.64 (0.24) 0.703 0.518 0.598 0.44 (0.25) 0.644 0.523 0.726 3.26 (1.96) −0.547 −0.515 −0.505 4.78 (2.04) −0.472 −0.457 −0.418 0.62 (0.25) 0.671 0.474 0.574 0.53 (0.26) 0.625 0.524 0.746 2.60 (1.83) −0.546 −0.521 −0.511 3.04 (2.08) −0.482 −0.482 −0.448 with EuroQol with EuroQol VAS with Global Severity with EuroQol with EuroQol VAS with Global Severity with EuroQol with EuroQol VAS with Global Severity with EuroQol with EuroQol VAS with Global Severity For comparison with the EuroQol in which 0 represents death and 1 is perfect health, we rescaled EuroQol VAS, Global Severity, HAQ Disability and Pain to a 0–1 scale, reversing the scales when necessary so that 0 was the worst score and 1 the best score. Anxiety and depression are in original units. Correlations are Spearman. Numbers in parentheses represent the standard deviation. 788 BRITISH JOURNAL OF RHEUMATOLOGY VOL. 36 NO. 7 F. 1.—Distribution of EuroQol scores. Values to the left of the vertical line at 0 indicate states ‘worse than death’. Statistical analyses Data were analysed using Intercooled Stata version 5.0 for Windows (23). Correlations were Spearman. Group differences were tested by t-tests or x 2 tests, as indicated. Augmented component plus residual plots were performed according to the method of Mallows [24]. A small amount of spherical random noise has been added to Figs 2–4 to aid in seeing overlapping points. Statistical significance was set at 0.05. All tests were two-tailed. RESULTS Demographics Patients with three rheumatic disorders were studied: RA (N = 537), OA (N = 319) and FIB (N = 516). In all, there were 1372 patients. The mean age of the group was 61.1 (.. 13.8) and 83.1% were women. Differences between three measures of QOL Table I presents three measures of QOL or health status: the EuroQol, the EuroQol VAS and a global severity scale. The EuroQol is correlated with EuroQol VAS at 0.568 and with global severity VAS at 0.602. The two VAS scales are correlated at 0.616. For all groups considered, ‘overall health’ as rated by EuroQol VAS is better than ‘arthritis health’ as rated by global severity (P Q 0.001). In turn, EuroQol health, as determined by the questionnaire and published tariffs, is worse than indicated by either of the other two measures (P Q 0.001). These differences are constant across all of the diagnostic groups. EuroQol and EuroQol VAS both identify RA and OA patients as being similar in QOL, but find FIB patients to have lower scores for both measures. These results are in accord with HAQ disability, pain, anxiety and depression scores. Both the EuroQol and the EuroQol VAS are significantly correlated with the other measures but, except for anxiety, the correlations are always stronger with EuroQol then with EuroQol VAS, and stronger still with the global severity scales. This may be expected since the EuroQol is composed of measures of function, pain and anxiety/depression, and the global scale directly reflects arthritis severity, while the VAS scale reflects only the global dimension of health. In the analyses that follow, the diagnostic groups were combined and analyses are for the entire group. Problems with EuroQol scores and scaling To attempt to understand the discrepancy between the two EuroQol scales, the scales were graphed (Figs 1 and 2). Four problems were identified. First, the distribution of EuroQol scores has many gaps, and it is particularly sparse between 0.25 and 0.5 (Fig. 1). In fact, there would seem to be two large groupings (or distributions): those between 0.5 and 0.75, and those between −0.25 and 0.25. Specifically, 75.9% of all patients are distributed in 21 health states between 0.5 and 0.883. Second, the scatter of the EuroQol VAS is quite great at some EuroQol health states, e.g. at 0.5 and 0.0 (Fig. 2). Third, there are many patients with EuroQol health states less than 0 (‘worse than death’) (Figs 1 and 2) and, finally, in many instances there is great discrepancy between the two measures for a WOLFE AND HAWLEY: EUROQOL IN RHEUMATIC DISORDERS number of patients (Fig. 2). The obvious examples are those patients with EuroQol scores from −0.25 to 0.25 who have VAS scores above 0.5. To study the effect of these differences (Fig. 3), patients were divided into three groups according to EuroQol scores: −0.05 to 0 (group 1), 0.02–0.49 (group 2) and 0.5–1 (group 3). In group 3, the difference between EuroQol scores and the VAS estimate of health state was 0.02, but in groups 1 and 2, the difference was 0.45 and 0.41, respectively. All differences were significant at Q0.001. That is, at levels of the EuroQol below 0.5, the two tests are in substantial and striking disagreement, with EuroQol being, on average, 0.43 lower than the result obtained with the VAS scale. To understand the discrepancies between the EuroQol scores based on tariffs and the VAS score, we examined the individual EuroQol components and compared them with clinical scales of the HAQ disability index, VAS pain and the AIMS depression scale. As shown in Table IIa, the EuroQol has four categories, two at the extreme ends and two in the middle, one of which is used in each scale. Table IIb breaks up the clinical variables into similar groups. For mobility (Table IIa), it can be seen that that almost no patients are in category IV (‘confined to bed’), and that 70.2% have some problems. This would seem to be an inadequate distribution of groups when compared to data from the HAQ (Table IIb) where 789 42.6% have moderate problems and 11.3% have severe problems. For self-care and usual activities, the category IV description is ‘unable’. For the EuroQol categories, 99.3% have no or some problem with self-care and 95% have no or some problem with usual activities, but these numbers fall to 46.1% for the HAQ. Similar problems are found with pain. The EuroQol finds 78.6% with moderate pain, but there is not a category for mild pain. Using a VAS pain score between 1 and 2 on the 0–3 point VAS scale, a markedly different distribution of pain scores is seen, with only 36.6% in the moderate category. For depression, an AIMS depression score of 4 is associated with probable clinical depression, and scores between 3 and 4 with important depressive symptoms. Once again there are substantial differences in the distribution of scores for the two tests, with more severely depressed patients being found in the AIMS category groups. To test whether the scaling used by the EuroQol, compared with the non-restricted scaling of the VAS scale, resulted in practical differences, two regression analyses were performed. EuroQol, then EuroQol VAS, was regressed on HAQ disability, pain and depression. Next, augmented component vs residual plots were examined (Fig. 4a and b). In all instances, an excellent fit was found with the VAS scale, but a poor fit was found with the EuroQol scale. As shown in Fig. 4a, residuals are significantly above the fit F. 2.—Plot of visual analogue health states vs EuroQol health utilities based on published tariffs. Values to the left of the vertical line at 0 indicate states ‘worse than death’. The regression line is locally weighted regression (Lowess) using a bandwidth of 0.4. The Pearson correlation coefficient is 0.568. 790 BRITISH JOURNAL OF RHEUMATOLOGY VOL. 36 NO. 7 F. 3.—Graph of the difference of VAS-EuroQol vs EuroQol score. There is substantial disagreement between the score at EuroQol levels less than 0.5. The curved line is a cubic spline fit through the data points. regression line when pain scores are between 1 and 2, and below the line when they are above 2. DISCUSSION The EuroQol has been used as a survey instrument in populations [1, 7, 8] as well as in patient care settings TABLE IIa Proportion of patients with differing levels of problem for EuroQol categories Component Mobility Self-care Usual activities Pain/discomfort Anxiety/depression IV Unable, extreme pain I II III or No Some Moderate psychological problem problems problem distress 29.4% 57.3% 21.0% 3.7% 45.1% 70.2% 42.1% 74.0% 78.6% 50.1% 0.4% 0.7% 5.0% 17.7% 4.7% TABLE IIb Proportion of patients with differing levels of problem for HAQ Disability, Pain and Depression Component HAQ DI* Pain* Depression† I II III No Some Moderate problem problems problem 18.0% 28.1% 8.4% 31.2% 67.0% 42.6% 36.4% 15.1% *HAQ and pain scores divided at 0.25, 1, 2. †AIMS depression divided at 3, 4 [22]. IV Severe problem 11.3% 24.1% 17.6% [2–5, 25–27]. Using the EuroQol utilities, one can determine differences in severity between illnesses and also measure changes within illnesses in response to treatment. It is part of the design of the instrument that it must capture the best and worst possible health state for each item [1]. It is also recognized that the EuroQol should be used along with a disease-specific healthrelated QOL measure [1]. This latter recommendation reflects the relative insensitivity to change that generic QOL measures and the EuroQol have compared to specific measures [7]. In spite of the recommendation that a disease-specific instrument also be used, the EuroQol must be able to reflect accurately the range and distribution of health states within an illness to be valid. The results of the current study suggest that the EuroQol may not fulfil this requirement in RD patients. The scaling of the individual EuroQol questions seems inappropriate and too narrow to capture many important RD changes. For mobility, the two extreme categories are ‘no problem’ and ‘confined to bed’, and for the self-care and usual activities there is similar extreme scaling. Since almost no patients will be in the ‘unable’ category, the only movement that can be detected will be between ‘no problems’ and the presence of ‘problems’. It is apparent, therefore, that the EuroQol cannot reflect changes in functional status that do not involve movement to and from category I to categories II–III. Tables IIa and IIb also suggest that pain is not adequately categorized, since almost 80% are in category III. One can easily imagine a WOLFE AND HAWLEY: EUROQOL IN RHEUMATIC DISORDERS 791 (a) (b) F. 4.—(a) and (b) Augmented component plus residual plots for the regression of EuroQol and EuroQol VAS on Pain, HAQ Disability and Depression. The curved line is a cubic spline fit through the data points. The solid line is the predicted regression line. (b) shows that the regression line fits the data well for the VAS scale, but (a) (EuroQol) shows a poor fit, with residuals above the line when pain scores are between 1 and 2, and below the line when scores are above 2. patient with active RA who has a successful total joint arthroplasty which improves pain, function, and anxiety and depression, yet who has no change in the EuroQol score. Scaling problems, i.e. inadequate range of choices within each item, are among the factors that lead to the problems in distribution of scores and disagreement between the EuroQol and VAS measures that are seen 792 BRITISH JOURNAL OF RHEUMATOLOGY VOL. 36 NO. 7 in Figs 1–3. At a clinical level, there is only slight disagreement between the EuroQol and the VAS scores for values of 0.5 and above (0.02), but there is marked disagreement below that level, with an average difference in scores of 0.43 (Fig. 3). One possible explanation for the gap between 0.25 and 0.5 on the EuroQol scales is that respondents who score in the most abnormal category for any of the five items have an additional 0.269 subtracted from their EuroQol score by EuroQol scoring rules. To see if this might be the full explanation, 0.269 was added to all EuroQol scores below 0.5. Although this narrowed the gap, it did not change the lack of agreement between EuroQol and VAS below the 0.5 level. To understand further the differences between the EuroQol and the VAS models, EuroQol and the VAS scales were regressed on HAQ disability, pain and depression in two separate models. Augmented component vs residual plots for each of the independent variables were then examined. These plots showed non-linearity in the EuroQol model, but not the VAS model, for the three independent variables (Fig. 4a and b). This was particularly the case at the intermediate and high levels of the variables. These abnormalities appear to be the results of the scaling rules used by the EuroQol. They suggest that, as a measure of QOL in RD patients, the EuroQol does not reflect clinical data accurately. Among the limitations of our study is that the utilities derived from European populations may not hold for the USA. Even so, the disparity between the EuroQol and the EuroQol VAS has been noted by others [4]. One explanation for the mediocre correlation between the EuroQol VAS and the EuroQol utilities (r = 0.568) may lie in the observation that the utilities are derived from a generally healthy population, whilst the VAS scores are obtained from RA patients. In addition, the EuroQol VAS, the ‘arthritis’ global severity scale, and EuroQol utility-based scales might differ because the EuroQol VAS is a measure of overall health, the global scale a measure of the ‘impact’ of arthritis or arthritis health, and the EuroQol a measure of impairment and disability. Thus, perhaps we should expect the three scales to yield up somewhat different results. In that respect, as noted in Table I, the global severity scale correlates better with HAQ and pain than does the EuroQol VAS, but global severity and EuroQol VAS do not differ in their correlations with the psychological scales. These three scales underscore the arbitrary nature of the term ‘quality of life’. Perhaps, instead, they are all measuring different aspects of ‘health status’. Although the EuroQol has been validated in population surveys [1, 6, 7] and appears to perform well there, its value in RD populations, based on our results, remains uncertain. While it is certain that the EuroQol can identify alterations in patients when individual items change from mild or moderate to no symptoms or extreme symptoms, it seems likely that it will fail to identify lesser changes. 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