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The relationship between disease activity and quality of life in systemic lupus
erythematosus

Article in British Journal of Rheumatology · January 2005

DOI: 10.1093/rheumatology/keh376 · Source: PubMed

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Rheumatology 2004;43:1536–1540 doi:10.1093/rheumatology/keh376
Advance Access publication 1 September 2004

The relationship between disease activity and quality

of life in systemic lupus erythematosus
S. Khanna1, H. Pal2, R. M. Pandey3 and R. Handa1

Objective. To determine the quality of life (QOL) in SLE patients and correlate it with disease activity.
Methods. Lupus patients fulfilling the ACR 1997 criteria for SLE were included in this cross-sectional study. Patients were
administered the World Health Organization Quality of Life—Bref (WHOQOL-Bref) to assess their quality of life. Disease
activity was measured using Mexican Systemic Lupus Erythematosus Disease Activity Index (Mex-SLEDAI).
Results. The study group comprised 73 lupus patients (70 females and three males) with mean age 35.22
11.15 yr and mean
disease duration 5.62
5.14 yr. Mean Mex-SLEDAI score was 3.31
3.19. Higher disease activity scores were associated with
lower QOL scores in the physical (P ¼ 0.001) and psychological domains (P ¼ 0.01) but showed no significant correlation with
the domains of social and environmental QOL. Patients with clearly active and probably active disease showed significantly
lower scores in the physical (P ¼ 0.01) and psychological (P ¼ 0.02) domains than patients with inactive disease. However, no

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significant difference was found in the domains of social and environmental QOL. Age or disease duration did not affect the
QOL in any of the domains.
Conclusions. Physical and psychological QOL are impaired to a larger extent in active lupus. However, social and
environmental QOL do not correlate with the disease activity status in lupus patients.
KEY WORDS: SLE, Disease activity, Quality of life, Mex-SLEDAI, WHOQOL.

Systemic lupus erythematosus is a chronic autoimmune dis- Materials and methods

order, characterized by periods of active disease and remission.
The survival of SLE patients has significantly improved over
the past years [1, 2]. There is now a growing realization that
physical attributes of health do not fully measure disease status
in chronic conditions like SLE. Psychosocial factors such as
pain, apprehension, difficulty in fulfilling personal and family
responsibilities, financial burden and diminished cognition are
equally important and must also be encompassed [3]. Assessing the
quality of life (QOL) is thus an important measure to appraise
how much the disease process and its treatment is affecting
an individual.
WHO has defined QOL as ‘individuals’ perception of their
position in life in the context of the culture and value systems
in which they live and in relation to their goals, expectations,
standards and concerns’ [4]. It is a broad-ranging concept affected
in a complex way by the person’s physical health, psychological
state, personal beliefs and social relationships and their relation-
ship to salient features of their environment. Measures of QOL
consider the effects of the disease or its treatment from the patient’s
perspective and determine the need for social, emotional and
physical support during illness.
There is paucity of literature on QOL issues in lupus patients
from Asia [5, 6]. Also, existing studies on the relationship of disease
activity with QOL are equivocal. While some studies on QOL in
SLE have shown that disease activity correlates with QOL [7, 8],
others have shown that QOL in SLE patients does not correlate
with the disease status [5, 9–12].
We therefore planned a cross-sectional study to assess the QOL
in patients with SLE and correlate the QOL with the disease
activity in these subjects.
Patient selection
SLE patients fulfilling the American College of Rheumatology
1997 revised criteria for lupus [13, 14] were included in this cross-
sectional study. Patients with overlap syndromes were excluded.
Patients were informed of the objectives of the study and verbal
consent obtained. Out of the 75 patients approached, two refused
consent. In consonance with the practice at our institution, ethics
committee approval was not obtained.
Data collection
The demographic and clinical data of the patients were recorded;
disease activity was measured using the Mexican Systemic Lupus
Erythematosus Disease Activity Index (Mex-SLEDAI). Patients
were administered the World Health Organization Quality of
Life—Bref (WHOQOL-Bref) to measure the QOL. A patient
education booklet, ‘Handout on Health—Systemic Lupus
Erythematosus’ was prepared in English and Hindi and distributed
amongst patients included in the study.
Measuring instruments
Mex-SLEDAI. The Mex-SLEDAI was used to measure the
disease activity. Mex-SLEDAI, a modified version of SLEDAI,
was developed by Guzman et al. in 1992 primarily for use in
developing countries, where the facilities for estimation of dsDNA
antibodies and C3 complement levels may not be easily or always

1
Department of Medicine, 2Department of Psychiatry and 3Department of Biostatistics, All India Institute of Medical Sciences, New Delhi, India.

Submitted 29 April 2004; revised version accepted 16 July 2004.

Correspondence to: R. Handa. E-mail: rohinihanda@hotmail.com
1536
Rheumatology Vol. 43 No. 12 ß British Society for Rheumatology 2004; all rights reserved
 Disease activity and quality of life in SLE 1537

available [15]. The Mex-SLEDAI has been validated against the TABLE 1. Clinical and laboratory characteristics of the patients (n ¼ 73)
Systemic Lupus Erythematosus Disease Activity Index (SLEDAI)
and the Lupus Activity Criteria Count (LACC) and shown to be as Descriptor Present (n ¼ 73)
reliable as the SLEDAI (rs ¼ 0.894 vs 0.867). Its correlation with Neurological disorder 0 (0%)
the expert’s visual analogue scale (VAS) was similar to SLEDAI Renal disorder 14 (19.2%)
(rs ¼ 0.678 for SLEDAI and 0.677 for Mex-SLEDAI). Mex- Vasculitis 1 (1.4%)
SLEDAI has a sensitivity of 85.7% and a specificity of 100%. It Haemolysis 0 (0%)
was shown to be 30% cheaper than SLEDAI and 15% cheaper to Thrombocytopenia 0 (0%)
administer than LACC [15] and is appropriate for use in a Myositis 0 (0%)
developing country like India. Arthritis 25 (65.8%)
Mex-SLEDAI rates a descriptor as present if it has occurred Mucocutaneous disorder 36 (49.3%)
Serositis 1 (1.7%)
in the past 10 days. Disease activity is defined for 10 main clini-
Fever 12 (16.4%)
cal variables instead of the original 24 variables which require Fatigue 43 (58.9%)
laboratory confirmation, viz. neurological disorder, renal disorder, Leucopenia 0 (0%)
vasculitis, haemolysis, thrombocytopenia, myositis, arthritis, Lymphopenia 0 (0%)
mucocutaneous disorder, serositis, fever, fatigue, leucopenia and
lymphopenia. It is an ordinal scale which gives a composite score
ranging from 0 to 32. A higher score implies greater disease acti-
vity [15]. Patients scoring less than 2 are said to have clearly TABLE 2. Mex-SLEDAI and WHOQOL scores
inactive disease, those scoring between 2 and 5 are categorized as

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probably active, while those scoring more than 5 are said to be Instrument Mean
S.D. Range
clearly active [16, 17].
Mex-SLEDAI 3.31
3.19 0–12.5
WHOQOL–physical 12.98
3.01 5.14–18.29
WHOQOL-Bref. WHOQOL-Bref is a 26-item abbreviated WHOQOL–psychological 12.94
3.11 4.67–20.00
version of the WHOQOL-100 [4, 18]. WHOQOL-Bref has been WHOQOL–social 15.39
3.53 4.00–20.00
shown to correlate at 0.9 with the WHOQOL-100 with good WHOQOL–environmental 14.11
2.48 8.50–20.00
discriminant validity, content validity and test–retest reliability
[18, 19].
WHOQOL-Bref (Appendix 1, available as supplementary data
at Rheumatology Online) is based on a four-domain structure: TABLE 3. Pearson correlation (r) between disease activity and QOL scores
physical (seven items), psychological (six items), social (three
items) and environmental (eight items). A time frame of 15 days is Mex-SLEDAI P
indicated in the assessment. It uses a Likert-type five-point scale to QOL–physical r ¼ 0.41 0.00
grade the patient’s response to the QOL items. Twenty-four of the QOL–psychological r ¼ 0.30 0.01
26 questions are used to compute the QOL scores. The scale gives QOL–social r ¼ 0.09 0.46
continuous scores ranging from 4 to 20 for each domain. A higher QOL–environmental r ¼ 0.18 0.23
score signifies better QOL. Keeping in view that QOL is best
measured by the patient himself/herself and not his or her
physician or nurse [20], the questionnaire was administered to
the patients. The patients were given a choice amongst the English domain. The QOL scores were the highest in the domain for
and the validated Hindi versions of the questionnaire. Domain the social QOL, with a mean of 15.39
3.53, followed by the
scores were calculated according to the WHO guidelines [21]. environmental domain, which showed a mean of 14.11
2.48
(Table 2). Pearson correlation coefficients were used to correlate
the Mex-SLEDAI scores with the four domains of the WHOQOL.
Data analysis Disease activity scores showed a significant negative correlation
with the domains of physical (r ¼ 0.41, P ¼ 0.00) and psycholog-
Statistical analysis was carried out using SPSSÕ 10.0. This com-
ical (r ¼ 0.30, P ¼ 0.01) QOL. However, the domains of social
prises descriptive analysis of the domain scores of WHOQOL,
(r ¼ 0.09, P ¼ 0.46) and environmental (r ¼ 0.14, P ¼ 0.23)
Pearson correlation coefficients to compare the Mex-SLEDAI and
QOL did not show any significant correlation with the disease
the WHOQOL scores, comparison of means using t tests, one-way
analysis of variance (ANOVA) and Mann–Whitney U tests to activity scores (Table 3).
compare the QOL scores amongst the various groups of disease The mean QOL scores amongst the three groups of disease
activity. A P value <0.05 was regarded as statistically significant, activity were computed using one-way ANOVA and a post hoc
except for correlation coefficients, where a P value of <0.01 was Tukey’s test. The QOL scores were significantly higher in patients
used to correct the effect of multiple comparisons. with inactive (n ¼ 22) disease than in patients with probably active
(n ¼ 36) and clearly active (n ¼ 15) disease in the domains of
physical (P ¼ 0.01) and psychological (P ¼ 0.02) QOL. However,
no significant difference in the mean scores was found amongst the
Results three groups in the domains of social and environmental QOL
The 73 patients included in the study comprised 70 females and (Table 4, Fig. 1).
three males (mean age 35.22
11.15 yr; range 16–68 yr). The mean Of the 73 patients in our cohort, 25 had arthritis at the time
disease duration was 5.62
5.14 yr (range 1 month to 21 yr; median of assessment. These patients exhibited significantly lower QOL
4 yr). The mean Mex-SLEDAI score was 3.31
3.19 (range scores in all the four domains of the WHOQOL-Bref than patients
0–12.5). Of this cohort, 22 patients had inactive disease, while 36 who did not have arthritis. Forty-three out of the 73 lupus patients
had probably active disease and 15 patients had clearly active with complaints of fatigue had lower scores in all the four domains
disease. The clinical characteristics of the patients are shown in of the WHOQOL-Bref than patients who did not complain of
Table 1. fatigue. Mucocutaneous disorder, seen in 36 out of the 73 patients,
The WHOQOL-Bref showed mean scores of 12.98
3.01 in the was associated with significantly lower psychological QOL
domain of physical QOL and 12.94
3.11 in the psychological scores, while other domains were unaffected. A non-parametric
1538 S. Khanna et al.

TABLE 4. Mean difference in QOL scores amongst different groups of disease activity

Disease activity Pairwise comparison

I: Clearly inactive (n ¼ 22) II: Probably active (n ¼ 36) III: Clearly active (n ¼ 15) One-way ANOVA I vs II I vs III II vs III

QOL Mean
S.D. Mean
S.D. Mean
S.D. F P P P P

Physical 14.65
2.39 12.33
2.90 12.11
3.26 5.440 0.01 0.01 0.02 0.97
Psychological 14.52
2.73 12.30
3.02 12.18
3.19 4.427 0.01 0.02 0.05 0.99
Social 16.45
2.79 14.67
3.76 15.56
3.76 1.808 0.17 0.15 0.72 0.69
Environmental 15.00
2.71 13.50
2.17 14.30
2.54 2.678 0.07 0.06 0.66 0.53

12.62
2.87 vs 13.69
3.19, P ¼ 0.16; psychological domain,

12.64
2.98 vs 13.49
3.33, P ¼ 0.27; social domain, 15.03
3.43
vs 16.03
3.69, P ¼ 0.25; environmental domain, 13.83
2.56
vs 14.63
2.26, P ¼ 0.18). There was no statistical difference
between the two groups.
To study the influence of disease duration, the study population

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was divided into two groups: those with a disease duration less than
4 yr and those with duration greater than 4 yr, based upon the
median disease duration. There was no significant difference in
the quality of life scores in any of the domains in the two groups
(Table 6).
Age showed no significant relationship with the QOL scores in
any of the domains. Gender analysis was not carried out as only
three out of 73 patients were males.

FIG. 1. Distribution of the mean QOL scores amongst the three
groups of disease activity.
Mann–Whitney U test was done to see the distribution of scores
amongst the disease descriptors of fever and renal disorder. Fever
greater than 38 C (after excluding infection) was present in 12
patients. These patients showed lower scores in the domain of
physical health, while other domains showed no significant
difference. The presence of active renal disorder (n ¼ 14) did not
lead to a difference in the QOL scores in any of the domains
(Table 5). Since only one patient each in the study group had
vasculitis and serositis while none of the patients exhibited any
neurological disorder, myositis, haemolysis, thrombocytopenia,
leucopenia or lymphopenia at the time of assessment, these
variables were not studied.
Forty-seven of the 73 patients opted for the Hindi version of
the WHOQOL-Bref and 26 for the English version of the question-
naire. Of the 47 patients who preferred the Hindi version, 28 (60%)
had received education beyond high school. In case of the English
version, 25 of the 26 (96%) patients had received education beyond
high school. The mean QOL scores in those who had used the
Hindi version of WHOQOL-Bref were compared with the scores
of those who had used the English version (physical domain,
Discussion
The growing realization that traditional assessments of physical
health alone are unsatisfactory measures of the impact of disease
has led to increasing interest in QOL measures in recent years.
Disease activity and damage are relatively easy to quantify in SLE
and several validated measures, such as Mex-SLEDAI and the
SLICC index, are available [15, 22]. QOL is difficult to measure
and there is no consensus on the single best instrument to use. Most
studies report an impaired QOL in lupus patients [7, 9]. However,
studies of relationship of disease activity with QOL in lupus
have shown equivocal results, some studies [5, 9–12] showing
no relationship while others have shown worsening QOL
with increasing disease activity [7, 8]. The vast majority of studies
on QOL in SLE have emerged from the developed countries of
Europe and North America [7, 9], with few data from Asian
countries [5, 6, 23]. There are no data on QOL in lupus patients
from the Indian subcontinent. Also the instruments used to assess
QOL in lupus have included the Euroqol EQ-5D, SF-20 MOS SF-
36 indices [7, 8, 22]. The cross cultural comparability of these
instruments has not been demonstrated [18]. This makes their
direct application in developing countries questionable.
Our study included 73 patients with lupus attending the
rheumatology clinic at a tertiary care teaching hospital in North
India. We preferred to use WHOQOL-Bref as a measure of QOL.

TABLE 5. Mean QOL scores amongst descriptors of disease activity

Arthritis Fatigue Mucocutaneous disorder Fever Renal disorder

Present Absent Present Absent Present Absent Present Absent Present Absent
(n ¼ 25) (n ¼ 48) (n ¼ 43) (n ¼ 30) (n ¼ 36) (n ¼ 37) (n ¼ 12) (n ¼ 61) (n ¼ 14) (n ¼ 59)
Physical 14.11
2.40z 10.83
2.92 15.04
1.93z 11.54
2.79 13.63
2.90 12.35
3.01 13.33
2.88* 11.24
3.15 13.22
2.90 11.95
3.32
Psychological 13.50
2.98* 11.87
3.13 14.35
2.82z 11.95
2.94 13.68
2.87* 12.21
3.20 13.10
3.11 12.11
3.08 13.19
3.09 11.85
3.05
Social 16.15
2.56y 13.92
4.60 16.37
2.67* 14.69
3.90 15.27
3.92 15.49
3.16 15.22
3.57 16.22
3.36 15.42
3.52 15.23
3.68
Environmental 14.72
2.26y 12.96
2.49 15.00
2.02y 13.50
2.59 14.31
2.72 13.91
2.23 14.28
2.43 13.25
2.59 14.09
2.46 14.21
2.61

*P < 0.05, yP < 0.01, zP < 0.001: as compared to absent.

 Disease activity and quality of life in SLE
TABLE 6. Relationship of QOL scores to disease duration
QOL score: mean
S.D.
Disease duration Disease duration
Domain 4 yr (n ¼ 43) >4 yr (n ¼ 30) P
Physical 12.84
3.10 13.19
2.90 0.62
Psychological 13.10
3.19 12.71
3.03 0.60
Social 15.70
3.37 14.93
3.76 0.36
Environmental 14.17
2.58 14.03
2.36 0.81
This measure gives a reliable, valid and responsive assessment of
QOL that is applicable across cultures [18]. The WHOQOL-Bref
is a 26-item questionnaire derived from the 100-item parent
WHOQOL-100. This parsimonious instrument can be used in
place of the 100-item parent questionnaire when time is restricted,
respondent burden must be minimized and where facet level
detail is unnecessary. WHOQOL-Bref has been validated in Hindi
[18]. One advantage of the WHOQOL instruments is that they
include a domain on environment. This may be particularly
appropriate in Asian countries where environment may play a
key role in determining health status and access to health-care.
There have been concerns about assessment of the social domain
by WHOQOL-Bref. Saxena et al. have shown that the domain
scores produced by WHOQOL-Bref correlate at around 0.9
with the WHOQOL-100 domain scores [18]. Similarly, results
from a recent large study using cross-sectional data obtained from
a survey of 11 830 adults across 23 countries confirm that
WHOQOL-Bref is a sound, cross-culturally valid assessment of
QOL, as reflected by all its four domains: physical, psychological,
social and environmental [24].
Our study revealed greater impairment of QOL in physical
and psychological domains. Patients scored higher in the social
and environmental domains. This seems to be a reflection of the
strong family support system prevalent in India and many other
Asian countries. This may counter the negative influence of
suboptimal health-care delivery systems in India. Our results
show that disease activity negatively correlates with the physical
and psychological domains, while the social and environmental
domains are not related. Access to health and social care is an
important item in the environmental domain in WHOQOL-Bref.
In the context of India, unlike that of developed Western societies,
the expectation of people and patients from the health-care system
is not high. Difficulty in access to health-care is a fact of life, widely
accepted. Similarly, there is hardly any social security system in
place. The lack of negative correlation between QOL scores in
the environmental domain and disease activity scores is probably
because of low expectation in the first place. The negative
correlation of disease activity and QOL in lupus has also been
noted by other authors [7, 8].
Age and disease duration did not affect QOL in our study.
The WHOQOL-Bref takes into account how the respondent felt
over the last 2 weeks. Thus, the disease activity at a particular point
of time would seem to affect QOL more than disease duration.
Other workers, too, have reported that disease activity in SLE
seems to influence QOL much more than disease duration [8–10].
Interestingly, arthritis and fatigue were the two clinical descrip-
tors having negative impact on all domains of QOL, while QOL
in patients with renal disease was no different from that in patients
without active lupus nephritis. This may be because of the fact
that renal disease in lupus is most often clinically silent and picked
up primarily on investigations. The cross-sectional nature of our
study is a drawback. A longitudinal study with multiple QOL
evaluations in the same patient would have been ideal.
In conclusion, our study demonstrated that physical and
psychological QOL are impaired to a greater extent in active
1539
lupus than social and environmental QOL. Arthritis and fatigue
are the two most important clinical descriptors which negatively
affect QOL in all domains. Age and disease duration did not affect
the QOL in any of the domains. Larger longitudinal studies
are needed to assess the relationship between the disease activity
and QOL in lupus. QOL measures should be incorporated into
the routine care of all patients with SLE.
The authors have declared no conflicts of interest.
Supplementary data
Supplementary data are available
at Rheumatology Online.
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