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Physical, psychosocial and economic impact of rheumatoid arthritis: A pilot

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 THE NATIONAL MEDICAL JOURNAL OF INDIA VOL. 19, NO. 4, 2006
Original Article
Physical, psychosocial and economic impact of rheumatoid
arthritis: A pilot study of patients seen at a tertiary care
referral centre
AMITA AGGARWAL, SHELLY CHANDRAN, RAMNATH MISRA
ABSTRACT
Background. Rheumatoidarthritisisassociatedwithmarked
physical disability. In addition, it has an impact on patients’
psycheandsocialwell-being,andentailsamajorfinancialburden.
The impact of the disease in different cultural and social
backgrounds is varied. Limited data are available from India on
thisaspect.
Methods. Patients with rheumatoid arthritis satisfying the
1987 modified American College of Rheumatology criteria
wereincluded.Besidesdemographicdata,functionalimpactwas
assessed using the Health Assessment Questionnaire (HAQ).
Thepsychosocialimpactwasmeasuredusingthemedicaloutcomes
study short form 36 (SF-36) with minor modifications. Data on
directandindirecthealthcostswerecollectedbydirectinterview.
Results. The mean age of 101 patients (90 women) was 43.2
yearsandmeandurationofdiseasewas8years.Theirmean(SD)
HAQ score was 0.97 (0.69) with 8 patients having scores >2.
On the SF-36 scale (0–100) the mean (SD) score for various
domains were: physical functioning 49.90 (28.55), social
functioning 55.51 (20.59), role limitation due to physical
problems 32.67 (41.34), role limitation due to emotional
problems 47.54 (40.08), mental health 47.36 (7.99), general
health perception 52.38 (8.30), energy and vitality 58.56
(6.09), and bodily pain 49.26 (18.87). The summary score for
the physical component was 37.95 (9.03) and for the mental
component it was 47.71 (4.81). While the physical component
summary score had excellent negative correlation with the HAQ
score (r=–0.84), correlation with the mental component
summary score was poor (r=0.32). The annual average total
cost burden per patient was Rs 16 758, of which Rs 11 617
(67%) was spent on health services and the rest on non-health
services (travel, home help and loss of wages).
Conclusion.Rheumatoidarthritiscausessignificantphysical
and social disability besides being an economic burden. Indian
patientshadgoodscoresformentalandsocialhealthsuggesting
Sanjay Gandhi Postgraduate Institute of Medical Sciences, Rae Bareli
Road, Lucknow 226014, Uttar Pradesh
AMITA AGGARWAL, SHELLY CHANDRAN, RAMNATH MISRA
Department of Immunology
Correspondence to AMITA AGGARWAL, amita@sgpgi.ac.in
© The National Medical Journal of India 2006
02_19_4_OA.pmd 187
187
good family support systems or reluctance to express their
feelingsdespitephysicaldisability.
Natl Med J India 2006;19:187–91
INTRODUCTION
Rheumatoid arthritis (RA) is a chronic autoimmune arthritis that
causes significant morbidity and mortality and affects almost 1%
of the global population. Patients with RA have a higher all-cause
mortality as compared with age-matched controls, which has
remained unaltered over the past 4–5 decades.1 It has been
calculated that RA reduces the life span by 5–10 years depending
on the age of onset.2 Patients with RA have a 7-fold higher risk of
disability as compared with age- and gender-matched controls.3
They gradually lose their functional capacity and at the end of 15
years nearly 30%–50% of the patients are in functional class III/
IV and need help for vocational/self-care activities.4 Along with
functional disability, RA has an impact on the emotional and
psychological functioning of the patient.
It has been suggested that one disease-specific and one generic
instrument be used to assess the impact of the disease.5 Generic
instruments measure broad aspects of the quality of life (QOL)
and provide a general sense of the effects of an illness. The major
limitation of generic QOL instruments is that they do not assess
potential condition-specific domains of QOL. Because of this,
they may not be sensitive enough to detect subtle treatment
effects. In contrast, disease-specific instruments are more sensitive
in detecting minor treatment effects.
The Stanford Health Assessment Questionnaire Disability
Index (HAQ-DI)6 is the most widely used disease-specific tool in
RA. It is a valid tool for the assessment of physical function in
patients with RA. The Stanford HAQ is a scale of 20 activities of
daily living (ADL) in 8 categories to assess functional disability,
with four patient response options:
0 Without any difficulty
1 With some difficulty
2 With much difficulty
3 Unable to do
The 8 categories of two or three ADLs address dressing,
arising, eating, walking, bathing, reaching, gripping and performing
errands. The score for each category is the highest score among the
two or three ADLs within the category; if the patient uses aids or
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 188 THE NATIONAL MEDICAL JOURNAL OF INDIA VOL. 19, NO. 4, 2006

devices for that category, it is scored as 2. The total score is the
mean score that is derived from 8 scores, one for each category.6
The total score for the HAQ-DI varies from 0 (no disability) to 3
(completely disabled).
The medical outcomes study short form 36 (SF-36)7 is an
abridged version of 149 health status questions. SF-36 is a valid,
disease-independent tool to assess the QOL. It measures health-
related QOL along 8 different domains: physical functioning, role
limitations due to physical problems, bodily pain, general health
perception, vitality, social functioning, role limitations due to
emotional problems and mental health. In SF-36 the scores are
calculated for 8 subscales from 0 to 100 (0: worst; 100: best).
Composite mental and physical component summary scores are
also computed from a weighted linear combination of 8 individual
subscales. Studies in patients with RA have revealed lower
physical and mental scores as compared to the general population.8,9
The impact on social and psychological domains is dependent
on the functional status and support system in the society and
ethnicity.10 In India, there is a strong family support system but
poor social support system. Thus, it is likely that the impact of RA
will be different in India. Further, RA also leads to considerable
cost to family and society. In a recent review the annual cost of RA
averages US$ 1503–16 504 (based on US$ costs in 2000) depending
on the patient population and the country.11 Total medical costs
were in the range of US$ 5720–5822 (based on costs in 1996) with
the maximum amount being spent on inpatient stay.12 Indirect
costs also have a major contribution to the economic burden of
RA.13 In India, it is difficult to make an accurate assessment of
economic burden as most patients with RA are homemakers and
calculating their contribution in economic terms is difficult. We
assessed the direct costs incurred on the disease such as cost of
drugs, laboratory tests and travel for consultations. Indirect costs
included loss of wages, need for home help, etc.
METHODS
One hundred and one patients with RA (1987 American College
of Rheumatology [ACR] criteria14) attending the RA clinic of a
tertiary care hospital during a 3-month period were included in
the study. Verbal informed consent was taken from all the
participants.
Besides demographic data, duration and state of disease were
recorded. Remission was defined as per the ACR criteria15 and
all patients not fulfilling the remission criteria were classified as
having active disease. Patients were also asked whether or not
they were using disease-modifying antirheumatoid drugs.
All patients who consented were administered the HAQ-DI and
SF-36 questionnaires by a medical graduate (SC). Minor
modifications were made in the questionnaires. In HAQ-DI, the
type of chores for the category ‘performing errands’ was
substituted by questions to suit Indian conditions, e.g. car was
substituted by rickshaw/bus and vacuuming by sweeping. In SF-
36 minor modifications included
1. Question number 23 was modified from ‘Did you feel full of
pep?’ to ‘Did you feel full of energy?’
2. Question number 25 was modified from ‘Have you felt so
down in the dumps that nothing can cheer you up?’ to ‘Have
you felt so sad that nothing can cheer you up?’
3. Question number 28 was modified from ‘Have you felt
downhearted and blue?’ to ‘Have you felt depressed?’
To assess the economic impact, expenditure incurred during
the past 1 year on medicines, laboratory tests and travel to hospital
was calculated and indirect costs of home help, loss of wages, etc.
were asked for.
The data were analysed using SPSS software version 11 and
Spearman rank correlation coefficient was calculated to assess
any association between different variables.
RESULTS
There were 90 women among the 101 patients studied. Their mean
age (SD) was 43.2 (11.69) years and the mean (SD) duration of
disease was 8.1 (5.6) years. Ninety-six patients were on disease-
modifying drugs. Active disease was present in 95 patients and 6
were in remission. The distribution of the HAQ-DI scores show
that the mean (SD) HAQ-DI score was 0.97 (0.69) with 6 patients
having a score >2 (Fig. 1).
On the SF-36 scale (0–100) the mean (SD) score for various
domains was: physical functioning 49.90 (28.55), social
functioning 55.51 (20.59), role limitation due to physical
problems 32.67 (41.34), role limitation due to emotional
problems 47.54 (40.08), mental health 47.36 (7.99), general
health perception 52.38 (8.30), energy and vitality 58.56 (6.09)
and bodily pain 49.26 (18.87). The summary score for the
physical component was 37.95 (9.03) and that for the mental
component 47.71 (4.81) (Table I, Fig. 1).
There was a good inverse correlation between physical disability
as assessed by HAQ-DI and various domains of SF-36. The
correlation with various physical domains was as follows:

TABLE I. Descriptive statistics of health-related quality of life

Item Mean (SD) 95% CI Median Interquartile range
HAQ 0.97 (0.69) o0.84–1.11 o1 0.44–1.31
SF-36
Physical functioning 49.90 (28.55) 44.26–55.54 50 25–75
Role functioning—physical 32.67 (41.34) 24.51–40.83 o0 0–75
Bodily pain 49.26 (18.87) 45.54–52.99 41 41–62
General health perception 52.38 (8.30) 50.75–54.02 52 45–57
Vitality 58.56 (6.09) 57.36–59.77 55 55–60
Social functioning 55.51 (20.59) 51.55–59.68 55 45–67.5
Role functioning—emotional 47.54 (40.08) 39.63–55.46 33.4 0–100
Mental health 47.36 (7.99) 45.79–48.94 48 40–56
Physical component summary 37.95 (9.03) 36.17–39.73 36.6 31.3–45
Mental component summary 47.71 (4.81) 46.76–48.67 47.6 44.3–51.2

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 AGGARWAL et al. : PHYSICAL, PSYCHOSOCIAL AND ECONOMIC IMPACT OF RHEUMATOID ARTHRITIS 189

30 30

Number of patients
Number of patients

25 25

20 20

15 15

10 10

5
5
0
0
0–10 11–20 21–30 31–40 41–50 51–60 61–70 71–80 81–90 91–100
0 >0–0.5 >0.5–1 >1–1.5 >1.5–2 >2–2.5 >2.5–3
HAQ score Social function domain

14
40

Number of patients
Number of patients

12 35
10 30
25
8
20
6 15
4
10
5
2 0
0

0
10

00
–2

–3

–4

–5

–6

–7

–8

–9

–1
0–
0–10 11–20 21–30 31–40 41–50 51–60 61–70 71–80 81–90 91–100

11

21

31

41

51

61

71

81

91
Physical function domain Mental function domain

FIG 1. Histogram showing distribution of HAQ and physical domain, social functioning and mental domain scores on the SF-36 scale in
patients with rheumatoid arthritis

physical functioning –0.778 (p<0.001), role limitation due to 100

physical function –0.711 (p<0.001), physical component summary
80
score –0.836 (p<0.001, Fig. 2). HAQ correlated well with the
MCS scores

bodily pain (–0.755; p<0.001), emotional (–0.561; p<0.002) and 60

social functioning domains (–0.610; p<0.001). However, there
was no significant correlation with the global health domain, 40
vitality domain and summary score for mental health (Fig. 2).
20
The mean (SD) annual income of the families was Rs 138 533
(74 397). The distribution revealed that 8% earned less than 0
Rs 50 000, 30% earned Rs 50 000–100 000, 26% earned 0 1 2 3
Rs 100 000–150 000, 18% earned Rs 150 000–200 000 and 18% HAQ score
earned more than Rs 200 000. The annual average total cost
burden per patient was Rs 16 758, of which Rs 11 617 (67%) was 100
spent on health services and the rest on non-health services (travel,
80
home help and loss of wages). Among the direct costs, expenditure
PCS scores

2
included those on medicines (Rs 9179), investigations (Rs 1974), 60 R = 0.6395
hospital registration (Rs 100) and hospitalization (Rs 456;
Table II). Among the indirect costs (Rs 5141 [17 233]) travel 40
was a major expenditure (Rs 2453 [4050]). Only 10 patients
20
received complete reimbursement for their medical expenses
from their employers while 15 received partial reimbursement. 0
None of the patients had any medical insurance. The cost of 0 1 2 3
treatment had no significant correlation with duration of disease HAQ score
or HAQ-DI due to a ceiling effect (Fig. 3) but it had a weak
FIG 2. Scatter plot showing correlation between HAQ score and
correlation with income (r=0.26, p<0.01).
physical component summary (PCS) score and mental
component summary (MCS) score
DISCUSSION
Ours is possibly the first study in India to show that RA has a major than the physical scores. There was a good correlation between
economic impact and the cost does not increase proportional to HAQ-DI and the physical scores of SF-36.
disability due to limited income. Our data also show that RA has Our patients had a mean HAQ-DI score of 0.97 at a mean
a considerable impact on the physical, emotional and mental disease duration of nearly 8 years. Cross-sectional studies from
health of patients. Further, the mental and social scores are better other countries have also found an average HAQ-DI score of 1.00

02_19_4_OA.pmd 189 4/19/2007, 5:04 PM

 190 THE NATIONAL MEDICAL JOURNAL OF INDIA VOL. 19, NO. 4, 2006

60000
erythematosus using the WHO-QOL scale.22 This may suggest
that the patients were well adjusted and received good support to
50000 cope with physical disability and illness. In India, the family
Cost per year

40000 support system is excellent and thus the immediate environment

30000
20000
10000
0 15% of the household income is spent on expenses related to the
0 1 2 3
HAQ score
FIG 3. Scatter plot showing the correlation between HAQ and total
cost of rheumatoid arthritis
at 7 years, 1.25 at 12 years and 1.5 at 18 years of disease.16–18 Thus
our patients have comparable physical disability. However, when
individual patients are followed up over time there is considerable
variation seen in an individual’s HAQ score17 as HAQ-DI is a
composite measurement of disability resulting from damage and
activity of the disease. Thus, longitudinal studies provide a better
measure of outcome.
In SF-36 scores, physical domains were more affected compared
with mental health domains. SF-36 has been previously used in
India on 40 patients with RA to measure QOL and mental health
scores were found to be much higher than physical function
scores; however, that study included a very select group of
patients with RA enrolled for an anti-tumour necrosis factor
agent trial.19 Another study from India involving patients with
RA but using the WHO QOL-Bref scale made a similar
observation, i.e. better scores on psychological, emotional and
environmental domains as compared with physical domains.20
The physical domains of SF-36 had excellent correlation with
the HAQ-DI score, suggesting that both scales measure similar
physical disability. The good correlation of social and emotional
functioning with HAQ-DI score suggests that these components
of health are influenced by physical disability. However, the
summary score for the domains of mental health, energy and
vitality were significantly higher than physical domain scores and
did not show any correlation with HAQ-DI in contrast to a study
from the UK.8 Similar observations have been made in Parkinson
disease using a disease-specific QOL scale21 and in systemic lupus
of the patient is supportive. This may partly explain the good
mental scores. Another reason could be a reluctance to express
their feelings, which can also explain the narrow dispersion in
mental health, vitality and general health scores.
Spending nearly Rs 17 000 annually on RA means that almost
disease. Direct costs constituted two-thirds of the total costs. In
the West, indirect costs are more than the direct costs due to loss
of wages, home help, etc.23 In India, as most patients are either
homemakers or men working in a joint family business or
government jobs, loss of wages is not a major contributor to the
cost of RA. In the only study21 available, in Parkinson disease,
the annual expenditure was reported to be Rs 7372. This difference
could be due to a difference in treatment for the two diseases as
well as the lower average annual income of those patients compared
with our group (Table II).
In most studies from the West, the cost of RA increases with the
duration of the disease due to accumulation of damage.23 In
contrast, we did not find any association with duration of the
disease, as most patients could not afford joint replacement,
special devices, biological agents, etc. A correlation has also been
found between healthcare costs and SF-36/HAQ-DI scores.23 This
is due to an increase in visits to the physician, hospitalization and
drug costs with increasing disability. However, due to a ceiling
effect on spending related to low income of the family we did not
find a good correlation between HAQ and cost of treatment.
Our study has a few limitations. First, it is a cross-sectional
study and HAQ and SF-36 can change over a period of time with
control of disease activity. Second, SF-36 has not been validated
in our population as an instrument for QOL. Third, the direct and
indirect cost calculations are at best a rough estimate. Furthermore,
our patient population consists of middle class people, so these
data may not be applicable to the general population.
Thus, RA causes significant disability in all domains of health.
Indian patients have better scores on mental health, probably due
to a better family support system. Due to a low income, most
patients cannot afford the current state-of-the-art treatment. Early
effective treatment may not only postpone and retard disease
progression, thereby improving the QOL, but also decrease costs

TABLE II. Comparison of costs in rupees between patients with rheumatoid arthritis (RA) and Parkinson disease21
Item Our study in RA (n=101) (mean+SD) Ray et al.21 on Parkinson disease
(n=32) (mean+SD)
Average annual income 138 533+74 397 (125 420–151 650) 67 356+44 088
<Rs 60 000 10% 44%
Rs 60 000–120 000 36% 47%
>Rs 120 000 54% 09%
Average annual expenditure on treatment
Direct 11 617+10 415 (9788–13 446) 7392+4320
Medicines 9179+9361 (7529–10 830) —
Investigations 1974+1989 (1623–2325) —
Hospital registration 100 —
Hospitalization 456+2002 (103–809) —
Indirect 5141+17 233 (2115–8168) —
Total 16 758+22 200 (12 971–20 812) —

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 AGGARWAL et al. : PHYSICAL, PSYCHOSOCIAL AND ECONOMIC IMPACT OF RHEUMATOID ARTHRITIS 191

by preserving productivity and reducing the need for surgery and
admission to hospital. Data are beginning to accumulate on the
excess costs associated with biological therapies and other new
second-line drugs. There is a need to analyse the economic impact
of RA in India in a larger sample size, so that policy-makers can
provide ways to optimize the treatment of patients with RA.
ACKNOWLEDGEMENT
We acknowledge the technical help of Ms Catherine T. Schentag, Research
Associate, Centre for Prognosis Studies in Rheumatic Diseases, Toronto
Western Hospital, 399 Bathurst Street, Ontario, Canada M5T 2S8 in
calculating SF-36 scores.
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Obituaries
Many doctors in India practise medicine in difficult areas under trying
circumstances and resist the attraction of better prospects in western
countries and in the Middle East. They die without their contributions to our
country being acknowledged.
The National Medical Journal of India wishes to recognize the efforts of
these doctors. We invite short accounts of the life and work of a recently
deceased colleague by a friend, student or relative. The account in about
500 to 1000 words should describe his or her education and training and
highlight the achievements as well as disappointments. A photograph
should accompany the obituary.
—Editor

02_19_4_OA.pmd 191 4/19/2007, 5:04 PM

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