ARTICLE IN PRESS

Social Science & Medicine 64 (2007) 24432453

www.elsevier.com/locate/socscimed

The quality of life, mental health, and perceived stigma of

leprosy patients in Bangladesh
Atsuro Tsutsumia,e,, Takashi Izutsub, Akramul Md Islamc, A.N. Maksudad,
Hiroshi Katoa, Susumu Wakaie
a

Hyogo Institute for Traumatic Stress, Kobe, Japan

Department of Forensic Psychiatry, National Institute of Mental Health, National Center of Neurology and Psychiatry, Tokyo, Japan
c
BRAC, Dhaka, Bangladesh
d
National Leprosy Institute and Hospital Compound, Dhaka, Bangladesh
e
Department of International Community Health, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan
Available online 26 March 2007

Abstract
The present study aims to determine the quality of life (QOL) and general mental health of leprosy patients compared
with the general population, and evaluate contributing factors such as socio-economic characteristics and perceived
stigma. A total of 189 patients (160 outpatients, 29 inpatients) and 200 controls without leprosy or other chronic diseases
were selected from Dhaka district, Bangladesh, using stratied random sampling. A Bangladeshi version of a structured
questionnaire including socio-demographic characteristicsthe Bangla version of the World Health Organization Quality
of Life Assessment BREF (WHOQOL-BREF)was used to assess QOL; a Self-Reporting Questionnaire (SRQ) was used
to evaluate general mental health; the Barthel Index to control activities of daily living (ADL); and the authors Perceived
Stigma Questionnaire was used to assess perceived stigma of patients with leprosy. Medical records were examined to
evaluate disability grades and impairment. QOL and general mental health scores of leprosy patients were worse than
those of the general population. Multiple regression analysis revealed that factors potentially contributing to the
deteriorated QOL of leprosy patients were the presence of perceived stigma, fewer years of education, the presence of
deformities, and a lower annual income. Perceived stigma showed the greatest association with adverse QOL. We conclude
that there is an urgent need for interventions sensitive to the effects of perceived stigma, gender, and medical conditions to
improve the QOL and mental health of Bangladeshi leprosy patients.
r 2007 Elsevier Ltd. All rights reserved.
Keywords: Leprosy; Quality of life; Mental health; Perceived stigma; Bangladesh

Introduction

Corresponding author. Tel.: +81 78 200 3010;

fax: +81 78 200 3017.

E-mail addresses: tsutsumi@gakushikai.jp (A. Tsutsumi),
izutsu@gakushikai.jp (T. Izutsu).
0277-9536/$ - see front matter r 2007 Elsevier Ltd. All rights reserved.
doi:10.1016/j.socscimed.2007.02.014

Leprosy, a chronic infectious afiction, is a

communicable disease that poses a great risk of
permanent and progressive physical disability. The
associated visible deformities and disabilities have
contributed to the stigma and discrimination
experienced by leprosy patients (Bryceson & Pfaltz-

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A. Tsutsumi et al. / Social Science & Medicine 64 (2007) 24432453

graff, 1990; Noorden, 1995), even among those who

have been cured. Several studies have investigated
the stigma associated with leprosy by questioning
non-leprosy-affected individuals. Generally, the
attitude of the general public towards individuals
with leprosy is negative (Croft & Croft, 1998;
Gerochi, 1986; Kumaresan & Maganu, 1994a;
Qubati & Kubati, 1997; Rajaratnam, Abel, &
Arumai, 1999; Suite & Gittens, 1992; Tekle-Haimanot et al., 1992), though the extent of stigma is not
equal and differs, for example, among cultures
(Gussow, 1989). A few studies have revealed that
the stigma attached to leprosy patients by nonleprosy-affected individuals is stronger than that
attached to other stigmatized diseases such as
similar dermatological diseases, as well as epilepsy
and tuberculosis (Croft & Croft, 1998; TekleHaimanot et al., 1992). Even school teachers and
health workers lack knowledge about the cause of
leprosy, furthering unreasonable negative attitudes
(Briden & Maguire, 2003; Kumaresan & Maganu,
1994a; Rajaratnam et al., 1999). Such stigma can be
an impediment for leprosy patients seeking timely
treatment (Elissen, 1991; Kumaresan & Maganu,
1994b; Kushwah, Govila, Upadhyay, & Kushwah,
1981; Raj, Garg, & Lal, 1981).
Stigma also affects mental health and quality of
life (QOL), although relatively few studies have
examined these issues among leprosy patients.
Several studies have shown that leprosy patients
have a high prevalence of psychiatric problems
compared to the general population or patients with
other diseases (Mhasawade, 1983; Ranjit Kumar &
Verghese, 1980; Weiss et al., 1992), and Scott (2000)
stressed the increased psychosocial needs of people
with leprosy in South Africa. According to Behere
(1981), such stigma and discrimination result in a
high percentage of leprosy patients who feel
desperate and who verbalize suicidal ideas, with
some actually attempting suicide. Furthermore, it
has been shown that depression experienced by
leprosy patients is signicantly more severe as is
seen in the general population (Ranjit Kumar &
Verghese, 1980; Tsutsumi et al., 2004). However, the
relationship between stigma and mental health has
barely been elucidated, although Tsutsumi et al.
(2004) have demonstrated a relationship between
the two, with patients reporting perceived stigma
showing more severe states of depression than those
without perceived stigma. In addition to these
mental health aspects, researchers have also pointed
out that the QOL of leprosy patients and their

families is greatly affectedsocially, economically,

and psychologicallyby the stigma imposed upon
them by the general population (Bryceson &
Pfaltzgraff, 1990; Kaur & Ramesh, 1994; Noorden,
1995); however, this has not been empirically
shown. Although QOL in a wide variety of chronic
diseases has been investigated, to the best of our
knowledge, only one study has focused on leprosy
patients: Joseph and Rao (1999) reported that
individuals in India who had been cured of leprosy
had a lower QOL than the general population.
However, the sample size in this study was small
and the QOL of patients under treatment was
unclear.
In Bangladesh, the Ministry of Health announced
in 2003 that leprosy had been effectively eliminated
as a public health problem in 1998, as demonstrated
by its prevalence having decreased to less than
one case per 10,000 population. According to
this report, the current prevalence (patients
under treatment) and detection rate of leprosy in
Bangladesh are approximately 6.3 and 7.6 per
100,000 population, respectively (Ministry of
Health, Government of Bangladesh, 2003). However, only one study has examined mental health
among leprosy patients in Bangladesh (Tsutsumi
et al., 2004) and no study has documented the QOL
of leprosy patients in Bangladesh.
Therefore, this study aims to (A) determine the
QOL and general mental health of leprosy patients
compared with the general population, and (B)
evaluate the factors, including socio-economic
characteristics and perceived stigma, that contribute
to the QOL. In doing so, we explore the need to
enhance the QOL and general mental health of such
patients and suggest effective interventions to
improve these attributes.
Methods
Study design
The present study was cross-sectional in its
design. A pre-test was conducted in June 2003,
and necessary amendments made. The main study
was conducted between June and July 2003.
Respondents and data collection
This study was conducted among patients in the
Governmental Leprosy Institute and Hospital
Compound, Dhaka, and among controls selected

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from urban, rural, and slum communities in Dhaka

region using stratied random sampling based on
the latest census of Bangladesh (Bangladesh Bureau
of Statistics, 2002). Patients (both outpatients and
inpatients) gave verbal consent prior to participation; 160 of the 176 outpatients and all 29 inpatients
attending the hospital during the study period
agreed to participate. The total response rate was
92%. A total of 2934 cases of leprosy were
registered in Dhaka region at the end of 2002
(Ministry of Health, Government of Bangladesh,
2003), suggesting that the subject population in the
present study (n 189) covered over 6% of
registered patients in the region.
As a control, household surveys were conducted
in communities in Dhaka region. Two hundred
individuals reecting the distribution of the places
of residence of the patients were interviewed. Post
ofces in each area were selected as the starting
point for the household surveys and households
were visited clockwise one by one from the starting
point. Respondents, either the head of the house or
housewife, were interviewed in their house after
giving verbal consent. Individuals with a reported
history of leprosy or chronic disease were excluded.
Instruments
In addition to questions that examined sociodemographic characteristics, the World Health
Organization Quality of Life Assessment BREF
(WHOQOL-BREF) was used. The WHOQOLBREF was developed to evaluate QOL and contains
26 items divided into four domains: physical,
psychological, social relationships, and environmental (WHO, 1996, 1997). Each item uses a
5-point response scale, with higher scores indicating
a better QOL. The validity and reliability of the
Bangla version of the WHOQOL-BREF has been
previously conrmed (Izutsu et al., 2005; Tsutsumi
et al., 2006).
The Self-Reporting Questionnaire (SRQ) developed by the WHO to assess psychiatric disturbances, particularly in developing countries (WHO,
1994), was also used. Though scales developed for
Western countries are usually considered inappropriate for assessing mental health in developing
countries, the SRQ is used to scale mental health
and is sensitive to cultural differences. The SRQ
includes 20 items covering major components of
general mental health; all use a 0 (No) or 1 (Yes)
response scale, with a possible total score of

2445

between 0 and 20. Higher scores indicate a greater

disturbance of general mental health. The SRQ has
been validated in several developing countries
including Islamic countries such as Pakistan
(Husain, Gater, Tomenson, & Creed, 2006) and
the United Arab Emirates (Ghubash, Daradkeh,
El-Rufaie, & Abou-Saleh, 2001), indicating sufcient cross-cultural and content validity (WHO,
1994). The Bangladeshi version of the SRQ has been
used in other studies on mental health and QOL in
Bangladesh (Islam, Ali, Ferroni, Underwood, &
Alam, 2003; Izutsu et al., 2006).
Activities of daily living (ADL) and physical
wellbeing were examined using the Barthel Index
(Mahoney & Barthel, 1965), which has been widely
used in different cultural settings to assess and
control the impact of ADL on QOL. Studies
employing the index had yet to be published at the
time of this study in Bangladesh. Since there was no
standardized Bangladeshi version for analysis of
ADL, we employed a translation of the index; the
content of the index is universally acceptable for
comparing ADL between groups. Furthermore, a
Perceived Stigma Questionnaire (PSQ) was created
by the authors to detect self-perception of stigma
among leprosy patients; the PSQ improves on a
scale employed in a previous study in Bangladesh
(Tsutsumi et al., 2004). For example, the PSQ
includes the following items: people regard me as
strange because of my leprosy and I have been
denied from sitting next to someone because of
leprosy. Perceived stigma is wholly subjective,
reecting the way people with leprosy perceive
themselves as being stigmatized. It is different from
enacted stigma, which is related to social attitudes
and behaviours, and is a totally different concept to
instrumental and symbolic stigma, which is a social
evaluative and/or expressive as well as discriminative behaviour towards people with leprosy by those
without. The PSQ questionnaire therefore detects
the perceived stigma felt by leprosy patients
themselves, not necessarily actual stigmatization
by other people, and contains 11 items, each of
which uses a 0 (No) or 1 (Yes) response scale. The
presence of at least one afrmative answer indicates
the presence of perceived stigma. The PSQ was
administered to the patients only. The fact that
leprosy patients with perceived stigma as detected
by the PSQ showed worse QOL scores compared
with those without perceived stigma (see the
Results) indicates the discriminant validity of the
PSQ. Regarding reliability, Cronbachs a was 0.83,

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A. Tsutsumi et al. / Social Science & Medicine 64 (2007) 24432453

suggesting sufcient internal consistency, and test

retest reliability, as assessed with Pearsons productmoment correlation coefcient, was 0.83.
Information on disability grades and an understanding of the impairment of patients based on
classications dened by the WHO Expert Committee on Leprosy (WHO, 1988) were obtained
from medical records with patients permission.
All respondents answered the questionnaire
through interviews and gave verbal rather than
written consent as the literacy rate in Bangladesh is
only about 57% for males and 30% for females
(United Nations Development Program, 2002). Nine
interviewers experienced in public health elds (ve
males and four females) were recruited and, prior to
the study, trained for 1 week by the authors, mental
health professionals, a leprologist, and public health
doctor. Patients were interviewed in separate rooms
to ensure privacy. Female interviewers were principally in charge of interviewing female participants,
thus maintaining sensitivity to issues related to
gender in this country. All procedures were approved
by the ethical committee of the School of Medicine,
the University of Tokyo, Japan.
Data analysis
WHOQOL-BREF total scores and physical,
psychological, social relationships, and environmental domain subscales, and SRQ scores were
compared between patients and controls, between
patients with and without deformities, and between
patients with and without perceived stigma.
Further, multiple regression analysis of the patient
group using WHOQOL-BREF total scores as a
dependent variable was employed to reveal the
magnitude of impact of each factor (presence of
perceived stigma, years of education, presence of
deformity, yearly household income, gender, presence of leprosy reaction, and age). Given the
acknowledged existence of socio-cultural differences
between males and females in Bangladesh, all
analyses except for the standard multiple regression
analysis were performed separately for males and
females.
Results
Socio-demographic characteristics
The socio-demographic characteristics of the
respondents are shown in Table 1. No signicant

difference in age was identied between the groups

for both genders. The mean years of education of
the leprosy patients was less than that of the
controls for both genders. The median annual
family income of leprosy patients was lower than
that of the controls among males (po0.01), and
among females the literacy rate was signicantly
lower compared to controls (po0.01). A family
history of leprosy was signicantly higher among
leprosy patients than controls for both genders
(po0.01). Most patients and controls showed good
ADL, and no signicant difference was noted
between the groups in either gender; ADL was
therefore excluded from further statistical analyses.
WHOQOL-BREF and SRQ scores of patients and
controls
To compare total WHOQOL-BREF and subdomain scores plus SRQ scores between groups,
analysis of covariance (ANCOVA) was utilized
(Table 2). Years of education was used as a
covariate, since a signicant difference in the years
of education was observed. Total WHOQOL-BREF
scores among leprosy patients were signicantly
lower than among controls for both genders
(po0.01). Moreover, mean leprosy patient scores
for physical, psychological, and social relationships
domains were signicantly lower for males than
controls (po0.05). For females, total WHOQOLBREF scores, and physical and psychological
subscales were lower among leprosy patients than
controls (po0.01), but no signicant differences
were found in social relationships or environmental
domains. Conversely, male leprosy patients showed
signicantly better scores in the environmental
domain than controls (po0.05). Total SRQ scores
of the leprosy patients were signicantly higher than
those of the controls for both genders (po0.01).
WHOQOL-BREF and SRQ scores of patients with
and without deformities
Differences in total WHOQOL-BREF and subdomain scores plus SRQ scores between leprosy
patients with and without deformities are shown in
Table 3. ANCOVA with age as a covariate was
performed to analyse the scores of male patients, as
a signicant difference in age was observed between
patients with and without deformities (po0.01; data
not shown); females did not show a signicant
difference. Scores for all the above scales were

Table 1
Socio-demographic data
Male

Female

Meana/
frequencyb/
medianc

SDa/%b/1st3rd
percentilec

Meana/
frequencyb/
medianc

SDa/%b/1st3rd
percentilec

37.97
4.26

14.14
4.21

38.52
5.93

14.92
5.18

82
69

t /w /U

0.31
2.83*
0.46

68
47

Patient (n 34)

Control (n 88)

Meana/
frequencyb/
medianc

SDa/%b/1st3rd
percentilec

Meana/
frequencyb/
medianc

SDa/%b/1st3rd
percentilec

35.06
2.00

15.97
3.28

30.83
5.53

9.36
5.37

10
23

**po0.01 *po0.05.
1$ 56 Tk.
a
t-test.
b 2
w analysis.
c
MannWhitney U-test.

25,00060,000

0
113
52,000

36,000100,000

2.89*

1.45
4.40*
0.00**

53
35

0.00*
17
134
41,000

ta/w2b/Uc

0.00*
5
28
57,000

36,00096,000

1
86
60,000

36,000144,000

0.73

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Agea
Years of educationa
Literacyb
Literate
Illiterate
Family history of
leprosyb
With history
Without history
Yearly family
income (Tk)c

Control (n 115)

2b

A. Tsutsumi et al. / Social Science & Medicine 64 (2007) 24432453

Patient (n 154)

2447

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Table 2
WHOQOL-BREF and SRQ scores of leprosy patients and controls
Male

WHOQOL-BREF total
Physical
Psychological
Social relationships
Environmental
SRQ

Female

Patient (n 154)

Control (n 115)

Meana

SD

Meana

SD

78.61
11.43
11.86
13.85
12.53

12.47
2.67
2.59
2.47
1.75

86.64
14.14
13.79
14.58
12.00

12.49
2.67
2.60
2.47
1.76

9.15

4.44

6.29

4.45

Patient (n 34)

Control (n 88)

Meana

SD

Meana

SD

26.84**
66.96**
36.06**
5.61*
5.86*

74.21
10.06
11.12
14.35
12.51

11.84
2.56
2.65
2.27
1.91

91.09
15.27
13.61
15.10
13.06

11.58
2.50
2.59
2.22
1.87

48.44**
98.75**
21.07**
2.57
2.02

26.82**

10.83

4.16

5.98

4.07

32.44**

ANCOVA was used with years of education as a covariate. **po0.01, *po0.05.

n 153 in the social relationships of male patients due to missing data.
WHOQOL-BREF World Health Organization Quality of Life Assessment BREF; SRQ Self-Reporting Questionnaire.
a
Estimated mean.

Table 3
WHOQOL-BREF and SRQ scores of leprosy patients with and without deformities
Male

WHOQOL-BREF total
Physical
Psychological
Social relationships
Environmental
SRQ

Female

With deformity
(n 56)

Without deformity
(n 97)

Meana

SD

Meana

SD

74.98
10.75
11.23
13.20
12.20

9.69
1.99
2.01
1.98
1.30

83.20
12.33
12.57
14.71
12.94

16.93
3.48
3.50
3.44
2.28

9.91

3.43

8.35

6.00

With deformity
(n 18)

Without deformity
(n 16)

Mean

SD

Mean

SD

14.17**
12.41**
8.75**
11.46**
6.37*

69.28
8.73
10.22
14.11
12.17

11.65
2.94
2.92
2.41
1.49

77.13
11.18
11.54
14.21
12.56

14.89
3.12
2.88
2.57
2.37

4.10*

11.78

4.10

10.50

5.24

1.70
2.36*
1.33
0.11
0.58
0.79

Male: ANCOVA was used with age as a covariate, female: t-test. **po0.01, *po0.05.
The total number of male patients 153 due to missing data.
The social relationships of males without deformities 96 due to missing data.
WHOQOL-BREF World Health Organization Quality of Life Assessment BREF; SRQ Self-Reporting Questionnaire.
a
Estimated mean.

signicantly more severe for male leprosy patients

with deformities than those without (po0.05). In
females, physical domain scores for patients with
deformities were signicantly lower than for those
without (po0.05). The mean scores of the other
scales tended to be worse for leprosy patients with
deformities than for those without, although they
were not signicantly different (po0.1 for all).
WHOQOL-BREF and SRQ scores of patients with
and without perceived stigma
Differences in total WHOQOL-BREF and subdomain scores plus SRQ scores were also compared

between leprosy patients with and without perceived

stigma. For males, ANCOVA with age as a
covariate was used to control for differences in
age (po0.01; data not shown). In all scales, patients
without perceived stigma had signicantly
better scores than those with stigma among males
(Table 4). For females, the t-test revealed signicantly lower total WHOQOL-BREF scores, and
physical and psychological subdomain scores
among patients with perceived stigma compared to
those without. Environmental subdomain and SRQ
scores of female leprosy patients with perceived
stigma tended to be more severe than those of
patients without (po0.1).

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Table 4
WHOQOL-BREF and SRQ scores of leprosy patients with and without perceived stigma
Male

Female

With stigma (n 67) Without stigma (n 87) F

With stigma (n 17) Without stigma (n 17) t

Meana

Mean

WHOQOL-BREF total 70.60

Physical
9.70
Psychological
10.25
Social relationships 13.09
Environmental
11.83
SRQ

11.53

SD

Meana

SD

11.42
2.32
2.37
2.62
1.65

83.59
12.56
12.83
14.27
12.95

11.29
2.29
2.35
2.60
1.64

4.31

7.68

4.25

SD

Mean

SD

48.12** 66.76
56.78** 8.71
44.07** 9.76
7.57** 13.80
16.84** 11.74

11.92
2.52
2.53
2.60
1.90

79.18
11.06
11.92
14.51
12.97

12.68
3.48
2.98
2.32
1.82

29.73** 12.65

4.11

9.71

4.79

2.94**
2.26*
2.28*
0.84
1.94y
1.92y

Male: ANCOVA putting the age as a covariate, female: t-test. **po0.01, *po0.05, ypo0.1.
The total number of male leprosy patients 153 due to missing data.
Social relationships of males without perceived stigma 86 due to missing data.
WHOQOL-BREF World Health Organization Quality of Life Assessment BREF; SRQ Self-Reporting Questionnaire.
a
Estimated mean.

Discussion

Table 5
Multiple regression analysis of WHOQOL-BREF scores
Variables

Presence of perceived stigma

Years of education
Presence of deformity
Yearly household income
Gender
Presence of leprosy reaction
Age

0.40**
0.24**
0.18**
0.14*
0.11
0.08
0.07

R2
Adjusted R2

0.41
0.39

Standard multiple regression analysis. **po0.01, *po0.05.

WHOQOL-BREF World Health Organization Quality of
Life Assessment BREF. Presence (0 No, 1 Yes), gender
(0 male, 1 female).

Multiple regression analysis of WHOQOL-BREF

scores
To explore the factors contributing to WHOQOL-BREF scores, standard multiple regression
analysis was performed (Table 5). Factors associated with decreased QOL were the presence of
perceived stigma, fewer years of education, the
presence of deformities, and a lower annual income.
Gender, the presence of a leprosy reaction, and age
were not related to QOL. The presence of perceived
stigma showed the greatest association with more
adverse QOL.

In this study, the QOL and general mental health

condition of leprosy patients were compared with
those of the general population with respect to
socio-economic characteristics, the presence of
deformities, and perceived stigma.
Regarding socio-economic status, signicant differences were observed in years of education,
literacy, family history of leprosy, and annual
household income between the two groups. These
differences were also found in a past study
(Tsutsumi et al., 2004), implying that leprosy
patients have a more severe social situation than
the general population. As observed in the current
study, leprosy is a social disease that continues to
deprive inicted individuals with the opportunity of
education, work, and so on.
Leprosy patients had signicantly worse total
QOL scores as well as lower physical and psychological domain scores than the general population
for both genders, and the physical domain scores of
female patients were much lower than those of their
counterpart. According to the WHO (1997), the
physical domain of WHOQOL-BREF aims to
assess the extent to which energy and fatigue, pain
and discomfort, and sleep and rest are perceived.
Therefore, the presence of physical deformities and,
moreover, the fact that these deformities resulted
from leprosy might have had a double impact on the
physical domain scores, lowering them regardless of
actual physical ability. In contrast, as an objective

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index of physical ability, there was no difference in

ADL between groups in both genders, which might
suggest that even though they are not satised with
their physical condition, their deformities do not
affect their actual physical morbidity. Moreover, for
women, living in purdah might save them from
having to expose their deformities in public, having
a positive effect on the enacted stigma. However,
this does not prevent perceived stigma related to
their family life and degraded self-image.
The social relationships domain scores of the
leprosy patients were worse than those of the
general population among males but not females.
A possible reason for this gender difference is the
cultural limitations placed on the social relationships of females in Bangladesh: the Bangladeshi
Gender Development Index (GDI) is 0.47, ranking
it 121 out of 146 countries (United Nations
Development Program, 2002). Thus, the social
relationships of males might be more impacted by
leprosy as males have more active relationships
within society; on the other hand, female relationships are restricted in Bangladesh and, therefore, the
social relationships domain may be consistent
regardless of whether they have the disease or not.
Concerning the environmental domain, leprosy
patients showed better scores than controls among
males. This may be because, as previously reported,
the scores for satisfaction with accessibility to
health services and satisfaction with transport
were higher. These scores might have been better in
male patients for a number of reasons; for example,
patients with leprosy have free access to good health
services and medical treatment in Bangladesh,
potentially contributing to increased satisfaction.
However, although applicable to Bangladesh, this is
not necessarily the case in all countries affected by
this disease, depending largely on cultural and
health system differences between countries.
Second, males in the general community often
commute to work in heavy trafc, leading to much
dissatisfaction compared to leprosy patients who
are often unemployed (Tsutsumi et al., 2004) and
thus do not generally have to negotiate such
transportation problems. Further, most females
have even less opportunity to commute regardless
of whether they have the disease or not (Tsutsumi
et al., 2006). However, since there may be other
contributing factors, future studies are necessary.
Analysis of QOL scores between leprosy patients
with and without deformities revealed that male
patients with deformities had worse total QOL and

subdomain scores than those without. Conversely,

there were no signicant differences among female
patients except for in the physical domain, which
was worse for patients with deformities. This is
consistent with a previous study conducted in India
(Joseph & Rao, 1999), which noted that the total
WHOQOL-BREF scores of deformed patients were
lower than those of non-deformed patients among
males but not females. And, although the difference
was not signicant among females, mean scores of
all domains for leprosy patients with deformities
were lower than those of patients without. Further
study focusing on this point is, however, needed.
Additionally, leprosy patients showed signicantly worse general mental health than the controls
in both genders, which is consistent with previous
studies (Behere, 1981; Ranjit Kumar & Verghese,
1980; Tsutsumi et al., 2004; Weiss et al., 1992).
However, these earlier studies predominantly relied
on Western diagnoses or scales, which could have
had limitations with respect to their socio-cultural
validity in developing countries. Symptoms related
to mental health show diverse forms across cultures;
therefore, the outcomes obtained with the SRQ,
which was originally developed in developing
countries and for which validity and reliability are
established in developing countries, are more
relevant. Indeed, among leprosy patients, general
mental health status was worse in patients with
deformities compared to those without.
These results suggest that QOL and mental health
interventions or support are needed for Bangladeshi
leprosy patients. Elimination of leprosy as a public
health problem (a prevalence of less than one per
10,000 population) has effectively been achieved in
Bangladesh; however, interventions for individual
leprosy patients are now required. Previous studies
have reported that psychosocial interventions have
been effective in improving the QOL of cancer
(Rehse & Pukrop, 2003) and schizophrenia patients
(Bechdolf et al., 2003). In the present study, the
SRQ scores were highly correlated with total QOL
scores and physical and psychological domain
scores (data not shown). In this regard, it is assumed
that psychological interventions for leprosy patients
would also help to improve their QOL. Additionally, some studies have shown that social support
improved the QOL of patients with cancer, stigmatized diseases such as human immunodeciency
virus/acquired immunodeciency syndrome (HIV/
AIDS), schizophrenia, and chronic diseases such
as rheumatoid arthritis (Bechdolf et al., 2003;

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Minnock, Fitzgerald, & Bresnihan, 2003; Parker,

Baile, Moor, & Cohen, 2003; Remor, 2002).
Thus, to enhance the QOL and mental health of
leprosy patients, interventions that are gender- and
medical condition-sensitive, such as psychosocial
interventions and social support building, are
required. In these interventions, the deployment of
mental health professionals or social workers in
leprosy hospitals, education of leprosy doctors
regarding mental health issues (including counselling skills and medication), and the establishment
of self-help groups for social support building might
be effective in improving mental health status and
thus QOL.
Approximately half of the subject patients had
perceived stigma. These results are similar to the
outcome of a study on epilepsy, which reported that
approximately 50% of patients had perceived
stigma (Baker, Brooks, Buck, & Jacoby, 2000). In
the present study, male leprosy patients with
perceived stigma showed worse total QOL scores,
subdomain scores, and general mental health than
those without. Similar results were observed for
femalesexcept in their social relationships
scoresbut as noted earlier, the cultural limitations
of females in Bangladesh probably decreased their
social relationships irrespective of perceived stigma.
Though negative relationships between perceived
stigma and depressive status have already been
explored regarding leprosy (Tsutsumi et al., 2004),
the present study revealed that perceived stigma is
also associated with decreased QOL and the general
mental health status of such individuals.
In the multiple regression analysis, years of
education and annual household income as well as
the presence of deformities and perceived stigma
were signicantly associated with adverse QOL
among the leprosy patients. Fewer years of education and a low annual household income may be
universally associated with QOL. Perceived stigma
was shown to contribute the most to the lower QOL
of the leprosy patients. This study showed perceived
stigma had signicant adverse impact on the QOL
of the people with leprosy. In a study from Nepal,
leprosy patients with perceived stigma had delayed
access to health services resulting in an increased
risk of disability and less adherence to compliance
(Floyd-Richard & Gurung, 2000; Hyland, 1993).
A similar outcome was observed in epilepsy
patients, whose perceived stigma was seen to be
associated with a low compliance and lowered selfefcacy in managing their disease (DiIorio et al.,

2451

2003). This may indicate that low QOL can decrease

capacity and rational judgement, and could affect
treatment compliance, implying that interventions
focusing on perceived stigma are required.
The Stigma Elimination Programme (STEP) implemented in Nepal increased social participation of
leprosy patients (Cross & Choudhary, 2005a,
2005b), and could therefore, with appropriate
cultural modication, help improve the QOL of
such individuals in Bangladesh.
The present study had the following limitations:
(A) It was cross-sectional and could not reveal
cause-and-effect relationships. To improve the
demoralizing situation associated with leprosy,
factors contributing to worsened QOL and
mental health with regards to perceived stigma
should be elucidated using a prospective longitudinal study.
(B) The patients in this study were enrolled from
just one hospital in Dhaka. However, as this is
the only national hospital in Dhaka and as it
plays a central role in the leprosy elimination
programme in this area, most registered patients in Dhaka attend this hospital. In addition, we interviewed most patients attending the
hospital, accounting for more than 6% of the
registered patients in Dhaka during the research
period. Regarding applicability to other settings, culture, ethnicity, spoken language, and
life surroundings greatly differ among districts
in Bangladesh, and therefore, though the
subjects of this study are not necessarily
representative of the whole of Bangladesh, they
are at least representative of Dhaka region. We
can also assume that rural areas are more
conservative than urban areas and that stigma
against leprosy exists, with the situation in rural
areas likely being worse than in urban areas.
(C) It is possible that the controls had leprosy;
however, if this were true, their QOL would be
worse not better, and would thus not affect
the outcomes of this study. Moreover, overall,
the difference in QOL scores between the
patients and controls was clearly evident, and,
therefore, it is assumed that the results of this
study are valid.
Conclusion
As far as we know, this is the rst study to
determine the severe QOL and mental health status

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2452

A. Tsutsumi et al. / Social Science & Medicine 64 (2007) 24432453

of leprosy patients in Bangladesh and the association with perceived stigma, showing for the rst
time that perceived stigma adversely impacts on the
QOL of people with leprosy. The ndings suggest
that measures to address this should include
interventions to improve QOL and mental care,
focusing on gender, perceived stigma, and physical
conditions such as deformity. Specic and practical
countermeasures should be investigated in further
research aimed at overcoming the limitations of this
study.
Acknowledgements
The authors would like to express their gratitude
to Dr. Hadi and the interviewers Abu Ala Mahmudul Hasan, Anjuman Tahmina Ferdous, Imran Al
Amin, Jasmin Khan, Khadiza Begum, Md. Saiful
Islam, Shormin Sultana, Zahangir Alam, and Md.
Iqbal Hossain for their enormous contribution to
the data collection.
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