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Social Science & Medicine 64 (2007) 24432453

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

aHyogo Institute for Traumatic Stress, Kobe, JapanbDepartment of Forensic Psychiatry, National Institute of Mental Health, National Center of Neurology and Psychiatry, Tokyo, Japan

cBRAC, Dhaka, BangladeshdNational Leprosy Institute and Hospital Compound, Dhaka, Bangladesh

eDepartment 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 stratified 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 usedto 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

Leprosy, a chronic infectious affliction, 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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doi:10.1016/j.socscimed.2007.02.014

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

fax: +81 78 2003017.

E-mail addresses: [email protected] (A. Tsutsumi),

[email protected] (T. Izutsu).
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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-Haima-

not 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 non-

leprosy-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; Tekle-

Haimanot et al., 1992). Even school teachers andhealth 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), andScott (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 significantly 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 chronicdiseases 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 thanone 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). How-

ever, 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 theQOL 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 stratified random sampling based on

the latest census of Bangladesh (Bangladesh Bureau

of Statistics, 2002). Patients (both outpatients and

inpatients) gave verbal consent prior to participa-

tion; 160 of the 176 outpatients and all 29 inpatientsattending 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 reflecting the distribution of the places

of residence of the patients were interviewed. Postoffices 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 socio-demographic characteristics, the World Health

Organization Quality of Life Assessment BREF

(WHOQOL-BREF) was used. The WHOQOL-

BREF was developed to evaluate QOL and contains

26 items divided into four domains: physical,

psychological, social relationships, and environ-

mental (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 confirmed (Izutsu et al., 2005; Tsutsumi

et al., 2006).

The Self-Reporting Questionnaire (SRQ) deve-

loped by the WHO to assess psychiatric distur-

bances, particularly in developing countries (WHO,

1994), was also used. Though scales developed for

Western countries are usually considered inap-

propriate 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

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 suffi-

cient 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 thetime 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 asstrange because of my leprosy and I have been

denied from sitting next to someone because of

leprosy. Perceived stigma is wholly subjective,

reflecting 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 discrimina-

tive 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 affirmative 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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suggesting sufficient internal consistency, and test

retest reliability, as assessed with Pearsons product-

moment correlation coefficient, was 0.83.

Information on disability grades and an under-

standing of the impairment of patients based on

classifications defined by the WHO Expert Com-mittee 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 fields (five

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 roomsto ensure privacy. Female interviewers were princi-

pally 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 environ-mental 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, pre-

sence 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 significant

difference in age was identified 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 (po

0.01), andamong females the literacy rate was significantly

lower compared to controls (po0.01). A family

history of leprosy was significantly higher among

leprosy patients than controls for both genders

(po0.01). Most patients and controls showed good

ADL, and no significant 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 sub-

domain scores plus SRQ scores between groups,

analysis of covariance (ANCOVA) was utilized

(Table 2). Years of education was used as a

covariate, since a significant difference in the years

of education was observed. Total WHOQOL-BREF

scores among leprosy patients were significantly

lower than among controls for both genders

(po0.01). Moreover, mean leprosy patient scores

for physical, psychological, and social relationships

domains were significantly lower for males thancontrols (po0.05). For females, total WHOQOL-

BREF scores, and physical and psychological

subscales were lower among leprosy patients than

controls (po0.01), but no significant differences

were found in social relationships or environmental

domains. Conversely, male leprosy patients showed

significantly better scores in the environmental

domain than controls (po0.05). Total SRQ scores

of the leprosy patients were significantly 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 sub-

domain 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 significant difference in age was observed between

patients with and without deformities (po0.01; data

not shown); females did not show a significant

difference. Scores for all the above scales were

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Table 1

Socio-demographic data

Male Female

Patient (n 154) Control (n 115) ta/w2b/Uc Patient (n 34) Con

Meana/

frequencyb/

medianc

SDa/%b/1st3rd

percentilecMeana/

frequencyb/

medianc

SDa/%b/1st3rd

percentilecMeana/

frequencyb/

medianc

SDa/%b/1st3rd

percentilecMe

freq

med

Agea 37.97 14.14 38.52 14.92 0.31 35.06 15.97 30.8

Years of educationa 4.26 4.21 5.93 5.18 2.83* 2.00 3.28 5.53

Literacyb 0.46

Literate 82 68 10 53

Illiterate 69 47 23 35

Family history of

leprosyb0.00*

With history 17 0 5 1

Without history 134 113 28 86

Yearly family

income (Tk)c41,000 25,00060,000 52,000 36,000100,000 2.89* 57,000 36,00096,000 60,0

**po0.01 *po0.05.

1$ 56Tk.at-test.bw2 analysis.cMannWhitneyU-test.

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significantly more severe for male leprosy patients

with deformities than those without (po0.05). In

females, physical domain scores for patients with

deformities were significantly 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 significantly different (po0.1 for all).

WHOQOL-BREF and SRQ scores of patients with

and without perceived stigma

Differences in total WHOQOL-BREF and sub-

domain 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 significantly

better scores than those with stigma among males

(Table 4). For females, the t-test revealed signifi-

cantly 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 3

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

Male Female

With deformity

(n 56)

Without deformity

(n 97)

F With deformity

(n 18)

Without deformity

(n 16)

t

Meana SD Meana SD Mean SD Mean SD

WHOQOL-BREF total 74.98 9.69 83.20 16.93 14.17** 69.28 11.65 77.13 14.89 1.70

Physical 10.75 1.99 12.33 3.48 12.41** 8.73 2.94 11.18 3.12 2.36*

Psychological 11.23 2.01 12.57 3.50 8.75** 10.22 2.92 11.54 2.88 1.33

Social relationships 13.20 1.98 14.71 3.44 11.46** 14.11 2.41 14.21 2.57 0.11

Environmental 12.20 1.30 12.94 2.28 6.37* 12.17 1.49 12.56 2.37 0.58

SRQ 9.91 3.43 8.35 6.00 4.10* 11.78 4.10 10.50 5.24 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.aEstimated mean.

Table 2

WHOQOL-BREF and SRQ scores of leprosy patients and controls

Male Female

Patient (n 154) Control (n 115) F Patient (n 34) Control (n 88) F

Meana SD Meana SD Meana SD Meana SD

WHOQOL-BREF total 78.61 12.47 86.64 12.49 26.84** 74.21 11.84 91.09 11.58 48.44**

Physical 11.43 2.67 14.14 2.67 66.96** 10.06 2.56 15.27 2.50 98.75**

Psychological 11.86 2.59 13.79 2.60 36.06** 11.12 2.65 13.61 2.59 21.07**

Social relationships 13.85 2.47 14.58 2.47 5.61* 14.35 2.27 15.10 2.22 2.57

Environmental 12.53 1.75 12.00 1.76 5.86* 12.51 1.91 13.06 1.87 2.02

SRQ 9.15 4.44 6.29 4.45 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.aEstimated mean.


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Multiple regression analysis of WHOQOL-BREF

scores

To explore the factors contributing to WHO-

QOL-BREF scores, standard multiple regression

analysis was performed (Table 5). Factors asso-

ciated 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.

Discussion

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, significant dif-

ferences 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 inflicted individuals with the opportunity of

education, work, and so on.

Leprosy patients had significantly worse total

QOL scores as well as lower physical and psycho-

logical 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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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 SD Meana SD Mean SD Mean SD

WHOQOL-BREF total 70.60 11.42 83.59 11.29 48.12** 66.76 11.92 79.18 12.68 2.94**

Physical 9.70 2.32 12.56 2.29 56.78** 8.71 2.52 11.06 3.48 2.26*

Psychological 10.25 2.37 12.83 2.35 44.07** 9.76 2.53 11.92 2.98 2.28*

Social relationships 13.09 2.62 14.27 2.60 7.57** 13.80 2.60 14.51 2.32 0.84

Environmental 11.83 1.65 12.95 1.64 16.84** 11.74 1.90 12.97 1.82 1.94y

SRQ 11.53 4.31 7.68 4.25 29.73** 12.65 4.11 9.71 4.79 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.

Table 5

Multiple regression analysis of WHOQOL-BREF scores

Variables b

Presence of perceived stigma 0.40**

Years of education 0.24**

Presence of deformity 0.18**

Yearly household income 0.14*

Gender 0.11

Presence of leprosy reaction 0.08Age 0.07

R2 0.41

AdjustedR2 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).


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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 satisfied with

their physical condition, their deformities do not

affect their actual physical morbidity. Moreover, for

women, living in purdah might save them fromhaving 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 relation-

ships of females in Bangladesh: the Bangladeshi

Gender Development Index (GDI) is 0.47, ranking

it 121 out of 146 countries (United NationsDevelopment 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 relation-

ships 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 tohealth 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 traffic, 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 significant 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 totalWHOQOL-BREF scores of deformed patients were

lower than those of non-deformed patients among

males but not females. And, although the difference

was not significant 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 signifi-

cantly 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 withdeformities 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. Addition-

ally, some studies have shown that social support

improved the QOL of patients with cancer, stigma-

tized diseases such as human immunodeficiency

virus/acquired immunodeficiency 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, arerequired. In these interventions, the deployment of

mental health professionals or social workers in

leprosy hospitals, education of leprosy doctors

regarding mental health issues (including counsel-

ling 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 perceivedstigma (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 beenexplored 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 significantly associated with adverse QOL

among the leprosy patients. Fewer years of educa-

tion 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 significant 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 self-

efficacy in managing their disease (DiIorio et al.,

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) imple-

mented in Nepal increased social participation ofleprosy patients (Cross & Choudhary, 2005a,

2005b), and could therefore, with appropriate

cultural modification, 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 longi-tudinal 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 pa-

tients in Dhaka attend this hospital. In addi-

tion, 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 set-tings, 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 first study to

determine the severe QOL and mental health status

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of leprosy patients in Bangladesh and the associa-

tion with perceived stigma, showing for the first

time that perceived stigma adversely impacts on the

QOL of people with leprosy. The findings 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. Specific 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 Mahmu-

dul Hasan, Anjuman Tahmina Ferdous, Imran Al

Amin, Jasmin Khan, Khadiza Begum, Md. SaifulIslam, Shormin Sultana, Zahangir Alam, and Md.

Iqbal Hossain for their enormous contribution to

the data collection.

References

Baker, G. A., Brooks, J., Buck, D., & Jacoby, A. (2000). The

stigma of epilepsy: A European perspective. Epilepsia, 41,

98104.

Bangladesh Bureau of Statistics. (2002). Statistical yearbook of

Bangladesh (21st ed.). Dhaka: Government of Bangladesh.

Bechdolf, A., Klosterkotter, J., Hambrecht, M., Knost, B.,

Kuntermann, C., Schiller, S., et al. (2003). Determinants of

subjective quality of life in post acute patients with schizo-

phrenia. European Archives of Psychiatry and Clinical

Neuroscience, 253, 228235.

Behere, B. P. (1981). Psychological reaction to leprosy. Leprosy in

India, 53, 266272.

Briden, A., & Maguire, E. (2003). An assessment of knowledge

and attitude towards leprosy/Hansens disease amongst

healthcare workers in Guyana. Leprosy Review, 74, 154162.

Bryceson, A., & Pfaltzgraff, R. E. (1990). Leprosy (3rd ed.).

New York: Churchill Livingstone.

Croft, R. P., & Croft, R. A. (1998). Knowledge, attitude and

practice regarding leprosy and tuberculosis in Bangladesh.Leprosy Review, 70, 3442.

Cross, H., & Choudhary, R. (2005a). STEP: An intervention to

address the issue of stigma related to leprosy in Southern

Nepal.Leprosy Review, 76, 316324.

Cross, H., & Choudhury, R. (2005b). Self care: A catalyst for

community development. The Asia Pacific Disability Rehabi-

litation Journal, 16, 100114.

DiIorio, C., Osborne, S. P., Letz, R., Henry, T., Schomer, D. L.,

Yeager, K., et al. (2003). The association of stigma with self-

management and perceptions of health care among adults

with epilepsy. Epilepsy and Behavior, 4, 259267.

Elissen, M. C. (1991). Beliefs of leprosy patients about their

illness. A study in the province of South Sulawesi, Indonesia.

Tropical and Geographical Medicine, 43, 379382.

Floyd-Richard, M., & Gurung, S. (2000). Stigma reduction

through group counselling of persons affected by leprosyA

pilot study. Leprosy Review, 71, 499504.

Gerochi, L. N. (1986). Knowledge, beliefs and attitudes on

leprosy in Iloilo City, Philippines. Southeast Asian Journal of

Tropical Medicine and Public Health, 17, 422426.

Ghubash, R., Daradkeh, T., El-Rufaie, O. F., & Abou-Saleh, M.T. (2001). A comparison of the validity of two psychiatric

screening questionnaires: The Arabic General Health Ques-

tionnaire (AGHQ) and Self-Reporting Questionnaire (SRQ-

20) in UAE, using Receiver Operating Characteristics (ROC)

analysis.European Psychiatry, 16, 122126.

Gussow, Z. (1989). Leprosy, racism, and public health: Social

policy in chronic disease control. Boulder: Westview Press.

Husain, N., Gater, R., Tomenson, B., & Creed, F. (2006).

Comparison of the Personal Health Questionnaire and the

Self Reporting Questionnaire in rural Pakistan. Journal of the

Pakistan Medical Association, 56, 366370.

Hyland, J. A. (1993). A socio-cultural study of leprosy in Nepal:

compliance, patient illness career patterns, and health

education. Ph.D. dissertation, University of Tasmania.Islam, M. M., Ali, M., Ferroni, P., Underwood, P., & Alam, M.

F. (2003). Prevalence of psychiatric disorders in an urban

community in Bangladesh. General Hospital Psychiatry, 25,

353357.

Izutsu, T., Tsutsumi, A., Islam, A., Kato, S., Wakai, S., &

Kurita, H. (2006). Mental health, quality of life, and

nutritional status of adolescents in Dhaka, Bangladesh:

Comparison between an urban slum and non-slum area.

Social Science & Medicine, 63, 14771488.

Izutsu, T., Tsutsumi, A., Islam, A., Matsuo, Y., Yamada, H. S.,

Kurita, H., et al. (2005). Validity and reliability of the Bangla

version of WHOQOL-BREF on an adolescent population in

Bangladesh.Quality of Life Research, 14, 17831789.

Joseph, G. A., & Rao, S. (1999). Impact of leprosy on the

quality of life. Bulletin of World Health Organization, 77,

515517.

Kaur, H., & Ramesh, V. (1994). Social problems of woman

leprosy patientsA study conducted at two urban area

leprosy centres in Delhi. Leprosy Review, 65, 361375.

Kumaresan, J. A., & Maganu, E. T. (1994a). Knowledge and

attitude of health workers towards leprosy in north-western

Botswana. East African Medical Journal, 71, 366367.

Kumaresan, J. A., & Maganu, E. T. (1994b). Socio-cultural

dimensions of leprosy in north-western Botswana. Social

Science & Medicine, 39, 537541.

Kushwah, S. S., Govila, A. K., Upadhyay, S., & Kushwah, J.

(1981). A study of social stigma among leprosy patientsattending leprosy clinics in Gwalior. Leprosy in India, 53,

221225.

Mahoney, F. I., & Barthel, D. W. (1965). Functional evaluation;

The Barthel index. Maryland State Medical Journal, 14,

6165.

Mhasawade, B. C. (1983). LeprosyA case for mental health

care.Leprosy in India, 55, 310313.

Ministry of Health, Government of Bangladesh. (2003). Annual

report of statistics on leprosy. Dhaka: Government of

Bangladesh.

Minnock, P., Fitzgerald, O., & Bresnihan, B. (2003). Quality

of life, social support, and knowledge of disease in woman

with rheumatoid arthritis. Arthritis and Rheumatism, 49,

221227.

ARTICLE IN PRESS


7/23/2019 270507

11/11

Noorden, S. K. (1995). Eliminating leprosy as a public health

problem: Progress and prospects. Bulletin of World Health

Organization, 73, 16.

Parker, P. A., Baile, W. F., Moor, C., & Cohen, L. (2003).

Psychosocial and demographic predictors of quality of life in a

large sample of cancer patients. Psycho-Oncology, 12, 183193.

Qubati, Y., & Kubati, A. S. (1997). Dermatologists combat leprosyin Yemen. International Journal of Dermatology, 36, 920922.

Raj, V., Garg, B. R., & Lal, S. (1981). Knowledge about leprosy

among leprosy patients. Leprosy in India, 53, 226230.

Rajaratnam, J., Abel, R., & Arumai, M. (1999). Is knowledge of

leprosy adequate among teachers? Comparative study.

Leprosy Review, 70, 2833.

Ranjit Kumar, J. H., & Verghese, A. (1980). Psychiatric

disturbances among leprosy patients. An epidemiological

study. International Journal of Leprosy and Other Mycobac-

terial Diseases, 48, 431434.

Rehse, B., & Pukrop, R. (2003). Effects of psychosocial

interventions on quality of life in adult cancer patients: Meta

analysis of 37 published controlled outcome studies. Patient

Education and Counseling, 50, 179186.Remor, E. (2002). Social support and quality of life in the HIV

infection.Atencion Primaria, 30, 143148.

Scott, J. (2000). The psychological needs of leprosy patients.


Suite, M., & Gittens, C. (1992). Attitudes towards leprosy in the

outpatient population of dermatology clinics in Trinidad.


Tekle-Haimanot, R., Forsgren, L., Gebre-Mariam, A., Abebe,

M., Holmgren, G., Heijbel, J., et al. (1992). Attitudes of rural

people in central Ethiopia towards leprosy and a brief

comparison with observations on epilepsy. Leprosy Review,

63, 157168.

Tsutsumi, A., Izutsu, T., Islam, A., Jalal, U. A., Nakahara, S.,

Takagi, F., et al. (2004). Depressive status of leprosy patients

in Bangladesh: Association with self-perception of stigma.

Leprosy Review, 75, 5766.Tsutsumi, A., Izutsu, T., Kato, S., Islam, A., Yamada, H. S.,

Kato, H., et al. (2006). Reliability and validity of the Bangla

version of WHOQOL-BREF in an adult population in

Dhaka, Bangladesh. Psychiatry and Clinical Neurosciences,

60, 493498.

United Nations Development Program. (2002). Human develop-

ment report 2002. New York: Oxford University Press.

Weiss, M. G., Doongaji, D. R., Siddhartha, S., Wypij, D.,

Pathare, S., Bhatawdekar, M., et al. (1992). The explanatory

model interview catalogue (EMIC). Contribution to cross-

cultural research methods from a study of leprosy and mental

health. British Journal of Psychiatry, 160, 819830.

World Health Organization. (1988). Sixth report; World Health

Organization Technical Report Series 768. Geneva: WorldHealth Organization.

World Health Organization. (1994). A users guide to the Self

Reporting Questionnaire (SRQ). Geneva: World Health

Organization.

World Health Organization. (1996). WHOQOL-BREF instruc-

tion, administration, scoring and generic version of the

assessment. Geneva: World Health Organization.

World Health Organization. (1997). WHOQOL: Measuring

quality of life. Geneva: World Health Organization.

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