Impact of leprosy on the quality of life
Geetha A. Joseph1 & P.S.S. Sundar Rao2
Leprosy is considered by many as not merely a medical condition, but as a condition encompassing psychological,
socioeconomic and spiritual dimensions that dehabilitate an individual progressively, unless properly cared for. The
present study was undertaken to document the nature and extent of decreases in the quality of life (QOL) of an affected
person. The World Health Organization questionnaire on quality of life was given to a representative random sample of
50 leprosy-affected persons and 50 unaffected individuals in the Bommasamudram Taluk of Chittoor District, Andhra
Pradesh, India. This questionnaire explores the following six domains: physical; psychological; level of independence;
social relationships; spiritual; and environmental.
The mean QOL score of the cases was significantly lower than that of the controls with the exception of the
spiritual domain. The mean total score for women was higher than that of males in each domain and age group. Males
with deformities had a significantly lower score than those with no visible deformities. Although the scores for females
with deformities were also lower than those without deformities, the differences were not statistically significant.
Analyses of economic status versus the QOL scores clearly showed that they were positively correlated.
The study revealed that quality of life decreased progressively in leprosy-affected persons. Women had a better
QOL score than men in almost every domain. Given the secondary role of women in Indian rural society, this may simply
imply an acceptance of their situation. The findings are discussed in comparison with other diseases and in the context
of a poor socioeconomic environment. With modern amenities, better education and higher expectations, the
perception of an individual regarding his or her own quality of life is bound to change. The need for frequent
assessments and further studies along these lines is emphasized.
Voir page 517 le reÂsume en francËais. En la paÂgina 517 figura un resumen en espanÄol.
Introduction
Subjects and methods
Leprosy, if untreated, leads to progressive physical,
psychological and social disabilities and dehabilitation. Because of the stigma associated with the
disease, patients sometimes delay seeking proper care
until they develop physical deformities. The quality
of life of such persons declines rapidly.
Leprosy patients used to be forced to leave
home; some were admitted to asylums or sanatoriums. Today, however, they remain within their
families, although they are often looked down on and
may receive little or no support from their communities. In order to throw some light on the extent and
nature of the dehabilitation of such people a study
was conducted in the Bommasamudram Taluk of
Chittoor District, Andhra Pradesh, India, in 1997,
where the disease is hyperendemic. Leprosy patients
in this area are treated and kept under routine
surveillance by the Schiefffelin Leprosy Research and
Training Centre, Karigiri. The families of persons
affected by leprosy are followed up for ``care after
cure''.
WHO's quality of life assessment questionnaire (1)
was applied to a random sample of 30 males and
20 females aged 15±70 years who had been released
from treatment for leprosy; 36, 6 and 8 of these
subjects were aged 30±60 years, under 30 years and
over 60 years respectively; 50 controls, matched for
age and sex, were chosen at random from the same
area.
The questionnaire explored the following
domains:
.
physical;
.
psychological;
.
level of independence;
.
social relationships;
.
spiritual;
.
environmental.
1
Specialist in Community Medicine, Schieffelin Leprosy Research
and Training Centre, Karigiri, North Arcot District, Tamil Nadu
632 106, India.
2
Director, Schieffelin Leprosy Research and Training Centre,
Karigiri, North Arcot District, Tamil Nadu 632 106, India.
Requests for reprints should be sent to this author.
Thirty-three questions were used to assess these
domains; in addition the socioeconomic status of
each subject's family was assessed by means of
12 questions. Maximum scores of 120 and 60 were
obtainable for the responses to the respective sets of
questions.
The questionnaire was administered by Geetha
A. Joseph in the subjects' homes under relaxed
conditions after a good rapport had been established
and the procedure had been explained. Completion
of the questionnaire took 45±60 minutes for each
subject.
Reprint No. 0019
Bulletin of the World Health Organization, 1999, 77 (6)
#
World Health Organization 1999
515
Research
Findings
Among the subjects affected by leprosy, 20 of the
males and 12 of the females had visible deformities.
The mean quality of life scores for cases and controls
in each domain are indicated in Table 1. Except in the
spiritual domain the mean scores for cases were
significantly lower than those for controls. The mean
total score for females was higher than that of males
in each domain and age group.
Quality of life scores by absence or presence of
disability are given in Table 2.
Males with deformities had a significantly lower
score than those with no visible deformities.
Although the mean score for females with deformities was lower than that for females without
deformities the difference was not statistically
significant.
The mean socioeconomic scores for cases and
controls were 44.7 and 47.2 respectively; for males
the difference in this respect between cases and
controls was significant but for females it was not.
There was a positive correlation between socioeconomic status and quality of life scores.
cared for. The emergence of multidrug therapy has
given rise to optimism about the prospects for
eliminating the disease (2) and preventing disability
and dehabilitation. Nevertheless, the stigma attached
to the disease remains, and leprosy services have not
always been accessible and acceptable (3). Consequently, the degree of decline in the quality of life
needs to be reviewed and correlated with various
sociodemographic and environmental factors, including ones associated with health services.
The present study revealed reductions in the
quality of life that were smaller than those reported
for epilepsy (4), mental illnesses (5) and other
conditions. To some extent this could be attributed
to variations in methods of assessment and to attitudes towards the acceptance of dehabilitation
caused by leprosy. Notwithstanding the traditional
belief that leprosy is a curse or punishment, our
investigation revealed no decline in the spiritual
domain, a surprising result that may need further
scrutiny.
In a country where poverty, illiteracy and
unhygienic environmental conditions occur, the
additional burden of disease is likely to affect the
Table 1. Mean quality of life scores by domains
Domain (number of respondents)
Physical Psycho- Level of
(24)
logical independ(30)
ence (30)
Cases
Controls
17.7
20.1
23.8
25.1
Social Spiritual Environrelation(10)
mental
ships (12)
(18)
24.7
25.6
7.2
8.5
Table 2. Mean quality of life scores by absence or presence
of disability
Sex
Disability
Number of
subjects
Quality of life
score
Male
Absent
Present
Absent
Present
10
20
8
12
99.2
91.4
96.9
94.1
Female
Discussion
Leprosy can be seen as having psychological, socioeconomic and spiritual dimensions that progressively
dehabilitate affected persons who are not properly
516
Total
8.2
8.7
12.7
13.5
Males
Females
All
93.9
101.5
95.2
101.5
94.5
101.5
quality of life. On the other hand, persons accustomed to living in such adverse circumstances may
not perceive leprosy as appreciably changing their
situation. The present study indicated that women
had higher quality of life scores than men in almost
every domain, and this perhaps implied a greater
readiness among women to accept their situation, in
line with their secondary role in Indian rural society.
Modern amenities, improved education and
raised expectations are bound to lead to changes in
people's perceptions of their quality of life. Periodic
assessments of the quality of life are therefore
desirable in order to provide guidance for policies and
programmes intended to achieve well-being (6). n
Acknowledgements
We express sincere thanks to Ms Nisha Kurian for
help with data-processing and statistical analysis.
Bulletin of the World Health Organization, 1999, 77 (6)
Impact of leprosy on the quality of life
ReÂsumeÂ
Impact de la leÁpre sur la qualite de la vie
Pour beaucoup, la leÁpre n'est pas uniquement une
maladie : elle comporte aussi des dimensions psychologiques, socio-eÂconomiques et spirituelles progressivement incapacitantes en l'absence de soins approprieÂs.
Cette e tude a e te entreprise pour recueillir des
informations preÂcises sur la nature et l'eÂtendue des
atteintes aÁ la qualite de la vie des personnes malades de
la leÁpre. Le questionnaire de l'Organisation mondiale de
la Sante sur la qualite de la vie a eÂte administre aÁ un
eÂchantillon repreÂsentatif de 50 malades de la leÁpre et aÁ
50 sujets indemnes dans la circonscription administrative
de Bommasamudram du district de Chittoor, dans l'Etat
d'Andhra Pradesh en Inde. Ce questionnaire porte sur les
six domaines suivants : eÂquilibre psychologique; degreÂ
d'autonomie; relations sociales; vie spirituelle; et
environnement.
Sauf pour la vie spirituelle, les malades ont obtenu
un score moyen sensiblement plus bas que les sujets
teÂmoins. Dans chaque domaine et chaque groupe d'aÃge,
les femmes ont obtenu un score total moyen plus eÂleveÂ
que les hommes. Les hommes preÂsentant des deÂformations ont obtenu un score nettement plus faible que les
hommes sans deÂformations visibles. Cette observation a
eÂgalement eÂte faite pour les femmes, mais avec des
diffeÂrences beaucoup moins marqueÂes, non statistiquement significatives. Des analyses de la situation
e conomique par rapport aux scores obtenus ont
clairement fait apparaõÃtre l'existence d'une correÂlation
positive.
L'eÂtude a montre que la qualite de la vie diminue
progressivement chez les malades de la leÁpre. Dans
presque tous les domaines, les femmes ont obtenu de
meilleurs scores que les hommes. Etant donne que les
femmes jouent un roÃle secondaire dans les socieÂteÂs
rurales en Inde, ce reÂsultat est peut-eÃtre simplement
reÂveÂlateur d'une acceptation de leur situation. Les
conclusions de l'eÂtude sont eÂgalement analyseÂes par
rapport aÁ d'autres maladies et dans le contexte de
conditions socio-eÂconomiques deÂfavorables. La perception qu'a l'individu de la qualite de sa vie ne peut que
changer s'il beÂneÂficie du confort moderne, d'un meilleur
niveau d'instruction et s'il a des aspirations plus eÂleveÂes.
Les auteurs insistent sur la neÂcessite d'eÂvaluations plus
freÂquentes et de nouvelles eÂtudes dans cette perspective.
Resumen
Repercusiones de la lepra en la calidad de vida
La lepra es considerada por muchos no soÂlo como un
trastorno meÂdico, sino como una dolencia con dimensiones psicoloÂgicas, socioeconoÂmicas y espirituales, que
incapacita al paciente progresivamente, a menos que se
le atienda adecuadamente. El presente estudio se
emprendio para documentar la naturaleza y el alcance
de la disminucioÂn de la calidad de vida (CV) de las
personas afectadas. Se distribuyo el cuestionario de la
OrganizacioÂn Mundial de la Salud sobre la calidad de
vida entre una muestra aleatoria representativa de
50 personas con lepra y 50 individuos no afectados en
el Bommasamudram Taluk del distrito de Chittoor, en
Andhra Pradesh (India). En el cuestionario se analizan los
seis aÂmbitos siguientes: fõÂsico; psicoloÂgico; nivel de
independencia; relaciones sociales; espiritual; y entorno.
La CV media de los casos fue significativamente
menor que la de los controles, exceptuando el aÂmbito
espiritual. La puntuacioÂn total media de las mujeres fue
mayor que la de los hombres en todos los aÂmbitos y
grupos de edad. Los hombres con deformidades
presentaban una puntuacioÂn significativamente inferior
a la de quienes no sufrõÂan deformidades visibles. Aunque
las mujeres con deformidades tambieÂn obtuvieron
puntuaciones menores que las que no las padecõÂan, las
diferencias no eran estadõÂsticamente significativas. El
anaÂlisis de la situacioÂn econoÂmica frente a la CV mostroÂ
una clara correlacioÂn positiva.
El estudio revelo que la calidad de vida disminuõÂa
progresivamente en las personas afectadas por la lepra.
Las mujeres presentaban una mejor CV que los hombres
en casi todos los aÂmbitos. Teniendo en cuenta el papel
secundario de las mujeres en la sociedad rural india, ello
puede reflejar simplemente una aceptacioÂn de su
situacioÂn. Se analizan los resultados en comparacioÂn
con otras enfermedades y en el contexto de un entorno
socioeconoÂmico pobre. Cabe prever que, con la mejora de la vida cotidiana, de la educacioÂn y de las
expectativas, la gente percibira de distinta forma su
calidad de vida. Se subraya la necesidad de realizar
evaluaciones frecuentes y estudios adicionales.
References
1. Study protocol for the World Health Organization project to
develop a quality of life assessment instrument (WHOQOL).
Quality of life research, 1993, 2: 153±159.
2. Leprosy beyond the year 2000. Lancet, 1997, 350: 1717
(editorial).
3. Noordeen SK. Eliminating leprosy as a public health problem ± is
the optimism justified? World health forum, 1996, 17: 109±144.
4. Wagner AK et al. The health status of adults with epilepsy
compared with that of people without chronic conditions.
Pharmacotherapy, 1996, 16: 1±9.
Bulletin of the World Health Organization, 1999, 77 (6)
5. Nair V et al. Quality of life survey among long-stay mentally
ill patients: patient and staff perspectives. Singapore medical
journal, 1996, 37: 512±516.
6. The WHOQOL Group. What quality of life? World health forum,
1996, 17: 354±356.
517