Lepr Rev (2003) 74, 215±221
Assessment of disability, social and economic
situations of people affected by leprosy in
Shandong Province, People's Republic of China
CHEN SHUMIN, LIU DIANGCHANG, LIU BING,
ZHANG LIN & YU XIOULU
Shandong Provincial Institute of Dermatology and Venereology,
57 Jiyan Lu, Jinan, Shandong, P.R. China 250022
Accepted for publication 3 May 2003
Summary With the decline in prevalence of leprosy, social and economic rehabilitation (SER) has become a major priority in leprosy control programme in Shandong
Province. In the preparative phase of an SER programme, a province-wide survey
was conducted with a semi-structured questionnaire in order to provide policy makers
and programme managers with some basic information on the disability, and social
and economic situation of the people affected by leprosy. This paper presents the
results of a study in the people affected by leprosy living in the communities.
Introduction
Following the introduction of multi-drug therapy (MDT) in the treatment of leprosy in 1981,
there have been tremendous changes in the epidemiological situation of leprosy worldwide.1
The number of leprosy patients released from control is far more than the number of cases
requiring chemotherapy. For those who are disabled, social and economic rehabilitation is
now a major priority.2 During the last 2 decades, new knowledge and skills have been
developed and implemented in prevention of disability (POD) around the world, including
China.3
The leprosy control programme started in 1955 in Shandong province under a vertical
approach. After more than 40 years of effort against the dreaded disease through intensive
case ®nding, case holding and implementation of chemotherapy, the prevalence and
incidence of leprosy had declined signi®cantly by the late 1970s and early 1980s. The
process of the elimination of leprosy was further facilitated by the province-wide introduction
of multi-drug therapy (MDT) in 1986. By the end of the year 2000, a total of 53,677 leprosy
cases were registered, with only 122 cases on MDT. The pro®le of the epidemiology of
leprosy and the details of the leprosy control programme in Shandong were described
elsewhere.4,5
In 1995, as a part of the collaborative project on prevention of disability in leprosy (POD)
between The Leprosy Mission International (TLMI) and MOH, China, 1132 cases in six
Correspondence to: Chen Shumin (e-mail: [email protected])
0305-7518/03/064053+7 $1.00 q Lepra
215
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Chen Shumin et al.
counties of ®ve prefectures were selected in the pilot project in Shandong. In the year 2000, a
contract for the third stage of the collaborative POD project between TLMI and Shandong
Provincial Bureau of Health was assigned. The project is now in progress. The general
introduction of stage 1 of the project nationwide has already been reported.3 We also
presented our experiences gained from the 3-year project (stage 2) implemented in
Shandong.6 Based on these experiences, we recognized the importance of social and
economic rehabilitation (SER) as a vital aspect of leprosy work, including POD, for the
people affected by leprosy. In order to propose a SER programme to policy makers and
leprosy control managers at top level, we conducted a province-wide survey to collect some
basic information on the disability, and social and economic situation from the people
affected by leprosy.
Materials and methods
Due to the limitation of time and ®nancial constraints, a simple semi-structured intervieweradministered questionnaire was designed. Each questionnaire could be completed in about 15
min, followed by a physical examination in assessing disability grading according to the
WHO disability grading system.7 The information collected from people affected by leprosy
included demographic characteristics, economic situation, ability of self-care, limitation of
daily activity, social participation and disability grading. The questionnaire was discussed by
a group of people, including of®cials from provincial bureau of health, project managers from
Shandong Provincial Institute of Dermatology and leprosy control staff at prefecture level,
and was revised accordingly. Unfortunately, people affected by leprosy were not invited and
we also did not perform a pre-test.
The impact of disability due to leprosy on physical and social function varies from person
to person, and also varies in different societies with different cultures. For example, some
persons with severe disability can still cope with their daily life without major problems. In
addition, although the WHO International Classi®cation of Impairments, Activities (Disability) and Participation (Handicaps), draft-2 (ISIDH-2)8 was recommended for those
involved in rehabilitation in the ®eld of leprosy, there is a lack of reliable tools for assessing
the limitation of daily activity and social participation. Therefore, we made some simple
de®nitions for the terms used in the survey as followings:
· For self-care: we asked a person `How easy is it for you to take care of yourself at home
including dressing, washing hand and face, and eating?'
· For homework: we asked a person `How easy is it for you to do homework including
cooking, cleaning and washing?'
· For productive work: this was de®ned as ®eld work or working in the garden.
· For social participation: we asked two questionsÐthe ability to be involved in family
affairs, and the ability to be involved in the community.
For each of the questions mentioned above, three possible answers were given: very
dif®cult, dif®cult and no dif®culty.
For assessment of disability, both WHO three-scale grading system and WHO EHF score
system were used in order to give a clearer picture on the disability.
All data collected were entered into a database and analysed with SPSS software 1.0
version. In analysis, a list of all these persons was prepared by sex and age. One in three was
Socioeconomic aspects of leprosy in China
217
selected for this study by strati®ed random sampling. The results of analysis for the people
living in leprosy villages/leprosaria were presented separately and the data would be used for
comparison, where necessary. Since we assumed that there would be some differences
between males and females, all dependent variables were compared by gender.
Results
In all, 14,193 questionnaires (accounting for 95% of the leprosy affected people alive in
Shandong) were collected, including 643 people living in leprosy villages/leprosaria and
13,550 people living in the communities, from which 4240 people were analysed and
presented.
The demographic characteristics and living standards of the 4240 people are presented
in Table 1. The average age of the 4240 people living in the communities was
62´49 6 10´21 years, which was lower than the people living in leprosy villages/leprosaria
(64´6 6 9´8 years). A total of 58´9% of the people were over 60 years old, which was less
than the people living in leprosy villages (67´7%). Compared with the people living in
leprosy villages, more people were married (71´5% in communities versus 32´8% in
leprosy villages). As the people living in leprosy villages, more women were married
(90´4% for women versus 66´7% for men) and had direct relatives (73´3% for women
versus 67´2% for men). One hundred and eighty-six (4´4%) people were isolated from
their communities and 1422 (33´5%) people were living alone, with more men than
women. Out of the 1422 people, 462 (15´2%, data were not shown) were married. Two
thousand six hundred and eleven (61´6%) of the people reported that their living standards
were lower than other people living in the same communities (villages). More than 70% of
the people were living under the poverty line according to the government standard in
Shandong. The differences of demographic characteristics and economic situation between
men and women are presented in Table 1.
Table 2 shows that only a few people had great dif®culty in self-care (3´2%), 5´6% in
daily activity, 11´1% in productive ability and 7´2% in social participation. However, a
number of people had some problems in self-care (22´7%), daily activity (28´3%), productive
activity (38%) and social participation (38´6%). The health condition and disabilities of the
4240 leprosy affected people living in the communities are presented in Table 3. As Table 4
shows, there were more people with WHO grade 2 disability in the over-60 years group than
younger age group (61´3% versus 38´3%, P < 0´01). When we used a cut-off of 1±6 scores as
mild disability and cut-off of 7±12 scores for severe disability, there were more people with
severe disability in the over-60 years group than in the 60 years group (P < 0´01). The
economic problems and limitation of social participation among 2090 people with WHO
grade 2 disability are shown in Table 5.
Discussion
Leprosy once was and is still a dreaded disease in many societies, because it can cause
mutilations and dis®guration of human body, which, in turn, results in many physical,
psychological, and social and economic problems.9 Therefore, persons affected by leprosy,
sometimes even without disability, are often rejected and excluded from society.10 Those
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Chen Shumin et al.
Table 1. Demographic characteristics and living standard of 4240 people affected by leprosy
living in community in Shandong Province
Variables
Male (%)
n ˆ 3376
Age (mean)
62´69 6 10´06
# 40
59 (1´7)
# 50
310 (9´2)
# 60
968 (28´7)
# 70
1298 (38´4)
> 70
741 (21´9)
Education
Illiterate
641 (19´0)
Primary school
2498 (74´0)
Secondary/High school
237 (7´0)
Marital status
Married
2251 (66´7)
Single
968 (28´7)
Divorced/loss of spouses
157 (4´7)
Direct relatives
Nil
1042 (30´9)
Children/parents/spouses
2325 (68´9)
Missing
9 (0´3)
Isolated by community
Yes
162 (4´8)
No
3113 (92´2)
Missing
101 (3´0)
Living with other family members
No
1287 (38´1)
Yes
2028 (60´1)
Missing
61 (1´8)
Living standarda
Higher than average
203 (6´0)
On average
968 (28´7)
Lower than average
2111 (62´5)
Missing
94 (2´8)
Yearly income/person
# 1000 RMBb
2513 (74´4)
# 2000 RMB
546 (16´2)
# 3000 RMB
181 (5´4)
>3000 RMB
136 (4´0)
a
b
Female (%)
n ˆ 864
Total (%)
n ˆ 4240
61´69 6 10´75
24 (2´8)
87 (10´1)
295 (34´1)
266 (30´8)
192 (22´2)
62´49 6 10´21
83 (2´0)
397 (9´4)
1263 (29´8)
1564 (36´9)
933 (22´0)
219 (25´3)
608 (70´4)
37 (4´3)
860 (20´3)
3106 (73´3)
274 (6´5)
781 (90´4)
39 (4´4)
44 (5´1)
3032 (71´5)
1007 (23´8)
201 (4´7)
76 (8´8)
786 (91´0)
2 (0´2)
1118 (26´4)
3111 (73´3)
11 (0´3)
24 (2´8)
819 (94´8)
21 (2´4)
186 (4´4)
3932 (92´7)
122 (2´9)
135 (15´6)
721 (83´4)
8 (0´9)
1422 (33´5)
2749 (64´8)
69 (1´6)
42 (4´9)
298 (34´5)
500 (57´9)
24 (2´8)
245 (5´8)
1266 (29´9)
2611 (61´6)
118 (2´8)
618 (71´5)
161 (18´6)
44 (5´1)
41 (4´7)
3131 (73´8)
707 (16´7)
225 (5´3)
177 (4´2)
Self assessment of living standard, compared with local criteria.
1 US ˆ 8´2 RMB.
with any of these disadvantages are the primary targets of SER or an appropriate welfare
programme.3
Little information is known on the needs of social and economic rehabilitation for the
leprosy affected patients released from control around world, and it is the same for the leprosy
control programme in China and in Shandong. There is also no a clear strategy for POD and
rehabilitation, due to the fact that the decision-makers and programme managers in leprosy
control programme are medical doctors, which could mean more attention directed towards
treatment aspects and less towards rehabilitation activities, especially for social and
economic aspects.11 As the decline in prevalence and incidence of leprosy continues, there
is no doubt that social and economic rehabilitation of people affected by leprosy is now the
Socioeconomic aspects of leprosy in China
Table 2. Self-care, limitation of daily activity and productive activity, and
restriction of participation among 4240 people affected by leprosy in Shandong
Province
Variables
Self care
Very dif®cult
Dif®cult
No problem
Missing
Working around house
Very dif®cult
Dif®cult
No problem
Missing
Ability of production
Very dif®cult
Dif®cult
No major problem
Missing
Social participation
Very dif®cult
Dif®cult
No problem
Missing
Male (%)
n ˆ 3376
Female (%)
n ˆ 864
Total (%)
n ˆ 4240
99 (2´9)
763 (22´6)
2463 (73´0)
51 (1´5)
38 (4´4)
198 (22´9)
616 (71´3)
12 (1´4)
137 (3´2)
961 (22´7)
3079 (72´6)
63 (1´5)
174 (5´2)
949 (28´1)
2224 (65´9)
29 (0´9)
63 (7´3)
252 (29´1)
546 (63´2)
3 (0´3)
237 (5´6)
1201 (28´3)
2770 (65´3)
32 (0´8)
346 (10´2)
1282 (38´0)
1713 (50´7)
35 (1´0)
127 (14´7)
329 (38´1)
405 (46´9)
3 (0´3)
473 (11´1)
1611 (38´0)
2118 (50´0)
38 (0´9)
217 (6´4)
1297 (38´4)
1818 (53´9)
44 (1´3)
87 (10´1)
342 (39´6)
421 (48´7)
14 (1´6)
304 (7´2)
1639 (38´7)
2239 (52´8)
58 (1´4)
Table 3. Health condition and disability among 4240 leprosy affected
people living in community in Shandong Province
Variables
Male (%)
n ˆ 3376
Major health problemsa
Yes
154 (4´6)
No
3222 (95´4)
Self assessment of health condition
Good and fair
709 (21´0)
General
1385 (41´0)
Bad
1237 (36´6)
Missing
45 (1´3)
WHO disability grading
Grade 0
1430 (42´4)
Grade 1
295 (8´7)
Grade 2
1651 (48´9)
Disability scoresb
1±3
596 (30´6)
4±6
783 (40´2)
7±9
350 (18´0)
10±12
217 (11´2)
Disability by sitesc
Eyes
814 (49´3)
Hand
1344 (81´4)
Feet
735 (44´5)
a
b
c
Female (%)
n ˆ 864
Total (%)
n ˆ 4240
33 (3´8)
831 (96´2)
187 (4´4)
4053 (95´6)
163 (18´9)
348 (40´3)
347 (40´2)
6 (0´7)
872 (20´6)
1733 (40´9)
1584 (37´4)
51 (1´2)
370 (42´8)
55 (6´4)
439 (50´8)
1800 (42´5)
350 (8´3)
2090 (49´3)
129 (26´1)
202 (40´9)
82 (16´6)
81 (16´4)
725 (29´7)
985 (40´4)
432 (17´7)
298 (12´2)
227 (51´7)
367 (83´6)
190 (43´3)
1041 (49´8)
1711 (81´9)
925 (44´3)
De®ned as having severe heart, lung or liver problems.
Out of the people with WHO grade 1 and grade 2 disabilities.
One person can has disability in more than one sites.
219
220
Chen Shumin et al.
Table 4. Comparison of WHO grading and severity of disability
by age among 4240 people affected by leprosy in Shandong
Age group
Disability
# 60 years
WHO disability grading
0
802 (46´0)
1
141 (8´1)
a
800 (45´9)
2
Total
1743
Severity of disability
0
802 (46´0)
1±6 scores
673 (38´6)
a
7±12 scores
268 (15´4)
Total
1743
a
> 60 years
Total
998 (40´0)
209 (8´4)
1290 (51´7)
2497
1800
350
2090
4240
998 (40´0)
1037 (41´5)
462 (18´5)
2497
1800
1710
730
4240
P < 0:01.
most important tasks in the leprosy control programme in Shandong, apart from prevention of
disability (POD). Our experiences from previous and on going POD projects indicated that
without social and economic rehabilitation POD project would not be sustainable.6 Understanding of the number of people affected by leprosy and their social and economic situations
would be the ®rst step in preparing a SER programme.
It was observed from the analysis for people affected by leprosy in Shandong that most
were old (58´9% of them are over 60 years). Although 71´5% of the people were married and
73´3% had children, 4´4% of people were isolated by their communities and 33´5% of the
people lived alone (with more men than women), re¯ecting that some of the people were not
only rejected by their communities, but also were rejected by their families. This means that
`rehabilitation' should be considered not only for the person affected by leprosy, also for
leprosy affected family as the unit.12
The living standard in many people (61´6%) was lower than average level, indicating
there was a need for economic rehabilitation. Some people were not only physically disabled
Table 5. Economic problems and limitation of social participation among 2090 people with WHO
grade 2 disability
People with WHO grade 2 disability
Living standard
On average or above
Lower than average
Social participationa
With limitation
Without limitation
No economic problems and
limitation of social participation
a
P < 0:01.
Male
n ˆ 1651 (%)
Female
n ˆ 439 (%)
Total
n ˆ 2029 (%)
468 (28´35)
1183 (71´65)
144 (32´80)
295 (67´20)
612 (29´30)
1478 (70´70)
868 (52´57)
783 (47´43)
336 (20´35)
269 (61´28)
170 (38´72)
90 (21´1)
1137 (54´40)
953 (45´60)
426 (20´38)
Socioeconomic aspects of leprosy in China
221
(26% of the people had dif®culty in self-care mainly due to disability caused by leprosy and
nearly half had dif®culty in productive activity), but also were limited in social participation.
Half of the people had WHO grade 2 disability, indicating that there was some needs for
POD programme to prevent the deterioration of the existing disabilities and as much as
possible to resume the functions of eye, hand and foot in order to improve their quality of life.
As recommended in the WHO report on global need and opportunities for rehabilitation,
not all people with impairments are necessarily in need of rehabilitation.13 In this group of
2090 people with WHO grade 2 disability, 612 (29´3%) are with no economic problems
(de®ned as having an average or above living standard as general people in the same
villages), 953 (45´6%) are with no limitation of social participation and 426 (20´38%) are
with neither economic problems nor limitation of social participation (Table 5). Rehabilitation should address problems in the activities of daily living and social participation. People
who do not experience problems in these areas may happily live with their impairments. More
recently, a new classi®cation system from the point of view of social and economic
rehabilitation for the people affected by leprosy was proposed2 and should be used in an
SER programme in the future. Date presented in this paper provide some basic information in
preparing a SER project. However, more details on people affected by leprosy are needed.
For example, who needs what kind of help, such as money, housing, goats, pigs or pigeons?
For those who are too old and/or too disabled to take care of themselves, especially for the
4´4% of the people isolated by their communities (most of them are very disabled), a social
welfare programme coordinated with other governmental and non-governmental agencies at
different levels is needed from the point of view of human right and justice.
Acknowledgement
We should like to thank all the staff who worked in the ®eld for the collection of the data.
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