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OBJECTIVE BASED EVALUATION OF “CAMP APPROACH” - RECONSTRUCTIVE SURGERY OF LEPROSY PERSONS IN VADODARA DISTRICT Dr. P.V. DAVE DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENT FOR THE AWARD OF THE DEGREE OF MASTER OF PUBLIC HEALTH ACHUTHA MENON CENTRE FOR HEALTH SCIENCES STUDIES Sree Chitra Tirunal Institute of Medical Sciences and Technology Thiruvananthapuram, Kerala (India) JUNE 2004

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OBJECTIVE BASED EVALUATION OF “CAMP APPROACH” - RECONSTRUCTIVE

SURGERY OF LEPROSY PERSONS IN VADODARA DISTRICT

Dr. P.V. DAVE

DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENT FOR THE AWARD OF THE DEGREE OF

MASTER OF PUBLIC HEALTH

ACHUTHA MENON CENTRE FOR HEALTH SCIENCES STUDIES Sree Chitra Tirunal Institute of Medical Sciences and Technology

Thiruvananthapuram, Kerala (India)

JUNE 2004

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DEDICATED

To my dear Mother Late Mrs. Madhukanta V. Dave

And

To loving memory of my father

Late Shri. Vamanrao Dave

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Certificate

Certified that this dissertation entitled “OBJECTIVE BASED

EVALUATION OF “CAMP APPROACH” - RECONSTRUCTIVE

SURGERY OF LEPROSY PERSONS IN VADODARA DISTRICT”, is a

record of bonafied original research work undertaken by

Dr. PARESH V. DAVE, in partial fulfillment of the requirements for the

award of the Degree of Master of Public Health under my guidance and

supervision.

Guide Thiruvananthapuram Dr. D. VARATHARAJAN June, 2004 Associate Professor Achutha Menon Centre for Health

Science Studies Sree Chitra Tirunal Institute of

Medical Science and Technology Thiruvananthapuram, Kerala

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ACKNOWLEDGEMENTS

Leprosy, being one of the most stigmatized diseases, has not been the major thrust of

research among medical professionals. Being a little trodden field of study, I took this

challenging topic for my dissertation work in Master of Public Health Course. Experience

gained during last ten years in this field was another factor in choosing this topic.

I feel my duty to pay my sincere regards and gratitude to Mr. Ashok Bhatt, Who is the

pioneer of the concept, “camp approach reconstructive surgery” for social and economic

upliftment of leprosy affected persons of Gujarat. I also sincerely thankful to Dr. Kamal

Pathak, Dean Medical College, Vadodara, who make lot of efforts for success of this

concept. I also appreciate the dedicated work of Dr. Yogesh Bhatt, Plastic Surgeon,

S.S.G. Hospital, Vadodara.

I feel my duty to pay my sincere regards and gratitude to the Secretary (Health),

Government of Gujarat, Commissioner Health, Additional Director of Health for sending

my nomination for this course. I am also very thankful and extending my gratitude to

Ministry of Health and family welfare, Government of India for approval of my

nomination and to World Health Organization in India for awarding me in-country

fellowship for this course.

I am thankful to Dr. K. Mohandas, Director, Sree Chitra Tirunal Institute of Medical

Sciences and Technology for Patronizing all of us during the entire course. I am grateful

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to Dr. K.R. Thankappan, Head of Department, Achuta Menon Center for Health Science

Studies, for his ever-available support and instilling the basics of research process.

I am extremely thankful and extending my sincere gratitude to Dr. D. Varatharajan. As

my Guide, he always encouraged me to do better and took immense efforts in shaping my

study. All credits to his brotherly attitude so that I could complete the study without much

problems. I am thankful to Dr. P.S. Sarma, as Co-ordinator he gave all support during the

course. I also got valuable suggestions in the analysis part of the study from him. I extend

my sincere gratitude to all my batch mates who always encouraged and gave all supports

during last one and half year, specially during proposal submission and in analysis part of

the study.

I am also very much grateful to Dr. W H Van Brakel, for giving me inspiration and allow

me to use GPAS Scale 1998 and also Participation scale which is developed by him and

his team at Nepal. I also like to give my sincere thanks to Dr. Vasudev Rawal, Director of

State Institute of Health and Family welfare, Gujarat.

I am very greatful to all my team members who helped me for data collection, Dr.

Agrawal DLO, Dr. Nilesh MO, Dr. D.R. Shah MO., Sunita and Nandevalia

Physiotherapists, Atul Pharmacist and German Leprosy Relief Association for whole

hearted support.

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I am extremely thankful and extending my sincere gratitude to Dr. R. Ganapati, Director,

Bombay Leprosy Project, Mr. Kingsly, Physiotherapist, and Mr. Kailash Assistant

Professor, Sion Medical College, who took immense effort during my thesis work.

Finally I am indebted to all members of my family, specially my wife, Ms. Divya Dave

and my children Ravi and Bhakti who took all responsibilities and pains at home, in my

absence. Their love and affection constantly inspired me in completing the course and

this study.

Dr. PARESH V. DAVE

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DECLARATION

I hereby declare that the work embodied in this dissertation entitled

“OBJECTIVE BASED EVALUATION OF “CAMP APPROACH” -

RECONSTRUCTIVE SURGERY OF LEPROSY PERSONS IN VADODARA

DISTRICT”, is the result of original research and has not been submitted for any degree

in other university or institution.

Thiruvananthapuram June, 2004 Dr. Dave Paresh Vamanrao

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Abstract

Leprosy is one of the oldest scourges of mankind. The goal of eradication of leprosy will

have little meaning unless the issue of disability is address, as the persons affected with a

leprosy deformity would bear the “Disease” identity in the society. Disability is an

umbrella term for impairment, activity limitation or participation restriction recognized in

the ICF 2001, WHO.

Objective

This study attempted to findout the functional improvement, improvement in social

participation and evaluate the economic improvement after reconstructive surgery in

leprosy affected persons in “Camp approach”, Vadodara, Gujarat.

Methodology

In cross sectional descriptive study, total of 279 leprosy affected persons who underwent

major reconstructive surgeries were interviewed in the process using interview schedules

during 1st January to 30th March 2004. EHF Score, GPAS Scale (1998), Participation

Scale were used as instruments.

Results

Result indicates 13.2 times more surgery in camp approach as against traditional routine

surgery, 50.2% subjects fell in productive age group. For structural improvement, 22.6%

reduction in EHF score after surgery. Functionally 45.5% patients improved in the

activity of preparing meals, measured through GPAS Scale. Though, restriction in social

participation was not much a problem, however surgery did contribute to 41%

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improvement. Economically 14.3% reported an increase in income after the surgery.

While deformity pushed 25.5% persons down in the income group.

Conclusion

“The camp approach” reconstructive surgery for leprosy affected persons with deformity

had shown improvement in structural, functional, social and economical. This model

benefited leprosy affected persons to integrate their life in the normal way in the society.

Though economic cost is more, social cost out weights the economic cost involved.

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CONTENT

Chapters Page No. CHAPTER – 1 INTRODUCTION

• The disease

• Control Strategy

• Indian Context

• The Study

• Objectives CHAPTER – 2 CONCEPT AND METHODOLOGY

• Conceptual Frame Work

• Methodology CHAPTER – 3 RESULT AND ANALYSIS

• General Charactoristics

• Structural Improvement

• Functional Improvement

• Social Participation

• Economic Improvement CHAPTER – 4 DISCUSSION AND CONCLUSION

• Discussion

• Conclusion

• Policy Framework

• Strengths and Limitations REFERENCES ANNEXURE

• Interview Schedule

• Operational Definitions

• Extra Tables

• Photographs

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1

1 INTRODUCTION

1.1 THE DISEASE

Leprosy is a chronic infectious disease caused by Mycobacterium Leprae, an acid-fast,

road-shaped bacillus. It mainly affects the skin, peripheral nerves, mucosa of the upper

respiratory tract and eyes, apart from some other structures. It is one of the diseases

feared over the centuries because of its potential to cause progressive disfigurement,

disabilities and mutilations. The stigma attached to leprosy has often led to ostracization

of those afflicted, and their families, by society.

It has two types, paucibacillary (PB) and multibacillary (MB) and can affect all ages and

both sexes. The incubation period can be several years but is usually 3-5 years. It is

transmitted directly from person to person through the respiratory tract or the skin.

However, it is acquired through prolonged exposure and only a small proportion of the

population is affected. Untreated persons, particularly those, who are smear positive, are

the principal source of infection. 1

Deformities and disabilities can be primary (i.e. due to the disease process) or secondary

(due to damage to anaesthetised body parts). They are more commonly seen in Borderline

Leprosy and when the disease has been present for a long time. It is more commonly seen

in 20-50 age group and more so in males especially manual labourers. Anaesthesia

resulting from sensory loss makes it susceptible to ulceration on hands and feet, corneal

ulcers and opacities. The motor affection leads to Claw hand and Foot drop, etc. Lack of

sweating and sebum is seen due to loss of autonomic function thus leading to a dry,

cracked, scaly skin, which tends to ulcerate2. It is found that a majority of new cases had

at least one thickened nerve, with ulnar nerve most commonly involved3

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1.1.1 Ancient history

Leprosy (Greek – Leper – Scaly) is a chronic, infectious, non-fatal disease associated

with distressing deformities and disabilities leading to physical incapacitation, mental

agony and social ostracism. The disease has a long history and the ancient literature of

Rigveda recorded management of leprosy 12,000 years backI. It probably originated from

ancient India and was known as kushtha, derived from the Sanskrit word kushnati

meaning eating away. Evidence of bone involvement has been documented in the

Egyptian Mummies of the 2nd Century B.C. It was postulated then that soldiers of

Alexander and Prompey returning from India and Egypt respectively introduced the

disease to Europe.

1.2 CONTROL STRATEGY

2

For many years there was no effective remedy, except chaulmoogra (Hydenocarpus) oil,

which had till recently been the mainstay for treatment of leprosy5. Introduction of

sulphone drugs in the treatment of leprosy in 1943 marked the beginning of case detection

and domiciliary treatment. The decade of the 1980s witnessed a change in the strategy of

leprosy control from Dapsone monotherapy to Multi-Drug Therapy (MDT) and for the

first time, the concept of cure in leprosy emerged. With the remarkable success of MDT,

World Health Organization (WHO) announced global elimination of leprosyII. The

strategy was to treat leprosy with MDT and detect the cases early. The requirement of

skin smear examination is not mandatory to initiate MDT7

I Ghosha, daughter of sage Kakshivat, a direct descendent of Maharshi Atri, was afflicted by Abhishasti, which Sayanachary thought to be leprosy. As she was not getting proper match, though becoming of age, she fervently prayed to Ashvinikumaras who are doctors to gods. (Rigveda-Mandal 10, Sukta 39 & 40)4

. Reduction of prevalence to

II Reducing leprosy prevalence to less than one case per 10,000 populations, by the end of year 20006

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3

very low level, it was hoped, would lead to interruption of transmission of infection and

reduce disease incidence to insignificant level.

The treatment and its duration are fixed according to the type of leprosy. For PB cases

(number of lesions < 5), MDT with rifampicin and dapsone is given for 6 months while in

the case of MB (number of lesions >5), MDT with rifampicin, dapsone and clofazimine is

given for 12 months.6 Erethema Nodosum Leprosum (ENL), type-2 leprosy reactions are

an important complication of multibacillary leprosy, although its incidence (5.3%) has

reduced after the introduction of MDT. The incidence is found to be maximal in the 2nd

and 3rd year after the start of the treatment8

• All registered cases receive MDT now,

. By the end of 1998, MDT cured about 10

million cases; other achievements of MDT strategy are

• Relapse rate (1 per 1,000 cases) is brought down to very low level

• No resistance to MDT has been reported. The overall prevalence has been

reduced by more than 90% and number of countries showing prevalence rate

above 1 per 10,000 populations is reduced from122 in 1985 to 17 in 2003.

1.2.1 Progress made so far

7,9

The WHO has announced in May 2001 that the goal of leprosy elimination i.e. reducing

leprosy prevalence to less than one case per 10,000 population by the end of 2000 had

been attained. At the global level when prevalence of leprosy was 0.84/10,000 with total

number of cases 523,605 and total new cases detected during 2002 were 612,111 with

NCDR 0.98/10000.9 Of the 523,605 registered cases, 76.4% are in Asia, 8.6% are in

Africa and the remaining 15% in other continents. Two countries, India & Brazil account

for nearly 80% of the global burden of leprosy.

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Although the strategy attained leprosy elimination at global level by the year 2000, 17

countries including India had an average prevalence rate of much more than the target

elimination level in April 2003. These countries can be broadly grouped into those with

large populations and a large number of cases (major endemic countries) and countries

with smaller populations and a small number of cases (minor endemic countries).

‘Endemic’ refers to prevalence above 1 per 10,000 population. 9

Other countries (over 100) have eliminated leprosy as a public health problem and have

prevalence levels of less than 1 per 10,000 population. They still contribute to a certain

number of cases in the world. The number of registered cases in such countries at the

beginning of 2003 was 65,778 (12.6% of the global total); the number of new cases in

these countries during 2002 was 52,965 (8.6% of the global total). While prevalence

declined after the introduction of MDT, last 15 years data do not indicate any immediate

effect on transmission and persons already infected are likely to develop leprosy lesions

for some years10. WHO has consequently set a new target, the year 2005 for leprosy

elimination at the national level everywhere9

1.2.2 Prevention and management of disability as a core strategy

. According to this strategy, endemic

countries are provided with simplified guidelines for case management, training to

strengthen local management capacity, free supply of MDT blister packs, financial and

technical support from leprosy elimination campaign, and special action project for

elimination of leprosy (SAPEL).

Leprosy often causes impairment of autonomic, sensory and motor nerve function11,12

This in turn leads to secondary impairments or deformities of the eyes, face, hands and

feet13,14. Too often these become irreversible before the affected person receives

appropriate treatment. Impairments and deformities may cause limitation of activities of

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daily living and adverse social reactions.15 The core strategy for elimination now includes

the prevention of disability because community still perceives leprosy as the disease that

produces deformities and disfigurement. Enhancement of their knowledge in respect of

“leprosy can now be cured without deformities” with timely initiated and regular duration

therapy is also essential. Similarly, prevention of disability through health education,

physiotherapy and physical aids and appliances have been well recognized. Deformities

can be corrected by reconstructive surgery and need not lead to permanent disability.

Rehabilitation is one of the crucial messages to be passed on to the community. Besides,

there are number of cases who have suffered the consequences of leprosy beyond even

the cure by reconstructive surgery or have been the target of the social rejection for whom

rehabilitation is the only answer.

1.3 INDIAN CONTEXT

16

India has the largest number of leprosy cases compared to any country of the world,

accounting to more than two-third of the total world leprosy cases. Although no part of

the country is free from the disease, the prevalence rates vary not only from state to state,

but also between and within districts. Up to 1910, the exact figures about the total number

of cases of leprosy in India are not available. The Indian council of the British Empire

Leprosy relief association (predecessor of the present Hind Kustha Nivaran Sangh)

carried out survey, in the country during 1920-30. It was estimated that the number of

cases in the country would be about I million5. Since then anti-leprosy work has been

intensified especially in the post independence years and particularly after the initiation of

the National Leprosy control Programme in 1955. The estimated number of cases

continued to rise and stood at 3.2.million in 1971. Apart from increase in population, the

main reason for the increase in the estimated number of cases over the years was the

increased activity in the case finding prograrnme17.

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Since the introduction of MDT in 1981, India has seen a highly significant decrease in the

prevalence from 57 per 10,000 population in March 1981 to 5.2 per 10,000 population in

March 1999; it came down further to 3.2 per 10,000 in 2003. Fifteen Indian States/Union

Territories have attained the level of elimination.9. Despite all efforts; however, new case

detection has not shown a decline over the last 15 years due to presence of hidden and

undiagnosed cases.

Indian States are broadly grouped on the basis of their population size and leprosy

endemicity. The large States are those with populations of over 10 million; small states

have populations of less than 10 million. The high-endemic States are those with

prevalence rates of over 5 per 10,000; medium- endemic States have prevalence rates

between 2 and 5 per 10,000; and low-endemic States have prevalence rates between 1 and

2 per 10,000. 18

States with high endemicity are Bihar, Orissa, Chattisgarh, Jharkhand, Uttar Pradesh

and Delhi, which together account for 62.3% of leprosy cases in India. This means that

nearly half of the world's leprosy patients are in these six states. Bihar has the largest

share of 26%, and highest prevalence of 8.6 and New Case Detection Rate (NCDR) of

10.86 per 10,000 population. 9,19 Chattisgarh has a prevalence of 7.20 and NCDR of 8.59

while Jharkhand reports 6.49 and 10.33 respectively.

States with medium endemicity are Maharashtra, Andhra Pradesh, Tamil Nadu and

West Bengal together making up for 25.2% of cases while States with low endemicity,

Madhya Pradesh, Karnataka and Gujarat, account for 8.7% of cases. Six states

(Rajasthan, Punjab, Haryana, Kerala, Assam and Jammu & Kashmir) currently have

prevalence of less than 1 per 10,000. Among the 16 small States, none have high

endemicity, 4 have medium endemicity, 3 have low endemicity, and 9 have eliminated

9

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leprosy. Small States with medium or low endemicity together contribute to only 0.7% of

cases.

1.4 LEPROSY SCENARIO IN GUJARAT

18

Gujarat, accorded independent statehood in 1960, is the 7th largest Indian state and 10th

largest in terms of population (50.6 million). Gujarat has three geographical areas - North,

South and Saurashtra–Kutchh. The phased implementation of MDT in Gujarat has led to

a drop in the prevalence rate from 21.1 in 1984-85 to 5.4 in 1990-91 to 1.34 in 2003-04

(Figure-1.1) and there were 7,080 cases in the state at the end of October 2003.

Figure-1.1. Leprosy Prevalence Rate (PR) - Gujarat

1.34

21.1

0.0

5.0

10.0

15.0

20.0

25.0

84-85

86-87

88-89

90-91

92-93

94-95

96-97

98-99

00-01

02-03

Year

Prev

alen

ce R

ate

20

Out of 25 Districts, 9 (in south Gujarat) have leprosy prevalence of more than 1/10,000

and others have eliminated leprosy. Out of 226 Taluks (Sub-districts), 190 have attained

a prevalence of < 1 while 22 have 1-2 and 39 have 2-5; 17 taluks have it above 5.21 There

are 7,385 persons with grade-1III deformity and 5,970 persons with grade-2.

III Grade-1 indicates anaesthesia in the affected part while grade-2 includes all visible deformities.

22

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1.5 THIS STUDY

The goal of eradication of leprosy will have little meaning unless the issue of disability is

addressed, as the persons affected with leprosy deformity would bear the ‘disease’

identity in the society. The dramatic fall in prevalence and a reduction in the proportion of

new cases with disabilities do not necessarily mean a reduction in the global prevalence

of disabilities23. The question of rehabilitation has become more urgent today because the

future of “leprosy work” is seen to lie in the area of “rehabilitation” in the broad sense of

“solving all leprosy-related, not necessarily medical, problems” rather than in the

traditional areas of case finding, treatment providing and case holding24. It is estimated

that there are about 2 to 3 million individuals with disabilities due to leprosy in India25

Surgical correction is one of the means of rehabilitating the leprosy disabled as well as a

necessary means of preventing the disabilities from further worsening. Physical

disabilities lead to functional, social and economic difficulties. The advent of re-

constructive surgery techniques for correcting the paralytic deformities in leprosy is a step

to overcome the mystery characterized by the process of

.

This is a sizeable mass that should be definitely and successfully rehabilitated in order to

maximize social welfare.

dehabilitationIV

IV The term dehabilitation, used for describing the process of progressive devaluation and social marginalization, was a neologism introduced in leprosy in 1984.26 Persons with disabilities suffer from many disadvantages living in society (like illiteracy, unemployment, physical or economic dependency) restricting their participation as equal members and active citizens. As they are unable to discharge the obligations expected of them and play their normal role in society, their social status goes down and they get left out of decision-making processes within the family and in their neighborhood. Their (normal) multidimensional social identity is reduced to a stereotyped identity based on their disease and deformity. This process of their progressive downgrading and devaluation within their families and societies was termed “dehabilitation” 26.

. Unfortunately

surgical rehabilitation measures have not kept abreast with the day-to-day events that

hinder the leprosy-affected persons. Once the deformities are corrected, the natural

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sequence towards complete rehabilitation of the affected persons is to find suitable means

of gainful employment and restoration of normal social relationships.

The socio-economic uprooting associated with leprosy is well known. Studies have found

that persons with disability had a higher probability of facing socio-economic problems

compared to those without disability.27,28 While 55-75% of leprosy afflicted persons with

disability reported socio-economic problems, the proportion was 6-39% among those

without disability. Social consequences are mainly through the distancing of the patients

and their families by the community expressed through exclusion at social and religious

functions and gathering, eviction from jobs, work places, businesses, and suspension of

material and familial relationships. The trauma to the patient has immense psychological

and behavioural implications and consequences. It can cause social or antisocial attitudes.

The economic effect is through loss of livelihood and earning capability. Society and

families respect persons who are economically self-reliant. For the leprosy affected,

economic dislocation and marginalization are especially serious deleterious outcomes of

the disease.29 Loss of economic activity seems to be less in agricultural settings compared

to white-collar industrial or urban job settings30

One of the strategies considered by the Government of India (GOI) to reduce disability

load is the ‘camp-based approach’ to reconstructive surgery (Government of India 1997);

other strategies that are being adopted are treatment of acute neuritis with Prednisolone,

splints applications, MCR foot wares and community base rehabilitation.

.

31 On the basis

of guideline for involvement of Non Government Organisation (NGO) for major

reconstructive surgery issued vide latter No. T/1018/16/97/LEP (Part III) dated, 11-11-

1997, GOI issued GO.No.T-11018/1/99-LEP/CCD New Delhi dated, 12-03-1999, for

conducting reconstructive surgery camps under NLEP, through NGO (G.O. Leprosy

Division New Delhi; 1999). Health department of Gujarat Government took advantage of

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the GOI approach and organized reconstructive surgery camps through NGOs from 1st

January 1999 to 30th April 2004. The overall aim of the reconstructive surgery camps was

to rehabilitate the leprosy-disabled persons functionally, economically and socially.

Nevertheless, while corrective surgery may help in physical, social, economic and

psychological rehabilitation there is no documented proof as to the extent to which this

happens. The proportion of operated patients whose economic conditions have improved

because of corrective surgery is also not known. In fact, published literature is quite silent

on this point.31

1.6 OBJECTIVES

In this context, the present study evaluates the reconstructive surgeries on

leprosy-disabled persons in Gujarat from 3 dimensions – functional, economic and social.

As indicated above, the overall objective of this study is to conduct an objective-based

evaluation of camp-based reconstructive surgery for leprosy afflicted persons in Vadodara

district of Gujarat, India. Specific objectives are

• To assess the functional improvement

• To document improvement in the social participation.

• To evaluate the economic improvement

The basic premise of this study is that reconstructive surgery leads to significant

improvement in functional capabilities, social participation and economic development.

1.7 CHAPTER ORGANIZATION

This dissertation has four chapters. Next chapter introduces the concept and methodology

for the study while the following chapter presents the results. The last chapter is devoted

for discussion, summary and conclusions.

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2 CONCEPT AND METHODOLOGY

It may be recalled here that the overall aim of this study is to evaluate the functional,

social and economic improvement of leprosy persons who have undergone the

reconstructive surgery through “camp approach”. This chapter is divided into two parts -

part-I explains the concept of “camp approach” while part-II describes the methodology.

Third part providing the operational definition of the variables which is given in

Annexure II.

PART – I: CONCEPTUAL FRAMEWORK

2.1 EVOLUTION OF LEPROSY RE-CONSTRUCTIVE SURGERY IN INDIA

Although the pattern of deformities in leprosy is similar to the deformities due to

peripheral nerve damage caused by diseases other than leprosy, surgical techniques used

to correct the deformities widely differ, as the pathogenesis is different. Search for the

past evidence from the published literature revealed that a few plastic surgeons first

attempted to correct the facial deformities in leprosy. In 1942, Gillies, a renowned Plastic

Surgeon, successfully corrected the depressed nose of a leprosy patient in a Leprosarium

near Sao Paulo in South America. Later, Drs Antia, Bourrel, Carayon, Lennox and Narita

introduced the plastic surgery procedures for correcting the deformities in leprosy.

During 1958 to 1965, several publications on plastic re-constructive surgery procedures

were reported in Japanese Journal of Plastic and Re-constructive Surgery. Following this,

the Orthopaedic surgeons, Drs Paul Brand, Bunnels, Grace Warren, Palande, Srinivasan,

Fritschi and Boucher developed several surgical techniques for the correction of paralytic

deformities in leprosy. Most of these surgeries were carried out in established Hospitals.

In early 70’s, efforts were made to adopt these surgical techniques to be practiced in

peripheral hospitals. After initial experiments in a few centres in Nepal and India, civil

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surgeons were given specialized training in leprosy surgery and were encouraged to carry

our leprosy re-constructive surgeries. Antia and Srinivasan then further simplified the

complex techniques of correcting the deformities, which require only minimal post-

operative care. This development has given confidence to several surgeons for

undertaking the leprosy surgeries at the district or taluk (sub-district) level hospitals. The

‘camp approach’ for surgical intervention has been very common for problems like

cataract, poliomyelitis and minor surgery.

2.2 WHY CAMP APPROACH?

Camp approach has three objectives. First objective is to do maximum surgery in limited

period of time in leprosy persons with deformity. The approach has come as a boon for

the leprosy-affected persons, as such facilities were grossly inadequate and were available

only at selected centres. It is also realized that such an intervention immediately reduces

the number of patients who need other rehabilitation measures such as socio-economic

rehabilitation. The undisputable lack of patients’ confidence in surgical interventions, due

to non-integration of leprosy surgery to General Hospitals, is one of the basic causes for

its poor response, which can be solved only through a logical step by integrating the

surgical management of leprosy patients along with the surgical care offered at general

hospitals. The overall strategy for such camp approach is to extend the benefit of surgery

to a large number of leprosy affected persons scattered over a wide area and had only

short period of contacts with health personnel. This will lead to changing practice in

management of reconstructive surgery in leprosy.

Second objective is to do surgery in young patient of productive age group because earlier

studies showed that there was a wide difference between prevalence of socio-economic

problems among leprosy affected persons with deformities and without deformities.27,28

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The third objective is to perform surgery on priority basis in leprosy persons with

disability who are unable to perform their jobs due to their disability or the ones who may

lose their job due to disability. Deformities and disabilities caused by leprosy pose a

economic challenge to the patients and the nation. Economic loss to the country owing

the leprosy disability is estimated as $130 million (Max 1993). For individual patient, the

income loss is estimated as Rs. 1,040/- (US $ 22) per month on the average32.

Unemployment rate was found to have risen four-fold among leprosy disabled persons in

an endemic area of Tamil Nadu; unemployment due to leprosy disability was estimated as

29.7%.33 In addition, more than a third were pushed down towards lower level

occupations.

2.2.1 Camp approach in Gujarat

32

For many of those affected by leprosy, simply overcoming the infection is not sufficient

to allow a straightforward return to their previous life style.34 Leprosy centers at Gujarat

state for the past several years have been doing regular reconstructive surgery. However,

it was considered insufficient to achieve a significant downtrend in number of post

leprosy deformities and disabilities over a period. For instance, during 1996-04, only 376

surgeries were performed by the routine traditional approach. With 30 surgical units in

India35 carrying out 100 surgeries each per year, simple extrapolation suggests that it is

possible to perform a total of 3,000 surgeries per year. Even if the surgeries are conducted

uninterrupted for 10 years, it can only reach 3% of those who actually require such

surgeries.V In other words, it may not be possible to clear the backlog even after 100

years.31

V It is estimated that about 1 million leprosy-afflicted persons require reconstructive surgery in India.

It is in this context, camp approach was proposed and organized in Gujarat. If it

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was not organized, it may have taken many years to do reconstructive surgery for 5,023

persons requiring such surgeries in Gujarat as per a “guestimate”.

The Leprosy hospitals in the state assisted in taking care of the late postoperative patient

requiring hospitalization. They were also been utilized for postoperative follow up

examinations and physiotherapy. In addition the patients were encouraged to come to the

31

Camp approach started with the information campaign carried out by grass root leprosy

workers. All staff linked with sub centers and primary health centers were also associated

with the campaign. They were briefed and reoriented about the possible rehabilitation of

the disabled leprosy patients by reconstructive surgery absolutely at free of cost. Data

collected from each unit was compiled centrally. The collaboration with NGOs as

designated by GOI to undertake the camp approach was established. Under the banner of

the NGOs the camp approach was done at S.S.G. Hospital (Government Medical College

Hospital, Vadodara).

Before embarking on the project, a pre-surgical sensitization and training was held for the

Leprosy workers, Physiotherapists, Surgeons and NGO’s. Each of them was briefed about

the project and their role in it. The expert surgeons were invited from the state and the rest

of the country. To maximally utilize the time of the experts, the operation theatres in the

camps were planned to run continuously 24 hours a day for all the day of the surgical

camp. The organizer had arranged for food and lodging for all the patients. The

Reconstruction surgeons and the Physiotherapists examined all the patients pre-

operatively, and their deformities were recorded and Surgeries were planned. The

patients were taken in batches to the campsite. After the Surgery the patients were

monitored in the post operative ward for as long as required and then transferred to their

respective Leprosy Centers.

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Leprosy centers for vocational training after complete recovery from the surgery. It has

been strongly emphasized that the success of surgery in leprosy requires knowledge and

motivation on the part of the both the patient and the team managing and treating them36.

During 1st January 1999 to 30th

2.3 FRAMEWORK FOR THIS STUDY

April 2004, a total of 11 such camps were conducted and

5,023 leprosy-afflicted persons with disabilities were operated. An attempt to find out the

overall impact of camp approach will be very useful for the programme managers and for

development of future policy, as the approach was carried out in a big way involving

huge manpower, materials and logistics.

As stated earlier, this study evaluates the functional, economic and social impact of

surgical intervention through camp approach. Disability is conceptualized as being a

multi-dimensional experience for the person involved. There may be effects on organs or

body parts, for example impairment of the structure and/or function of the eye. There may

be effects on certain activities such as seeing and producing messages. There may be

effects on participation in areas of human life such as education and work or leisure.

Correspondingly, three components of disability are recognized in the ICF 200137 - Body

structure and function (and impairment thereof); Activity (and activity limitations); and

Participation (and participation restriction). Disability arises when any or all of the

negative outcomes occur-impairment, activity limitation and/or participation restriction –

when they are associated with a related ‘health condition’ (leprosy), when restriction in

participation may occur for reasons other than a health–related condition, these

restrictions are not considered to be included in the scope of ‘disability. Figure-2.1

explains the conceptual framework for this study. As it can be seen, this study approaches

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disability from three dimensions – physical, economic and social. The impact of the

intervention is also assessed from this perspective.

Figure-2.1. Conceptual framework

PART – II: Methodology

2.4 STUDY DESIGN

This study is a cross sectional descriptive study. The study included leprosy patients who

lived in Vadodara district and had undergone major corrective surgery for their

established paralytic deformities during “surgical camps” organized by the Government

of Gujarat. The major surgery included correction of paralytic deformities such as claw

fingers, thumb paralysis, foot-drop and lagophthalmos as well as non-specific deformities

of the face (like loss of eyebrow, depressed nose etc,). Out of 279 leprosy patients, 57

patients were to be assessed for joint range of motion (Hand, Feet and Eyes).

Physiotherapists did their preoperative assessment for joint range of motion. Secondary

data was available for these 57 patients. All 279 patients were assessed for activity of

Persons affected with Leprosy

Disabilities

Body function and structure (Impairment)

Activity

Limitation

Participation Restriction

Surgical Intervention

Improvement in social

participation

Economic

Improvement

Physical & Functional

Improvement

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restriction (GPAS 1998). This study do not look after different varieties of surgery

conducted by various surgeons.

The study area chosen was Vadodara district of Gujarat with a population of 37,89,050. It

is located 100 km south from Gandhi Nagar, the capital of Gujarat. Vadodara district was

the first district selected in June 1984 as a pilot project for MDT implementation under

National Leprosy Elimination Programme by GOI. It had already completed 18 years for

MDT implementation. All the major camps were organized in S.S.G. Hospital, Medical

College Hospital, Vadodara. The preoperative and post operative care and physiotherapy

was done at 150-bedded Anasuya Leprosy Hospital, which is also located in Vadodara

City. As available secondary data from both hospitals is useful for a comparison of

results, Vadodara district was selected for this study.

The District Leprosy Officer is in-charge of NLEP activities in Vadodara district and

leprosy control activities are undertaken through district leprosy society. The leprosy

elimination activities are integrated with general health services. The district has 75 PHCs

and 15 Community Health Centers (CHC). All paramedical workers (PMW) of leprosy

vertical programme are now posted at PHC/CHC. There is one leprosy control unit, one

urban leprosy control unit and two Non Governmental Organisations working for leprosy

in Vadodara district

2.4.1 Exclusion criteria for the subjects

The following categories of patients were excluded from the study:

• Patients who have undergone minor surgery procedures such as nerve

release, skin graft, wound debridement and sepsis.

• Patients who are unwilling to co-operative with the respondents

• Patients who have moved out of the area.

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As per Government of India guidelines, reconstructive surgery is divided into major

reconstructive surgery and minor reconstructive surgery. In this study, only those who

underwent major surgery were included. As all the patients who have undergone major

reconstructive surgery were included in the study, there was no need for sampling. Out of

527 persons operated, 376 underwent major reconstructive surgery and 279 (74.2%) were

interviewed; 56 (14.9%) had left the area and 41 (10.9%) had expired.

2.5 INSTRUMENTS/TOOLS

2.5.1 Assessment of the structural improvement

Each disabled leprosy patient was interviewed with the help of specially designed

standard questionnaire. The base-line data of all the patients who underwent surgery

during the camps were extracted from the records of the Anasuya Leprosy Hospital,

Vadodara. Five research teams consisting of one Medical Officer and one Physiotherapist

were formed and were briefed about the purpose of the study, data collection techniques

and the questionnaire. One-day orientation training was conducted for this purpose by the

researcher with the help of a senior Physiotherapist from Bombay leprosy project,

Bombay. Instructions on each variable were also explained to each team member

individually. Local health workers assisted the team in completing the interviews.

The interview schedule consisted of semi-structured as well as structured questions.

Semi-structured questions have a set of pre-determined (pre-constructed) relevant

responses that were conforming to the objective of specific variables to be studied.

Enough care was taken to maintain its internal consistency without any ambiguity while

constructing the interview schedule. Questions were arranged in the order of logical

sequence and worded in as simple language as possible. Wherever the validity of the

responses could not be assessed, a simple scoring system was developed. It was checked

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that respondents do not have any difficulty in choosing the response options. Since most

of the sub-titles of the interview schedules were derived from existing standard

procedures, no pre-testing of the schedule was done. Structural assessment was done by

• Assessment of disability (before and after surgery) – EHF Score

• Assessment of joint range of motion – only the body parts corrected by

surgery (Angle measurements)

2.5.1.1 EHF Score

The WHO disability grading (1988) scale (0-2) for eyes, hands and feet (6 sites) was used

to measure of impairment. Individual grades for the 6 sites (2 eyes, 2 feet and 2 hands)

were summed up to form the EHF score (range 0-12). Scores before and after the surgery

were compared to find out the impact. After surgery some patient of Grade II disability

may be improved partially only but they are considered as visible deformity Grade II and

EHF score is computed by seeing actual structural disability of the patient.

2.5.1.2. Assessment of joint range of motion ROM for body parts corrected by

surgery (angle measurements)

The difference in the angle was gradedVI

1) no change

as follows :

2) mild improvement

3) moderate improvement

4) marked improvement.

VI No change - Difference in sum score of unassisted angle 10-300; minimum improvement - difference in sum score of unassisted angle 310–600; moderate improvement - difference in sum score of unassisted angle 610 – 900; and marked improvement - difference in sum score of unassisted angle > 900

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2.5.2. Functional improvement - activity restriction (Green Pastures Activity Scale,

1998)

Assessment of functional improvement was done on the basis of International

Classification of Impairments, Disability and Health (ICIDH-2) developed by Green

Pastures Leprosy Hospital, Nepal known as Green Pastures Activity Scale (GPAS). This

questionnaire consists of 34 activity-based questions and 5 relationship questions. The

GPAS scale was used to identify the limitations in activities (ADL) due to disability

among the leprosy patients living in rural settings. The assessment of activity restriction

due to the deformity while performing various activities was assessed using a 4-point

scale (1- no difficulty, 2 – mild difficulty, 3- moderate difficulty, 4 – severe difficulty).

Questions pertaining to walking, sitting, seeing, preparing meals, activities in and around

house, drinking, eating, dressing and self-care were also included. Same questions were

repeated to record the responses before and after surgery. However, minor modification

was done in the standard schedule to suit local milieu.

2.5.3. Assessment of social participation

Activity is the execution of a task or action by an individual37. Participation is

involvement in life situation. Participation in the community refers to the phenomenon of

executing one’s role in society or taking part in activities in a group situation.

Participation restrictions are problems an individual may experience in involvement in

life situations. The Participation Scale is an 18-item-interview-based instrument to

measure perceived problems in major domains of life. The scale allows quantification of

participation restrictions experienced by people affected by leprosy disability or other

stigmatized conditions.

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The Participation Scale intends to measure restrictions due to disability/disease, not the

restrictions due to practices, which are part of their culture. To eliminate these cultural

influences, questions were asked to compare his/her situation with that of their peers VII

2.5.4. Economic improvement

.

The respondent was asked whether he/she was restricted in participation in comparison to

the peers. After the interview, the score for each item was transferred to the ‘score’

column and added up. The sum score was then written in the box marked ‘Total’. As the

scores for each item was between 0-4, the range for the sum score was 0-72. The current

recommended cut of for restriction in social participation is 12. When the total score

exceed 12 there is a remarkable restriction in social participation.

Separate questions were asked for economic improvement due to surgical intervention by

asking about the economic status before and after deformity and before and after surgery.

For economic status, two statuses were considered – occupation and income. Occupation

and income statuses were compared before and after deformity and surgery to find out the

impact of deformity and surgery. Besides assessment of these two, economic role of the

leprosy-afflicted persons was also obtained in the same manner. Economic role means the

rank order of the affected person within the household in terms of economic capability.

All these were done to find out whether deformity made the person slip in economic

status and whether surgery restored the status. The inflation rate over years is not counted

for economic improvement as well as there may be recall bias in collection of economic

data.

VII Peers are those who are similar to the respondent in all respects (socio-cultural, economic and demographic) except for the disease or disability.

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2.6. VARIABLES

Key variables for this study were the physical, economic and social conditions of the

affected persons before and after surgery. This goes with the objectives of the

reconstructive surgery. Outcome measures included improvement of EHF score, joint

range of motion, change in activity restriction, progress in social participation, gain in

income generation and measurement of family and social acceptance. The interview

scheduleVIII

2.7. DATA ANALYSIS

sought information on age, sex, residential location, type of the leprosy

occupation, type of deformity, duration of deformity, severity of deformity, the type of

surgery, occupation, income, economic role, household movements, outside movements

and social participation. Assessment of Joint range motion of finger joints, thumb joints

and ankle joints was found useful to assess structural improvement after surgery.

Data were entered in Excel spreadsheet and analysis was carried out using SPSS.

Frequency distributions were done. Due to non-parametric nature of data, two tests

(Paired samples T-test and Wilcoxon Signed Ranks Test) were employed to assess the

situation before and after surgery. Rates and ratios were found sufficient in many

instances.

Paired samples T-test. Compares average mean score of two samples.

Wilcoxon Signed Ranks Test. This test indicates the test significance. If P value is <

0.05, the test is considered significant.

VIII The complete schedule is reproduced in annexure.

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2.8. ETHICAL CONSIDERATION

Informed consent was taken from each study subject before administering schedule and it

was assured to them that information collected in the schedule will be confidential and

used only for research purpose.

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3. RESULTS AND ANALYSIS

This chapter, divided into 5 sections, reports the results. First section describes general

characteristics of the subjects whereas the second section deals with the structural

improvement. Third section brings out the results concerning functional improvement and

the fourth section assesses the social participation. The last section provides the results of

the assessment of economic improvements.

3.1. GENERAL CHARACTERISTICS

In all, 279 subjects who had undergone major reconstructive surgeries in the camp

approach were interviewed. Age, sex and marital status of the subjects are given in Table-

3.1. Majority (50.2%) of the subjects fell in the productive age group of 15-45 years;

73.5% were males. Male predominance suggests that male being an earning member tend

to seek better attention for improving their functional status by correcting their

deformities. Alternatively, this may be due to the fact that generally males are affected by

leprosy more than females and the male-female ratio is often 2:1. Majority of the patients

(71.3%) were married and mostly having medium-sized families. These patients appear to

be better motivated and well supported by the family, which was a positive factor towards

their rehabilitation. Divorce proportion was 2.2% and it was not clear whether the

presence of deformity was the reason as a ground for their divorce. About 60% of the

subjects belonged to Schedule Caste/Tribe and 74.9% lived in joint family; about half

were illiterate.

Most of them (97.1%) were treated for restoring functions and only some (2.9%) were

treated for cosmetic corrections. Therefore the effects of deformity and the anticipation of

function gain after surgery will greatly increase the anxiety of the patients. It must be

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stressed that the surgical procedures performed to correct various deformities have their

own limitations and all delicate functions cannot be restored back. Our results reflect the

realistic expectations of the patients in terms of functional, social and economical

improvement after surgery.

TABLE-3.1.

AGE GROUP, SEX & MARITAL STATUS

Age group in

Years

Unmarried Married Widower Divorcee Separated

Male

Fem

ale

Tota

l

Male

Fem

ale

Male

Fem

ale

Male

Fem

ale

Male

Fem

ale

Male

Fem

ale

≤ 14 1 2 - - - - - - - - 1 2 3 (1.1)

15 – 45 24 3 67 32 5 3 2 3 1 - 99 41 140 (50.2)

46 – 60 2 - 59 15 14 6 1 - - 1 76 22 98 (35.1)

≥ 61 1 - 23 3 5 6 - - - - 29 9 38 (13.6)

Total 33 (11.8) 119 (71.3) 39 (14.0) 6 (2.2) 2 (0.7) 205 (73.5)

74 (26.5) 279 (100)

It appeared important to distinguish between different types of leprosy, because it is

assumed that the possible effect of surgery on the course of leprosy might give rise to

sudden exacerbation of the disease such as lepra reaction. About 4% of the patients had

MB +ve type of disease; none of them had morbid status of leprosy following surgery

(Table-3.2). Over 80% were on MB–MDT treatment while 16.1% received PB–MDT

treatment; 9 were on DDS monotherapy. Most patients had progressive type of the

disease (MB) and had multiple deformities severely affecting their functional and social

status. One PB patient was on MB-MDT due to relapse.

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TABLE-3.2.

TYPE OF LEPROSY & TREATMENT STATUS

Type of Leprosy

Treatment Total

DDS PB MDT MB MDT

PB 6 45 1 52 (18.6)

MB –ve 3 213 216 (77.5)

MB +ve 11 11 (3.9)

Total 9 (3.2) 45 (16.1) 225 (80.7) 279 (100) It is recommended that a leprosy patient with deformities should not be subjected to

reconstructive surgery till the disease is ‘quiescent’ and that the deformity is stable.

However deformities of hands and feet are often corrected at a later stage, as the surgical

facilities are not available widely in most part of the country. In this study, 58.1% had

long-standing deformities and have undergone reconstructive surgery (Table-3.3). As

most of these patients got themselves adjusted to their deformity, it was a challenge to re-

educate the patients after corrective surgery. Therefore, this factor might reflect in poor

outcome of surgery.

Table-3.3. Duration of Deformity

DURATION IN YEARS NO. OF PERSONS (%)

0 – 2 53 (19.0)

2 – 5 64 (22.9)

> 5 162 (58.1)

Total (100)

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3.2. STRUCTURAL IMPROVEMENT

3.2.1. Structural changes after surgery

EHF Score is the sum score of WHO disability grading (1988) which has been widely used

to assess the progress over a period of time with specific intervention. Box- 3.1 shows that

the mean disability score was 3.18 before surgery and there has been a significant

(P<0.001) reduction of 22.6% in mean score after surgery.

Box-3.1. CHANGES IN EHF SCORE AFTER THE SURGERY

Period Mean Score of EHF

( X ± SD)

Before Surgery 3.18 ± 2.02

After Surgery 2.46 ± 2.27

By paired T – Test P < 0.001

Tabel-3.4 reports the structural changes after surgery in eyes. Movement towards lower

diagonal cells (light shaded cells) indicates improvement. As it can be seen, conditions of

12 subjects improved after surgery in right eye while it was the case in 8 subjects in the

case of left eye. Similarly, 53 (19%) subjects showed improvement in the right hand and

40 (14.3%) in the case of left hand (Table-3.5). In the case of feet, it was 4 and 2

respectively for right and left foot (Table-3.6). While the improvement after surgery was

statistically significant in the case of eyes and hands, it was not the case with respect to

the feet.

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TABLE-3.4.

CHANGES IN DISABILITY GRADES OF EYES AFTER SURGERY

RIGHT EYE LEFT EYE

BEF

OR

E SU

RG

ERY

AFTER SURGERY

BEF

ORE

SURG

ERY

AFTER SURGERY

No

Defo

rmity

Anas

thes

ia

Visib

le de

form

ity

Tota

l No

De

form

ity

Anas

thes

ia

Visib

le de

form

ity

Tota

l

No

Defo

rmity

264 (100) - - 264

(100) No

Defo

rmity

262

(100) - - 262 (100)

Anas

thes

ia

- - - -

Anas

thes

ia

- - - -

Visib

le de

form

ity

11 (73.3)

1 (6.7)

3 (20.0)

15 (100) Vi

sible

defo

rmity

8 (47.1) - 9

(52.9) 17

(100)

Tota

l 275 (98.6)

1 (0.4)

3 (1.1)

279 (100) To

tal 270

(96.8) - 9 (3.2)

279 (100)

By Wilcoxon Signed Ranks Test P = 0.001 P = 0.005

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Table-3.5 CHANGES IN DISABILITY GRADES OF HANDS AFTER SURGERY

RIGHT HAND LEFT HAND

BEFO

RE

SURG

ERY

AFTER SURGERY

BEFO

RE

SURG

ERY

AFTER SURGERY

No

Defo

rmity

Anas

thes

ia

Visib

le de

form

ity

Tota

l

No

Defo

rmity

Anas

thes

ia

Visib

le de

form

ity

Tota

l

No

Defo

rmity

115 (100) - - 115

(100) No

Defo

rmity

121 - - 121 (43.4)

Anas

thes

ia

- 9 (100) - 9

(100)

Anas

thes

ia

- 1 - 1 (0.4)

Visib

le de

form

ity

33 (21.3)

20 (12.9)

102 (65.8)

155 (100) Vi

sible

defo

rmity

26 14 117 157

(56.3)

Tota

l 148 (53.0)

029 (10.4)

102 (36.6)

279 (100) To

tal 147

(52.7) 15

(5.4) 117

(41.9) 279

(100)

By Wilcoxon Signed Ranks Test P < 0.001 P < 0.001

3.2.2. Assessment of Joint Range of Motion (ROM) – Angle Measurement

Out of the 279 leprosy patients interviewed, the pre-operative assessments were available

for 57 (20.4%) patients. Although the post-operative Functional Assessment was done for

all the patients interviewed by GPAS, only the assessment by angle measurement of 57

patients were analyzed and compared and 64 types of reconstructive surgeries were

performed in these patients (Graph –1, see Annexure III). Results are provided in Table-

3.7. The table reveals that out of 54 patients analyzed for claw hand in ring and little

fingers, 37 (68.5%) showed minimum to maximum improvement in ROM.

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30

Table-3.6 CHANGES IN DISABILITY GRADES OF FEET AFTER SURGERY

RIGHT FEET LEFT FEET BE

FORE

SUR

GERY

AFTER SURGERY

BEFO

RE S

URGE

RY

AFTER SURGERY

No

Defo

rmity

Anas

thes

ia

Visib

le de

form

ity

Tota

l

No

Defo

rmity

Anas

thes

ia

Visib

le de

form

ity

Tota

l

No

Defo

rmity

223 (100) - - 223

(100) No

Defo

rmity

219 (100) - - 219

(100)

Anas

thes

ia

- 21 (100) - 21

(100)

Anas

thes

ia

- 22 (100) - 22

(100)

Visib

le de

form

ity

2 (5.7)

2 (5.7)

31 (88.6)

35 (100) Vi

sible

defo

rmity

2 (5.3) - 36

(94.7) 38

(100)

Tota

l 225 (80.7)

23 (8.2)

31 (11.1)

279 (100) To

tal 221

(79.2) 22

(7.9) 36

(12.9) 279

(100)

By Wilcoxon Signed Ranks Test P = 0.063 P = 0.157

The paralysis of intrinsic muscles of the hand leads to claw finger deformity. This

deformity makes the pinch and grasps movements difficult. In ulnar nerve lesion, usually

ring and little fingers are only affected and all the fingers are rarely affected. In ulnar and

median nerve lesion, all the four fingers as well as thumb are also deformed. In this

analysis, out of 54 claw hand deformity corrected, 23 (43%) were in right hand and 31

(57%) in left hand. Although the surgery was aimed at correcting the deformity of ring

and little finger, however, all the fingers are corrected if all are involved. The outcome of

the surgery is related to the difference in the degree of joint range of movements (ROM)

before and after surgery. The difference in the degree was gradedIX

IX No change - Difference in sum score of unassisted angle 10-300; minimum improvement - difference in sum score of unassisted angle 310–600; moderate improvement - difference in sum score of unassisted angle 610 – 900; and marked improvement - difference in sum score of unassisted angle > 900

as 1) No change, 2)

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31

Mild improvement, 3) Moderate improvement and 4) Marked improvement. 8 patients

had underdone surgery in ape thumb. Results indicated that there was a minor

improvement in its structure. Structural changes in the thumb were assessed without a

goniometerX. This is how it is usually done. For foot drop and lagopthalmos, only one

patient in each category had both pre and postoperative assessment available. In the case

of foot drop, the patient showed moderate improvement in active drosi-flexion after

surgery and mild to moderate improvement in passive dorsi flexion with knee joint

straight and knee joint bent to 900

Grades of improvement

. For Lagopthalmos, the patient showed marked

improvement in eye lid closure after surgery, however there was no change in the vision

status.

Table–3.7 CORRECTION OF CLAW HAND DEFORMITY (N = 54)

Range of motion – PIP Joint

Index Finger Middle Finger Ring Finger Little Finger

UNAS

SIST

ED

Assis

ted

CONT

RACT

URE

UNAS

SIST

ED

Assis

ted

CONT

RACT

URE

UNAS

SIST

ED

Assis

ted

CONT

RACT

URE

UNAS

SIST

ED

Assis

ted

CONT

RACT

URE

No change 37 48 50 40 40 46 17 35 43 17 34 38

Minimum improvement 13 5 3 7 8 6 27 11 8 20 8 13

Moderate improvement 2 0 1 4 4 0 6 3 3 10 6 2

Maximum improvement 2 1 0 3 2 2 4 4 0 7 6 1

54 54 54 54 54 54 54 54 54 54 54 54

3.3. FUNCTIONAL IMPROVEMENT

Functional improvement was assessed with 34 activity-based questions with 4-point scale

- (1) No difficulty, (2) Mild difficulty, (3) Moderate difficulty and (4) Severe difficulty.

X For this purpose, the examiner passively abducted and opposed the thumb fully. If he/she was able to bring the thumb perpendicular to the hand, it was termed as “normal” and if there was slight restriction, then it was termed as adequate. If it was not possible to abduct the thumb, then it was termed as “contracted”.

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32

There were a total 9 groups of activities. All the operational definitions of each activity

are given in Annexure–II. Out of 279 subjects, 21 (7.5%) reported improvement in

walking after surgery (Table-3.8); 16 (5.7%) people also reported worsening after the

surgery.

Table-3.8 IMPROVEMENT IN WALKING AFTER THE SURGERY

BEFO

RE

SU

RG

ER

Y

AFTER SURGERY

No Difficulty

Mild Difficulty

Moderate Difficulty

Severe Difficulty Total

No Difficulty

205 (94.5)

3 (1.4)

9 (4.1) - 217

(100)

Mild Difficulty

8 (40.0)

8 (40.0)

1 (5.0)

3 (15.0)

20 (100)

Moderate Difficulty

4 (19.0)

1 (4.8)

16 (76.2) - 21

(100)

Severe Difficulty - 3

(14.3) 5

(23.8) 13

(61.1) 21

(100)

Total 217 (77.8) 15 (5.4) 31 (11.1) 16 (5.7) 279 (100) By Wilcoxon Signed Ranks Test P = 0.726

The statistical test was insignificant. It was true for sitting and getting up activity as well

(Table-3.9). Regarding eyes, structural improvement was not translated into functional

improvement, which may be attributed to the fact that many of them had developed

cataracts after surgical correction of lagopthalmos (Table-3.10). In fact, there was a

significant decline in the eyesight. However, many (45.5%) were able to improve in their

cooking activity after their surgery and it was statistically significant (Table-3.11).

Similarly, they have shown significant improvement in performing their routine activities

within the house (Table-3.12). It is true for activities outside the house too (Table-3.13).

Dressing, taking care of oneself, eating and drinking also improved after surgery in a

significant number of subjects (Tables – 3.14 to 3.16).

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33

Table–3.9 IMPROVEMENT IN SITTING AND GETTING UP AFTER SURGERY

BEFO

RE

SU

RG

ER

Y

AFTER SURGERY

No Difficulty

Mild Difficulty

Moderate Difficulty

Severe Difficulty Total

No Difficulty

225 (97.0)

1 (0.4)

6 (2.6) - 232

(100)

Mild Difficulty

4 (22.2)

9 (50.0)

3 (16.7)

2 (11.1)

18 (100)

Moderate Difficulty

1 (5.9)

4 (23.5)

12 (70.6) - 17

(100)

Severe Difficulty - 1

(8.3) 5

(41.7) 6

(50.0) 12

(100)

Total 230 (82.4) 15 (5.4) 26 (9.3) 8 (2.9) 279 (100) By Wilcoxon Signed Ranks Test P = 0.501

In the improvement in sitting and getting up after surgery 5.4% had shown improvement,

90.3% remained same, and 4.3% had shown worsening.

Table–3.10 CHANGES IN SEEING AFTER THE SURGERY

BEFO

RE

SU

RG

ER

Y

AFTER SURGERY

No Difficulty

Mild Difficulty

Moderate Difficulty

Severe Difficulty Total

No Difficulty

206 (89.2)

15 (6.5)

8 (3.5)

2 (0.9)

231 (100)

Mild Difficulty

4 (20.0)

12 (60.0)

2 (10.0)

2 (10.0)

20 (100)

Moderate Difficulty

2 (8.7)

3 (13.0)

17 (73.9)

1 (4.3)

23 (100)

Severe Difficulty - 1

(20.0) 1

(20.0) 3

(60.0) 5

(100)

Total 212 (76.0) 31 (11.1) 28 (10.0) 8 (2.9) 279 (100) By Wilcoxon Signed Ranks Test P = 0.003

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34

Table–3.11

CHANGES IN PREPARING MEALS AFTER THE SURGERY

BEFO

RE

SUR

GER

Y

AFTER SURGERY

No Difficulty

Mild Difficulty

Moderate Difficulty

Severe Difficulty Total

No Difficulty

59 (85.5)

3 (4.3)

3 (4.3)

4 (5.8)

69 (100)

Mild Difficulty

23 (42.6)

14 (25.9)

13 (24.1)

4 (7.4)

54 (100)

Moderate Difficulty

27 (32.9)

29 (35.4)

21 (25.6)

5 (6.1)

82 (100)

Severe Difficulty

13 (17.6)

21 (28.6)

14 (18.9)

26 (35.1)

74 (100)

Total 122 (43.7) 67 (24.0) 51 (18.3) 39 (14.0) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001

This table revel that in preparing meals after surgery 45.5% have improved 43.0%

remained same, and 11.5% have worsened. The P value is highly statistically significant.

Table–3.12 ACTIVITIES IN THE HOUSE

BEFO

RE

SUR

GE

RY

AFTER SURGERY

No Difficulty

Mild Difficulty

Moderate Difficulty

Severe Difficulty

Total

No Difficulty

88 (92.6)

1 (1.1)

3 (3.2)

3 (3.2)

95 (100)

Mild Difficulty

28 (43.1)

19 (29.2)

17 (26.2)

1 (1.5)

65 (100)

Moderate Difficulty

25 (38.5)

20 (30.8)

18 (27.7)

2 (3.1)

65 (100)

Severe Difficulty

14 (25.9)

10 (18.5)

14 (25.9)

16 (29.6)

54 (100)

Total 155 (55.6) 50 (17.9) 52 (18.6) 22 (7.9) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001

Regarding activities in the house 39.8% have improved, 50.5% of study subjects

remained same after surgery, and 9.7% have worsened.

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35

Table–3.13 CHANGES IN ACTIVITIES AROUND THE HOUSE OR IN THE FIELD

AFTER THE SURGERY

BEFO

RE

SUR

GER

Y

AFTER SURGERY

No Difficulty

Mild Difficulty

Moderate Difficulty

Severe Difficulty Total

No Difficulty

57 (87.7)

1 (1.5)

4 (6.2)

3 (4.6)

65 (100)

Mild Difficulty

25 (43.1)

13 (22.4)

16 (27.6)

4 (6.9)

58 (100)

Moderate Difficulty

19 (30.6)

21 (33.9)

18 (29.0)

4 (6.5)

62 (100)

Severe Difficulty

14 (14.9)

20 (21.3)

17 (18.1)

43 (45.7)

94 (100)

Total 115 (41.2) 55 (19.7) 55 (19.7) 54 (19.4) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001

Regarding activities around the house or in the field after surgery 41.5% have improved,

47.0% remained same, and 11.5% have worsened.

Table-3.14 CHANGES IN LOOKING AFTER YOUR SELF / CARING FOR YOURSELF

AFTER THE SURGERY

BEFO

RE

SU

RG

ERY

AFTER SURGERY

No Difficulty

Mild Difficulty

Moderate Difficulty

Severe Difficulty Total

No Difficulty

60 (89.6)

3 (4.5)

2 (3.0)

2 (3.0)

67 (100)

Mild Difficulty

29 (48.3)

18 (30.6)

6 (10.0)

7 (11.7)

60 (100)

Moderate Difficulty

23 (34.3)

15 (22.4)

25 (37.3)

4 (6.0)

67 (100)

Severe Difficulty

10 (11.8)

12 (14.1)

21 (24.7)

42 (49.4)

85 (100)

Total 122 (43.7) 48 (17.2) 54 (19.4) 55 (19.7) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001

Regarding looking after yourself / caring for yourself after surgery 39.4% have shown

improvement, 52.0% remained same, and 8.6% have shown worsening.

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36

Table-3.15 CHANGES IN ACTIVITIES OF DRESSING

AFTER THE SURGERY

BEFO

RE

SUR

GER

Y

AFTER SURGERY

No Difficulty

Mild Difficulty

Moderate Difficulty

Severe Difficulty Total

No Difficulty

67 (91.8)

2 (2.7)

2 (2.7)

2 (2.7)

73 (100)

Mild Difficulty

34 (50.7)

15 (22.4)

14 (20.9)

4 (6.0)

67 (100)

Moderate Difficulty

22 (36.7)

12 (20.0)

22 (36.7)

4 (6.7)

60 (100)

Severe Difficulty

17 (21.5)

15 (19.0)

15 (19.0)

32 (40.5)

79 (100)

Total 140 (50.2) 44 (15.8) 53 (19.0) 42 (15.0) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001

Regarding activities of dressing in the study subjects after surgery 41.2% have shown

improvement, 48.7% remained same, and 10.1% have shown worsening.

Table-3.16 CHANGES IN ACTIVITIES OF EATING & DRINKING

AFTER SURGERY

BEFO

RE

SU

RG

ER

Y

AFTER SURGERY

No Difficulty

Mild Difficulty

Moderate Difficulty

Severe Difficulty Total

No Difficulty

71 (93.4)

2 (2.6)

2 (2.6)

1 (1.3)

76 (100)

Mild Difficulty

30 (47.6)

14 (22.2)

14 (22.2)

5 (7.9)

63 (100)

Moderate Difficulty

24 (34.8)

16 (23.2)

27 (39.1)

2 (2.9)

69 (100)

Severe Difficulty

17 (23.9)

17 (23.9)

10 (14.1)

27 (38.0)

71 (100)

Total 142 (50.9) 49 (17.6) 53 (19.0) 35 (12.5) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001

Regarding changes in the activities of eating and drinking after surgery 40.9% have

shown improvement, 49.8% of the study subjects remained same and 9.3% have shown

worsening.

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37

3.4. SOCIAL PARTICIPATION

Assessment of social participation was done by the “participation scale” a new 18-item

interview-based instrument. This scale intends to measure the restriction due to

disabilities and leprosy, not the restriction due to practices, which are part of their culture.

There is a strong correlation between the deformities and the social factor as the physical

disabilities greatly influences the social outcome. Average score of social problems faced

by the patients before and after surgery is quantified using a 4-point scale. XI

BEFO

RE

The actual

average score covering 18 social activities of the patients was 10.03 ± 12.6 before surgery

and 5.87 ± 9.80 after surgery. This means that patients had already adapted to the social

problems even before surgery. However, surgery did contribute to reduction in restriction

of social participation of 41% and it helped the patients move towards ‘0’; the movement

was statistically significant (Paired t-test, P<0.001.)

TABLE-3.17 CHANGES IN SOCIAL PARTICIPATION SCALE AFTER THE SURGERY

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem

73 (93.6) - 1

(1.3) 2

(2.6) 2

(2.6) 78

(100)

Problem but fully adopted

4 (20.0)

11 (55.0)

3 (15.0)

1 (5.0)

1 (5.0)

20 (100)

Small problem

10 (23.3)

8 (18.6)

21 (48.8)

1 (2.3)

3 (7.0)

43 (100)

Medium Problem

20 (28.6)

12 (17.1)

15 (21.4)

22 (31.4)

1 (1.4)

70 (100)

Large Problem

10 (14.7)

6 (8.8)

7 (10.3)

5 (7.3)

40 (58.8)

68 (100)

Total 117 (41.9) 37 (13.3) 47 (16.8) 31 (11.1) 47 (16.8) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001

XI A score of ‘0’ means that there was no problem, ‘1’ indicates slight problems but adapted with the situation, ‘2’ signifies mild problems but not coped, ‘3’ denotes moderate problems and ‘4’ indicates severe problem. So, the desirable score is somewhere close to ‘0’.

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38

Table-3.17 reveals that surgery improved social participation in the case of 34.7%

patients. It can be recalled that the comparison was made keeping in mind the status of

their peers. Details of operational definition for each category are given in Annexure - II.

A separate analysis of all the 18 social participation questions is also given in Annexure-

III B. Maximum improvement was felt in the work and 31.2% replied that they were in a

position to work as hard as their peers after the surgery. The least impact was on

household decision-making and only 5% improved their decision making power within

the household. The least impact was also felt in the behaviour of the household members

in eating together, sitting together and use of same utensils.

3.5. ECONOMIC IMPROVEMENT

As it can be inferred from Table-3.18, 40 persons (14.3%) reported an increase in income

after the surgery. While deformity pushed 71 persons (25.5%) down in the income status,

surgery recovered it in 14.3% of persons. In some cases, income improved after deformity

because they entered into their bread-winning age group after deformity. Twenty-six

persons (9.4%) reported a decline in their income after surgery. Except one, who started

begging after surgery, others were pensioners or elders moved out of productive age

group.

Sixty-six persons (23.7%) changed their occupations after surgery (Table-3.19). It was

difficult to establish whether the change was better or worse, as the occupations are not

strictly comparable. Nevertheless, the change was clearly for the worse in case of

unemployment were 12.5% were unemployed before deformity, which is increased after

deformity upto 26.6% and there is no change after surgery. Majority of them was people

who retired from their work because of old age. Five persons seemed to have improved

their positions from their previous position of labour to that of salaried and farmer after

surgery.

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39

Thirty persons (10.8%) improved their economic ranking within the household while

condition of an equal number of persons worsened (Table-3.20). A majority of them

retained their earlier position after surgery. This is in comparison to the worsening of the

ranking in the case of 72 persons (25.8%) after deformity. Hence, surgery seems to have

reduced the damage due to deformity.

Table-3.18. (A) CHANGE IN INDIVIDUAL INCOME

BEFO

RE

DEF

OR

MIT

Y

AFTER DEFORMITY

No

Inco

me

1-50

0 In

com

e

501-

1500

In

com

e

> 15

00

Inco

me

Tota

l

No Income

44 (83.3)

3 (5.9)

4 (7.8) - 51 (100)

1-500 Income

29 (33.0)

95 (75.4)

2 (1.6) - 126 (100)

501-1500 Income

8 (11.0)

20 (27.4)

45 (61.6) - 73 (100)

> 1500 Income

3 (10.3)

3 (10.3)

8 (27.6)

15 (51.7) 29 (100)

Total 84 (30.1) 121 (43.4) 59 (21.1) 15 (5.4) 279 (100)

Table-3.18. (B) CHANGE IN INDIVIDUAL INCOME

AFT

ER D

EFO

RM

ITY

BU

T B

EFO

RE

SUR

GER

Y

AFTER SUGERGY

No

Inco

me

1-50

0 In

com

e

501-

1500

In

com

e

> 15

00

Inco

me

Tota

l

No Income

60 (71.4)

16 (14.0)

5 (6.0)

3 (3.6)

84 (100)

1-500 Income

14 (11.6)

94 (71.7)

13 (10.7) - 121

(100) 501-1500 Income

3 (5.1)

5 (8.5)

48 (81.4)

3 (5.1)

59 (100)

> 1500 Income

1 (6.7)

2 (13.3)

1 (6.7)

11 (73.3)

15 (100)

Total 78 (28.0)

117 (41.9)

67 (24.0)

17 (6.1)

279 (100)

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40

Table-3.19. (A) CHANGE IN OCCUPATION

AFTER DEFORMITY

Total BE

FORE

DEF

ORMI

TY

Labo

ur

Salar

ied

Farm

er

Unem

ploy

ed

Stud

ent

Prof

essio

nal

Labour 127 (76.0) - 3

(1.8) 34

(20.4) - 3 (1.8)

167 (100)

Salaried 4 (25.0)

9 (56.3)

1 (6.3)

1 (6.3) - 1

(6.3) 16

(100)

Farmer 3 (8.1) - 29

(78.4) 4

(10.8) - 1 (2.7)

37 (100)

Unemployed 2 (5.7) - - 33

(94.3) - - 35 (100)

Student 3 (18.8) - 1

(6.3) 1

(6.3) 10

(62.5) 1

(6.3) 16

(100)

Professional - - 1 (12.5)

1 (12.5) - 6

(75.0) 8

(100)

Total 139 (49.8)

9 (3.2)

35 (12.6)

74 (26.5)

10 (3.6)

12 (4.3)

279 (100)

Table-3.19. (A) CHANGE IN OCCUPATION

AFTE

R DE

FORM

ITY

BUT

BEFO

RE S

URGE

RY

AFTER SURGERY

Total

Labo

ur

Salar

ied

Farm

er

Unem

ploy

ed

Stud

ent

Prof

essio

nal

Labour 115 (82.7)

1 (0.7)

4 (2.9)

17 (12.2) - 2

(1.4) 139

(100)

Salaried - 7 (77.8) - - - 2

(22.2) 9

(100)

Farmer - 1 (2.9)

33 (94.3)

1 (2.9) - - 35

(100)

Unemployed 13 (17.6)

1 (1.4)

3 (4.1)

55 (74.3) - 2 74

(100)

Student 1 (10.0)

2 (20.0)

1 (10.0)

1 (10.0)

5 (50.0) - 10

(100)

Professional - - - - - 12 (100)

12 (100)

Total 129 (46.2)

12 (4.3)

41 (14.7)

74 (26.5)

5 (1.8)

18 (6.5)

279 (100)

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41

Table-3.20 (A) ECONOMIC RANKING WITHIN THE HOUSEHOLD

BEFO

RE

DEF

OR

MIT

Y

AFTER DEFORMITY 0 3 2 1 Total

0 45 (88.2)

1 (2.0)

1 (2.0)

4 (7.8)

51 (100)

3 2 (33.3)

4 (66.7) - - 6

(100)

2 16 (30.8) - 36

(69.2) - 52 (100)

1 22 (12.9)

12 (7.1)

20 (11.8)

116 (68.2)

170 (100)

Total 85 (30.5)

17 (6.1)

57 (20.0)

120 (43.0)

279 (100)

Table-3.20 (B) ECONOMIC RANKING WITHIN THE HOUSEHOLD

AFTE

R DE

FORM

ITY

BUT

BEFO

RE S

URGE

RY AFTER SURGERY

0 3 2 1 Total

0 60 (70.6)

5 (5.9)

10 (11.8)

10 (11.8)

85 (100)

3 - 15 (88.2)

1 (5.9)

1 (5.9)

17 (100)

2 8 (14.0)

1 (1.8)

45 (78.9)

3 (5.3)

57 (100)

1 10 (8.3) - 10

(8.3) 100

(83.3) 120

(100)

Total 78 (28.0)

21 (71.5)

66 (23.7)

114 (40.9)

279 (100)

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42

4. DISCUSSION AND CONCLUSIONS

The war against leprosy has seen many battles and each one of them has made a dent, be

it small or large, that has encouraged others to pool in their efforts and resources to

achieve better results in the future. The “camp approach” to reconstructive surgery of

leprosy-afflicted persons in Gujarat provided an opportunity to liberate the leprosy-

afflicted disabled persons from their deformities and disabilities – physically,

functionally, economically and socially.

Camps were useful to conduct surgery on 5,023 persons as again 376 conducted through

traditional routine surgery in various centres across the state. Hence, camp helped a

possible rehabilitation of 13.4 times more affected persons, who otherwise would have

waited for many years before the surgery materialized. It would have been a long wait for

them given the deteriorating nature of the leprosy deformity. Men were the major (73.5%)

beneficiaries of the camps partly because the disease and deformity are more prevalent

among men compared to women (2:1 ratio) and partly because they are the bread-winners

in many Gujarat families. This can be verified from the fact that a majority (50.2%) of

them who have undergone the surgery in camps belonged to 15-45 age group.

4.1. STRUCTURAL IMPROVEMENT

The operation site for a vast majority (88.5%) of the persons was hand (claw hand, ape

thumb, wrist drop) while it was eye (lagopthalmos) for 6.1% of the patients and it was

foot for 2.5% of them; another 2.9% have undergone cosmetic surgery (correction of

depressed nose and eyebrows). The results of this study go with another which revealed

that hand was the single most site that was operated.38 Significant reduction in EHF score

indicated that the surgery made an impact on the structure of the sites operated. Expert

opinion also suggests that surgery could correct most of the disabilities due to motor

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43

paralysis and therefore, should be made available as a part of the leprosy

treatment/control.41 It is also very important to keep records of the range of joint

movement at each stage of progress, measured with a protractor with a swinging arm

(Known as Goniometer) and even very good guesswork on angles can be quite long way

out, if a different surgeon makes the second assessment.40 The aim of tendon transfer

surgery in leprosy is to restore optimum functional ability and appearance. Normal

function and appearance can neither be expected nor achieved as the surgery do not

replace the functions of all the paralyzed muscles and balance forces across the joint.

Hence the outcome of the surgery can only reflect the action gained through the

transferred muscle in achieving dynamic movements of the joints.

In the present study, 68.5% patients had shown moderate to significant changes in the

ROM in to the ring and little fingers. It is stated that the tendon transfer procedures do not

increase range of motion much but only maintain the range that existed before surgery

(pre-operatively). Hence, even a small degree of benefit from tendon transfer procedures

is often sufficient for the patient to resume a reasonable normal gait.41 A long-term

follow-up ranging from 6 to 120 months (average 56 months) of 25 leprosy patients with

irreversible ulnar nerve palsy (claw hand deformity) who underwent tendon transfer

procedure (reconstructive surgery) have shown that the mean rate of improvement in

patients with <300 unassisted and assisted angles during pre-operative was significantly

better (MRI 90%) than patients with >30 0 (MRI 47%).

Surgical correction of lagophthalmos is mandatory in order to protect the eye (vision)

from danger of repeated keratitis and consequent total blindness.

42

43 This is apparently due

to the reason that the transferred muscle (Temporalis) is substituted for performing

another muscle action (Orbicularis Occuli). In the present study, one patient showed

marked improvement in eye lid closure after surgery and in EHF, 2.9-4.3% showed

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44

improvement in grade-2 deformity in Left & Right eyes respectively. Our results

conforms to the findings of another study where all the 30 cases the temporalis muscle

transfer surgery was successful. It is also relatively easy to train the patient in using the

transferred muscle and the surgery procedure is simple.44

Regarding foot surgery, one patient with foot-drop had shown moderate improvement in

active dorsiflexion after surgery. EHF score concerning feet showed 0.7-1.4%

improvement in left & right foot respectively. Another study has found that the active

range (angles) of dorsiflexion progressed from 9.3 to 15.5 at the time of discharge and it

was 11.1 to 20 at review after 2 years of 65 patients who underwent corrective surgery for

foot-drop. This could be due to the drop in resting angle and active range of plantar

flexion has increased during review after 2 years.45 A retrospective follow-up study of

101 patients having 105 foot-drop correction operations found good improvement in 71

patients with 50 more active dorsiflexion and active plantar flexion (100 active range of

movement).46 In another study, 21 out of 22 patients with foot-drop in whom the surgery

was performed were able to extend the foot above the neutral position and 14 of them had

normal gait.

4.2. FUNCTIONAL, SOCIAL AND ECONOMIC IMPROVEMENT

47

It has been known that the leprosy patients with impairments experience limitation of

activities, which can be partially overcome with the help of assistive devices, training and

surgery and as a result of these activity limitations, they are restricted in their social

participation.48 In this study, maximum (45.5%) functional improvement was found in the

preparation of meals at home whereas in the case of eyesight, only minimum (3.9%)

improvement was possible. However, in 11.5% of patients, their movement outside the

house was affected after surgery.

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45

Social stigma among leprosy patients is brought out by many studies.49-50,54 A cohort

study revealed that 2.4% of leprosy patients experienced stigma even within one month of

the diagnosis.49 Stigma is specifically high among those with deformity as found by

Kopparty.50 A workshop on social integration recommended that social and economic

integration and empowerment of persons affected by leprosy should be a priority for

leprosy programme planners along with the cure and prevention of disabilities.51 With

advances in treatment procedures and surgery, institution-based rehabilitation has become

outdated and the cure for leprosy remain incomplete until the people affected regain the

social and economic status that allows a dignified life.52 In the present study, social

participation improved to the extent of 34.7% after surgery while 5.4% complained of

worsening. Although there is an improvement after surgery among the study subjects, it

appears inadequate compared to the results shown by others.

Economic loss is another negative outcome of leprosy in general and deformity in

particular. Studies have shown that the economic loss was higher among those who are

deformed.

53

55-59,32 Studies have reported an income loss in the range of 20-75% compared

to what they were earning prior to deformity.32,54,57-59 Disabilities caused by leprosy pose

a big economic challenge not only to the patients but also to the nation. Economic loss to

India owing to leprosy disability is estimated as $130 million.58 Absolute loss to an

individual residing in rural area is estimated as Rs.1,040/- (about 22 dollars) per month on

the average.32 Unemployment rate too was found to have risen 4-fold among leprosy

disabled persons in an endemic area of Tamil Nadu with extra unemployment due to

leprosy disability was estimated as 29.7%.33 In a survey conducted in a part of Kenya,

majority of the disabled leprosy patients lost their jobs and their earning capacity and

became a burden to their families and in the long run to the entire community/state).59The

reduced employment of leprosy patients with deformity is clearly related to decreased

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46

community acceptance.56 This study, although did not quantify the actual income loss to

an individual, found that 25.8% of the study subjects reported an income loss. Another

study in Andhra Pradesh and Orissa has found the proportion to be 16% among its

subjects.

4.3. CONCLUSION

54

Given this, one of the surgery’s benefits would include economic improvement. In this

study, while social improvement on account of surgery was about 35%, economic

improvement was 14.3% although some of them stopped earning after surgery due to

retirement and old age. While there was an improvement in income, it was not enough to

offset the loss owing to deformity. Given the irreversible nature of leprosy deformity and

even possible worsening, even an improvement of 14.3% is significant.

Reconstructive surgery helps patients of all ages and types - whether it's a developmental

abnormalities or deformities acquired as a result of accident, infection, disease, or in some

cases, aging. The goal of reconstructive surgery is to improve function, but may also be

done to approximate a normal appearance. Although no amount of surgery can achieve

"perfection," modern treatment options allow surgeons to achieve improvements in form

and function thought to be impossible 10 years ago.

Finding of this study demonstrated that there was an improvement in structural,

functional, social and economic aspects of deformed leprosy-afflicted persons after

surgery through camp approach. First of all, camp approach achieved greater number

(13.4 times) of surgeries than the traditional approach. More importantly, majority of

patients on whom surgical correction was attempted belonged to the productive age group

of 15-45 years. Surgical correction was attempted in hand in majority of patients and

about two-third have shown moderate to maximum improvement in a structural sense.

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47

Functionally, a maximum of 45.5% of patients indicated an improvement in the activity

of preparing meals while improvement in other activities too was recorded albeit to a

lesser degree. Social participation improved to the extent of 34.7% whereas income gain

was reported by 14.3% of patients. Given the results, camp approach seems to have

fulfilled its stated objectives.

4.4. POLICY SUGGESTIONS

Results indicated that “The camp approach” to reconstructive surgery brought out

significant changes in structural, functional, social and economic aspects of the life of

leprosy-afflicted persons with disabilities. Surgical procedures in leprosy patients for

correcting their deformities, as well as those for preventing disabilities or their worsening

began to be practiced systematically when leprosy became a curable disease with the use

of dapsone about 5 decades ago. But this technology was developed and carried out

mostly in the few special institution treating leprosy patient.

With the advent of more effective MDT and its widespread implementation since the

1980’s, increasing number of leprosy patients are being cured outside these institutions

and are being released from treatment. A proportion of them have grade-1 and grade-2

deformities. As the care of leprosy patient is getting progressively integrated with general

health services and in view of the paucity of adequate surgical facilities even within the

leprosy sector, it is obvious that the burden of providing the needed basic surgical care for

this category of persons will be on the general medical sector at the district levels.

To deal with this problem, ‘The Camp Approach’ to reconstructive surgery, a

comprehensive programme of disability care & surgery in which the government, medical

colleges, general hospitals, physiotherapists, trained reconstructive surgeons, anaesthetist

and full involvement of NGO’s as active partners is useful for the society. The present

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48

model is therefore proposed for expanding reconstructive surgery wherever it is possible

for the entire state and the proposed model can be tried in all the major states of the India.

4.5. STRENGTHS AND LIMITATIONS OF THE STUDY

This study was conducted during limited time period for the purpose of academic

fulfilment. This, however, in no way has taken away the seriousness. There are several

advantages. First, the study tried to address the issue at hand in totality. Medically, it

measured even small structural changes possible due to surgery. It also captured the

physical functioning of the parts involved in surgical correction. Socially, it covered all

the possibilities of social interaction and tried to cover in a single scheme. Not only that,

the study methodology eliminated even the cultural differences in behaviour when

estimating the social impact of the surgery. Economic improvement was also brought out

both quantitatively and qualitatively. Second, standard tools were used wherever possible

and accuracy was obtained all the measures and scores. Third, a qualified researcher

conducted the study right from designing, data collection and analysis. Lastly, the study

came out with evidence–based policy framework for the consideration of the government

with an overall aim of improving leprosy scenario in the state and the country

The major weakness of this study is that the socio-economic results obtained cannot be

generalised, as they were obtained from a particular Socio-cultural-economic context.

Similarly, some of the results are highly opinionated and therefore, are not verifiable.

Leprosy work is not merely medical relief; it is

transforming frustration of life into joy of dedication,

personal ambition into selfless services.

Mahatma Gandhi

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49

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56. Kopparty SNM, Problems, acceptance and Social inequality: a study of the

deformed leprosy patients with and without deformities, 1995, Indian Journal of

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56

ANNEXURE 1

OBJECTIVE BASED EVALUATION OF “CAMP APPROACH”

RECONSTRUCTIVE SURGERY OF LEPROSY PERSONS IN BARODA DISTRICT, GUJARAT.

Dr. P.V. Dave

Achutamenon Center for Health Sciences Studies Sree Chitra Tirunal Institute of Medical Science and Technology Thiruvananthapuram,

Kerala [Information collected in the schedule will be kept confidential and used for research purpose only

(Informed consent received)]

INTERVIEW SCHEDULE

Date of Interview: Name of the Interviewer:

A. Personal Information

Name: Sl. No:

Village: Taluka: District:

Sex: M F Age: Caste: SC ST OBC Others

Leprosy: PB MB -ve

MB +ve

Treatment: DDS PB-MDT MB-MDT Other

Marital Status Education

unmarried 1 Illiterate 1

married 2 1-5 years of schooling 2

Widow 3 6-10 years of schooling 3

Divorcee 4 11-12 years of schooling 4

Separated 5 Any under graduate or above 5

Family Information Type of family 1 Nuclear 2 Joint 3 Extended

Size of family Adult Children

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B. Surgery Information Surgery date: / / Initial date: / / Assessed on: / /

Post-Operative Therapy (if any):

Date of Admission: / / Date of discharge: / /

Category A: Pathological Category B: Functional Category C: Cosmetic

Surgery done for (Tick the appropriate box) Peripheral Nerves R L Primary Deformity R L Secondary Deformity R L

Ulnar Claw hand Plantar ulcer

Median Ape thumb Contracture

Radial Wrist drop Bone involvement

Lateral popliteal Foot drop Loss of Eyebrow

Posterior tibial Claw toes Cataract

Facial (Zygomatic) Lagophthalmos Depressed nose

Post Operative Complication (Tick appropriate box, by verifying the records) S. No Post-operative complication Yes No

1. Infection

2. Haematoma

3. Residual Deformity

4. Extrusion of Cartilage

5. Blindness

6. Gangrene

7. Death

C. Physical Assessment of Disability TYPE-WISE DISABILITY Only in the box and analyze according to EHF Score WHO 1998

HAND FEET FACE Before

Surgery After

Surgery Before Surgery

After Surgery Before

Surgery After

Surgery R L R L R L R L R L R L Anaesthesia Anaesthesia Anaesthesia Mobile claw hand Foot drop Corneal ulcer Fixed claw hand Claw toes Lagophthalmos Ape thumb Sole wound Facial palsy Wounds / blisters Equines / Flat foot Loss of Eyebrow Absorption of fingers Absorption of toes Depressed nose

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58

EHF Score [Disability grades, WHO 1998]: (No deformity – Grade 0; Anesthesia -Grade 1; All visible Deformity-Grade 2) – Minimum Score – 0 & Maximum Score – 12.

Disability Grade Eyes Hands Feet EHF Score (Sum) Rt Lt Rt Lt Rt Lt

A. Before surgery / 12

B. After surgery / 12

Difference in EHF Score (A – B)

Duration of deformity 0 – 2 years 1 2 – 5 years 2 > 5 years 3

I. Assessment of joint range of motion (Hands) Angle is noted in Degree. S.No Angle measurement Before surgery After surgery

A. Assessment of hands

A

ctiv

e (U

nass

isted

)

Act

ive

assis

ted

(Ass

isted

)

Pass

ive

(Con

trac

ture

)

Act

ive

(Una

ssist

ed)

A

ctiv

e as

siste

d (A

ssist

ed)

Pa

ssiv

e (C

ontr

actu

re)

R L R L R L R L R L R L 1. Index finger (PIP Jt.)

2. Middle finger (PIP Jt.)

3. Ring finger (PIP Jt.)

4. Little finger (PIP Jt.)

Nor

mal

Stiff

Exte

nsio

n la

g

Nor

mal

Stiff

Exte

nsio

n la

g

R L R L R L R L R L R L 5. Thumb IP Jt.

Nor

mal

Ade

quat

e

Con

trat

ed

Nor

mal

Ade

quat

e

Con

trat

ed

R L R L R L R L R L R L 6. Thumb web

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59

II. Assessment of joint range of motion (Feet) Angle is noted in Degree.

B Assessment of foot Before surgery After Surgery R L R L

1. Active dorsi-flexion of Ankle

2. Passive dorsi-flexion (KS) of Ankle

3. Passive dorsi-flexion (KB) of Ankle

III. Assessment of vision (Eyes)

C Assessment of eyes R L R L 1. Eye lid gap (in mms)

Enter ‘1’ for YES & ‘0’ for NO N

orm

al

Dim

Blin

d

Nor

mal

Dim

Blin

d

Nor

mal

Dim

Blin

d

Nor

mal

Dim

Blin

d

2. Eye vision

D. Assessment of Physical Function Activity restriction (GPAS, 1998)

Question

Before surgery After surgery

No

diff

icul

ty

Mild

diff

icul

ty

Mod

erat

e di

ffic

ulty

Seve

re d

iffic

ulty

No

diff

icul

ty

Mild

diff

icul

ty

Mod

erat

e di

ffic

ulty

Seve

re d

iffic

ulty

A. Walking 1. How difficult for you, walking outside the house is?

2. How difficult for you, climbing stairs is?

3. How difficult for you, walking uphill is?

4. How difficult for you, walking downhill is?

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60

B. Sitting and getting up 5. How difficult for you, squatting is ?

6. How difficult for you, sitting with crossed legs is?

7. How difficult for you, getting up is?

C. Seeing 8. How difficult for you, recognising people from far away is?

9. How difficult for you, seeing small things at a short distance is?

D. Preparing meals 10. How difficult for you, cutting vegetables is?

11. How difficult for you, putting pots on the stove is?

12. How difficult for you, stirring food is?

13. How difficult for you, opening containers or bottles is?

E. Activities in the house 14. How difficult for you, sweeping is?

15. How difficult for you, opening a door is?

F. Activities around the house or in the fields 16. How difficult for you, opening a tap is?

17. How difficult for you, cutting grass or rice with an axe is?

18. How difficult for you, weeding grass or rice is?

19. How difficult for you, planting seedlings is?

20. How difficult for you, digging is?

21. How difficult for you, threshing rice is?

G. Looking after yourself/caring for yourself 22. How difficult for you, washing yourself is?

23. How difficult for you, washing your feet is?

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61

24. How difficult for you, cutting your nails is?

25. How difficult for you, massaging your feet is?

26. How difficult for you, going to the toilet is?

27. How difficult for you, cleaning yourself after toilet is?

H. Dressing 28. How difficult for you, using buttons, hooks or pins is?

29. How difficult for you making knots or tying laces (or bows) is?

30. How difficult for you, putting on shoes or sandals is?

31. How difficult for you, putting on clothes is?

I. Eating and drinking 32. How difficult for you, eating with the hand is?

33. How difficult for you, drinking water from a container or glass is?

34. How difficult for you, peeling fruit is?

E. Assessment of Social functions (Participation Scale) Before Surgery After surgery

No Participation Scale

Yes

Som

e tim

es

No

Irrel

evan

t, I d

on’t

wan

t to

, don

’t w

ant t

o

No

prob

lem

Smal

l

Med

ium

Larg

e

Scor

e

Yes

Som

e tim

es

No

Irrel

evan

t, I d

on’t

wan

t to

, don

’t w

ant t

o

No

prob

lem

Smal

l

Med

ium

Larg

e

Scor

e

1 Do you have equal opportunity as your peers to find work? 0 0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

2 Do you work as hard as your peers do? (same hours, type of work etc)

0 0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

3 Do you contribute to the household economically in a similar way to your peers?

0 0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

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No Participation Scale

Yes

Som

e tim

es

No

Irrel

evan

t, I d

on’t

wan

t to

, don

’t w

ant t

o

No

prob

lem

Smal

l

Med

ium

Larg

e

Scor

e

Yes

Som

e tim

es

No

Irrel

evan

t, I d

on’t

wan

t to

, don

’t w

ant t

o

No

prob

lem

Smal

l

Med

ium

Larg

e

Scor

e

4 Do you make visits (travel) outside your village as much as your peers do? (except for treatment) e.g. Bazaars, melas, nearby villages

0

0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

5 Do you help other people (e.g. neighbours, friends or relatives)?

0

0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

6 Do you take as much part in casual recreational/social activities as do your peers? (e.g. sports, chat, meetings)

0

0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

7 Are you as socially active as your peers are? (e.g. in religious/community affairs)

0

0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

8 Do you visit other people in the community as often as other people do?

0

0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

9 Are you comfortable meeting new people? 0 0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

10 Do you have the same respect in the community as your peers? 0 0

[If sometimes, no or irrelevant] how big a problem is it for you? 1 2 3 4 1 2 3 4

11 Do you move around inside and outside the house and around the village / neighbourhood just as other people do?

0

0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

12 In your village, do you visit all the public places/common places? (including schools, shops, offices, market and tea/coffee shops)

0

0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

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No Participation Scale

Yes

Som

e tim

es

No

Irrel

evan

t, I d

on’t

wan

t to

, don

’t w

ant t

o

No

prob

lem

Smal

l

Med

ium

Larg

e

Scor

e

Yes

Som

e tim

es

No

Irrel

evan

t, I d

on’t

wan

t to

, don

’t w

ant t

o

No

prob

lem

Smal

l

Med

ium

Larg

e

Scor

e

13 Do you have opportunity to take care of yourself (appearance, nutrition, health, etc.) as well as your peers?

0

0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

14 In your home, do you do household work? 0 0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

15 In family discussions, does your opinion count? 0 0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

16 In your home, do you eat with other people, including using the same utensils etc?

0

0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

17 Do you take part in major festivals and rituals as your peers do? (e.g. weddings, funerals, religious festivals)

0

0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

18 Do you feel confident to try to learn new things? 0 0

[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4

TOTAL SCORE

F. Assessment of economic function a What is your approximate monthly

income (Self) Before

Deformity After Deformity

but Before surgery

After surgery

b. What is approximate monthly income (Family)

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64

Please only in appropriate Column

c. What is/was your occupation? Before

deformity

After deformity but before

surgery

After surgery/now

1 Labour/Daily wage 2 Salaried 3 Farmer 4 Unemployed 5 Student 6 Professional/Business

d. What is the economic role with in household?

Before deformity After deformity but before surgery After surgery/now

Rank within the household in income earning

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ANNEXURE – II OPERATIONAL DEFINITION OF VARIABLES

Duration of deformity:

The duration from the date of onset of first deformity until the date of interview was

calculated and recorded. The duration was grouped as 1) 0 – 2 years; 2) 2 – 5 years and

3) > 5 years.

Assessment of Joint Range of motion

The most widely accepted system of recording the range of movement (ROM) of joints is

Goniometric measurements. The range of motion of individual joints can be measured in

degrees with much greater accuracy during pre and post surgery. The change in ROM of

individual joint can be monitored by goniometeric measurements.

Goniometer:

A goniometer is a protractor with a movable arm, which can move in a complete circle.

The straight side (0 – 180o) of the Goniometer is placed in line with the proximal bone on

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66

one side of the joint. The arm is moved in line with the distal bone on the other side of

the joint. The arm pointing to the angle is noted in degree.

Assessment of fingers:

The angles at the proximal inter phalangeal (PIP) joint of all four fingers (Index, Middle,

Ring & Little) of the affected hand will be measured. Three types of angles are

measured. The difference between the pre & post surgery angles will be compared.

Unassisted angle (Active)

This angle is measured at PIP joint of fingers. Patient is asked to perform lumbrical

position [Wrist in neutral position with MCP joint in 900 flexion and IP joints straight]

actively on his own. The examiner places the base of goniometer at the proximal phalanx

and the lag in PIP joint is measured and recorded.

Assisted angle (Active assisted)

This angle is measured at PIP joint of fingers. Patient is asked to perform lumbrical

position [Wrist in neutral position with MCP joint in 900 flexion and IP joints straight],

while the examiner holds the MCP joint of each finger in 900 flexion. The examiner

places the base of goniometer at the proximal phalanx and the lag in PIP joint is measured

and recorded.

Contracture angle (Passive)

This angle is measured at PIP joint of fingers. The examiner passively stretches the PIP

joint of each finger in maximum possible extension. The examiner places the base of

goniometer at the proximal phalanx and the lag in PIP joint is measured and recorded.

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ASSESSMENT OF THUMB

Thumb IP joint

The ROM of thumb IP joint is assessed pre and post surgery and it is classified as 1)

Normal, 2) Stiff and 3) Extension lag.

1) Normal: It is termed as ‘Normal”, if the ROM of the thumb IP joint is full and

possible actively

2) Stiff: It is termed as “Stiff’, if the thumb IP joint is stiff and the patient is not able

to move the IP joint.

3) Extension lag: It is termed as “Extension lag”, if the patient is not able to extend

the IP joint of thumb, while the examiner holds the Proximal phalanx of the

thumb.

Thumb web

The measurement of thumb web is classified as 1) Normal, 2) adequate and 3) contracted.

This is usually estimated without a goniometer.

The examiner passively abduct and oppose the thumb fully. If the examiner is able to

bring the thumb perpendicular to the hand, it is termed as “Normal”. If there is slight

restriction then it is termed as adequate. If it is not possible to abduct the thumb, then it is

termed as “Contracted”.

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Assessment of Ankle joint

This is done with foot giniometer. The protacter is fixed to the hinged boards with the

zero line parallel to the leg board. The angles between the two boards are recorded. Three

types of angles are measured.

1. Marked improvement - If the difference in the angle is more than 20.

2. Moderate improvement - If the difference in the angle is between

11 - 20.

3. Minimum improvement - If the difference in the angle is between

1 - 10.

4. No change - If the difference in the angle is zero.

Active dorsi-flexion of ankle

This is measured when the patient performs dorsi-flexion of the foot actively. The

normal dorsi-flexion of the foot is 800 to 700.

Passive dorsi-flexion (Knee Joint is Straight ) of ankle

This is measured when the examiner passively dorsi-flex the foot when the knee joint is

kept straight. The angle is recorded.

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Passive dorsi-flexion (Knee Joint is Bent to 900) of ankle

This is measured when the examiner passively dorsi-flex the foot when the knee joint is

bent or flexed to 900. The angle is recorded.

Assessment of eyes:

Eye lid gap:

This is measured in millimeters using a regular ruler. Patient is asked to close the eyelids

tightly and the residual gap between the upper and lower eyelids is measured and

recorded.

1. Marked improvement - If the difference in the lid gap is more than 10

mm

2 Minimal improvement - If the difference in the lid gap is between 6 mm to

10 mm

3 No change - If the difference in the lid gap is zero.

Eye vision:

This is classified as 1) Normal, 2) Dim and 3) Blind.

1) It is termed as ‘normal’ if the patient has good vision and able to see the objects

clearly.

2) It is termed as “dim’, if the patient is able to identify the objects, with some

difficulty.

3) It is termed as ‘blind’, if the patient is not able to see the objects at all.

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ASSESSMENT OF FUNCTION ACTIVITY RESTRICTION

GREEN PAUSTERS ACTIVITY SCALE - 1998

Question

Before surgery After surgery

No

diff

icul

ty

Mild

diff

icul

ty

Mod

erat

e di

ffic

ulty

Seve

re d

iffic

ulty

No

diff

icul

ty

Mild

diff

icul

ty

Mod

erat

e di

ffic

ulty

Seve

re d

iffic

ulty

A. Walking No difficulty – Able to walk normally Mild difficulty – Able to walk, but slowly Moderate difficulty – Difficulty in walking and have to limp forward Severe difficulty – Unable to walk and need a support B. Sitting and getting up No difficulty – Able to sit and get up normally Mild difficulty – Able to sit and get up, but slowly Moderate difficulty – Difficulty in sitting and getting up and have to lean forward Severe difficulty – Unable to sit and get up without a support C. Seeing No difficulty – Able to see normally Mild difficulty – Able to see, but slightly blur (Objects are not clear) Moderate difficulty – Difficulty in seeing and have to use the normal eye Severe difficulty – Unable to see any object D. Preparing meals No difficulty – Able to prepare meals normally Mild difficulty – Able to prepare meals, but at slow pace Moderate difficulty – Difficulty in preparing meals and need some assistive devise Severe difficulty – Unable to prepare meals E. Activities in the house No difficulty – Able to do all activities normally Mild difficulty – Able to do, but not safely Moderate difficulty – Difficulty in doing and need some assistance Severe difficulty – Unable to do any activities at house F. Activities around the house or in the fields No difficulty – Able to do activities around the house / fields normally Mild difficulty – Able to do, but not safely and with less efficiency Moderate difficulty – Difficulty in doing and have to use adaptations Severe difficulty – Unable to do any activities of the house and field

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G. Looking after yourself/caring for yourself No difficulty – Able to look after myself normally Mild difficulty – Able to look after myself, but manage slowly Moderate difficulty – Difficulty in looking after myself and need someone’s help Severe difficulty – Unable to look after myself and fully dependent on others H. Dressing No difficulty – Able to dress normally Mild difficulty – Able to dress, but slightly slow Moderate difficulty – Difficulty in dressing and have to manage differently Severe difficulty – Unable to dress myself and needs someone’s assistance I. Eating and drinking No difficulty – Able to eat and drink normally Mild difficulty – Able to eat and drink, but spills all over Moderate difficulty – Difficulty in eating and drinking and need adaptation Severe difficulty – Unable to eat and drink and need someone’s help

PARTICIPATION SCALE

Response options

Not specified, answered

“I won’t tell you”, or “I forgot to ask”

Use this response when the client does not give an answer, for example when they are too

embarrassed to do so. It may also be used when the interviewer forgets, or for some other

reason does not ask the question.

YES

“There is no difficulty”

Use this response when there is no participation restriction, or a negligibly mild one.

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72

Sometimes

There are problems with this sometimes or with some people

NO

There are problems with this

Irrelevant/I don’t have to/I don’t want to

The person may answer a question with ‘no’ but say that it is nevertheless irrelevant for

them. For example, they may not travel outside their village, in which case the answer is

‘no’, but it may be irrelevant for them because they have no relatives or family living

outside the village.

The person may say that they don’t travel outside their village because their children go

to the bazaar and they therefore don’t have to leave the village. This response can also be

used when a patient does not expect to be able to do this, e.g. questions about marriage

for children. This response may also be used where there is an issue due to caste, gender

etc, rather than disease. For example in a culture where women are excluded from

community leadership positions, regardless of their health status.

The person may also say that they don’t want to leave the village or have no interest in

doing so. Interviewers must note that there is a difference between a patient saying they

don’t want to because they have no interest in something, and not wanting to do

something because of fear or paranoia which is self-stigmatization.

Problem assessment

IF NO or Sometimes , the importance of the participation restriction must be assessed:

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73

It is not a problem

There is a participation restriction, but it does not matter to the client either practically or

emotionally. This can include situations where the client has fully adapted. Be careful to

distinguish between this, and the situation where the client did not ever have expectations

of participating

It is a small problem (in time or intensity) (mild restriction)

There is now a participation restriction. It matters to the client either practically or

emotionally. But it is only a small problem because it doesn’t happen often or isn’t a big

difficulty.

It is a medium problem (in time or intensity) (moderate restriction)

There is now a participation restriction. It matters to the client either practically or

emotionally. It has an effect on his/her life.

It is a BIG problem

There is now a participation restriction. It matters to the client either practically or

emotionally. (S)he has not found an appropriate way of coping and it is a big problem,

which may have resulted in a major life change.

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ANNEXURE – III (A) EXTRA TABLES

A) GENERAL CHARACTERISTICS

Table -1 DISTRIBUTION OF STUDY CASES AS PER CASTE.

Caste No. of Cases

SC 124 (44.5)

ST 40 (14.3)

OBC 31 (11.1)

Others 84 (30.1)

Total 279 (100.0)

Table - 2 TYPE OF FAMILY

Type of Family No. of persons

Nuclear 40 (14.3)

Joint 209 (74.9)

Extended 30 (10.8)

Total 279 (100.0)

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Table -3

EDUCATIONAL STATUS OF STUDY PERSONS

Educational Status (Yrs of schooling) No. of persons

Illiterate 137 (49.1)

1-5 81 (29.0)

6-10 49 (17.6)

11-12 9 (3.2)

Graduate & above 3 (1.1)

Total 279 (100.0)

Table -4

CATEGORY OF SURGERY DONE

Treatment No. of Cases

Pathological -

Functional 271 (97.1)

Cosmetic 8 (2.9)

Total 279 (100.0)

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Table - 5 PROFILE OF POST OPERATIVE COMPLICATIONS

Complications No. of persons (N=279)

Infection 5 (1.8)

Haematoma -

Residual Deformity -

Extrusion of Cartilage -

Blindness -

Death -

Total 5 (1.8)

Table - 6 CORRECTION OF APE THUMB DEFORMITY (N = 8)

(By Goniometer)

Disability status Range of motion – IP Joint

Before surgery After surgery

Normal 3 4

Stiff 3 2

Extension lag 2 2

8 8

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77

Type of deformity corrected by re-constructive surgery (N = 57)

23

3 1 0

31

50 1

05

101520253035

Claw han

d

Ape thumb

Foot dro

p

Lagophtal

mos

RT LT

64 type of reconstructive surgeries were performed in 57 leprosy patients.

Table - 7 THUMB WEB (N = 8)

Disability status RANGE OF MOTION – WEB SPACE

Before surgery After surgery

Normal 5 4

Adequate 2 3

Contracted 1 1

Total 8 8

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78

ANNEXURE – III (B)

SOCIAL PARTICIPATION (ONE TABLE FOR EACH QUESTION)

PARTICIPATION SCALE

TABLE – 1 DO YOU HAVE EQUAL OPPORTUNITY AS YOURS PEERS TO FIND WORK

BEFO

RE

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 138 3 2 1 3 147

(52.7)

Problem but fully adopted

8 18 - 1 - 27 (9.7)

Small problem 11 3 10 0 1 25 (9.0)

Medium Problem 16 4 11 16 2 49 (17.6)

Large Problem 8 - 3 1 19 31 (11.1)

Total 181 (64.9) 28 (10.0) 26 (9.3) 19 (6.8) 25 (9.0) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001

23.3% improved, 72.0% remained same, 4.7% worsened.

TABLE – 2 DO YOUR WORK AS HARD AS YOURS PEERS DO?

BEFO

RE

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 103 4 - 1 2 110

(39.4)

Problem but fully adopted

2 14 1 7 - 18 (6.5)

Small problem 22 6 24 1 2 55 (19.7)

Medium Problem 23 3 13 16 - 55 (19.7)

Large Problem 7 - 4 7 23 41 (14.7)

Total 157 (56.3) 27 (9.7) 42 (15.1) 26 (9.3) 27 (9.7) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 31.2% improved, 64.5% remained same, 4.3% worsened.

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TABLE – 3 DO YOU CONTRIBUTE TO THE HOUSEHOLD ECONOMICALLY IN A

SIMILAR WAY TO YOUR PEERS?

BEFO

RE

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 162 3 1 1 3 170

(60.9)

Problem but fully adopted

7 18 4 - - 29 (10.4)

Small problem 15 5 7 - 1 28 (10.0)

Medium Problem 11 2 4 8 1 26 (9.3)

Large Problem 10 - - 3 13 26 (9.3)

Total 205 (73.5) 28 (10.0) 16 (5.7) 12 (4.3) 18 (6.5) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 20.4% improved, 74.6% remained same, 5.0% worsened.

TABLE – 4 DO YOU MAKE VISITS (TRAVEL) OUTSIDE YOUR VILLAGE AS MUCH AS

YOUR PEERS DO? (EXCEPT FOR TREATMENT) e.g., MEALS, NEARBY VILLAGE.

BEF

OR

E

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 224 2 - - 1 227

(81.4)

Problem but fully adopted

5 11 - - - 16 (5.7)

Small problem 6 1 3 1 - 11 (3.9)

Medium Problem 6 2 2 1 - 11 (3.9)

Large Problem 8 - - - 6 14 (5.0)

Total 249 (89.2) 16 (5.7) 5 (1.8) 2 (0.7) 7 (2.5) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 10.1% improved, 87.8% remained same, 1.4% worsened.

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TABLE – 5

DO YOU HELP OTHER PEOPLE (eg., NIGHBOURS, FRIENDS & RELATIVES

BEFO

RE

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 212 2 1 - - 215

(77.1)

Problem but fully adopted

7 12 - - - 19 (6.8)

Small problem 8 1 7 - 1 17 (6.1)

Medium Problem 9 1 2 3 1 16 (5.7)

Large Problem 4 - - - 8 12 (4.3)

Total 240 (86.0) 16 (5.7) 10 (3.6) 3 (1.1) 10 (3.6) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 11.5% improved, 86.7% remained same, 1.7% worsened.

TABLE – 6 DO YOU TAKE AS MUCH PART IN CASUAL RECREATIONAL / SOCIAL

ACTIVITIES AS DO YOUR PEERS (eg., SPORTS, CHAT, MEETING)

BEF

OR

E

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 210 1 1 - - 212

(76.0)

Problem but fully adopted

7 25 - - - 32 (11.5)

Small problem 4 2 6 - - 12 (4.3)

Medium Problem 6 1 - 6 - 13 (4.7)

Large Problem 6 - - - 4 10 (3.6)

Total 233 (83.5) 29 (10.4) 7 (2.5) 6 (2.2) 4 (1.4) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 9.3% improved, 90.0% remained same, 0.7% worsened.

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TABLE – 7 ARE YOU AS SOCIALLY ACTIVE AS YOUR PEERS ARE ?.

(In Religious / Community affairs)

BEFO

RE

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 213 2 - - - 215

(77.1)

Problem but fully adopted

9 22 1 - - 32 (11.5)

Small problem 2 - 6 - - 8 (2.9)

Medium Problem 7 1 - 4 - 12 (4.3)

Large Problem 6 - - - 6 12 (4.3)

Total 237 (84.9) 25 (9.0) 7 (2.5) 4 (1.4) 6 (2.2) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 9.0% improved, 90.0% remained same, 1.0% worsened.

TABLE – 8 DO YOU VISIT OTHER PEOPLE IN THE COMMUNITY AS OFTEN AS

OTHER PEOPLE DO?

BEF

OR

E

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 221 1 - - - 222

(79.6)

Problem but fully adopted

9 18 - - - 27 (9.7)

Small problem 6 - 2 1 - 9 (3.2)

Medium Problem 8 - 2 2 - 12 (4.3)

Large Problem 5 - - - 4 9 (3.2)

Total 249 (89.2) 19 (6.8) 4 (1.4) 3 (1.1) 4 (1.4) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 10.8% improved, 88.5% remained same, 0.7% worsened.

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TABLE – 9 ARE YOU COMFORTABLE MEETING NEW PEOPLE?

BE

FOR

E

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 229 1 - - - 230

(82.4)

Problem but fully adopted

6 7 1 - - 14 (5.0)

Small problem 7 2 2 1 - 12 (4.3)

Medium Problem 8 3 2 2 - 15 (5.4)

Large Problem 6 - - - 2 8 (2.9)

Total 256 (91.8) 13 (4.7) 5 (1.8) 3 (1.1) 2 (0.7) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 12.2% improved, 86.7% remained same, 1.1% worsened.

TABLE – 10 DO YOU HAVE THE SOME RESPECT IN THE COMMUNITY AS YOUR

PEER?

BEF

OR

E

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 238 1 - - - 239

(85.7)

Problem but fully adopted

6 7 - - - 13 (4.7)

Small problem 2 2 1 - - 5 (1.8)

Medium Problem 7 2 - 7 - 16 (5.7)

Large Problem 2 - - - 4 6 (2.2)

Total 255 (91.4) 12 (4.3) 1 (0.4) 7 (2.5) 4 (1.4) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 7.5% improved, 92.1% remained same, 0.4% worsened.

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TABLE – 11 DO YOU MOVE AROUND INSIDE AND OUTSIDE THE HOUSE AND AROUND

THE VILLAGE / NEIGHBOURHOOD JUST AS OTHER PEOPLE DO?

BEFO

RE

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 240 1 - - - 241

(86.41)

Problem but fully adopted

8 6 - - - 14 (5.0)

Small problem 4 2 4 - - 10 (3.6)

Medium Problem 2 1 - 1 - 4 (1.4)

Large Problem 5 - - - 5 10 (3.6)

Total 259 (92.8) 10 (3.6) 4 (1.4) 1 (0.4) 5 (1.8) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 7.8% improved, 91.8% remained same, 0.4% worsened.

TABLE – 12 IN YOUR VILLAGE, DO YOU VISIT ALL THE PUBLIC PLACES / COMMON PLACES? (INCLUDING SCHOOLS, SHOPS, OFFICES, MARKET AND TEA /

OFFICE SHOPE)

BE

FOR

E

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 225 2 - - - 227

(81.4)

Problem but fully adopted

7 19 - - - 26 (9.3)

Small problem 5 2 3 - - 10 (3.6)

Medium Problem 5 1 - 3 - 9 (3.2)

Large Problem 3 - 1 - 3 7 (2.5)

Total 245 (87.8) 24 (8.6) 4 (1.4) 3 (1.1) 3 (1.1) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 8.6% improved, 90.7% remained same, 0.7% worsened.

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TABLE – 13 DO YOU HAVE OPPORTUNITY TO TAKE CARE OF YOURSELF

(APPEARANCE, NUTRITION, HEALTH etc) AS WELL AS YOUR PEERS?

BEFO

RE

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 237 4 - 2 1 244

(87.5)

Problem but fully adopted

8 5 - - - 13 (4.7)

Small problem 6 - 1 - - 7 (2.5)

Medium Problem 2 - - 2 - 4 (1.4)

Large Problem 4 - - 1 6 11 (3.9)

Total 257 (92.1) 9 (3.2) 1 (0.4) 5 (1.8) 7 (2.5) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 7.5% improved, 90.0% remained same, 2.5% worsened.

TABLE – 14 IN YOUR HOME, DO YOU DO HOSEHOLD WORK?

BEFO

RE

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 187 1 3 - - 192

(68.8)

Problem but fully adopted

6 27 - - - 33 (11.8)

Small problem 13 1 7 1 - 22 (7.9)

Medium Problem 8 - 3 4 - 15 (5.4)

Large Problem 7 1 - - 9 17 (6.1)

Total 221 (79.2) 30 (10.8) 13 (4.7) 5 (1.8) 10 (3.6) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 14.0% improved, 83.9% remained same, 2.1% worsened.

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TABLE – 15 IN FAMILY DISCUSSION, DOES YOUR OPINION COUNT?

BE

FOR

E

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 254 1 - - - 255

(91.4)

Problem but fully adopted

8 3 - - - 11 (3.9)

Small problem 2 - - - - 2 (0.7)

Medium Problem 2 - - 1 - 3 (1.1)

Large Problem 2 - - - 6 8 (2.9)

Total 268 (96.1) 4 (1.4) - 1 (0.4) 6 (2.2) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 5.0% improved, 94.6% remained same, 0.4% worsened.

TABLE – 16 IN YOUR HOME, DO YOU EAT WITH OTHER PEOPLE INCLUDING USING

THE SAME UTENSILS Etc?

BEF

OR

E

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 251 2 - - - 253

(90.7)

Problem but fully adopted

7 4 - - - 11 (3.9)

Small problem - 3 - 1 1 5 (1.8)

Medium Problem 2 - - 1 - 3 (1.1)

Large Problem 2 - - - 5 7 (2.5)

Total 262 (93.9) 9 (3.2) - 2 (0.7) 6 (2.2) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 5.0% improved, 93.5% remained same, 1.5% worsened.

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TABLE – 17 DO YOU TAKE PART IN MAJOR FESTIVALS AND RITUALS AS YOUR

PEERS DO? (eg. WEDDING, FUNERALS, RELIGIOUS FESTIVALS)

BEFO

RE

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 234 1 - - - 235

(84.2)

Problem but fully adopted

5 11 - - - 16 (5.7)

Small problem 4 1 2 - - 7 (2.5)

Medium Problem 8 - 1 3 - 12 (4.3)

Large Problem 4 - - - 5 9 (3.2)

Total 255 (91.4) 13 (4.7) 3 (1.1) 3 (1.1) 5 (1.8) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 8.2% improved, 91.4% remained same, 0.4% worsened.

TABLE – 18 DO YOU FEEL CONFIDENT TO TRY TO LEARN NEW THINGS?

BEF

OR

E

AFTER

No Problem

Problem but fully adopted

Small problem

Medium Problem

Large Problem Total

No Problem 186 2 2 2 3 195

(69.9)

Problem but fully adopted

4 27 - - - 31 (11.1)

Small problem 14 5 2 - - 21 (7.5)

Medium Problem 12 2 1 6 - 21 (7.5)

Large Problem 2 - - - 9 11 (3.9)

Total 218 (78.1) 36 (12.9) 5 (1.8) 8 (2.9) 12 (4.3) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 14.4% improved, 82.4% remained same, 3.2% worsened.