RESEARCH PROPOSAL Final
RESEARCH PROPOSAL Final
Research Group 8
Supervisor-Dr.Nilanthi senanayake
([email protected])
Table of Contents
Table of contents …………………………………………………1
List of Abbreviations……………………………………………..2
Annexures………………………………………………………...3
Chapter 1 : Introduction…………………………………………..4
Chapter 3 : Methodology…………………………………….…..21
References……………………………………………………….30
1
List of Abbreviations
NHSL - National Hospital of Sri Lanka
MB - Multi bacillary
PB - Pauci bacillary
2
List of Annexures
Annexure 1 - Questionnaire ( English, Sinhala and Tamil)
3
CHAPTER 1
INTRODUCTION
1.1 Background
1.1.1 What is Leprosy
Leprosy is a chronic infectious disease that predominantly affects the skin and peripheral
nerves caused by a type of bacteria, Mycobacterium leprae.
If left untreated, Leprosy causes progressive and permanent disabilities. The precise mode of
transmission of leprosy is still uncertain but it is likely to be via droplets from the nose and
mouth. But Leprosy is not highly contagious thus transmission only occurs with prolonged,
close and frequent contact with untreated cases. Therefore, Infection is related to poverty and
overcrowding. (Feather, Randall and Waterhouse,1987)
Early diagnosis and treatment are crucial to prevent further complications and permanent
disabilities. Along the journey of battling Leprosy, the World Health Organization has
introduced multidrug therapy (MDT), which can completely cure leprosy. (World Health
Organization, 2023)
The disease is clinically characterised by one or more of three cardinal signs: hypopigmented
or erythematous skin patches with definite loss of sensation, thickened peripheral nerves, and
acid-fast bacilli detected on skin smears or biopsy material. (Bhat and Prakash,2012)
Pathogenesis:
After entering the host respiratory tract through close contact, bacteria spread throughout the
body via the lymphatic system, particularly to the peripheral nerve system. When the human
immune system attempts to attack the germs, the amplified immune response causes
granuloma formation and tissue death.(Hess, Rambukkana, 2019)
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Mycobacterium lepromatosis is a newly found cause of leprosy. This agent, discovered by
sequencing bacterial DNA from leprosy biopsy samples, is a close relative of the previously
identified Mycobacterium leprae. (Kumar, Abbs, and Aster, 2017).
Leprosy patients are categorised into two kinds based on clinical presentation and
investigation results, which differ depending on histological findings and host immunological
status. The two types of leprosy are tuberculoid (PB) and lepromatous (MB) (Pinheiro et al.,
2018).
PB instances are distinguished by cell-mediated immunity to the bacterium and low infection.
This is clinically recognised as a case of leprosy with 1 to 5 skin lesions and no visible bacilli
in a skin smear. On the other hand, MB cases are mediated by the humoral immune response
and have a larger bacillary load than PB patients. A case of leprosy with more than five skin
lesions, nerve involvement (pure neuritis or any number of skin lesions plus neuritis), or the
presence of bacilli in a slit-skin smear, regardless of the number of skin lesions, is classified
as an MB case. (World Health Organisation, 2023).
Skin rashes, severe febrile sickness, and nerve involvement are common clinical
manifestations of leprosy. A hypopigmented skin rash with loss of feeling and swelling of
peripheral nerves can aid in the diagnosis of leprosy. (Feather, Randall, & Waterhouse 1987).
The complications of Leprosy are produced by the host's immune reaction and the resulting
nerve compression, rather than the bacteria itself. Issues are classified generically into
neurological, ophthalmological, hand and foot involvement, and systemic issues.
Neurological complications occur due to neuritis caused by invasion of the nerve trunks
which manifests as tenderness, thickening and irregularity of the nerve and impaired sensory
motor function. Due to loss of innervation to the skin glands and hair follicles, they die
leading to dryness, ulceration and fissuring of the skin.
In terms of the hand and foot, injury to the ulnar or median nerve results in loss of sensation
in the hand as well as paralysis of the hand muscles, which results in claw hand deformity.
Ulnar deviation at the wrist joint may result from extensive involvement of the ulnar and
median nerves.
The locations that the common fibular nerve supplies may experience hypoesthesia or
anaesthesia if the nerve or any of its branches are compromised. Foot drop may result from
an impairment to the ankle's dorsiflexors. The sole may become anaesthetic if the posterior
tibial nerve is compromised. Claw toes appear when the intrinsic muscles of the foot become
paralysed.
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systemic complications can occur in patients with multibacillary Leprosy. Renal damage can
occur due to type 2 hypersensitivity reactions or as a result of secondary amyloidosis. This
can present as glomerulonephritis, interstitial nephritis or renal failure. Some of the other
systemic complications that can occur in leprosy include abnormalities of the peripheral
vessels, endothelial cell infection, autonomic dysfunction and ischaemic ulceration. (Thomas,
2017)
Diagnosis:
Diagnosis of Leprosy is often done clinically, but in cases that are difficult to diagnose
laboratory services are required.
Leprosy has very characteristic clinical features and manifests mainly on skin and peripheral
nerves. Three cardinal signs of leprosy are useful for clinical diagnosis. They are, ‘definite
loss of sensation in a pale (hypopigmented) or reddish skin patch; (2) thickened or enlarged
peripheral nerve, with loss of sensation and/or weakness of the muscles supplied by that
nerve; (3) microscopic detection of bacilli in a slit-skin smear.’’(World Health
Organization,2023)
To complement the clinical diagnosis certain investigations are done. Some of them are, skin
slit smears; which are done by scraping the exposed skin and microscopically examining it
for acid-fast bacilli. M. leprae DNA PCR is very specific. Lepromian test; which is an
intradermal test for type IV hypersensitivity to M. leprae antigens. (DermNet,2023)
Management:
Multidrug therapy is the current recommended treatment method because of the development
of resistance to Dapsone.The multidrug regime consists of dapsone,rifampicin and
clofazimine. Usually, a short course of therapy is used unless the disease is severe. Drug
regime depends on whether the leprosy is due to multibacillary or paucibacillary. According
to the World Health Organisation, if it is multibacillary leprosy, rifampicin 600 mg once
monthly, clofazimine 300 mg once monthly, clofazimine 50 mg daily and dapsone 100 mg
daily continue for 12 months. If the leprosy is paucibacillary, administer 600 mg of
rifampicin once a month along with 100 mg of dapsone for a period of six months. To avoid
ulcers, it's essential to take good care of your hands and feet in addition to taking medication.
Protective shoes are canvas ones with padded soles. Leprosy patients also receive
occupational and physical therapy as part of their care. Along with treating trophic ulcers,
surgery is also utilised to treat abnormalities of the hands, foot, and face. (Randall, Feather,
and Waterhouse, 1987)
Prevention:
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Prevention of leprosy can be achieved through various measures. Estimation of the burden of
leprosy, early case detection, chemotherapy and surveillance, immunoprophylaxis,
chemoprophylaxis and health education are the major measures that can be taken. (Anjum,
2019)
The burden of leprosy can be estimated using a quick random sample survey which gathers
information about the prevalence of leprosy, age and sex-wise distribution, and various forms
of leprosy. These estimates are essential for planning, implementing and evaluating the
results of the control programme. (Anjum, 2019)
Early case detection is also an important step in the prevention of leprosy. In Sri Lanka,
leprosy is a Group B notifiable disease. So the medical professionals should notify the
medical officer of the health of the patient’s area of residence by the form “Notification of a
Communicable Disease”(H544). This notification should be done on clinical suspicion
without waiting for a definitive diagnosis. The public health officer of the relevant area traces
the notified case and does a contact survey. (Epidemiology Unit)
Immunoprophylaxis can be achieved by using the BCG vaccine and the chemoprophylaxis is
done using a single dose of rifampicin. These prophylaxis therapies can be given to the
contacts and other high-risk groups.
Health education is also an important measure that can be used to improve health-seeking
behaviour and subsequent prevention of the disease.
According to WHO the case detection and treatment with MDT alone are insufficient to
prevent transmission. WHO recommends tracing household contacts along with
neighbourhood and other social contacts of each case to boost the prevention of leprosy.
Further, a single dose of rifampicin can be given as prophylaxis chemotherapy(World Health
Organization,2023)
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According to recent epidemiological findings, the current disease burden of the country is
approximately 2000 new cases of leprosy every year ( World Health Organization, 2016)
According to the annual report of the Anti-Leprosy Campaign 2020, patients are treated by
90 dermatological clinics throughout the country. According to the provincial performance
indicators in 2020, the highest percentage of 34% of new cases were reported in Western
Province. The second and third highest percentages were reported from Eastern and Southern
provinces respectively. The majority of late presenters were seen in Colombo district 43
(28%), Gampaha 42(32.56%) and Anuradhapura 34(43.59%) in 2020. (Anti-Leprosy
Campaign Sri Lanka,2020)
Leprosy is considered as a neglected tropical disease. In the 1980s more than 5 million
diagnosed Leprosy cases were reported all over the world. However, with the introduction of
multidrug therapy (MDT), a significant reduction in disease prevalence over decades has led
to 133,802 cases in 2021. However new cases were continuously occurring depicting
continuity of disease transmission. In order to prevent transmission several steps were taken
globally; including screening contacts and giving a prophylaxis dose of rifampicin to high-
risk individuals. Also, the Global Leprosy Strategy 2021-20302 was developed with the goal
of eliminating Leprosy. (World Health Organization, 2021)
“Globally, the registered prevalence of leprosy (number of cases on treatment at the end of
2021) was 133 802, and the prevalence rate was 16.9 per million population.” Out of 133 802
cases about 81 222 (39.4%) were from the South East Asian Region which includes Sri
Lanka. (Global Leprosy Strategy, 2021-2023)
''Health care-seeking behaviour has been defined as any action undertaken by individuals
who perceive themselves to have a health problem or to be ill for the purpose of finding an
appropriate remedy.'' (Oberoi et al., 2016)
Time of presentation throughout the course of the disease is a key factor in assessing health-
seeking behaviour.
Late presentation; which is the percentage of new patients who presented for treatments after
6 months of the appearance of symptoms, depicts poor health-seeking behaviour in a
community. In 2020, the late presentation was 28.2% in Sri Lanka. (Anti-Leprosy Campaign
Sri Lanka,2020)
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received were also used to assess the health-seeking behaviour. (Ali et al.,2015) ,
(Gopalakrishnan et al.,2021)
There are many associated factors for health-seeking behaviour. They can be categorised as
modifiable and non-modifiable factors.
In various studies done worldwide on Leprosy, many factors were studied and proven to be
associated with health-seeking behaviour. Socio-demographic factors, knowledge of the
disease and its transmission and the onset and progression of the disease are a few of
them.(Samraj, Kaki, Rao, 2012), (Zhang et al.,2009)
Studying those associated factors is important in modifying those factors to minimise the
delayed presentation.
Among socioeconomic characteristics, Income and Poverty are major factors. People with
lower socioeconomic status may face challenges affording transportation to healthcare
facilities or missing work for appointments. Studies have shown a link between poverty and
delayed diagnosis of leprosy (e.g., Rao et al., 2011).
Education level can also influence health-seeking behaviour. Lower levels of education can
reduce awareness of symptoms and the importance of obtaining medical assistance. People
with little education may be more vulnerable to misconceptions about leprosy, resulting in
delayed diagnosis (Miguel et al., 2014).
The social stigma associated with leprosy is a major barrier to seeking healthcare. Fear of
discrimination can prevent people from getting diagnosed and treated (e.g., Van den Boom et
al., 2009).
Upon clinical presentation, the severity of symptoms can alter the health-seeking behaviour
Patients with mild symptoms, especially those in early stages, might not recognize the
seriousness of the condition and delay seeking medical attention (e.g., Uneke et al., 2008).
Also, the presence of visible deformities associated with advanced leprosy can lead to shame
and social isolation, discouraging people from seeking help due to fear of stigma (e.g., Van
den Boom et al., 2009)
Understanding these factors is crucial for developing effective strategies to encourage early
diagnosis and treatment of leprosy.
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1.1.6 Gaps in knowledge related to Leprosy in Sri Lanka and How this
research could be used to bridge them.
Associated factors for the health-seeking behaviour among Leprosy patients has not been
studied in the Sri Lankan setting. Therefore we identified that as a knowledge gap.
Health-seeking behaviour in Leprosy patients alone has also been studied only once in
Anuradhapura (Weerakoon et al 2022) which is relatively a rural setting compared to
Colombo. Due to that the health-seeking behaviour and its associated factors may be different
in those two districts. Also, the majority of the new cases are detected in the Colombo
district, (Anti-Leprosy Campaign Sri Lanka,2020) which makes it ideal to conduct a study on
leprosy in the Colombo district.
1.2 Justification
Before 1995 leprosy was a prevalent disease in Sri Lanka. Due to the establishment of the
Anti-Leprosy Campaign and clinics throughout the country and treatment with multidrug
therapy, the prevalence of leprosy in Sri Lanka was brought down below 1 per 10,000
population in 1995. But decades later due to the identification of approximately 2000 new
cases of leprosy every year WHO identified Sri Lanka as a high-burden country. ( World
Health Organization, 2016). The new case detection rate sharply increased from
1989(7/100,000) to 1991 (17/100,000). It declined steeply in 1998 and then showed a
fluctuating pattern until 2019(7.6/100,000).(Wijesinghe, Ranaweera and Fine, 2023).
Considering the recent data available, according to the provincial performance indicators in
2020, the highest percentage of 34% of new cases were reported in Western Province.(annexe
3) The majority of late presenters were seen in Colombo district 43 (28%), Gampaha
42(32.56%) and Anuradhapura 34(43.59%) in 2020. (Annexure 3)
The current disease burden of the country is approximately 2000 new cases of leprosy every
year. (Annexure 2)
Globally the prevalence of leprosy at the end of 2021 is 133,802 prevalence rate was 16.9 per
million population. Out of these 133,802 patients, 39.4% were from the Southeast Asian
region which includes Sri Lanka. (‘WHO Global leprosy strategy 2021–2030 | ILEP
Federation’)
Leprosy is a prevalent disease globally as well as in Sri Lanka and there is a lack of research
evidence in the Sri Lankan setting, therefore there is a requirement for new research to be
done on that topic. When considering our specific research topic there is almost no research
evidence in the Sri Lankan setting. There are studies done to assess the health-seeking
behaviour among leprosy patients, but no research has been done to assess the ‘factors
associated’ with the health-seeking behaviour.
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One of our objectives in the research is to find associated factors related to health-seeking
behaviour among leprosy patients, therefore by identifying these factors, we can take
measures to minimise the modifiable risk factors. Also, since Sri Lanka is a low-resource
country, prioritising the population groups with non-modifiable risk factors is beneficial.
Studies done regarding the knowledge of the disease among leprosy patients show that a
considerable proportion of patients have poor knowledge of symptoms, transmission,
curability and cause of leprosy. A study done in Bangladesh reveals that around 65% of
patients believed that leprosy is related to supernatural power. This poor knowledge and
misbeliefs lead to the usage of alternative treatment methods and delays in proper
treatment(Ali et al.,2015). So, it is important to describe the association between health-
seeking behaviour and knowledge of disease in the Sri Lankan setting.
The clinical presentation of leprosy can be related to skin (skin appendages and skin lesions),
nerves, leprosy reactions, disability, and facial and other organ features. These clinical
presentations may affect the health-seeking behaviour of patients. The effect of clinical
features on a patient's day-to-day life, their psychological state and the nature of the clinical
feature to mimic other diseases can affect the health-seeking behaviour of the patients.
Also, studies have shown that delay in diagnosis leads to an increase in the rate of disabilities
(Meima et al.,1999) (Deps et al.,2006). So, by identifying the factors that are associated with
the health-seeking behaviour of leprosy patients, the relevant authorities intervene to
minimise the delay in presentation. Then the health care providers can start the treatments in
earlier stages of disease, thereby reducing the rate of development of complications of
leprosy. These complications lead to stigma and other psychological problems which most
patients with delayed diagnosis are suffering(Garbin et al.,2015) can be prevented.
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1.3 Objectives
1.3.1 General Objective
Describe the health-seeking behaviour and its association with knowledge on leprosy and
other selected factors among leprosy patients attending clinics in Colombo district.
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CHAPTER 2
Literature review
2.1 Literature search
We searched our literature on PUBMED, Google Scholar and Semantics Scholar. The
keywords of the research topic are ‘Leprosy’, ‘health-seeking behaviour’, ‘associated
factors’, ‘Sri Lanka’. Therefore, we used Boolean operations to search for the following
terms to filter the results: “Leprosy AND Sri Lanka”, “Leprosy AND health-seeking
behaviour”, “Leprosy AND health-seeking behaviour AND associated factors ”, “Leprosy
AND health-seeking behaviour AND associated factors AND Sri Lanka”. We used the age
filter ( above 12 years) since we were to conduct the research on patients above 12 years of
age. We include information from journal articles, e-books, and review articles found through
these searches.
Leprosy has been present in Sri Lanka for centuries. During the Dutch colonial era, it was
documented as an infectious disease, leading to the establishment of dedicated healthcare
facilities for Leprosy patients like hospitals in Hendala and Mantivu. However, these early
efforts lacked effective therapies, resulting in limited success in combating the disease.
The introduction of the bacillus Calmette Guerin (BCG) vaccine in 1949, was a turning point
in the fight against leprosy in Sri Lanka. The vaccine unexpectedly showed a positive impact
in reducing leprosy cases. This progress continued with the implementation of multidrug
therapy (MDT) in 1983 by the World Health Organization, marking a considerable decline in
the prevalence of leprosy in the years following 1983. (Wijesinghe et al., 2023)
According to a study on Social Marketing to Eliminate Leprosy in Lanka, Sri Lanka was the
first country in South Asia to provide MDT to all registered leprosy patients, first making it
available in 1984. So in 1990, a social marketing program was launched by the health
ministry and the Novartis Foundation for Sustainable Development to eliminate leprosy from
Sri Lanka. The program encouraged people with suspicious skin lesions to seek proper
diagnosis and treatments, taught healthcare providers to recognize leprosy and refer cases for
treatment, and educated the general public on the disease. MDT was socially marketed and
provided free of charge to all leprosy patients (Williams et al., 1998)
According to a study done on Leprosy control in Sri Lanka, Few other important measures
were taken simultaneously to eliminate the disease. school surveys, contact surveys and
selected mass surveys were conducted. They found that due to the stigma attached to leprosy,
affected individuals were more prone to consult private practitioners. Therefore campaigns to
13
educate doctors throughout the country were launched. Also in 1991, 25 additional clinics
were opened to meet the increasing demand. ( Dewapura., 1994)
As a result of all the above measures, in 1995 the country achieved the WHO elimination
goal of a ‘leprosy prevalence of <1 per 10,000 population’. But, just decades later, WHO
identified the country as a ‘high burden’ country, with approximately 2000 new cases of
leprosy being reported every year ( World Health Organization., 2016)
As for the data available regarding the epidemiology of Leprosy in Sri Lanka, we went
through the annual report of the Anti leprosy campaign. In the year 2020, a total of 1212 new
patients; including new cases, relapsed cases, treatment restarted cases and changed treatment
regimen cases were detected and were treated by 90 dermatological clinics throughout the
country. Among new patients 29.6% were female and 10.7% were children under 15 years.
Considering the provincial performance indicators in 2020, the highest percentage of 34% of
new cases were reported in Western Province. The second and third highest percentages were
reported from Eastern (15%) and Southern (12.6%) provinces. The majority of late presenters
were seen in districts, Colombo 42 (28%), Gampaha 42 (32.56%) and Anuradhapura 34 (
43.59%) Regarding the source of referrals, the majority of the cases were self-referrals
(68.75%) and 13.1% were referred from private sector. ( Anti-Leprosy Campaign Sri Lanka.,
2020)
Regarding the more recent data available in the nation, we examined a descriptive cross-
sectional study conducted among leprosy patients diagnosed at the Dermatology Clinic of the
Teaching Hospital, Anuradhapura, between February 13, 2019, and February 12, 2020. The
study examined sociodemographic factors, treatment-seeking behaviours, and common
clinical presentations. There were 66 leprosy patients in the study. In terms of the patients'
sociodemographic characteristics, the bulk of them (56%) were men, and 50% of them were
between the ages of 30 and 50 (median age: 41; interquartile range: 6-70). Seven patients
(10.6%) were under the age of fourteen. Housewives made up the majority of the patients
(26%) and farmers came in second (19%).
Regarding the knowledge of Leprosy, More than two-thirds (68%, n=45) of patients had
heard about leprosy before being diagnosed with the disease. Most (67%, n=44) of the
patients knew the causative agent of leprosy as a bacteria, and the majority of them (71%,
n=47) knew the mode of transmission as respiratory droplets. In addition, 91% (n=60) of the
patients knew that the skin was the most commonly affected organ. Half of the patients were
referred for treatment after being seen by one medical personnel, and 16% of patients
warranted repeated visits. More than 50% of the patients were not timely referred for
treatment because of the delay in seeking medical advice, and they were referred after one
year of developing clinical features. Regarding the clinical presentation Many patients
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2.3 Health-seeking behaviour in Leprosy
The Anti-leprosy campaign in Sri Lanka emphasises on the late presentation of leprosy
patients. ''Late presentation is the percentage of new patients who presented for treatment
after 6 months of the appearance of symptoms. It denotes the lack of community awareness
and poor health-seeking behaviour. In 2020, the late presentation was 342 (28.2%). '' ( Anti-
Leprosy Campaign Sri Lanka., 2020)
An explorative and descriptive study was done using 100 respondents to understand the
health-seeking behaviour of leprosy patients in Rajshahi division, Bangladesh. Among them
around one-third of patients are delayed in taking proper treatment. The average duration of
delay is six months. Most of the patients had not known about leprosy at the time of
diagnosis. They have thought of it as a skin disease. Due to lack of knowledge,45% of
patients have got Salve(ointments) as their treatment. 35% have followed homeopathy.10%
Only 5% have taken treatment from a medical hospital. This research reveals very poor
health-seeking behaviour among the patients. (Ali et al., 2015)
A study carried out among 88 newly diagnosed leprosy patients in a low-endemic area of
China reveals that the total mean delay to initiate treatment was 50.18 months. The mean
patient delay was 24 months and the mean health service delay was 257 months. Ignorance of
illness was the main reason for the patient's delay. (Zhang et al., 2009)
Research has been done by P.G. Nicholls and others to determine the elements that contribute
to the delay in leprosy diagnosis and treatment initiation. Between January and August of
2000, research was conducted in west Bengal, India, and northern Bangladesh. They
conducted 104 patient interviews, revealing each person's story of their behaviour in seeking
health as well as the background of their attitudes and beliefs. They also investigated the
aforementioned elements and spoke with 356 leprosy patients. The study examined the
duration between the onset of symptoms and the initiation of successful treatment, which was
found to be 18 months on average in Purulia and 20 months on average in Nilphamari.The
study reveals a notable delay in these areas' health-seeking behaviour. (Nicholls et al.,2005)
15
A case-control study conducted in three major states of India recruiting 140 newly registered
adult leprosy patients has evaluated the delay in reporting patients and factors. “The median
patient delay in the three states of Delhi, Gujarat and West Bengal was five months (0.7-1.8),
2.8 months (2-14) and 12 months (2-24), respectively.”(Govindarajulu et al., 2023)
An explorative and descriptive study was done using 100 respondents to understand the
health-seeking behaviour of leprosy patients in Rajshahi division, Bangladesh. The research
reveals that rich people get quicker treatment in comparison to poor people. Among the
economic class, 79% of working-class patients have a higher impact on economic factors
regarding treatment. (Ali et al., 2015)
Another study states “Nearly 78.1% of the respondents were married. About 89.2% of the
respondents belonged to nuclear families and 26.1% completed high school education and
19.1% were illiterate. About 29.4% were unemployed and 26.3% were employed in
semiskilled work. According to the modified BG Prasad socioeconomic classification (2019),
38.1% belong to the upper middle class and 25.5% to the middle class”(Gopalakrishnan et al.,
2021)
A hospital-based case-control study done in India states“Residing in Rural and Urban- slum
areas, lower education, low per capita monthly income, Extended family, unsafe water for
domestic purpose, presence of animals in house/yard, unhygienic habit of sewage disposal,
frequent bathing in open water bodies, working barefooted were associated with Leprosy.
The presence of BCG scar was found to reduce the risk of Leprosy.”(Jariwala et al., 2013)
Another study done on sociodemographic factors related to leprosy states that “maximum
number of patients in the study population was in the 15-59 years of age group. Adults
comprised 92.03% (254), children and geriatric individuals affected with leprosy constituted
7.97% (22) and 11.23% (31) respectively.”(Guthi, Arepalli and Ganapa, 2016).
The study further states “More than one-third of the study population (42.03%) were
illiterates followed by educated up to primary school (29.35%), 11.23% were educated up to
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high school, 7.98% were studied up to upper primary school, 6.15% had received education
up to intermediate and 3.26% were graduates.”(Guthi, Arepalli and Ganapa, 2016)
A study done by participants from India and Indonesia found that in both countries
knowledge on cause, mode of transmission, early symptoms and contagiousness of leprosy is
poor. The study further found that health workers had the highest leprosy knowledge and the
community members had the highest stigma levels. also, they found that some people believe
that leprosy is transmitted from generation to generation some also believe that leprosy
occurs as a result of karma.(Van’t Noordende et al., 2021)
An explorative and descriptive study was conducted using 100 respondents to understand the
health-seeking behaviour of leprosy patients and associated factors in Rajshahi division,
Bangladesh. Most of the patients had not known about leprosy at the time of diagnosis. They
have thought of it as a skin disease. Due to lack of knowledge,45% of patients have got
Salve(ointments) as their treatment 35% have followed homoeopathy. Only 5% have taken
treatment from a medical hospital. 40% of patients believe that leprosy is a result of their sin
and 65% believe that it is related to supernatural power. (Ali et al., 2015)
Another research done on community knowledge, attitude and perceived stigma of leprosy
among community members living in southern central Nepal reveals that 36% of 423
participants lack knowledge on the cause of leprosy. Only 43.8% of participants knew that it
is transmitted by prolonged close contact with a patient. 25.7% have reported religious rituals
as the treatment method. Overall only 42.1% have had good knowledge and 40.9% have had
a favourable attitude. (Singh R, Singh B, Mahato, 2019)
A study done in rural areas of Guntur district states “The respondents interviewed, in that
40% reported that leprosy could be treated with anti-leprosy drugs recommended for the
treatment of leprosy before educational intervention but after intervention it was reached to
80%. While 36.8 % also believed in medicinal herbs as a cure for leprosy, but after
educational intervention reached to 13%, the role of avoiding taboo food and religious rituals
in the treatment of leprosy before the intervention stated by 24.3 % and 70 % but after the
intervention it is reached to 12% & 2% respectively”(Niranjan et al., 2017)
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2.6 Leprosy and common clinical presentations
The primary areas of the skin and peripheral nerves are affected by leprosy, according to the
World Health Organisation (WHO).According to WHO guidelines, "at least one of the
following cardinal symptoms must be present in order to diagnose leprosy: A pale
(hypopigmented) or reddish skin patch with a distinct loss of sensation; a thicker or enlarged
peripheral nerve accompanied with a loss of sensation and/or weakening in the muscles it
supplies; and a microscopic finding of bacilli in a slit-skin smear.(World Health
Organisation.,2023)
A cross sectional study has done in Yunnan, China by enrolling newly diagnosed leprosy
from 2010 to 2020.We examined the data from 2125 newly diagnosed leprosy patients,
totaling 5000 symptoms. Common symptoms associated with leprosy included numbness
(828/5000, 16.56%), erythema (802/5000, 16.04%), painless nor pruritic skin lesions
(651/5000, 13.02%), eyebrow hair loss (467/5000, 9.34%), and tubercles (442/5000, 8.84%).
The MB group was primarily affected by cutaneous symptoms (1935/2533, 76.39%) and
leprosy reaction (279/297, 93.94%). The delayed diagnosis group exhibited a higher
prevalence of disability-related symptoms (263/316, 83.49%), clinical features (38/56,
69.09%), and facial features (19/23, 82.61%).Even though they were in small numbers,
leprosy diagnosis was associated with formic feeling (99/5000, 1.98%), discomfort (92/5000,
1.84%), pruritus (56/5000, 1.12%), finger contracture (109/5000, 2.18%), muscle atrophy
(71/5000, 1.42%), and motor dysfunction (18/5000, 0.36%). Skin, skin and nerve, and nerve
symptoms were found in proportions of 33.25%, 44.95%, and 21.80% as early symptoms and
28.66%, 57.81%, and 13.91% as only symptoms, respectively.When compared to skin and
skin and nerve complaints, nerve symptoms were more common in those with physical
disabilities (57.65% and 65.36% for the initial and sole symptoms, respectively). When
compared to skin and skin and nerve symptoms, nerve symptoms were more common in the
delayed diagnosis group (15.73% and 17.25%) and were linked to the longest diagnostic
intervals (mean±SD: 38.88±46.02 and 40.35±49.36 months for initial and only symptoms,
respectively).(Chen, Zha, Shui, 2021)
A study done in India found that the most common clinical presentation in leprosy patients is
anaesthetic to hypoesthetic patches which is 64.1% followed by fever, oedema of the
hands/feet with skin lesions (16.57%) and erythematous plaques (9.94%).(Goel, Chopra and
Gera, 2021)
A study done in Sri Lanka states that “ there is a significant positive correlation between
clinical detection, ultrasound measures of nerve enlargement and slowing of motor nerve
conduction velocity and sensory nerve conduction of ulnar nerve and common peroneal
nerve”(Prasangika et al., 2021) . The study further states that early nerve damage is not
detected early due to reasons such as lack of symptoms and signs, social stigma and difficulty
in eliciting nerve involvement.(Prasangika et al., 2021).
In addition to the above-mentioned symptoms and signs, there can be some abnormal clinical
presentations of leprosy such as blisters in the skin, and thickening of nerves in the absence
of skin pigmentations.(Tayshetye et al., 2013).
18
A study done in Anuradhapura, Sri Lanka found the common clinical presentations of leprosy
according to the the percentage as hypopigmented skin patches, brownish skin patches,
multiple symptoms, skin nodules, nerve thickness with a percentage of
47%,21%,15%,8%,5% respectively. The study also looked for the affected site and they
found that the upper limb(39%) is the most commonly affected site. The other sites which
they found are multiple sites (26%), trunk(17 %), lower limb (9%) and the face (9%).“Half of
the patients were referred for treatment after being seen by one medical personnel, and 16%
of patients warranted repeated visits. More than 50% of the patients were not timely referred
for treatment because of the delay in seeking medical advice, and they were referred after one
year of developing clinical features.”(Weerakoon et al., 2022).
So, it is important to recognise the early and common clinical manifestation of leprosy to
prevent patients from developing complications.
An explorative and descriptive study was conducted using 100 respondents to understand the
health-seeking behaviour of leprosy patients in Rajshahi division, Bangladesh.Among them
around one-third of patients delayed to take proper treatment. The average duration of delay
is six months. Most of the patients had not known about leprosy at the time of diagnosis.
They have thought of it as a skin disease. Due to lack of knowledge,45% of patients have got
Salve(ointments) as their treatment 35% have followed homoeopathy. Only 5% have taken
treatment from a medical hospital. 40% of patients believe that leprosy is a result of their sin
and 65% believe that it is related to supernatural power. Also, the research reveals that rich
people get quicker treatment in comparison to poor people. Among the economic class, 79%
of working-class patients have a higher impact on economic factors regarding treatment. In
conclusion, leprosy patients' health-seeking behaviour is a mixed result of awareness,
knowledge,socio-cultural, economic and belief factors. Among them “Unconsciousness of
leprosy of the study is one of the major influential factors regarding health-seeking
behaviour.” (Ali et al., 2015)
A study carried out in a low-endemic area of China reveals that the total mean delay in
initiating treatment was 50.18 months. The mean patient delay was 24 months and the mean
health service delay was 257 months. Ignorance of illness was the main reason for the
patient's delay. (Zhang et al., 2009)
19
Research has been done by P.G. Nicholls and others to determine the elements that contribute
to the delay in leprosy diagnosis and treatment initiation. Between January and August of
2000, research was conducted in west Bengal, India, and northern Bangladesh. They
conducted 104 patient interviews, revealing each person's story of their behaviour in seeking
health as well as the background of their attitudes and beliefs. They also investigated the
aforementioned elements and spoke with 356 leprosy patients. The study examined the
duration between the onset of symptoms and the initiation of successful treatment, which was
found to be 18 months on average in Purulia and 20 months on average in Nilphamari.
According to the research, the main reason for the delay in the first action occurred when
people simply monitored or ignored the first symptoms, 80% in Nilphamari and 67% in
Purulia. (Nicholls et al., 2005) .
20
CHAPTER 3
METHODOLOGY
3.1. Study design
This research study will be conducted as a cross-sectional descriptive study with an analytical
component.
The research study will be carried out in dermatology clinics in two selected tertiary care
hospitals and central leprosy clinic. The selected tertiary care hospitals are NHSL and
Colombo South teaching hospital. We chose these settings because the majority of leprosy
patients in Colombo district are attending these clinics.Number of leprosy patients attending
to Dermatology clinic of NHSL, CSTH and central leprosy clinic respectively 15,10,15 per
day. Since we are enrolling participants from the main three clinics in Colombo district, a
variety of socioeconomic groups are represented in the sample. Also, these three clinics are
easily accessible.
The study will extend from march 2024 to november 2024 and data collection will be carried
out during the month of august 2024.
1. Above the age of 12 years. Considering a child can make independent decisions regarding
giving consent for the study at that age.
21
3.4.2. Exclusion criteria
Under ideal circumstances, the minimal sample size required for a descriptive cross- sectional
study of this nature is 384. However, pertaining to the limited turnover of patients ranging for
about 150, a rough count of around 120 participants are to be enrolled in order to satisfy the
requirements.
The minimal sample size of 384, required for a descriptive cross-sectional study of this nature
was identified based on the equation,(Lachenbruch, Lwanga and Lemeshow, 1991)
n – sample size
l – Precision 5%
Patients attending these clinics from 8 am to 12 pm who fulfil our inclusion criteria will be
selected by consecutive sampling until our target sample size is achieved.
22
4. Marital status
5. Occupation
6. Educational level
7. Monthly household income
The study instrument used for the purpose of this study will comprise four separate sections.
All four of those sections will be administered by the interviewers to the participants. The
questionnaire was developed by taking inputs from Weerakoon et al., 2022 , Ali et al., 2015
and Gopalakrishnan et al., 2021. The phrase validation was done by Dr.Nilanthi Senanayake,
Consultant microbiologist. The pre-testing was done in a similar population in Bopepoddala
MOH area. The questionnaire was given to five leprosy patients and feedback was taken.
23
Section 3 – Interviewer administered questionnaire developed by the investigators to assess
knowledge and attitudes of the participants regarding the disease at the time of diagnosis.
3.7.2.1 Section 1
3.7.2.2 Section 2
We consider the delay in presentation as the period from the initiation of symptoms until the
first presentation to a healthcare facility. For our study, we consider any allopathic healthcare
establishment as a proper healthcare facility. If the time taken for presentation was more than
6 months it is considered as a delayed presentation.
The translation and validation of the questionnaire amongst the Sinhalese and Tamil speaking
population will be done in the same way as mentioned in 3.7.2.1.
3.7.2.3 Section 3
24
It consists of 8 questions including multiple response questions, questions with ‘yes’ or ‘no’
options as answers and questions with ‘yes’ , ‘no’ , and ‘don't know’ as answers.
The translation and validation of the section 3 of the questionnaire amongst the Sinhalese and
Tamil speaking population will be done in the same way as mentioned in 3.7.2.1.
3.7.2.4 Section 4
The translation and validation of the section 4 of the questionnaire amongst the Sinhalese and
Tamil speaking population will be also done in the same way as mentioned in 3.7.2.1.
Ethical clearance will be obtained from the Ethics Review Committee of the Faculty of
Medicine, University of Colombo.
Administrative clearance will be acquired from the director of the National Hospital of Sri
Lanka, Colombo, south colombo teaching hospital and the director of the anti leprosy
campaign .Also permission will be taken from the dermatologist in the respective clinics.
A discussion amongst the investigators will take place to ensure that the administration of the
questionnaire takes place in the same manner so that the results obtained are due to true
differences in the study population and not due to differences in the administration of the
questionnaire.
25
3.8.4 Recruitment procedure for eligible persons
All participants will be obtained in accordance with the sampling method mentioned in 3.6
above. Patient recruitment will be made after verbal confirmation of the age and assistance
will be obtained from the medical officers to identify patients with significant memory
impairment.Those, who satisfy the inclusion and exclusion criteria will be explained about
the research and informed written consent via a signature will be obtained from those who are
willing to participate.
Data collection process will take place in a separate room to assure the confidentiality of the
patient. The patient will be interviewed alone by the investigators without the presence of the
caregivers.Also data regarding the initial clinical presentation will be obtained from the clinic
record book to minimise the recall bias.After completion of the data collection procedure all
participants will be given a chance to clarify any doubts they have.
The first part of the questionnaire includes socio-demographic data, which will direct
participants to take a good entrance to provide answers to the rest of the questions. Measures
such as, emphasising the importance of the research before filling out the questionnaire,
Using simple and direct language avoiding technical words and complicated words related to
medicine,avoiding leading questions, breaking down big questions into small multiple
questions and immediately checking the questionnaire for completion after collecting the
data.
The research proposal and the study instruments will be reviewed by the Anti Leprosy
Campaign, Sri Lanka and by a consultant Microbiologist of the Faculty of Medicine,
University of Colombo.
Following the study a copy of the research report will be sent to the Anti Leprosy Campaign
to identify the socioeconomic groups with significant lack of health seeking behaviour to take
necessary measures to improve the health seeking behaviour towards Leprosy in Colombo
district.
26
3.9.2 Assessment of risks and benefits
The study instruments will be thoroughly reviewed by the student supervisors of the
community stream research program, Director of the Anti-Leprosy Campaign Sri Lanka and
by a consultant Microbiologist in order to ensure that the components do not impose any sort
of distress to the patient. If such components are found, amendments will be made
accordingly.
A copy of the research report will be submitted to the Anti-Leprosy Campaign, Sri Lanka
and recommendations will be made to improve health seeking behaviour in both patients with
Leprosy and the general public in high disease prevalent areas, by addressing the modifiable
factors identified during the data analysis. Knowledge gaps that are identified by the study
will be helpful to conduct awareness campaigns for both patients and the general public.
Also, the findings will be published in the student scientific sessions and in the Community
medicine research abstracts books.
Since there is a lack of research on the field of leprosy in Sri Lanka, the findings of our study
will be scientifically important for future research purposes.
All participants will be recruited to the study following a detailed explanation in the
language of preference and following informed consent.
Patients will be allowed to leave the study at any point and patient confidentiality will be
ensured. By this policy we ensure all the participants autonomy as well as the basic human
right of decision making.
27
All participants will be treated equally in spite of their social, cultural and sociodemographic
variants.
3.9.5 Confidentiality
The confidentiality will be ensured before, during and after the collection of data such that no
data is held by individuals outside the investigators.
Names of participants will only be present in the consent form and access to this information
will be strictly confined to the investigators. Personal details will only be used to direct
patients with poor knowledge above the disease for awareness programmes.
Collected data will be retained under strict security for a period of 3 years and burnt
thereafter. Electronic information will be permanently erased following the completion of the
research project.
Each step of the research will be reviewed by the supervisors and the Community Medicine
Department of the Faculty of Medicine, University of Colombo and necessary amendments
will be made accordingly.
Data acquired using the data collection instruments will be analysed descriptively and
analytically by the SPSS statistical software version 27.
Descriptive statistics for continuous variables, including mean, mode and median, range and
standard deviation will be used to describe the central tendency and dispersion of the socio-
demographic factors, knowledge and clinical presentation
of leprosy patients. The study variables for each factor are mentioned above in 3.7.1 section.
In the analytical component, the association between the delay in presentation to an allopathic
medical institute with certain socio-demographic parameters, knowledge on the disease and
the clinical presentation will be assessed using Chi-square test.Further the association
28
between the delay in diagnosis of leprosy after the initial presentation to a medical physician
and the clinical presentation will be assessed in a similar manner.
Socio-demographic factors namely age, sex, educational level, monthly household income,
occupation will be analysed.
A score for the knowledge on leprosy will be calculated and the patients will be categorised
according to their score.
Good- Greater than or equal to 50
Poor- Less than 50
The clinical presentation will be analysed considering the initial symptom of the patient and
the feeling of the initial symptom.
29
3.11 Gantt chart.
Activity Time
Research topics
Research objectives
Study methods
Research presentations
Introduction
Literature review
Research proposal
Awaiting ERC
approval
Data collection
Data analysis
Result presentation
Result discussion
30
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Annexure 1
Questionnaire
Title: Health seeking behaviour and associated factors among leprosy patients in
Colombo district.
Clinic:
Age: ......................
Sex:
Male ☐
Female ☐
Ethnicity:
Sinhala ☐
Tamil ☐
Muslim ☐
Burgher ☐
Other ☐
36
Marital status:
Married ☐
Unmarried ☐
Other ☐
Occupation:
Employed ☐
Unemployed ☐
If employed, Occupation:……………………………
No schooling ☐
O/L completed ☐
A/L completed ☐
37
Rs.60 000 to Rs.79 999 ☐
Home remedies ☐
Other: ................................................
Did you consult any traditional healers before seeking western medical care?
Yes☐ No☐
Self-referral. ☐
A leprosy patient. ☐
Other. ☐
38
Yes☐ No☐
If not, how many physicians did you meet before the diagnosis of leprosy?………
A physician. ☐
Self-referral. ☐
A leprosy patient. ☐
Other. ☐
Have you heard about leprosy before you got the disease?
Yes ☐ No ☐
39
What is the mode of transmission of leprosy?
40
Deformities in hands and feet Yes ☐ No ☐ Don’t know ☐
Did you know that leprosy is fully curable with medication at the time of the appearance of
symptoms?
Yes☐ No☐
Did you know that delay in treatment for leprosy can cause complications such as
disfigurement, muscle weakness, blindness, shortening of toes and fingers, etc?
Yes☐ No☐
Did you know where to seek treatment at the time of appearance of symptoms
Yes☐ No☐
41
What was the first symptom you had?
Skin nodules ☐
Enlargement of nerve ☐
Ulceration ☐
Painful ☐
Itchy ☐
Without sensation ☐
Burning pain ☐
Other ☐
What was the symptom you had when you sought medical advice?
42
Skin nodules ☐
Enlargement of nerve ☐
Ulceration ☐
Bleeding. ☐
Upper limb ☐
Lower limb ☐
Face ☐
Trunk ☐
Other ☐
<5 ☐
>5 ☐
43
ප්රශ්නාවලිය
මාතෘකාව: කකාළඹ දිස්්්රික්කකේ ලාදුරු කරෝගීන් අතර කස්ෞඛ්ය ප්රතිකාර වලට කයාමු වීම ස්හ ඒ ආශ්රිත
ස්ාධක.
වයස්: ......................
ජාතිය:
සාහල ☐
කදමළ ☐
මුස්්ලිම්ම ☐
බසරර ☐
කවන් ☐
රැකියාව:
රැකියාවක නිරත කේ ☐
රැකියා විරහිත ☐
රැකියාවක් කරන්කන් නම්ම, රැකියාව:………………………………
44
රු.19 999 ට අඩු ☐
රු.20 000 සට රු.39 999 ☐
රු.40 000 සට රු.59 999 ☐
රු.60 000 සට රු.79 999 ☐
රු. 80 000 සට රු.100 000 දක්වා ☐
රු.100 000 ට ව ඩි ☐
බටහිර වවේය ආයතනයකට යාමට කපර කරෝස ලක්ෂණ තිබූ කාලසීමාව: මාස්........
ස් පළමු පිළියම:
අ් කබකහ් ☐
කේශීය කවදකම (ආයුකවර්දය, යුනානි, සාහල) ☐
බටහිර වවදය විදයාව (වවදයවරයා, රජකේ කරෝහල) ☐
කවන්: ................................................
බටහිර වවේය ප්රතිකාර ලබා ස නීමට කපර ඔබ පාරම්මපරික වවේයවරුන්කසන් ප්රතිකාර ලබා ස්ක්ද?
ඔේ☐ නෑ☐
බටහිර වවේය ප්රතිකාරවලට කයාමු වීම ස්හ ලාදුරු කරෝසය නිණරය කිරීම අතර කාලසීමාව මාස්........
ප්රථමිම වරට වවේයවරයකු හමු වූ අවස්්ථමිාකේදී ඔහු ලාදුරු කරෝසය කලස් හඳුනා ස්ක් ද?
ඔේ☐ නෑ☐
එකස්් කනාකේ නම්ම, ලාදුරු කරෝස නිණරය කිරීමට කපර ඔබ වවේයවරුන් කී කදකනක් හමු වූවාද?..............
45
ඔේ ☐ නෑ ☐
පහත ස්ඳහන් ඒවා අතුරින් ලාදුරු කරෝසය ස්ඳහා කහ්තු වන්කන් කමානවාද?:
ලාදුරු යුම පේ නිස්ා කහෝ කමරය නිස්ා ල කබන දඬුවමකි ඔේ ☐ නෑ ☐ කනාදනී ☐
පුේසලික අයිතම (තුවාය, ද් බුරුසු ආදිය) ලාදුරු කරෝගිකයකු ස්මඟ කබදා ස නීම
ඔේ ☐ නෑ ☐ කනාදනී ☐
46
ඔේ☐ නෑ☐
ලාදුරු කරෝසයට ප්රතිකාර කිරීම ප්රමාද වීකමන් විරූපණය, මාාශ කප්ශි දුවරල වීම, අන්ධභාවය, පා ඇඟිලි ස්හ
ඇඟිලි කකටි වීම ව නි ස්ාකූලතා ඇති විය හ කි බව ඔබ දන්නවාද?
ඔේ☐ නෑ☐
47
ස්කම්ම දුඹුරු ප හ ලප ☐
ස්්නායු විශාල වීම ☐
ඝන කහෝ වියළි ස්ම ☐
වණ ☐
කච ස ලීම. ☐
48
கேள்வித்தாள்
சிேிச்லசயேம்:
வயது: ......................
பாலினம்:
ஆண் ☐ கபண் ☐
இனம்:
சிங்ேளம் ☐
தமிழ் ☐
முஸ்லிம் ☐
பர்ேர் ☐
49
மற்றலவ ☐
திருமண ிலை:
திருமணமானவர் ☐
திருமணமாோதவர் ☐
மற்றலவ ☐
கதாழில்:
கவலை ☐
கவலையில்ைாதவர் ☐
ேல்விதலேலம :
பள்ளிப்படிப்பு இல்லை ☐
ஆ ம்பப் பள்ளி (த ம் 5 வல ) ☐
O/L முடித்துள்ளார் ☐
A/L முடித்துள்ளார் ☐
உயர்ேல்வி ☐
50
ரூ.40 000 முதல் ரூ.59 999 ☐
வீட்டு லவத்தியம் ☐
மற்றலவ: ................................................
ஆம் ☐ இல்லை ☐
சுய பாிந்துல ☐
கதாழுக ாயாளி ☐
51
மருத்துவ அறிவு உள்ளவர் ☐
மற்றலவ ☐
ஆம் ☐ இல்லை ☐
ஒரு மருத்துவர்
☐
சுய பாிந்துல
☐
கதாழுக ாயாளி
☐
மற்றலவ
☐
52
பிாிவு 03: அறிகுறிேள் கதான்றும் க த்தில் கதாழுக ாய் பற்றிய அறிவு
ஆம் ☐ இல்லை ☐
ஏக ாசல்/இன்கேகைஷன் மூைம்
53
கதாழுக ாயாளியுடன் ீடித்த கதால் கதாடர்பு
லேேலள ேழுவாததால்
அழுக்கு ீல க் குடிப்பதால்
அசுத்தமான மண்
கபான்றலவ)
அாிப்பு
54
ஆம் ☐ இல்லை ☐ கதாியாது ☐
முடிச்சு புண்ேள்
உணர்வின்லம
ம்பு தடித்தல்
ஆம் ☐ இல்லை ☐
ஆம் ☐ இல்லை ☐
55
கதாழுக ாய் உடலின் எந்த பாேத்லத பாதிக்ேைாம்?
ஆம் ☐ இல்லை ☐
56
கதால் முடிச்சுேள் ☐
ம்பு விாிவாக்ேம் ☐
அல்சக ஷன் ☐
வலி ☐
அாிப்பு ☐
உணர்வு இல்ைாமல் ☐
எாியும் வலி ☐
சிக்ேல்ேள் உருவாகும்கபாது ☐
மற்றலவ ☐
57
மருத்துவ ஆகைாசலனலய ாடியகபாது உங்ேளுக்கு என்ன அறிகுறி இருந்தது?
கதால் முடிச்சுேள் ☐
ம்பு விாிவலடதல் ☐
அல்சக ஷன் ☐
இ த்தப்கபாக்கு. ☐
கமல் மூட்டு ☐
ேீழ் மூட்டு ☐
முேம் ☐
தண்டு ☐
மற்றலவ ☐
<5 ☐ >5 ☐
58
Annexure 2
2010 2011 2012 2013 2014 2015 2016 2017 2018 2019
Total Cases 2091 2229 2211 2131 2281 2098 1973 1993 1825 1749
New Cases 2091 2229 2229 1990 2157 1977 1832 1877 1703 1660
NCDR 9.5 10.6 10.6 9.6 10.4 9.43 8.6 8.68 7.86 7.61
Child Cases 202 238 163 182 213 223 158 195 174 181
% of Child 9.7 10.72 7.64 9.17 9.87 11.28 8.6 10.39 10.22 10.9
Cases
Child Rate/- 9.77 11.4 7.98 8.84 10.25 10.6 7.45 9.09 8.02 8.36
Million
population
Child Rate/- 38.49 45.16 31.73 35.29 41.12 42.93 30.30 37.25 33.17 34.64
Million
Children
Deformity 147 147 148 133 147 198 138 137 110 93
Cases
Deformity % 7.09 6.66 7.37 6.73 7.1 10.01 7.5 7.3 6.46 5.6
Deformity 7.11 7.04 7.24 6.46 7.07 9.44 6.5 6.38 5.07 4.29
Rate/- Million
population
MB Cases 967 1069 1089 947 1014 1064 980 1085 1030 961
MB % 46.19 48.18 49.34 48.82 47.01 53.81 53.5 57.81 60.48 57.89
Late 55% 55% 55% 46% 55% 45% 55% 30% 28% 27%
presentation (
>6 m )
59
Annexure 3
High Priority Districts
1 Colombo 224 26 14
2 Kalutara 213 36 12
3 Gampaha 136 8 7
4 Batticaloa 126 19 4
5 Kurunegala 105 14 7
6 Rathnapura 106 6 8
60
Annexure 4
Consent Form
Title:Health seeking behaviour and associated factors among leprosy patients in
Colombo district.
02. Have you had the opportunity to discuss this study and ask any question.
Yes/No
03. Have you had satisfactory answers to all your questions. Yes/No
04. Have you received enough information about the study. Yes/No
05. Do you understand that your participation in entirely voluntary and free to withdraw from
the study at any point of time, without having to give a reason and without affecting your
future medical care. Yes/No
06. Information held by the investigators relating to your participation in this study may be
examined by the other research assistants. All personal details will be treated STRICTLY
CONFIDENTIAL.
Do you give permission for these individuals to have access to your record. Yes/No
07. Are you aware that findings will be shared and used only for educational Purpose and for
the benefit of the profession. Yes/No
08. Do you know that you will not receive any financial or material compensation for
participation. Yes/No
09. Have you had sufficient time to come to your decision. Yes/No
61
Part B- To be completed by the investigator
I have explained the study to the above participant and he/she has indicated his/her
Willingness to take part in the study.
62
ක ම ්ත ලබාස නීම ස්ඳහාවන කපෝරමය
ශීෂරය:-කකාළඹ දිස්්්රික්කකේ ලාදුරු කරෝගීන් අතර කස්ෞඛ්ය ප්රතිකාර වලට කයාමු වීම ස්හ ඒ ආශ්රිත
ස්ාධක
02. කමම අධ්යයනය ස න ස්ාකච්ඡා කිරීමට ස්හ කිසයම්ම ප්රශ්නයක් ඇසීමට ඔබට අවස්්ථමිාව ල බී
තිකේද? ඔේ/නෑ
03. ඔබකේ සයලු ප්රශ්න වලට ස්තුටුදායක ස්ාථමිරක පිළිතුරු ල බී තිකේද? ඔේ/නෑ
05. කහ්තුවක් ද ක්වීමකින් කතාරව , ඔකේ වවේය ප්රතිකාරවලට බලපෑම්ම සදුවන ඕනෑම අවස්්ථමිාවක
අධ්යයනකයන් ඉව් වීමට ඔබට නිදහස් ඇති බව ඔබට ව ටකහනවාද?
06. කමම අධ්යයනයට ඔබකේ ස්හභාගී්වය ස්ම්මබන්ධකයන් විමශරකයින් (අප) ස්තු කතාරතුරු
කවන් පකයර්ෂණයට ස්ම්මබන්ධ නිලධාරීන් විසන් පරීක්ෂා කළ හ ක. ඔබකේ සයලුම පුේසලික
කතාරතුරු ද ඩි කලස් රහසසත කලස් ස්ලකුම ල කේ.
කමම පුේසලයින්ට ඔකේ වාතරා කියවීමට ඔබකේ අවස්රය ලබා කදනවාද? ඔේ/නෑ
07.කමහි කස්ායාස නීම්ම භාවිතා කරන්කන් ස්හා කබදා හරින්කන් අධ්යාපනික අරමුණු ස්හ වෘ්තිමය
ප්රකයෝජනය ස්ඳහා පමණක් බව ඔබ දන්නවාද? ඔේ/නෑ
08.කමයට ස්හභාගී වීම ස්ඳහා ඔබට කිසදු මූචය කහෝ ේරේයමය වන්දියක් කනාල කබන බව ඔබ
දන්නවාද? ඔේ/නෑ
09. ඔකේ තීරණයට ප ක ණීමට (ස්හභාගී වනවාද න ේද යන්න) ඔබට ප්රමාණව් කාලයක් තිකේද?
ඔේ/නෑ
ස්හභාගිවන්නාකේ අ්ස්න
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02 කකාටස් - පරීක්ෂකයා විසන් ස්ම්මූණර කළ යුතුය
පරීක්ෂකකේ අ්ස්න
64
ஒப்புதல் படிவம்
02. இந்த ஆய்லவப் பற்றி விவாதிக்ே மற்றும் ஏகதனும் கேள்வி கேட்ே உங்ேளுக்கு
வாய்ப்பு ேிலடத்துள்ளதா. ஆம் /இல்லை
ஆம் /இல்லை
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இந்த பர்ேள் உங்ேள் பதிலவ அணுகுவதற்கு அனுமதி வழங்குேிறீர்ேளா?
ஆம் /இல்லை
ஆம் /இல்லை
பங்கேற்பாளாின் லேகயாப்பம்
ஆய்வாளாின் லேகயாப்பம்
கததி
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Annexure 5
Health seeking behaviour and associated factors among leprosy patients in
Colombo district.
(1.0, 15.04.2024)
Information sheet
We, De Silva P.S., Pathiranage D.T.W., De Alwis D.D.T.S., De Silva K.L.K.T. third-year
medical students from Faculty of Medicine, University of Colombo, would like to invite you
to take part in the research study on Health seeking behaviour and associated factors among
leprosy patients in Colombo district at Central Leprosy clinic, Dermatology clinic of National
Hospital of Sri Lanka(NHSL), Colombo and Dermatology clinic of Colombo South Teaching
Hospital(CSTH),Kalubowila under the supervision of Dr.Nilanthi Senanayake,Consultant
Microbiologist.
The purpose of this research is to describe the health-seeking behaviour and its association
with socio-demographic factors, knowledge on leprosy and clinical characteristics among
leprosy patients attending clinics in Colombo district.
2. Voluntary participation
Your participation in this study is voluntary. You are free to not participate at all or to
withdraw from the study at any time despite consenting to take part earlier. If you decide not
to participate or withdraw from the study you may do so at any time.
This study will be conducted from April 2024 to November 2024 and data collection will be
carried out during August 2024. If you choose to volunteer for this study, you will be
requested to respond to questions presented by our interviewers and your responses will be
noted. This procedure will approximately take about 15 minutes.
4. Potential benefits
A copy of the research report will be submitted to the Anti-Leprosy Campaign, Sri Lanka and
recommendations will be made to improve health seeking behaviour in both patients with
Leprosy and the general public in high disease prevalent areas, by addressing the modifiable
factors identified during the data analysis. Knowledge gaps that are identified by the study
will be helpful to conduct awareness campaigns for both patients and the general public.The
study will indirectly improve the physicians and general practitioners role on diagnostics and
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will improve the quality of care given by health care facilities. Also understanding barriers to
accessing healthcare services helps in devising strategies to improve access for leprosy
patients, ensuring they receive necessary care without delay.
Completing this questionnaire will require a few moments of your valuable time. We have
made efforts to minimize the amount of time needed to fill this out as much as possible.
6. Reimbursements
You will not be paid any sum of money for participating in this study.
7. Confidentiality
Confidentiality of all records is guaranteed and no information by which reveal your identity
will be released or published. These data will never be used in such a way that you could be
identified in any way in any public presentation or publication without your express
permission.
You may stop participating in this study at any time (with no penalty or loss of benefits).
Please notify the investigator as soon as you decide to withdraw your consent.
9. Clarifications
If you have questions about any of the procedures or information please feel free to ask any
of the persons listed below.
● Prashan De Silva - 077 9612915
● Dulanga Pathiranage - 076 6701178
● Tharuka De Alwis - 075 5960165
● Thushara De Silva - 077 6163739
This project has been approved by the Ethics Review Committee, Faculty of Medicine,
University of Colombo. You may contact the committee if you wish to seek
clarifications, record any concerns or make complaints about the study by calling
0112695300 extension 240 (between 9am and 4pm) or by sending an email to
[email protected]
කකාළඹ දිස්්්රික්කකේ ලාදුරු කරෝගීන් අතර කස්ෞඛ්ය ප්රතිකාරවලට කයාමු වීම ස්හ ඒ
ආශ්රිත ස්ාධක.
(1.0, 15.04.2024)
කතාරතුරු ප්රිකාව
කකාළඹ විශ්වවිේයාලකේ වවේය පීඨකේ තුන්වන වස්කර වවේය ශිෂ්යකයක් වන ද සචවා පී.එස්්.,
පතිරණකේ ඩී.ී.ඩේලිේ., ද අචවිස්් ඩී.ඩී.ී.එස්්., ද සචවා කක්.එච.කක්.ී. වන අප විසන් පව්වුම
ලබන කකාළඹ දිස්්්රික්කකේ ලාදුරු කරෝගීන්කේ කස්ෞඛ්ය ප්රතිකාරවලට කයාමුවීම ස්හ ඒ ආශ්රිත
ස්ාධක පිළිබඳ මධ්යම ලාදුරු ස්ායනය, කකාළඹ ශ්රී ලාකා ජාතික කරෝහකච (NHSL) ්මර කරෝස
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ස්ායනය ස්හ කළුකබෝවිල දකුණු කකාළඹ ශික්ෂණ කරෝහකච (CSTH) ්මර කරෝස ස්ායනකේ
පව්වුම ලබන පකයර්ෂණ අධ්යයනයට ස්හභාගී වන කලස් ඔබට ඇරයුම්ම කරමු.
1. අධ්යනකේ අරමුණ
2. ස්්කේච්ඡා ස්හභාගී්වය
කමම අධ්යයනයට ඔකේ ස්හභාගී්වය ස්්කේච්ඡාකවන් සදු කේ. කපර ස්හභාගි වීමට ක ම ්ත පළ කර
තිබියදී්, කිසකස්්්ම ස්හභාගි කනාවීමට කහෝ ඕනෑම අවස්්ථමිාවක අධ්යයනකයන් ඉව් වීමට ඔබට
නිදහස් ඇත. ඔබ අධ්යයනයට ස්හභාගී කනාවීමට කහෝ ඉව් වීමට තීරණය කරන්කන් නම්ම, ඔබට
ඕනෑම අවස්්ථමිාවක එය කළ හ ක.
කමම අධ්යයනය අප්කරච 2024 සට කනාව ම්මබර 2024 දක්වා පව්වුම ලබන අතර 2024 අකසෝස්්තු
මාස්කේදී ද්ත රැස්්කිරීම සදු කකකර. ඔබ කමම අධ්යයනය ස්ඳහා ස්්කේච්ඡාකවන් ඉදිරිප් වීමට
කතෝරා සන්කන් නම්ම, අපකේ ස්ම්මමුඛ පරීක්ෂකයින් විසන් ඉදිරිප් කරන ප්රශ්නවලට පිළිතුරු දීමට
ඔකබන් ඉචලා සටින අතර ඔකේ ප්රති්ාර ස්ටහන් කරුම ල කේ. ඒ ස්ඳහා දළ වශකයන් විනාඩි
පහකළාවක් පමණ ව ය කේ.
4.ප්රතිලාභ
කමම ප්රශ්නාවලිය ස්ම්මූණර කිරීම ස්ඳහා ඔකේ වටිනා කාලකයන් සුළු කමාකහාතක් අවශ්ය කේ. කමය
පිරවීමට සතවන කාලය හ කිතාක් අවම කිරීමට අප උ්ස්ාහ දරා ඇත.
6. ප්රතිූරණය
කමම අධ්යයනයට ස්හභාගී වීම කවුමකමන් ඔබට කිසදු මුදලක් කසවුම කනාල කේ.
7. රහස්්යභාවය
සයලුම වාතරා වල රහස්්යභාවය ස්හතික කර ඇති අතර ඔබකේ අනන්යතාවය කහළි කරන කිසදු
කතාරතුරක් මුදා හ රීම කහෝ ප්රකාශයට ප් කිරීම සදු කනාකේ. ඔකේ ප්රකාශිත අවස්රයකින් කතාරව
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ඕනෑම කපාදු ඉදිරිප් කිරීමක කහෝ ප්රකාශනයකදී ඔබව කිසඳු ආකාරයකින් හඳුනා සත හ කි
ආකාරකයන් කමම ද්ත කිසවිකටක භාවිතා කනාකකකර.
ඔබට ඕනෑම කේලාවක කමම අධ්යයනයට ස්හභාගී වීම න ව ්විය හ කිය (දඬුවමක් කහෝ ප්රතිලාභ
අහික වීමකින් කතාරව). ඔබ ඔකේ ක ම ්ත ඉචලා අස්්කර ස නීමට තීරණය කළ වහාම විමශරකයාට
දන්වන්න.
9. ප හ දිලි කිරීම්ම
ඔබට කිසයම්ම ක්රියා පටිපාටි කහෝ කතාරතුරු පිළිබඳ ප්රශ්න ඇ්නම්ම කරුණාකර පහත ල යිස්්තුසත
කර ඇති ඕනෑම අකයකුකසන් විමසීමට කාරුණිය ක වන්න.
ප්රශාන් ද සචවා - 077 9612915
දුලාසා පතිරණකේ - 076 6701178
තාරුකා ද අචවිස්් - 075 5960165
තුෂාර ද සචවා - 077 6163739
කමම ේයාපෘතිය කකාළඹ විශ්වවිේයාලකේ වවේය පීඨකේ ආ්ාර ධමර ස්මාකලෝ්න කක ටුව විසන් අුමමත
කර ඇත. ඔබට 0112695300 දිගුව 240 (කප.ව. 9් ප.ව. 4් අතර) ඇමතීකමන් කහෝ
[email protected] කවත විේයු් ත පෑලක් ය වීකමන් ස ටලුවක් වාතරා කිරීමට,ප හ දිලි කිරීම්ම ලබා
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தேவல் உள்ளடக்ேம்
கோழும்பு பல்ேலைக்ேழேத்தின் மருத்துவ பீடத்தின் மூன்றாம் வருட மருத்துவ
மாணவர்ேளாேிய டி சில்வா பி.எஸ்., பத்தி னகே டி.டி.டபிள்யூ., டி அல்விஸ்
டி.டி.டி.எஸ்., டி சில்வா கே.எல்.கே.டி. ஆேிகயா ான ாங்ேள் டாக்டர். ிைாந்தி
கசனா ாயக்ே, நுண்ணுயிாியல் ஆகைாசோின் கமற்பார்லவயின் ேீழ் கதால்
71
க ாயாளிேளின் மருத்துவ சிேிச்லசலய கபறல் மற்றும் அது கதாடர்பான ோ ணிேள்
பற்றி கோழும்பு கதசிய லவத்தியசாலையின் கதால் க ாயாளிேள் ேிளினிக்,கோழும்பு
கதற்கு கபாதனா லவத்தியசாலையின் (ேளுகபாவிை)கதால் ேிளினிக்ேில்
டாத்தப்படும் ஆய்விற்கு உங்ேலள அலழக்ே விரும்புேிகறாம்.
1. ேற்லேயின் க ாக்ேம்
2. தன்னார்வு பங்கேற்பு
இந்த ஆய்வு ஏப் ல் 2024 முதல் வம்பர் 2024 வல டத்தப்படும் மற்றும் ஆேஸ்ட்
2024 இல் த வு கசோிப்பு கமற்கோள்ளப்படும். இந்த ஆய்வுக்குத் தன்னார்வை ாே
ீங்ேள் விரும்பினால் , எங்ேள் க ர்ோணல் கசய்பவர்ேள் கேட்கும் கேள்விேளுக்குப்
பதிைளிக்குமாறு கேட்டுக் கோள்ளப்படுவீர்ேள், கமலும் உங்ேள் பதில்ேள்
கசோிக்ேப்படும். இந்த கசயல்முலற சுமார் 15 ிமிடங்ேள் எடுக்கும்.
4. சாத்தியமான முடிவுேள்
ஆய்வு அறிக்லேயின் ேல் இைங்லேயில் உள்ள கதாழுக ாய் எதிர்ப்பு பி ச்சா த்திற்கு
சமர்ப்பிக்ேப்பட்டு, கதாழுக ாயால் பாதிக்ேப்பட்ட க ாயாளிேள் மற்றும் அதிே க ாய்
ப வும் பகுதிேளில் உள்ள கபாது மக்ேளிலடகய ஆக ாக்ேியம் கதாடர்பான
டத்லதலய கமம்படுத்துவதற்ோன பாிந்துல ேள் வழங்ேப்படும். ஆய்வின் மூைம்
72
ேண்டறியப்படும் அறிவு இலடகவளிேள், க ாயாளிேள் மற்றும் கபாதுமக்ேள்
இருவருக்கும் விழிப்புணர்வு பி ச்சா ங்ேலள டத்த உதவியாே இருக்கும். இந்த ஆய்வு
மலறமுேமாே மருத்துவர்ேள் மற்றும் கபாது பயிற்சியாளர்ேளின் க ாயறிதலில் பங்லே
கமம்படுத்தும் மற்றும் சுோதா வசதிேள் வழங்கும் ப ாமாிப்பின் த த்லத
கமம்படுத்தும். கமலும் சுோதா கசலவேலள அணுகுவதற்ோன தலடேலளப்
புாிந்துகோள்வது, கதாழுக ாயாளிேளுக்ோன அணுேலை கமம்படுத்துவதற்ோன
உத்திேலள வகுப்பதில் உதவுேிறது, கமலும் அவர்ேள் தாமதமின்றி கதலவயான
ேவனிப்லபப் கபறுவலத உறுதிகசய்ேிறது.
6.மீள் கசலுத்துதல்
ீங்ேள் எந்த க த்திலும் இந்த ஆய்வில் பங்கேற்பலத ிறுத்தைாம் (அப ாதம் அல்ைது
பைன்ேள் இழப்பு இல்ைாமல்). உங்ேள் ஒப்புதலை திரும்பப் கபற முடிவு கசய்தவுடன்,
விசா லணயாளாிடம் கதாிவிக்ேவும்.
9. விளக்ேங்ேள்
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