http://www.ijl.org.in

Original Article

Received : 30.03.2016 Accepted : 16.08.2016

Indian J Lepr 2016, 88 : 227-236© Hind Kusht Nivaran Sangh, New Delhi

Health Seeking Behavior of Leprosy Patients:A Hospital Based Study

1 2 3 4 5S Balegar , DK Mishra , D Doshi , SB Singh , AK Singh

Health-seeking habits play a critical role in early diagnosis and effective treatment for leprosy. The utilization

of a health care system depends on socio-demographic factors, social structures, level of education, cultural

beliefs and practices, gender discrimination, status of women, economic and political systems, environmental

conditions, disease pattern and health care system itself. A cross sectional study was conducted to assess the

health-seeking behavior of the patients with leprosy. A total of 46 patients with leprosy attending

Dermatology OPD, RIMS, Ranchi were interviewed through semi-structured questionnaire during the period

between June 2015 to November 2015. It was observed that out of 46 leprosy patients, 31(67.4%) were males

and 15(32.6%) females. Mean and standard deviation of age of patients was 38 years and 14.5 years

respectively. Majority [35(76%)] of the patients belong to lower class according to updated Kuppuswamy's

scale. It was observed that 19(41.3%) patients did not have any knowledge about the disease. 5(10.86%) knew

only the name of the disease and the remaining 21(45.65%) had other views about the disease like curse,

myth, allergy, trauma etc. Only 1(2.17%) patient who was well educated and belonging to upper middle class

knew about the exact cause of the disease and its complications. 20 patient diagnosed in first visits of which

6 went to Tertiary Health Centre, remaining 14 went to either General Practitioner or PHC/CHC. 26 patient nd rddiagnosed in 2 or 3 visit of which 7 went to Quacks, 1 went to Faith healer, 6 went to Homeopathic/

Ayurvedic clinic in their first visit and remaining 12 could not be diagnosed by General Practitioner or PHC

Doctors in their first visit. While there is need to expand this study to a larger number of patients in different

settings, this preliminary data indicates major problem in health seeking behaviour of leprosy patients and

also quality of care in this region. Sensitization of health care providers (qualified as well as not qualified),

enlisting their support and awareness campaigns in public will have to be considered and tried for developing

an evidence based strategy for this area.

Key words : Health seeking behavior, leprosy, alternative medicine, Jharkhand

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Correspondence author: Dr Shrenik Balegar e-mail: shrenikdoc@gmail.com

Shrenik Balegar, MD, Junior Resident, Department of Dermatology, Venereology & LeprosyDharmendra Kumar Mishra, MD, PhD, Associate Professor, Department Dermatology, Venereology & LeprosyDarshit Doshi, Diploma in Tropical Medicine, Junior Resident, Department of Tropical MedicineShashi Bhushan Singh, Assistant Professor cum Statistician, Department of Preventive & Social Medicine.Amit Kumar Singh, Diploma in Tropical Medicine, Junior Resident, Department of Tropical Medicine

Departments of Dermatology, Venerology and Leprosy; Tropical Medicine and Preventive and Social Medicine, Rajendra Institute of Medical Sciences, Ranchi 834009, Jharkhand, India

Introduction

Leprosy has been around since ancient times,

often surrounded by terrifying, negative stigmas

and tales of leprosy patients being shunned as

outcasts. Social stigma is associated mainly due to

prevalent myths like its hereditary and contagious

nature, divine curse along with the physical

deformities caused. The affected people not

only face physical impairments but also suffer

psychosocial repercussion due to community's

attitude.

During 2001, prevalence rate in Bihar-Jharkhand

was >10/10000 against whole country's pre-

valence of 3.74/10000. It declined to 0.65/10000

in 2011 in India (NLEP 2011). Similar trends were

observed elsewhere (WHO 1998, WHO 2010). As

per NLEP progress report 2014-15, Jharkhand had

prevalence rate of 0.96/10,000 population (NLEP

2015) indicating static situation.

Factors such as cultural values and gender roles

are significant in influencing the decision making

process associated with health-seeking behavior

(Tung 2010). Seeking help from health care

professionals or seeking financial aid from the

government to pursue treatment would be

exposing the problem beyond their family

network, which is considered shameful and could

pose a threat to the status or reputation of the

family. Early diagnosis of leprosy and adequate

therapeutic coverage reaching all individuals

diagnosed are priorities in leprosy control

program which is important for the interruption

of transmission and the reduction of physical and

social consequences of the disease (WHO 1988).

This study focuses on the health seeking behavior

of leprosy patients attending Dermatology OPD in

Rajendra Institute of Medical Sciences, Ranchi,

Jharkhand. Information will be relevant for

carrying out studies to further strengthen the

implementation strategy of NLEP in this region.

Patients and Methods

A cross-sectional study was conducted on leprosy

patients during a period between June 2015

to November 2015 attending the outpatient

department of Dermatology, Venereology &

Leprosy of RIMS, Ranchi which is a tertiary care

centre in the region. Informed consent was taken

from patient or patient's relative in case of

minors. Ethical clearance was obtained from the

Institutional Ethics Committee. A total 46 subjects

who were clinically diagnosed and had more than

one cardinal features of leprosy (viz. hypo/

anaesthetic patches, nerve thickening, Positive

AFB on ZN staining) and met the inclusion criteria

of the study during our data collection period

were recruited for this study.

Study Subjects were interviewed through semi

structured questionnaire to assess the socio-

economic status according to updated Kuppu-

swamy's scale (Bairwa et al 2013), their first place

of visit, reasons for preference, compliance of the

patients to MDT, complications of leprosy and its

consequences on patient's family and reasons for

delay in diagnosis of leprosy.

Inclusion criteria was (i) A newly diagnosed

leprosy patient presenting with more than one

cardinal features of leprosy. (ii) Patients who

were previously diagnosed as leprosy coming

for follow up and taking anti-leprotic drugs/MDT,

(iii) Patients with severe deformity due to leprosy

and (iv) Patients who came after default treat-

ment. Patients presenting with similar symptoms

secondary to other cause like diabetic neuro-

pathies, traumatic neuropathies, etc. were

excluded.

Results

Of the total 46 patients were assessed of which

31(67.4%) were male and 15(32.6%) female.

Mean age of male was 39 years and of female

was 36 years. Socioeconomic status according to

228 Balegar et al

modified Kuppuswamy's index was as follows:-

Lower class (LC):- 13(28%), upper lower class

(ULC):- 22(47.8%), Lower middle class (LMC):-

6(13%), upper middle class (UMC) :- 5(10.9%).

There were no patients from upper class (UC).

Out of these patients, 37 (80.4%) were old cases

on follow up and 9(19.6%) were newly diagnosed

cases (Table 1).

Table 2 shows that majority (80% of 46) of the

patients were suffering from leprosy for more

than one year. Fig 1 shows that majority of the

patients had skin lesion with hypo/anesthesia

followed by nerve thickening, signs of reaction,

deformity, trophic ulcer and anesthesia without

skin lesion. Most of the patients visited General

Practitioner first, followed by Govt. hospital and

229Health Seeking Behavior of Leprosy Patients: A Hospital Based Study

Table 1 : Socio-demographic profile of the patients (n=46)

Variables Category Numbers (%)

Sex Male 31(67.4%)

Female 15(32.6%)

Socio Economic Status (SES)

As modified Kuppuswamy's scale LC 13(28%)

ULC 22(47.8%)

LMC 6(13%)

UMC 5(10.9%)

UC 0(0%)

Education Status Illiterate 20(43.47%)

Literate 16(34.78%)

Sex Mean Standard Deviation

Age (yrs.) Age (yrs.)

Male 38 15

Female 36 14

Total 38 14.5

Table 2 : Duration of disease

Duration of disease No. of patients(n=46) Percentage

<1 month 2 2.17%

1-6 months 2 2.17%

6m-1 year 5 10.86%

1-5 years 27 58.7%

>5 years 10 37%

Above table 2 shows that majority (80% of 46) of the patients were suffering from leprosy more than one year.

230 Balegar et al

38(82.6%)

4(8.7%)

19(41.3%)

14(30.43%)

18(39.13%)

5(10.86%)

0 5 10 15 20 25 30 35 40

skin lesion with hypo/anaesthesia

anaesthesia without skin lesion

nerve thickening

deformity

signs of reactions

trophic ulcer

Fig 1 : presentations

Above figure 1 shows majority of the patients had skin lesion with hypo/anesthesia followed by nerve thickening, signs of reaction, deformity, trophic ulcer and anesthesia without skin lesion.

Clinical Presentation [multiple response ] (n=46).

Fig 2 : First place of visit (n=46)

Above figure 2 shows that most of the patients visited first time to General Practitioner followed by govt.

hospital, Quack. One patient visited faith healer at first time.

Health Seeking Behavior of Leprosy Patients: A Hospital Based Study 231

Quack. One patient first went to a faith healer

(Fig 2). Majority (74%) of the patients took mainly

allopathic medicine. Few patients took homeo-

pathic and ayurvedic medicine along with

allopathic treatment (Fig 3). 20(43.7%) patients

had diagnosed during the first visit. 26(56.5%)

patients had diagnosed in second visit and third

visit (Fig 4). Out of 46 patients, 26 (59%) patients

took MDT regularly, 11 were irregular in their

treatment and 9 patients were newly started on

MDT (Table 3). 24% patients did not improve due

to irregularity in treatment (Fig 5). Main factors

affecting the health seeking behavior i.e., low

socio-economic status, myth & misconception,

illiteracy and unawareness, faith in alternative

medicine (Table 4). Six (13.04%) patients had

family history of leprosy.

Knowledge of leprosy

19(41.3%) patients did not have any knowledge

about the disease. 5(10.86%) knew only the name

of the disease and the remaining 21(45.65%) had

other views about the disease like curse, myth,

allergy, trauma etc. Only 1(2.17%) patient who

was well educated and belonging to upper middle

class knew about the exact cause of the disease

and its complications.

Pathway followed by patients is shown in Fig 6.

20 patient diagnosed in first visits of which 6 went

to Tertiary Health Centre, remaining 14 went

to either General Practitioner or PHC/CHC. 26 nd rdpatient diagnosed in 2 or 3 visit of which 7 went

to Quacks, 1 went to Faith healer, 6 went to

Homeopathic/Ayurvedic clinic in their first visit

and remaining 12 were not diagnosed by General

Practitioner or PHC Doctors in their first visit.

Most of the patients suffering from leprosy for

more than a year initially ignored the disease for

many months before seeking help from quacks,

faith healers, ayurvedic and homeopathic

practitioners. They were misdiagnosed and their

Fig 3 : Modality of treatment taken during the first visit (n=46).

Above figure 3 shows that majority (74% of 46) of the patients took mainly allopathic medicine. Few patients took homeopathic and ayurvedic medicine along with allopathic treatment.

Balegar et al232

Fig 4 : Patients diagnosed in different visits

Above figure shows that 20(43.7%) patients were diagnosed during the first visit. 26(56.5%) patients were diagnosed in second visit and third visit.

Fig 5 :

Above figure shows that 59% patients improved after taking MDT. Most of them took MDT regularly. 24% patients did not improve due to irregularity in treatment.

Response to therapy in patients studied

Fig 6 : Pathway followed by patients for access for their treatment

Health Seeking Behavior of Leprosy Patients: A Hospital Based Study 233

Table 3 : Total No. of patients who took Multi Drug Therapy (MDT)

MDT taken No. of patients Percentage

Regularly 26 56.52%

Irregularly 11 23.91%

Newly started 09 19.56%

Out of 46 patients, 44 were multibacillary and only 2 were paucibacillary.

Above table 3 shows that out of 46 patients, 26 patients took MDT regularly, 11 were irregular in their treatment and 9 patients were newly started on MDT.

disease never improved. After taking suggestions

from local health personnel and repeated

pressure from peers, they finally visited tertiary

care hospital where they were rightly diagnosed

and started multi drug therapy (MDT). As MDT is

highly effective the symptoms subsided within

few months which made the patients to leave

the treatment midway. Also emergence of signs

of reactions affected the compliance which led

serious complications like deformities and trophic

ulcers.

Consequences of leprosy

It was observed that 17 (37%) patients faced

social stigma. Daily activities of 36(78.26%)

patients were affected. Income of 27(58.7%)

patients got affected. Education of children was

affected in 26(56.52%) patients.

Discussion

Health-seeking behavior has been defined as a

“sequence of remedial actions that individuals

undertake to rectify perceived ill-health.” In

particular, health-seeking behavior can be

described with data collected from information

such as the time difference between the onset of

an illness and getting in contact with a healthcare

professional, type of healthcare provider patients

sought help from, how compliant patient is with

the recommended treatment, reasons for choice

Table 4 : Health seeking behaviorof Leprosy patients (N=46)

Health seeking behavior No. of response*by 46 patients Percent

Myth & misconception 21 23.86%

Not aware about any kind of treatment 6 6.81%

Belief on alternative therapy 6 6.81%

(Ayurvedic, homeopathic and Faith Healer)

Illiteracy 20 22.72%

Low socio-economic Status 35 39.77%

Total response 88 100%

*Multiple responses

Above table 4 reveals that main reason for delay in treatment was due to health seeking behavior i.e., low socio-economic status, myth & misconception, illiteracy and unawareness. Some patients had believed on alternative therapy.

Balegar et al234

of healthcare professional and reasons for not

seeking help from healthcare professionals.

Health seeking behavior plays a vital role in early

diagnosis and treatment. It includes physical,

socio-economic, cultural and political aspects

(Arnault 2009, Karasz and Dempsey 2008, Harju

et al 2006). The utilization of a health care system

depends on socio-demographic factors, social

structures, level of education, cultural beliefs

and practices, gender discrimination, status of

women, economic and political systems, environ-

mental conditions, disease pattern and health

care system itself.

Even though leprosy was eliminated as a public

health problem (<1/10,000) from India in

December 2005, it still remains endemic in

eastern India involving Bihar, Chhattisgarh, West

Bengal and Jharkhand. This study assessed the

health seeking behavior of leprosy patients

attending our hospital. In our study, we have

observed that most patients ignore early leprosy

symptoms due to their painless, quiescent nature

and seek help only with the onset of visible or

bothersome complaints. Further, 19(41.3%)

patients did not have any knowledge about the

disease. 5(10.86%) knew only the name of the

disease and the remaining 21(45.65%) had other

views about the disease like curse, myth, allergy,

trauma etc. Only 1(2.17%) patient who was well

educated and belonging to upper middle class

knew about the exact cause of the disease and

its complications. First contact with the health

service was local practitioner(45.6%), PHC/CHC

(23.9%), quacks(15.2%), faith healers(2.1%), and

only 13.04% came for tertiary care centers for

diagnosis. Also many took home remedies like

neem oil, alternative medicines like Ayurvedic

(6.5%) and Homeopathy (6.5%). 13% didn't avail

any health service earlier and came to our

institute directly. A study by Samraj et al (2012)

showed results similar to our study (Table 5).

43.47% were diagnosed in first visit, 41.30% were

diagnosed in second visit and 15.21% were

diagnosed in third visit. 26 patients i.e., 56.5 %

were misdiagnosed in their first visit. 22 patients

(47.82%) were diagnosed after 1 year of

symptoms and signs of leprosy. It clearly shows

that there was delay in diagnosing the disease.

A similar study from Brazil by da Silva Souza

and Bacha (2003) observed that 55% were

diagnosed after 1 year of signs/symptoms and

54% developed deformities. Such delays have

also been reported from China (Zhang et al 2009).

56.52% of our patients took treatment regularly

on diagnosis. 23.91% were irregular in their

treatment. Those who were regularly taking

drugs showed improvement in general condition

and skin lesions. Due to this delay and

misdiagnosis, 14(30.43%) developed deformities.

Most of the patients suffering from leprosy for

more than a year initially ignored the disease for

many months before seeking help from quacks,

faith healers, Ayurvedic and Homeopathic

practitioners. They were misdiagnosed and their

disease never improved. After taking suggestions

from local health personnel and repeated

pressure from peers, they finally visited tertiary

care hospital where they were rightly diagnosed

and started multi drug therapy (MDT). As MDT is

highly effective the symptoms subsided within

few months which made the patients to leave the

treatment midway. Also emergence of signs of

reactions affected the compliance which led

serious complications like deformities and trophic

ulcers.

While our observations are based on a limited

number of cases, these show the serious nature

of problem - lack of knowledge and disconnect

with services. There is need to investigate these

aspects on a larger number of cases in different

settings in the state. Addressing these issues is

essential for strengthening the programme. Even

Health Seeking Behavior of Leprosy Patients: A Hospital Based Study 235

though Jharkhand has achieved elimination at

level (<1/10,000) as reported (NLEP 2011, 2015),

this disconnect can lead to preventable disabi-

lities. Health seeking behavior which is affecting

the leprosy treatment must be addressed by

National leprosy Eradication Programme (NLEP).

There is a need for educational activities in the

community, primary schools and colleges. GPs,

quacks and practitioners of other systems also

must be involved in this mission. Diagnosed

patients must be properly counseled regarding

the disease, treatment and its complications to

prevent the recurrence of the disease, disabilities

and deformities of the patients.

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How to cite this article : Balegar S, Doshi D, Singh SB et al (2016). Health Seeking Behavior of Leprosy Patients: A Hospital Based Study. Indian J Lepr. 88 : 227-236.

Balegar et al236