Leprosy (Hansen's disease) is a chronic infectious disease caused by Mycobacterium leprae. It affects mainly the peripheral nerves. It also affects the skin, muscles, eyes, bones, testes and internal organs.1

Despite being eliminated, the global scenario in 2019 shows, 2,02,256 new leprosy cases, 14,893 childhood cases and 10,816 cases with Grade 2 disability (G2D) (WHO Global Leprosy Update, 2020). India constitutes 60% of the global burden and carries a current prevalence rate of 0.41, with 5.76% childhood cases and 2.41% G2D (NLEP 2021). Global 2020 leprosy data reveal a drastic fall in total registered cases (TRC) to 129152, with 37.1% reduction in new cases, 2% reduction in G2D and 0.6% reduction in childhood cases (WHO Global Leprosy Update, 2020).2

In 2023-24, the leprosy profile of Balangir district of Odisha registered 703 new cases with annual case detection rate of 38.40. Among them, 6 (0.85%) cases were having Grade-2 disability and 25 (3.55%) cases were children. The treatment completion rate is 99.40% in the Balangir district.3

National Leprosy Eradication Programme (NLEP) in India is a Centrally Sponsored Scheme under the   umbrella of National Health Mission (NHM). The primary goal of the Programme is to detect the cases of leprosy at an early stage and to provide complete treatment free of cost, to prevent the occurrence of disabilities in the persons affected and stop the transmission of disease at the community level. The programme also aims to spread awareness about the disease and reduce stigma attached with the disease.4  Even to this day, where leprosy is completely curable with MDT (Multi Drug Therapy), some parts of India uphold the belief that leprosy is a divine curse, a punishment of past sins and a result of immoral sexual behaviour. These beliefs reinforce the image of the ‘leper’ as being physically and morally unclean, to be blamed for contracting the disease and therefore to be socially ostracized. The repulsive physical image, the fear of infection and the belief in incurability are the root causes of the inhuman treatment that is often meted out to those who have leprosy (NLEP, 2013).5

Leprosy affected persons are often experiencing stigma and discrimination. This negatively impacts access to diagnosis, treatment outcomes or care, as well as affects their societal functioning. Stigma is an important cause of delayed diagnosis, facilitating transmission of the infection within families and communities.6

Health-seeking behaviour is a complicated issue, if not a complex paradigm of social, cultural, historical, and economic variables defining certain mindsets. Ignorance of general health problems; the lack of awareness of leprosy; socioeconomic limitation; availability and accessibility to health services and stigmatization in the general population may prevent people from seeking help.5 

Health service delay can also be related to low awareness and lacking skills of healthcare providers. Identifying what people with leprosy think, why and how they behave will consequently aid program managers design an appropriate community-sensitive intervention strategy and thus lend such efforts to effective policy design.7

Leprosy is as much a social problem as a medical one and stigma towards persons affected with leprosy is as old as the disease itself.8 Misdiagnosis and ineffective treatment results in more severe and disabling forms of disease. In case of leprosy, such behaviour leads to progression of the disease, irreversible disabilities and further compounds the transmission of infection in the community.9,10,11   Many personal and social factors have an impact on a patient’s decision to seek health care. A health promotion campaign on leprosy for the public aimed at encouraging people to self-report when they suspect they may have leprosy has been advocated by WHO in a low endemic situation.12

The present study tried to reveal the patterns and factors affecting the health seeking behaviour of leprosy patients. The data obtained was analysed to provide valuable suggestions to improve the health seeking behaviour in leprosy patients.

Objectives

1. To estimate the pattern of health seeking behaviour among leprosy patients.
2. To determine the factors affecting health seeking behaviour among leprosy patients.

Study Site: Leprosy clinic, Skin & VD, OPD, Department of Skin & VD, Bhima Bhoi Medical College & Hospital, Balangir

Study participants: Leprosy patients attending Dermatology OPD

Inclusion Criteria: Patients willing to participate in the study and provided their informed consent

Exclusion Criteria:

1. Patients not willing to participate in the study
2. Seriously ill patients

Type of study- Cross-sectional study

Sample size- 115 leprosy patients attending the Leprosy clinic, Skin & VD, OPD were selected as per convenience and included in the study after obtaining their informed consent. The study participants were interviewed with a pre-designed, pre-tested semi-structured schedule.

Sample size calculation: Taking prevalence of leprosy patients took initiative and sought treatment from a medical practitioner in the initial stages of disease as 6.93%^5, allowable error 5 % and non-response rate as 10% the sample size calculated was found to be 115 by using the formula: n=4PQ/L²

Where P=Prevalence, Q=1-P, L=allowable error

Sampling Method: Convenient sampling

Study period- 6 months (15^th November 2021 to 15^th May 2022)

Statistical analysis:  Descriptive statistics

Instrument required: pre-designed, pre-tested semi-structured schedule

Ethical consideration

Informed consent or assent for minors was obtained from all participants before data collection. Ethical clearance for the study was granted by the Institutional Ethical Committee of Bhima Bhoi Medical College & Hospital, Balangir (IECNo-15/21-10-2021). The autonomy and confidentiality of the study participants were maintained throughout the research and no participants were harmed during the study.

Table 1: Socio-demographic characteristics of the study participants (n=115)

Out of total 115 study participants, 34(29.6%) belongs to 31-40 yrs followed by 29 (25.2%) in the age group of 21- 30 yrs. Also, 14 (12.2%) participants were in the age group of 11-20 yrs and 12 (10.4) % were more than 60 yrs of age.  Male (68.7%) participants were more than twice than female (31.3%). Majority (98%) belonged to Hindu religion. 73.9 % were married. 34.8% were educated up to primary school, 19.1% were illiterate, 20.9% were educated up to high school and a few educated up to intermediate education (3.5%), graduate/Post graduate (6.1%) and having professional degree (3.5%). So far occupation of study participants is concerned, 35(30.4%) were unskilled workers followed by 24(20.9%) were house wife, 18(15.7%) unemployed, 14(12.2%) were studying as student and few belong to semi-skilled, skilled, and other clerical and professional and semi-professional works. 64(55.7%) belong to joint family and 51 (44.3%) were living in nuclear family.

All the study participants were living in their own/rented house along with their family members.  63(54.8%) participants were earning for themselves and have their personal income whereas 52(45.2%) were economically dependent on their family members.

Table 2: Type of Leprosy and Grade of Disability among the study participants (n=115)

Most of the participants 101 (87.8%) were being treated as Multi-Bacillary Leprosy with 9.6% were having disability due to leprosy and all the disability were of Grade-1 nature. [Table 2]

Table 3: Health Seeking behaviour of study participants (n=115)

As per National Leprosy Eradication Programme, Multi drug therapy (MDT) should be initiated as soon as leprosy is diagnosed. On interaction with the patients, it was observed that, treatment of 16(13.9%) patients was delayed by more than 1 month after diagnosis. Among them, the reasons for the delay in receiving the treatment from the Leprosy clinic of BBMCH, Balangir were; 6 (37.5%) patients had started treatment from private clinics, 6 (37.5%) patients were ignorant about the treatment of the disease, 2 (12.5%) patients were in migration for work and in 2 (12.5%) cases there was some transportation issues. Most 103(89.6%) of the participants were regularly attending the health care facility for the treatment of the disease as advised by the doctor; however, 12(10.4%) were irregular in their treatment. The regularity in seeking treatment was due to regular counselling by health care professionals {(62), 60.2%}, to get rid of social stigma {(36), 35%} and motivation for healing {(5),4.9%}.

In this study, 12(10.4%) patients had drop-out of medication for more than 1 month. However, they resumed the treatment again after encountering the health care provider. Reasons of drop out among them were, migration for work to outside 4(33.3%), improvement of symptoms during the treatment 4(33.3%), unaware of the duration of treatment 2(16.7%) and occurrence of side effects during the treatment course of leprosy in 2(16.7%) patients. [Table 3]

Table 4: Treatment history of leprosy patients (n=115)

Before seeking treatment from the Leprosy Clinic of Bhima Bhoi medical College & Hospital, Balangir, 23 (20%) participants had already started treatment outside. Among them, 11 (47.8%) were received their first treatment from qualified private practitioners; however, 6 (26.1%) were received treatment from unqualified private practitioners. Others patients, 2 (8.7%) from each had received treatment from medicine shop, homeopathic and traditional treatment. [Table 4]

In the present study,115 leprosy patients were participated. Among them, 12.2% belongs to 11-20 yrs and 10.4% were more than 60 yrs age group. Regarding education of the patients 19.1% were illiterate and 45.2% were economically dependent on their family members.

In this study, 20% of the patients sought prior treatment from qualified registered private practitioner, unqualified private practitioners, medicine shop, homeopathic treatment and traditional healers before receiving treatment from the Leprosy clinic of BBMCH, Balangir. However, a study conducted by Sachin Ramchandra Atre et al.  observed that, 59% of patients had sought help from different sources such as traditional healers, PHCs, private clinics/hospitals and clinics run by NGOs prior to the diagnosis of leprosy through the survey for reasons such as prior positive experience with the doctor, closer availability and advice by friends/relatives.13

The patients were supposed to receive immediate treatment as soon as the disease is diagnosed. But in our study, we found that, 13.9% of patients did not receive immediate treatment after diagnosis; the reasons being, 5.2% were unaware and ignorance towards treatment, 1.7% migrated for work, 1.7% had some transportation issues and 5.2% started treatment from private clinics. 

So far health seeking behaviour is concerned our study revealed that, 89.6% were regularly attending the health care facility for the treatment of the disease as advised by the doctor; however, 10.4% were irregular in their treatment. The regularity in seeking treatment was due to regular counselling by health care professionals (60.2%), to get rid of social stigma (35%) and motivation for healing among these patients (4.9%).

The medication drop-out for more than 1 month was observed in 10.4% patients, however they resumed the treatment again after encountering the health care provider.

In the present study, we also found that, 10.4% of patients received first treatment from unqualified medical practitioners, medicine shop and some form of homeopathic and traditional treatment. However, Adhikari et al. in their study conducted in Western Nepal, observed that 55.6% of participants received first treatment from non-medical providers such as witch doctors and traditional healers.14 The reasons for these differences may be due to wide socio-cultural variations in different regions, availability of health services, perception towards the disease, social stigma, public awareness regarding disease and health. Majority (96.5%) of the patients believe the disease as an ill health condition like other disease; however, 1.7% were thinking the disease as despair and 1.7% thinking the disease as a curse and result of their past sin.

This study was an attempt to estimate the pattern of health seeking behaviour among leprosy patients and to determine the factors affecting health seeking behaviour among leprosy patients so that appropriate intervention measures could be prescribed. Proper ongoing counselling to the patients is essential to reduce the medication drop-out during the MDT. For this every patient must be educated regarding the issues related to duration, adherence to therapy and side effects of drugs.  To reduce the irrational treatment from unqualified, traditional practitioners and from over-the-counter drugs; community health workers should impart adequate and proper knowledge regarding the disease in the community. Even after so much of community efforts under NLEP, stigma regarding the disease still prevails in the community and the society. Behaviour Change Communication (BCC) programs to be enhanced at community level to improve the knowledge and attitude regarding leprosy among the population which could be helpful to remove stigma attached to the disease.

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