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Study on disability limitation, rehabilitation and social needs of persons affected by leprosy in Kurnool division of Kurnool district

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. The signs of advanced disease are striking: presence of nodules or lumps especially in the skin of the face and ears, plantar ulcers, loss of fingers or toes, nasal depression, foot drop, claw toes and other deformities. Since 1985 to date, the prevalence of leprosy has been reduced globally by >90%. Worldwide prevalence in 2014 is 0.32/10000 Population. The global leprosy cases reduced from >10 million in 1985 to <1 million by the year 2000 and to <0.2 million in 2013. Grade 2 disability rate in the WHO region is 0.23/100000 in 2013. As on March 2014, the Regional leprosy prevalence rate (PR) was 0.63 per 10,000 population, with 125,167 registered cases under treatment. The PR has steadily declined from 4.6/10,000 population in 1996 to 0.63/10,000 in March 2014. ABSTRACT

A total of 1.27 lakh new cases were detected during the year 2013-14, which gives Annual New Case Detection Rate (ANCDR) of 9.98 per 100,000 Population. This shows decrease in ANCDR by 7.4% from 2012-13 (10.78). A total of 0.86 lakh cases are on record as on 1st April 2014, giving a Prevalence rate (PR) of 0.68 per 10,000 Population. This shows decrease in PR by 12.8% from 2012-13 (0.78). 3 During the year 2013-14, a total of 7108 cases were detected with ANCDR of 8.13/100,000 and a prevalence rate of 0.55/10,000.
Deformities in leprosy have a profound effect on a person individually, his/her family and the community. There are two types of impairments in leprosy. Primary: occur as a result of direct nerve damage (neuritis, reactions): e.g. loss of sensation, Lagophthalmos. Secondary: occur as a result of neglected primary disabilities e.g. plantar ulcer, resorption of toes, fingers. 4 Leprosy exerts a strong influence on the behaviour of leprosy sufferers and they must receive support as soon as possible. It is not simply a physiological dysfunction, it is a complex psycho-social phenomenon with profound consequences for the affected person, his/ her family and the community.
Dehabilitation: refers to the reduction in the social function of the individual which is reflected in the overall quality of life, attitudes and actions. 5 There is very little data on the types of problems faced by people with leprosy-related disabilities (PLD) and the resulting needs. 6 Though much progress has been made in reducing the number of leprosy patients registered for MDT globally, relatively little is known about disability after release from treatment. Therefore there is an urgent need for data on leprosy-related disability to assess the need for prevention of disabilities (POD) and rehabilitation services. Such data is also needed for programme monitoring, evaluation and for advocacy. 7 Thus to address the problem of leprosy and disability in the population and to study, minimize the socioeconomic impact of the disease, we require primarily to assess their disability status and needs. There are many studies available which have shown insights into the needs of leprosy affected individuals living in leprosarium's and leprosy colonies but not many studies have attempted to assess the needs of leprosy affected individuals (under treatment or release from treatment) living in the community. So this study made an attempt to study the disability limitation, rehabilitation needs of persons affected by leprosy and to assess their dehabilitation status respectively.

METHODS
This is a community based cross-sectional study conducted in administrative limits of Kurnool division of Kurnool district from November 2013 -May 2014. Kurnool district is divided into Kurnool, Adoni and Nandyal revenue divisions. Among these Kurnool division was selected by simple random sampling. Study population includes all persons affected by leprosy who were registered between 1st May 2012 to 31st October 2013 and utilized/utilizing the services from the leprosy treatment units. (As per the data available at the District Leprosy Office, Kurnool). There were 296 registered persons affected by leprosy between May 2012 to October 2013 out of which 276 registered persons affected by leprosy were available for the study (20 cases were not available due to migration for work, not able to contact, left area permanently). The study was taken up after the approval of the Ethical committee of the Kurnool medical college, Kurnool.
During the study, purpose of the study was explained to all study subjects in his/her own language and informed verbal consent was taken. A pilot study was conducted in Kallur PHC area with the objective of standardizing the questionnaire and to know the feasibility of study. Permission was obtained from the District Leprosy Officer, Kurnool District to carry out the study. The District Leprosy Office maintains a register of all leprosy patients in the district. For the study purpose, information and address of all registered patients between 1st May 2012 to 31st October 2013 was obtained from the register. Each of the available registered case was contacted in person by the investigator and interviewed using a pretested, semi structured questionnaire. In case of patients living in hilly and remote areas and those missed during visit to their houses, the medical officers of the respective PHCs were contacted and requested to pool the cases in their administrative limits and intimate the same to the investigator for the study purpose.
Information was collected from these patients by interview method and examination using a pre tested, semi structured questionnaire. Information collected was to assess the disability limitation, rehabilitation needs, social needs and to assess their dehabilitation status of the registered cases by obtaining information about the following parameters: Disability status, Grading of disability, self care practices, Extent of dehabilitation. To assess the extent of disability for disability Limitation and rehabilitation needs, WHO Guidelines for Assessment and Grading for Disability in Leprosy 8 was used. The WHO Grading is of three Grades: 0, 1 and 2. Grade 0 means no deformity. Grade 1 means loss of sensation but no visible deformity. Grade 2 means presence of visible deformity.
Type of care needed based on the deformity was assessed using guidelines adapted from, H Srinivasan, "Guidelines for implementing a disability prevention programme in the field" Guide for choosing care activity. To assess the self care needs in terms of training received, practice and equipment required was assessed using guidelines adapted from, Srinivasan, "Guidelines for implementing a disability prevention programme in the field "List of training activities and supplies needed". 9 To assess the extent of dehabilitation for psychosocial need assessment "Dehabilitation Scale" developed by H. Anandaraj in study "Measurement of dehabilitation in patients of leprosy-A scale" was used. 5 It is a 52 structured item scale covering four areas related to stigma, 1. Family relationships, 2. Vocational condition, 3. Social relationships, 4. Self esteem. Each item consists of positive or negative statements with 5 point Likert type response scales (strongly agree to strongly disagree). The results are summed and divided by maximum possible scores and multiplied by 100 to get the "Score quotient". Patients got score quotient below 75, 76-86 and 87-100 graded as high, medium and low level of dehabilitation.

RESULTS
It was observed from the study that most of the study population were in the age group of 15-59 years. Among study population males (63.4%) were more compared to females (36.96%). Majority of study subjects were illiterates and doing unskilled work (daily wage labourers). More than half of study subjects were Hindus by religion.

Psychosocial impact of disease in study population
Some highlights of psychosocial impact on the study subjects observed in the process of grading the level of dehabilitation are presented below: Family relationship : 14 persons affected by leprosy felt there has been a change in family relationship, 2 persons affected by leprosy was thrown out of their house, 10 persons affected by leprosy felt that their families considered them as burden, 20 persons affected by leprosy stopped attending family functions, 7 persons affected by leprosy felt that their children's future will be affected because of the disease, 21 persons affected by Leprosy said that their family members did not touch them.
Vocational condition: 10 persons affected by leprosy said that they did not have occupation because of leprosy Social interaction: 7 persons affected by leprosy said that their friends stopped inviting them to their homes, 13 persons affected by leprosy felt that they have no one to share their feelings. 20 persons affected by leprosy felt that they are no more useful members to the society, 5 persons affected by leprosy felt that the society has discarded them, 3 persons affected by leprosy felt that people are afraid of touching them, 3 persons affected by leprosy said that they were not able to get married because of the disease. In this study among 40 persons affected by leprosy having Grade 2 disability, 28 (70%) had claw hand and 6 (15%) had ulcers in hands and 8 (20%) had ulcers in feet, 6 (15%) had scars / cracks in hands, 3 (7.5%) had scars/ cracks in feet. Lagophthalmos and foot drop were present in 2 (5%) and 3 (7.5%) persons respectively. Study done by Gautham

CONCLUSION
From the above findings it can be concluded that knowledge and practice among those needing self care practices were grossly deficient. The general health staff had not informed in most circumstances to persons affected by leprosy about self care practices in leprosy. These are very essential and important needs of the patients that have to be addressed. It is recommended to organize prevention of deformity (POD) training camps for the capacity building and motivation of the health staff. To conduct prevention of deformity (POD) sessions for all leprosy cases having Grade 1 and 2 disabilities with monthly monitoring of patients. To follow up of patients during routine field visits and record the extent of deformity.
Procurement, distribution of tools and training to use the tools for self-care of patients having deformity, with the support of disability prevention and medical rehabilitation (DPMR) under NLEP. Provide MCR footwear, buckets, oil / dress material to all patients needing the same and asses them periodically whether they are practising them are not. Stigma reduction activities and socioeconomic rehabilitation are urgently needed, in addition to strategies to reduce the development of further disabilities after release from treatment.
Counselling of patients by trained counsellor especially for those with deformities. High level of dehabilitation in the study population was present only in patients having visible deformity. Stigma has become associated with visible deformities which are preventable in most instances. Networking with NGOs for training, surveillance and management of deformities in leprosy.