Is disability in leprosy still a burden? A cross-sectional study in a rural block in Tamil Nadu, India.

Background: Leprosy, a disease caused by Mycobacterium leprae, is an important cause of preventable disability. Methods: The present cross-sectional study was undertaken among leprosy-affected persons in a rural block in Kanchipuram District, Tamil Nadu, India in the year 2013. The sample included treatment completed leprosy affected persons ≥18 y of age. Persons with difficulty in cognition and those who were not willing to participate in the study were excluded. Subjects were also graded for any deformities of the body using World Health Organization (WHO) disability grading. Results: The present study, carried out among 171 people affected with leprosy in a rural block, showed the lifetime prevalence of disability was 88.3% (95% confidence interval 83.4 to 93.1). The mean age of the study participants was 61.58±12.31 y with almost equal distribution of males (49.7%) and females (50.3%). WHO disability grading showed that 147 (86%) of the subjects were grade 2 (visible deformity) while only 4 (2.3%) were grade 1. It was found that education, occupation, income and duration since diagnosis had statistical significance with disability. Conclusions: Disability was observed more in males and the most common type of deformity was hand and foot deformity. Further studies are needed to assess those patients who completed treatment and recommends periodic neurological assessment of those in treatment.

Courtesy stigma: A concealed consternation among caregivers of people affected by leprosy.

This study explored experiences of courtesy stigma among caregivers of people affected by leprosy. Using a qualitative research approach, twenty participants were purposively selected and in-depth interviews conducted. The interviews were audio-recorded, transcribed, and analyzed to identify emerging themes that addressed objectives of the study. The findings indicated that caregivers of people affected by leprosy experienced courtesy stigma. Evidence showed that fear of contagion underpinned caregivers' experiences, especially in employment and romantic relationships. In addition, participants adopted different strategies (disregarding, concealment, education, faith-based trust) to handle courtesy stigma. The findings demonstrate that psychosocial support and financial assistance to caregivers are necessary considerations for attainment of effective care for people affected by leprosy.

Response to Dr Stevens' letter ref. Visitisen et al: "Short-term effects of night shift work on breast cancer risk: a cohort study of payroll data".

We thank Dr Richard Stevens for his comments (1) on our recent article that showed no increased risk of breast cancer following recent night shift work when compared with recent day shift work (2). This finding was based on linkage of day-by-day information on working hours and breast cancer incidence data. Results are thus less likely to have been biased by differential misclassification than findings from earlier studies relying on self-report (3). We defined a night shift as ≥3 hours of work between 24:00-05:00 hours and a day shift as ≥3 hours work between 6:00-20:00 hours. This day shift definition did not exclude shifts starting before 05:00 or ending after 24:00 hours. However, this affected only 0.02% and 0.3% of all day shifts, respectively. This diminutive misclassification, that is expected to be non-differential, can hardly explain our negative findings. It is suggested that shifts that begin after 07:00 and end before 18:00 would constitute a more sensible baseline comparison group. Since the biological mechanism is not certain, it is not obvious to us if this will be a more appropriate reference than the present. However, we agree that future studies should test how different definitions of shifts affect the risk of breast cancer, which will be possible using this type of data. We only had information on working hours from 2007 and onwards, and night shift work prior to 2007 could have confounded our analyses towards no effect but only if inversely associated with night shift work in 2007 or later. We find this unlikely. Left truncation could also have biased findings towards the null. We therefore supplemented analyses of the total study population with analyses of the one-third of the population with first recorded employment in 2008 or later (the inception population). Even if the mean age was 35.5 years - and many undoubtedly had been working (with and without night shifts) prior to 2008 - this population should be less affected by such selection bias, but we observed similar risk estimates as for the total study population. Taken together, we find that our study provides rather robust evidence of no short-term breast cancer risk following recent night shift work. It must, however, be stressed that data did not allow assessment of a possible long-term risk. Reference 1. Stevens R. Letter ref. Vitisen et al: "Short-term effects of night shift work on breast cancer risk: a cohort study of payroll data". Scand J Work Environ Health. 2017;43(1):95. http://dx.doi.org/10.5271/sjweh.3607 2. Vistisen HT, Garde AH, Frydenberg M, Christiansen P, Hansen AM, Hansen J, Bonde JP, Kolstad HA. Short-term effects of night shift work on breast cancer risk: A cohort study of payroll data. Scand J Work Environ Health. 2017;43(1):59-67. http://dx.doi.org/10.5271/sjweh.3603. 3. Ijaz S, Verbeek J, Seidler A, Lindbohm ML, Ojajarvi A, Orsini N, Costa G, Neuvonen K. Night-shift work and breast cancer--a systematic review and meta-analysis. Scand J Work Environ Health. 2013 Sep 1;39(5):431-47. http://dx.doi.org/10.5271/sjweh.3371.

Effects of wages on smoking decisions of current and past smokers.

PURPOSE: We used longitudinal data and instrumental variables (IVs) in a prospective design to test for the causal effects of wages on smoking prevalence among current and past smokers. METHODS: Nationally representative U.S. data were drawn from the 1999-2009 waves of the Panel Study of Income Dynamics. Our overall sample was restricted to full time employed persons, aged 21-65 years. We excluded part time workers and youths because smoking and wage correlations would be complicated by labor supply decisions. We excluded adult never smokers because people rarely begin smoking after the age of 20 years. IVs were created with state-level minimum wages and unionization rates. We analyzed subsamples of men, women, the less educated, the more educated, quitters, and backsliders. Validity and strength of instruments within the IV analysis were conducted with the Sargan-Hansen J statistic and F tests. RESULTS: We found some evidence that low wages lead to more smoking in the overall sample and substantial evidence for men, persons with high school educations or less (<13 years of schooling), and quitters. Results indicated that 10% increases in wages lead to 5.5 and 4.6 percentage point decreases in smoking for men and the less educated; they also increased the average chance of quitting among base-year smokers from 17.0% to 20.4%. Statistical tests suggested that IVs were strong and valid in most samples. Subjects' other family income, including spouses' wages, was entered as a control variable. CONCLUSIONS: Increases in an individual's wages, independent of other income, decreased the prevalence of smoking among current and past smokers.

Stability of vocational interests after recent spinal cord injury.

OBJECTIVE: We sought to identify the stability of vocational interests among persons with spinal cord injury (SCI) first assessed during inpatient rehabilitation. DESIGN: Initial assessments were completed during inpatient rehabilitation an average of 50 days after SCI onset (n = 521). Follow-up measures, collected by mail, were obtained an average of 16.6 months postinjury (n = 190) and 29.1 months postinjury (n = 296). Participants (n = 135) completed all 3 assessments. Participants completed the 1994 Strong Interest Inventory (Campbell, 1971; Harmon, Hansen, Borgen, & Hammer, 1994), Form T317, a 317-item measure of vocational interests. RESULTS: Comparison of scale means across 3 times of measurement indicated significant changes in 2 of 6 general occupational themes (GOT), 8 basic interest scales (BIS), and 2 special scales (leadership style, risk taking/adventure). With 1 exception, a linear trend indicating an increase in reported interests accounted for observed relationships. An age by time interaction occurred with 1 GOT and 3 BIS. The average stability coefficient was 0.61 for the GOT, 0.59 for the BIS, and 0.70 for the special scales. The average coefficients were somewhat lower for the oldest participants. CONCLUSION: Interests do not appear to be static when first measured during inpatient rehabilitation after SCI. Rather, they evolve with average increases on select themes more compatible with the limitations of SCI. Stability coefficients suggest that interests are likely to change more than indicated in earlier studies.

The psychosocial impact of vitiligo in Indian patients.

BACKGROUND: Vitiligo has a special significance in Indian patients both because depigmentation is obvious on darker skin and the enormous stigma associated with the disease in the culture. AIMS: This study was carried out to determine the beliefs about causation, aspects of the disease that cause concern, medical, and psychosocial needs of the patients, expectation from treatment and from the treating physician, and effects of disease on the patient's life. METHODS: Semi-structured interviews were conducted in 50 patients with vitiligo. Purposive sampling was used to select subjects for the study. Each interview was recorded on an audio-cassette and transcripts were analyzed to identify significant issues and concerns. RESULTS: Patients had a range of concerns regarding their disease such as physical appearance, progression of white patches onto exposed skin and the whole body, ostracism, social restriction, dietary restrictions, difficulty in getting jobs, and they considered it to be a significant barrier to getting married. The condition was perceived to be a serious illness. Stigma and suicidal ideation was reported. While there were several misconceptions about the cause of vitiligo, most patients did not think their disease was contagious, heritable or related to leprosy. Multiple medical consultations were frequent. Complete repigmentation was strongly desired, but a lesser degree of repigmentation was acceptable if progression of disease could be arrested. The problems were perceived to be more severe in women. The disease imposed a significant financial burden. CONCLUSION: Addressing psychosocial factors is an important aspect of the management of vitiligo, particularly in patients from communities where the disease is greatly stigmatizing.

A comparison of stigma among patients with leprosy in rural Tanzania and urban United States: a role for public health in dermatology.

BACKGROUND: Leprosy is a chronic infection of the skin and peripheral nerves caused by the bacterium Mycobacterium leprae, which causes peripheral insensitivity and disfigurements of the skin, limbs, and digits. Social stigma is a common consequence of leprosy and may differ according to level of physical disfigurement and geographic location. The objective of this study was to assess social stigma encountered by patients with leprosy in clinical settings located in rural Tanzania and urban USA and to compare the social stigma reported in these regions. METHODS: A total of 56 respondents were recruited from one leprosy inpatient facility in Shirati, Tanzania (n = 28), and one outpatient clinic in Los Angeles, USA (n = 28). Cross-sectional data were obtained from face-to-face interviews, which were conducted with respondents at each clinic location. Measures of perceived stigma were assessed in family relationship, vocational, social interaction, and interpersonal contexts. RESULTS: Patients in Tanzania, as compared with those in the USA, reported significantly higher levels of stigma in family relationship and vocational contexts. Tanzanian patients also reported higher levels of stigma in social interaction and self-esteem contexts, but these differences were marginally significant and may reflect the small sample size. CONCLUSIONS: Leprosy-related social stigma is a major problem in regions of both developed and developing countries; however, patients with leprosy in developing countries reported higher levels of stigma in four social contexts. A public health role in dermatology is discussed as an agent of early diagnosis, control, and education in order to reduce social stigma and promote social rehabilitation.

Motives and determinants for residence change after leprosy diagnosis, central Brazil.

OBJECTIVE: To determine the extent of population movement after diagnosis with leprosy and to describe the underlying motives and determinants for relocation. DESIGN: A cross-sectional study was conducted among those newly diagnosed with leprosy in 79 endemic municipalities in the state of Tocantins, central Brazil. Individuals were identified through the National Information System for Notifiable Diseases (SINAN) database and interviewed with structured questionnaires. RESULTS: In total, 224 (20.9%) out of 1070 individuals relocated after their diagnosis with leprosy. Respondents moved to another neighbourhood in the same municipality (n = 178, 79.5%), followed by another municipality in Tocantins state (n = 26, 11.6%) and in another state (n = 11, 4.9%). The primary motives and/or determinants for relocation were: home ownership (n = 55, 28.4%), familial reasons (n = 43, 19.2%), to seek better living conditions (n = 27, 13.9%), employment (n = 26, 11.6%), and better neighbourhood (n = 22, 9.8%). Other motives were related to better access to leprosy diagnosis/treatment (n = 11, 4.9%), owner-terminated rental (n = 5, 2.2%), personal finances/could not afford housing (n = 4, 1.8%). Perceived stigma due to leprosy was mentioned by one participant (0.5%). CONCLUSION: In Tocantins state, population movement is lower among individuals recently diagnosed with leprosy, as compared to the overall population. The primary motives for relocation after leprosy diagnosis were related to lifestyle changes. Stigma and treatment-related reasons did not appear to be common motives for population movement. These results may reflect policy changes instituted from the Brazilian Program of Leprosy Control to decentralise leprosy services and intensify health education campaigns within a broader concept of Information, Education and Communication.

Funding for self-employment of people with disabilities. Grants, loans, revolving funds or linkage with microfinance programmes.

In 2005, Handicap International commissioned a study on the practices of funding for self-employment activities of people with disabilities (PWD), with a special focus on access to microfinance. The overall goal of the study was to produce a framework document highlighting good practices, strategies, tools and operational methods that guarantee the efficiency and sustainability of self-employment projects for PWDs. The first phase of the study consisted of a literature review and a worldwide survey. Through this first phase the research team identified the most innovative programmes for further analysis through field visits. In the second phase field visits were conducted in Afghanistan, Bangladesh, Ethiopia, India, Kenya, Nicaragua and Uganda, while regional workshops were organised in Dhaka and Nairobi. Phase three involved consolidation and analysis of the information and finally drafting of the framework document. This paper summarises the findings and good practices as presented in the framework document, based on the results of the literature review, the survey and the field research. It is not a scientific paper, i.e. it doesn't contain a discussion of the literature reviewed or systematic reference to sources, the same as the document on which it is based, as it is primarily meant for 'practitioners'. A main finding of the study was that there is no single 'best solution' to funding of self employment activities. While inclusion of PWDs in existing microfinance institutions (MFIs) is the preferred strategy, guaranteeing efficiency, sustainability and future access to funding for the target group, it was found that in reality many PWDs do not have access to microfinance programmes. This can be explained by stigmatisation of PWDs by staff of MFIs, who do not believe in their income earning and repayment capacity, and self-exclusion by PWDs. To fight against it projects have been set-up linking MFIs with programmes for PWDs, focusing on better information exchange between both parties respectively on disability for MFIs and the characteristics of microfinance for programmes for PWDs. Other programmes experiment with special credit lines or guarantee funds, placed at the disposal of MFls and earmarked for loan disbursement for PWDs, to facilitate their inclusion. Another reason for non-inclusion is the vulnerability of many PWDs. Many of them have no prior business experience, while many MFIs only provide loans to clients with an existing business. Vocational and/or business training and raising of their self-confidence, to be assured by a programme for PWDs, is often required prior to setting-up of a self-employment activity and taking a loan. If not prepared to run a 'business' successfully, taking a loan will present a too great a risk for themselves, getting indebted, and for the MFI. 'Start-up' grants for business-starters and revolving funds managed by PWD programmes, are other approaches practised by PWD programmes, of which the pros and cons are discussed in the study. A major weakness of many MFIs is that they do not reach the most vulnerable clients, including many of the PWDs, and their weak presence in rural areas especially in Africa. MFls have to look for innovative approaches to deepen their outreach. The self-help group approach in India, starting with the clients' own savings from which loans can be disbursed to the group members while linking the well-performing groups to banks for access to bank loans, is such a new approach. It is practised by The Leprosy Mission Trust in India. In Africa, some international NGOs started with similar 'community based saving and lending groups'.

Awareness about the persons with disability act among leprosy patients and other disabled persons.

To assess the level of awareness about the different provisions of the Persons with Disability Act (PWD Act) among leprosy patients and other disabled, 233 disabled persons from the self-help groups formed by Vadathorasalur Leprosy Control Unit have been interviewed using a structured interview checklist. The results show that 74.7% of the respondents were aware that identity cards are available for the disabled, 56.2% were aware of the free education benefit to the disabled, as low as 35.6% were aware of the scholarships, 33% knew about the employment reservations, 24.9% heard about the housing scheme of the government for the disabled, but 24.5% only knew about law against discrimination, 31.8% came in contact with institutions for the severely disabled and only 16% were aware of the unemployment allowance to the disabled. The level of awareness is low among women with regard to all components of the Act. It was found that students studying up to secondary level were not aware of the availability of scholarships and free education, which needs to be seriously looked into, especially by educational institutions. The level of formal education played a significant role in increasing awareness about the Act among literates. The knowledge is low among persons of all occupations. The study showed that there is a great need for an educational intervention programme to publicize the provisions of the Act among the disabled and their families.

Factors contributing to the decline of leprosy in Spain in the second half of the twentieth century.

BACKGROUND: Leprosy is a chronic infectious disease that is considered to be declining, though it still remains prevalent in many parts of the world. A study was made to explore the health and socioeconomic factors that most influenced the trend of the disease in a typical Mediterranean country. MATERIALS AND METHODS: An ecological study was conducted, investigating possible social, economic and health factors related to the evolution of leprosy incidence. The time period considered was 50 years--the second half of the twentieth century in Spain. RESULTS: The variables showing the strongest correlation to evolution of the incidence of the disease were employment, the number of physicians, and the gross domestic product (GDP), with negative coefficients--while tuberculosis showed a positive coefficient. However, the GDP showed the highest coefficient (0.5). The model that best explained the evolution of leprosy over the last 50 years comprised a 6-year lag period between the socioeconomic factors and the incidence of leprosy--explaining 57% of the data obtained. The annual decrease in leprosy incidence was 1.6%. CONCLUSIONS: Socioeconomic development, assessed in terms of the GDP, was the most important factor in explaining the evolution of leprosy incidence.

[Social reproduction of leprosy: a study of patients profile with leprosy in the city of São Paulo]. / A reprodução social da hanseníase: um estudo do perfil de doentes com hanseníase no Município de São Paulo.

This study discusses the relationship between work and living conditions among leprosy patients enrolled in the São Paulo municipal public health system in 1996. Social patterns were studied based on the theory of social determination of the health-disease process. The main purpose of the study was to emphasize evidence of the disease determination network, seeking new knowledge to improve public policies on leprosy. Data were gathered from a sample of leprosy patients registered in the city's public health system. Although patients' families are characterized by a common social thread, different work/life possibilities allow for a classification of patients into three social groups. The majority belong to groups that are marginalized from social production, living in areas where social exclusion is more extreme, on the outskirts of the city. If the trends in this study persist, incident leprosy cases will result from the social exclusion of migrants from Brazil's Southeast and Northeast. The study also discusses the position of young people and female patients in the determination network of this infectious disease in the city of São Paulo.

Relationship of skin ulcers and physical deformity with employment status and compliance with health promotion in leprosy.

OBJECTIVE: To determine if recurrence of ulcers and physical deformity in leprosy is associated with employment status and compliance with health promotion advice. METHODS: Between April-August 1992, a cohort of 55 consecutive leprosy patients admitted with skin ulcers were studied for ulcer recurrence, physical deformity (taking into account neuromuscular and skeletal damage), employment status, compliance with health promotion advice and knowledge of the disease. RESULTS: High grade physical deformity was present in 34/55 (62%) patients while recurrent ulceration occurred in 40/55 (75%) patients. With regard to employment status, the odds of high grade physical deformity were significantly higher for street traders and unemployed compared to semiskilled and skilled workers (odds ratio 4.2, 95% confidence interval 1.01-19.8, p = 0.03). There was a trend of higher odds of recurrence of ulcers for street traders and unemployed compared to semiskilled and skilled workers (odds ratio 2.3, 95% confidence interval 0.5-9.4, p = 0.2). With regard to health promotion, there was poor compliance with advice about protective footwear and care of insensitive extremities. Level of knowledge about the disease and its prevention was also inadequate. CONCLUSION: Physical deformity was associated with lack of reasonable employment among leprosy patients. There was poor compliance with preventative advice. Health promotion strategies should be directed toward targeted health education and prevention of physical deformities.

[Identification of psychosocial problems in patients with Hansen's disease by analysis of computerized resources]. / Identificação de alguns problemas psicossociais em portadores de Hanseníase utilizando para a análise os recursos da informática.

The purpose of this study was to identify leprosy patients' psychosocial problems experienced after they were informed about their diagnosis. We focused attention upon concerns and behavioral changes related to their families, friends, jobs and to themselves. Data were obtained by a two opened questions interview and they were analysed with the aid of artificial intelligence techniques. These intelligence tools were used to discover the most frequent words, phrases and concepts existing in the interview reports. The results showed that after being informed about their diagnosis, the majority of the patients referred some concerns and behavioral changes related to their families, friends, jobs and to themselves. The main concerns of the population were related to the disease (transmission, the treatment extension, the possibility of hospitalization, the uncertainty about the cure). These facts induced some of the patients to avoid telling people about the disease they have.

Impact of knowledge of leprosy on the attitude towards leprosy patients: a community study.

NLEP, through its survey-education-treatment (SET) pattern, attempts to educate the community members about the scientific facts of leprosy with the view to improve their knowledge leading to a more positive attitude towards the leprosy afflicted. This paper explores the impact of knowledge on the attitudes of 1199 community members drawn from two States, Andhra Pradesh and Orissa, towards leprosy. The results show that, overall, a high knowledge level did not necessarily generate positive attitudes. There was a general negative attitude despite 35% to 50% of the respondents having high knowledge level. There were, however, situations in which a high level of knowledge helps to have positive attitudes. These situations differ in the two states studied.