Prevention-of-impairment-and-disabilities activities in leprosy after integration: role for physical medicine and rehabilitation personnel

Referral options for specialist care for prevention of impairment and disabilities are imperative in order to make an integrated leprosy control system work. This requires an understanding of the disease, in addition to the special skills for managing specific disabilities. Physical medicine and rehabilitation (PMR) personnel are better equipped to handle leprosy-related disabilities. They are well versed with biomechanical aspects of deformities, and are competent to provide splints, orthoses, etc. to the needy persons, and they can assess sensory motor functions and deformities. If PMR personnel can be trained in deformity correction they can become valuable resource persons for secondary and tertiary care of leprosy-affected persons. PMR persons, therefore, have the opportunity to volunteer themselves for this job to fill the void created by the fading out of leprosy surgeons. They will also have to bear additional responsibility to train general health care workers so as to empower them to look after the needs of those disabled by leprosy, many of whom will continue to be available for a number of years to come.     

Male-female (sex) differences in leprosy patients in south eastern Nigeria: females present late for diagnosis and treatment and have higher rates of deformity

A study was undertaken to investigate the possibility that female leprosy patients in South Eastern Nigeria may be at a disadvantage with regard to early presentation for diagnosis and the prevention of disability. A hospital-based retrospective examination of case notes for the period 1988-1997 was undertaken, totalling 2309 adult patients of whom 1527 (66 degrees/a) were male and 782 (33%) were female (confirming the usual 2:1 male:female ratio for this disease). Data were collected on 1) the clinical type of leprosy, 2) the interval between the onset of symptoms or signs and presentation for diagnosis and treatment and 3) the patterns of physical deformity/disability. The results indicate that in this part of Nigeria, female leprosy patients have a much longer period (duration of illness) between first symptoms or signs and presentation for diagnosis, compared with males; on average, the period before diagnosis in women was almost twice as long as that in men. Furthermore, they suffered a higher proportion of disabilities. There was no evidence to support discrimination against females with leprosy by the health staff or community and female health workers were available in both hospital and primary health care centres to receive and examine female patients. The Discussion refers to the many studies already published on gender issues, identifying a wide range of social, cultural and economic variables attributed by social structure to men and women, and including the impact of stigma, which may be particularly damaging to women in some situations. The main factors that account for late presentation of females with leprosy in this area have however still to be defined. The consequent higher proportion of disability/deformity in women is obviously of considerable concern, underlining the need for further clinical and social research in this part of Nigeria.     

Disability prevention and management in leprosy: a field experience

Bombay Leprosy Project has conducted operational research into cost effective ways of using therapeutic management for prevention of disabilities (POD). The goal of achieving this are broadly divided as 1) prevention of impairments and disabilities [POID] and 2) prevention of worsening of disabilities [POWD]. About 33-56% of newly registered leprosy patients already have clinically detectable nerve function impairment [NFI], often no longer amenable to MDT. An analysis of 892 leprosy cases treated with WHO-MDT stresses the need to focus attention on leprosy patients having > 5 skin lesions and multiple nerve thickening. Assessment of 454 disabled leprosy patients after 4 years indicated that the compliance for the services offered was good and it helped to improve the disability status in more than 50% of patients. In terms of effectiveness of the services, it was found to be effective in preventing worsening of deformities in hands and healing of trophic ulcers in feet. The methodology adopted has also helped us to develop an operational research model about the necessity to systematize the assistance and support to be given if the services can be routed through a public health facility. Because of the large numbers of leprosy patients with disability living in this region and the limited resources available, the services have to be targeted towards those who are most in need. The major advantage of such community based program is an attempt to eliminate the social stigma in the patients' families and the education of the community.     

淮安市麻风治愈存活者现状调查分析

目的: 了解淮安市麻风治愈存活者的生活现状和健康状况。 方法: 对麻风治愈存活者进行入户调查,具体包括收入情况、居住情况、劳动能力、患慢性病情况、畸残情况、康复需求、康复现状等。 结果: 877名麻风治愈存活者中,男女性别比为2.86:1,平均年龄70.18±10.05岁,15.28%为未婚者,19.95%独居,9.46%有住麻风院村需求,但仅有2.62%居住在麻风院村。56.90%完全丧失或部分丧失劳动能力,54.38%个人年收入低于5000元,慢性病患病率32.61%,畸残率50.63%。畸残者慢性病的发病率为53.61%明显高于无畸残者的30.48%（2=45.105,P<0.01）。结论: 麻风治愈存活者健康生活状况差,驻麻风村及康复需求高,满足率低,需要全社会的更多支持。     

Cojedes: a leprosy hyperendemic state

Background Leprosy is a chronic infectious disease produced by Mycobacterium leprae. In 1997 Venezuela reached the goal of elimination of leprosy as a public health problem (according to the World Health Organization a prevalence rate of ≤1/10,000 inhabitants), but five states still had prevalence rates over that goal. For this study we selected Cojedes State, where prevalence rates remain over the elimination goal. Objective Evaluate the real leprosy situation in high‐prevalence areas of Cojedes State. Materials and methods Seven communities of Cojedes State were selected because they had the highest historic prevalence, as well as the highest prevalence in the year to be studied (1997). Results A rank correlation using Spearman’s test comparing historical prevalence rates (1946–1996) and detection rates (1998–2004) gave a statistically significant P < 0.05 value. Diagnosed leprosy cases were as follows: age: 3.2% under 15 years old; sex: male/female rates between 60% and 91.66% males. The highest number of cases were paucibacillary forms: indeterminate leprosy (33.07%) and borderline tuberculoid leprosy (32.28%); tuberculoid leprosy (7.00%); and multibacillary cases (lepromatous leprosy, LL) were only 2.36%. Bacteriologically, 18.52 patients were M. leprae positive. At the moment of diagnosis, 96.6% showed no disabilities, 3.4% showed grade I disabilities, and there were no grade II or III disabilities. Conclusion This study confirms that several communities in Cojedes State have extremely high leprosy rates.     

Studies on mode of detection of leprosy in China during the years 1981-1998.

Along with the nationwide economic reform initiated in the early 1980s and the rapid decrease of leprosy endemic after the implementation of multi-drug therapy (MDT), the leprosy programme changed from 'vertical' to 'horizontal'. An evolution in the mode of detection of leprosy cases has consequently taken place. Based on the nationwide registration of newly detected cases, the profile of patients at detection has been studied. The proportions of cases corrected significantly with calendar years in detection by dermatological clinics, contact checks, 'clue survey' and mass survey, showing a significant increase in percentage of cases detected through dermatological clinics and contact checks, and decreases through 'clue survey' and mass survey. Detection of cases through dermatological clinics and voluntary reporting have become the main modes of case-finding during 1997-1998, accounting for 37.3% and 28.6%, respectively, where contact check accounts for only 9.1%. In areas with good dermatological services, a significantly higher proportion (75.9%) of cases was detected through dermatological clinics, where voluntary reporting and 'clue survey' were the main modes of detection in endemic areas. As regards confirmation of diagnosis, the great majority of cases were confirmed by leprosy units, even though they were detected in various other situations. Only 6.5% of leprosy cases were detected and subsequently confirmed by doctors in dermatologic clinics. The present modes of detection and their relation to demographical, epidemiological, clinical factors and health services are discussed. This study emphasizes the cardinal importance of the dermatological clinics in the detection of leprosy cases in China at the present time and hence the need to strengthen the training of doctors in these clinics, while continuously encourage their involvement in leprosy control.     

Integrating community-based rehabilitation and leprosy rehabilitation services into an inclusive development approach

Community-based rehabilitation (CBR) has been described as a strategy for leprosy rehabilitation. Developments in CBR and leprosy rehabilitation services, including Socio-economic rehabilitation (SER) show that both approaches aim to become part of a community development process. The basic assumption is that people with disabilities will benefit most from being included in mainstream programmes implemented in their own community, e.g. programmes aiming to improve livelihood. These developments have a decisive impact on the roles of all people involved in the rehabilitation process. Where the emphasis in the rehabilitation process shifts to the community and becomes part of community development, the rehabilitation workers need different competencies than were required in vertical disability programmes. This article focuses on the changing roles of mid-level rehabilitation workers and trainers and therapists. In many programmes a mid-level cadre was introduced to work with people with disabilities and their families. Consequently, trainers and therapists have moved away from direct, hands-on interventions and focussed on training this mid-level cadre and offering specialised referral services. This system was primarily developed to provide treatment at all levels, including community level. However, when rehabilitation becomes part of a community development process there is a need for 'change agents' and a structure that supports them. The success of integrating disability specific programmes like CBR and SER, into inclusive development programmes will depend largely on the extent to which rehabilitation workers are able to reinvent themselves as 'change agents' and redefine their roles, positions, and competencies.     

低流行状态下麻风防治策略研究——基于山东省皮肤病专科联盟成员单位的麻风症状监测

目的:麻风是重要的公共卫生问题,诊断延迟会增加疾病传播的风险,同时也会引起残疾、毁容等不可逆转的危害,早发现、早诊断、早治疗是阻断传播、消除危害的主要措施。进入新世纪特别是近十年来,我国麻风进入低流行状态,传统的主动发现麻风患者的方式—人群普查、密切接触者筛查和依靠各级专病防治机构—省市县(区)皮肤病防治所的垂直管理体系因成本效益比差而不再适应新时代麻风防治的需求,亟需探讨新的防治策略。方法:探讨以综合医院皮肤科和专病防治机构为单位组成的水平和垂直系统相结合的疑难皮肤病转诊系统—全省皮肤病专科联盟为依托的麻风早发现策略,把麻风症状监测工作由过去的专病防治机构承担转变为综合医院皮肤科与专病防治机构共同承担,所有疑似病例均由省皮肤病性病防治研究所作出最终诊断。结果:项目实施4年来,共接受转诊病例3043例,其中确诊麻风39例,诊断延迟期和二级畸残比分别下降66.23个月和38.08%,且二级畸残比较项目实施前下降25.61%。结论:基于综合医院皮肤科和专病防治机构相结合的症状监测方案的实施是新时代早发现麻风患者的有效策略。     

History of leprosy in Rio de Janeiro

The record of the first cases of leprosy in Rio de Janeiro dates from the seventeenth century. The first local host of leprosy patients was created from 1741, and the first colonies hospitals were built in the early twentieth century, in order to avoid contagion of the population. The first structures dedicated to research also date from this time: the Leprosy International Institute, the Leprology Institute, and the Leprosy Laboratory of the Oswaldo Cruz Foundation, where the most prestigious leprologists of Rio de Janeiro worked. Currently, investigations are focused on the Oswaldo Cruz Foundation; additionally, leprosy patients are treated at municipal health centers and state hospitals, and former colony hospitals only accept patients with severe disabilities.     

山东省麻风畸残预防试点项目3年实施结果评价

目的：评价国际麻风救济会与山东麻风畸残康复合作项目３年效果。方法：本研究共包括山东省６个县、市１１３２名麻风畸残者。项目实施包括神经料的检测和治疗、自我护理培训、提供防护鞋、安装假肢及必要的外科手术。结果：４５例ＭＤＴ病人中,确诊神经炎３人,经６个月泼尼松治疗后,神经疼痛和压痛消失,１例病人的足底麻木得到改善。项目中多数病人已基本掌握了自我护理知识的技能。眼、手、足的继发性损害改善率分别为９６．９％、１００％、和７５．４％。结论：项目中所实施２的技术措施,特别是对病人进行的自我护理基本知识和技能,对改善病人的生活质量是极为有用的,但该项目的持久性问题有待进一步研究。     

Variables influencing regularity of leprosy patients in attending treatment clinics.

Regularity in attending clinics as well as taking drugs assume a very significant place in leprosy control programme since irregularity of leprosy patients can lead to poor disease control, drug resistant disease, and development of physical deformities and disabilities thus leading to programme failure. Further, these complications also create socio-economic and psychological problems to the victims as well as their families in myriad ways. This paper reports a study aimed at identifying the variables, among a set of 29 selected demographic, socio-economic and disease-related variables, having significant association with regularity of leprosy patients in attending treatment clinics. It was found that age of the patients, type of family, duration of the disease, time lag between diagnosis of the disease and starting treatment and knowledge of patients and their families about the disease were significantly associated with treatment regularity.     

Transformation of a leprosy hospital in Nepal into a rehabilitation centre: the Green Pastures Hospital experience

Green Pastures Hospital for leprosy patients in Pokhara Nepal, was established in 1957 by the International Nepal Fellowship (INF) in a decade which saw the establishment of many similar hospitals in other leprosy endemic countries. In recent years, mainly due to significant improvements in leprosy control services and the wide implementation of multiple drug therapy (MDT) for all patients, many of these specialist hospitals have encountered 1) a decline in prevalence rate, 2) a large decline in the percentage of patients presenting with WHO grade 2 disability, 3) a decline in the previous indications for hospital admission, e.g. immunologically mediated reactions, and 4) a need to develop financial independence making them less dependent on donor agencies. In addition, the decision to change from specialist to general services opened up the possibility of using facilities and expertise for the rehabilitation of non-leprosy affected persons, whilst also moving towards the reduction of stigma and prejudice against patients with leprosy. This paper describes the process of 'transformation' of an established and well known leprosy hospital in Western Nepal from 1997 onwards into a general rehabilitation hospital. Careful preparation, with full involvement of existing staff and co-operation with other agencies in the hospital catchment area were key factors in what has now become a successful venture. Surgical procedures and orthopaedic appliance services for non-leprosy affected persons have increased in recent years and the introduction of a dermatology service has resulted in out-patient attendance rising from about 1000 in 1999 to 4500 in 2003. No evidence of reluctance to attend and use the facilities offered by this hospital because of stigma against leprosy has been encountered. Many of the changes described have been made in order to reduce financial dependence on donor sources of support, but the underlying reason for transformation is still based on the vision of the INF mission to work for and improve the condition of the marginalized in society.     

Leprosy outpatient clinic in Aichi Prefecture, Japan

Until the Japanese Leprosy Prevention Law was abolished in 1996, leprosy patients, regardless of their severity, had to be treated by accredited doctors. The majority of them had to be confined in a sanatorium to be treated, since only few hospitals/sanatoria had outpatient clinics for leprosy patients. This de facto confinement limited their occupational, social, financial, and family options, but no clear criteria/guidelines allowing discharge existed. The importance of leprosy outpatient clinics was almost never debated until 1962, when Tofu Association (a foundation established in 1952 to support the confined patients) and the National Suruga Sanatorium planned the opening of the clinic. This clinic looked after total of 4,977 patients until the abolishment of the Law. Since 1996, 349 persons consulted the clinic as of 2010. The importance of the continuation of these clinics is beyond dispute, even in low-endemic countries. However, the diminishing number of patients and demands in this country makes the management difficult. Thus, coordination with the local clinics and dermatologists is inevitable.     

WHO disability grade does not influence physical activity in Brazilian leprosy patients

Disability caused by leprosy may be associated with stigma. The aim of this work is to describe the degree of disability, quality of life and level of physical activity of individuals with leprosy and to identify possible correlations between these factors. Ninety-seven patients from two referral centres were studied. A complete medical history was taken and the World Health Organization degree of physical disability classification (WHO-DG), the International Physical Activity Questionnaire (IPAQ) and the Medical Outcome Study 36-item Short-form health Survey (SF36) were applied. The mean age of patients was 51 +/- 14.9 years old; participants were predominantly men, married, unemployed, had concluded treatment and had had lepromatous leprosy. The WHO-DG and the level of physical activity (P-value = 0.36) were not correlated. The WHO-DG showed that 72.2% of patients had disabilities, 37.1% of whom performed vigorous physical activities. No significant association was observed between the WHO-DG and the domains of the QoL SF-36 except for functional capacity (P-value = 0.02); the physical capacity is generally 'very good' when individuals have no disabilities and 'bad' with severe disabilities. In conclusion, the WHO-DG of leprosy patients does not affect the level of physica activities or quality of life except functional capacity. There is no significan association between physical activities and quality of life in these individuals.     

Disability index of hands and feet in patients attending an urban leprosy clinic

189 leprosy patients including 20 from a leprosy colony having disabilities and deformities were graded by the WHO (1960) classification and their disability indices were calculated. Disabilities occurred more frequently in males and the disability index was significantly higher in those with longer duration of the disease and in multibacillary patients. Majority of the disabled patients (82.5%) were manual workers, but the highest disability index was observed in beggars. Irregularly treated and untreated patients had significantly higher disability indices (DI 2.40 and DI 1.40) than those taking regular treatment (DI 1.09). No correlation was found between severity of disability and occurrence of type I and type II reactions. Disabilities of hands and feet occurred with equal frequency.     

1990-2018年云南省新发麻风患者畸残情况分析

目的：分析云南省1990-2018年新发麻风患者2级畸残情况。方法：对1990-2018年11010例新发麻风患者资料进行分析。结果：新发病例中2级畸残2647例,2级畸残率24.04%。4006例少菌型患者中2级畸残者1294例（32.3%）, 7004例多菌型患者中畸残者1353例(19.3%)。对其中的2202例畸残者进一步分析,单侧和双侧眼部畸残分别为138例和184例,手部单双侧畸残分别为742例和430例,足部单双侧畸残分别为384例和144例。结论：少菌型（PB）比多菌型（MB）麻风患者畸残比例更高,手部畸残明显高于眼部和足部,手部和足部畸残常呈不对称性。     

Medical care delivery through leprosy clinics--consumer's perception, experiences and suggestions

Randomly selected 500 adult leprosy patients, registered for treatment with six Sectors of a Leprosy Control Unit in Chingleput District of Tamil Nadu (India) were interviewed to study their perception, and experiences with medical care being delivered to them through leprosy clinic(s), and their suggestions to improve the system. About 14% patients did not perceive their disease as leprosy. And 8% of the total patients were taking treatment outside their sector leprosy clinics. The services like physiotherapy, rehabilitation, health education etc. were known to only 3-8% patients, perhaps on account of their non-availability and or non-practice. On an average, a patient had to cover a distance of 2.1 +/- 2.5 KMs (one side) in 24 +/- 49 minutes to reach clinic spot, mostly by walk (83.2%), and spent 58.9 +/- 32.2 minutes at clinic, of which two third in waiting for service(s). Each patient had consulted 1.23 +/- 0.55 medical agencies for treatment of leprosy. The average man-day and wage losses to a patient, due to monthly clinic attendance, were estimated to be 0.48 +/- 0.49 days and Rs. 2.28 +/- 3.06, respectively. Only 10.6% of the 500 patients got admitted 1.55 +/- 0.89 times in leprosy hospital for a duration of 63 +/- 69.30 days and lost wages of Rs. 126.4 +/- 85.64 per month of stay in hospital. Availability and efficient delivery of comprehensive medical care through well organized and regularly conducted leprosy clinic, by considerate and sympathetic staff was much emphasised by patients. Various factors influencing medical care delivery and its utilization by patients, are discussed in this communication.     

Disabilities in leprosy patients ascertained in a total population survey in Karonga District, northern Mala?i

This paper describes the pattern of disability among 1654 leprosy patients ascertained between 1973 and 1987 in Karonga District, Northern Mala?i. Approximately 20% of patients identified prior to 1980 had some disability at registration, but this percentage fell to approximately 10% with the introduction of total population surveys in the Lepra Evaluation Project. The proportion of patients with disabilities at registration increased with age, was higher among males than females, was higher among borderline and lepromatous than tuberculoid patients, and was higher for passively than for actively detected patients. The risk of developing disabilities among patients without any disabilities at registration was approximately 5 per 1000 person years, and appeared to be slightly higher after the completion of treatment than during treatment.     

重复开展消除麻风运动地区的病例发现和患者临床情况分析

目的：观察湖南省西部2个麻风高流行县重复开展消除麻风运动对当地麻风患者发现及临床指标的影响。方法：收集自1997—2002年麻风新发病例，其中包括开展消除麻风运动年份的病例资料，对各年发现病人数，平均确诊年龄，畸残率，延迟期等进行比较分析。结果：从1997年至2002年共发现133例患者。平均每年发现22．2例，年发现率2．4/10万。1998年开展LEC时发现的新病人数是接近开展IEC前一年的2倍，以后新发现病人数减少到一个稳定的低水平，在2002年重复开展LEC时，发现数又是接近前一年的2倍。但与1998年首次开展LEC时发现数相比，减少了50％。新发病人的疾病延迟期平均为34．8月，疾病延迟期在开展LEC前后未显示有缩短或延长的趋势。133例患者中，35例有可见畸残(26．3％)。但新发现病人中2级畸残率从1998年的32．0％下降到2002年重复实施LEC时的12％。结论：作者认为重复实施消除麻风运动促进了当地某些流行病学指标的好转。     

Eye disease in multibacillary leprosy patients at the time of their leprosy diagnosis: findings from the Longitudinal Study of Ocular Leprosy (LOSOL) in India,the Philippines and Ethiopia

Existing prevalence surveys do not provide adequate information to estimate the magnitude of ocular pathology or vision loss in leprosy patients. We sought to determine the prevalence of ocular findings and related risk factors in leprosy patients at the time of their disease diagnosis. We also sought to determine if there were geographic differences and whether these were due to different demographic characteristics of the populations. The study was undertaken at Schieffelin Leprosy Research & Training Centre (Karigiri, India), Leonard Wood Memorial Leprosy Institute (Cebu, Philippines), and (for 3 years only) ALERT (Addis Ababa, Ethiopia). Newly diagnosed multibacillary (MB) leprosy patients as well as MB cases relapsed after dapsone monotherapy were eligible for enrollment. In each study site, the target population was 300. Standardized examinations were conducted between 1991 and 1998. Patient enrollment included 301 patients in Karigiri, 289 patients in Cebu, and 101 patients in Addis Ababa. The age-adjusted prevalence of blindness (< 6/60 in the better eye) and visual impairment (6/24-6/60) was 2.8% and 5.2%, respectively. Lagophthalmos and leprosy related uveal changes were detected in 3.3% (95% CI 2.0-4.7%) and 4.1% (95% CI 2.4-5.7) of patients, respectively. Overall, 11% (95% CI 8.5-13.2%) of newly enrolled MB patients had potentially blinding leprosy related ocular pathology. Lagophthalmos was associated with increasing age, a short duration between onset and diagnosis, and a previous reaction involving the face. Uveal conditions were associated with increasing age. Overall, eye disease was more common in Indian and Ethiopian patients compared to Filipino patients; however, differences were not significant when controlling for age and clinical (non-ocular) factors. Patients with potentially blinding leprosy related pathology were over three times more likely to have other (hand and foot) disabilities than patients without pathology. Differences in the prevalence of blindness and potentially blinding leprosy related ocular pathology between the sites could be accounted for by the differences in age and other clinical factors of the patients at the different sites. Findings suggest that, even in the face of active leprosy control efforts, around 11% of patients will have potentially blinding pathology at the time of their diagnosis and 2.8% will be blind. If those patients with lagophthalmos or blindness are considered appropriate for referral for more detailed assessment, approximately 4% of newly diagnosed leprosy patients will require active follow-up for eye care; including those with reaction involving the face will result in 9.4% of patients requiring active follow-up. These people are likely to be older, with a reaction involving the face, and/or with other disabilities than those not requiring active follow-up.