Chapter 8 Health education Objectives Prejudice against leprosy and discrimi- nation against patients can undermine control measures, as also can indifference to the presence of the disease in the community. The objective of health edu- cation should therefore be to produce in the public, in patients, and in their families a reasoned attitude towards leprosy that neither exaggerates nor minimizes the dan- gers of the disease. Health education should be included from the very beginning in every leprosy programme and be con- tinuously stressed during the development of activities. Health education in leprosy should be conducted in conjunction with health edu- cation in other diseases and be a feature of cach control project. Adequate budgetary provision should be made for the purpose. Health education is an important duty of all health workers. They should therefore be given special training for this purpose, according to their knowledge, skill, and understanding. In some programmes it may be necessary to assign a health education specialist to work in leprosy. He or she should help to determine the training needs of the staff, not only in terms of putting the message across to the people—what methods to use, etc.—but also in recog- nizing and overcoming any prejudice they themselves may have. The attitude of the workers is important to the success of health education. Health education should be based on facts presented in their proper perspective. Investigation into the causes of prejudice against leprosy should be conducted in different countries with a view to develop- ing better methods of overcoming it. In 62addition, the organization of the leprosy service, and especially the manner in which case-finding, treatment, etc., are carried out, should be evaluated in relation to their contribution to health education objectives. Do they help or hinder them, strengthen prejudice or bring it down? Health education should be directed towards: 1) The patient and his or her family. Every leprosy patient must be convinced that treatment has to be taken regularly and that contacts should be repeatedly ex- amined. If there is no success in teaching this, irregularity in taking treatment and, consequently, persistence of infectiousness and the appearance of new cases that may later become infec- tious will nullify or greatly reduce the effectiveness of leprosy control. The patient should also be instructed in the prevention of disabilities. The advan- tages of early diagnosis and treatment, including the prevention of disabilities, should be stressed. Any suspicious le- sions should be examined by a com- petent person. 2) Medical students, physicians, and health staff. 3) The general public. It should be re- membered that, in the population not considered to have been directly ex- posed to leprosy through the family, the total number of patients is higher than the total among known contacts {in whom, however, the incidence is higher). Therefore, the general public must be made aware of the cause, early symptoms, and treatment of the dis- ease, as well as of the possibility of control and the control measures. Health education should reach every section of the population, particularly students from the primary school to the university level, so that new gener- ations will be better prepared to throw off the stigma attached to the disease. In this way society will change its views and feelings regarding leprosy and Health education accept the idea that patients should continue in their customary mode of life as far as possible. Another purpose of health education is to impress on every person the need to seek medical advice as soon as a suspicious lesion appears. These and other elements in the pro- gramme of education can be supplemented by lectures, articles in newspapers, talks on the radio, posters, pamphlets, booklets, film strips and other visual aids, devised in conjunction with health education experts familiar with local conditions. In the approach to patients, contacts, groups, and the general public, the personal touch of physicians and auxiliary personnel is an important element of the educational ef- fort—the objective being not only to provide information but also to inculcate a proper attitude. It is important that the education given should not cause fear of, or increase the prejudice against, leprosy. Care should be taken not to show pictures of advanced lepromatous cases or of deformities in patients with severe neurological lesions, as they could intensify the fear of leprosy and increase the prejudice against it. General principles Established health education principles are listed below: 1) Know the attitudes, beliefs, and behav- iour patterns of the group in which changes are desired. 2) Define clearly the subject areas to be considered, and the objectives and changes you hope to achieve. 3) Gain the confidence of the people, including health personnel, the community, interested agencies, and the patients. 4) Involve those who are affected by the problem in studying, defining, plan- ning, and working for a solution. If 63A Guide to Leprosy Control changes are desired in a village, for example, then the village people must be directly involved in planning and implementing the programme at the local level. 5) Set an example by your actions. People are observant and are influenced by what they see others doing. 6) Recognize the medical, social, and psychological needs of the patients, their families, and the community. 7) Begin your programme where the people are and work with them, perhaps starting on the problem that they fee] is most important and, from there, helping them to move on to other specific objectives that may be more directly related to leprosy. 8) Stimulate the people, patients, or community by concentrating on their interests and concerns. Start with what they want to know. 9) Be sure that the people are ready for changes before instituting them. 10) Make use of the powerful influence of the opinion leaders and of group interaction in the communities. It is of primary importance to work with, and through, individuals and organizations the people have confidence in. 11) Use language the people understand. If each statement is qualified people become confused. 12) Make use of the existing channels of communication. Take time to discover what these are, how information re- aches the people formally and in- formally. Never underestimate the value of face-to-face contact. The most convincing health education tool is demonstration that the treatment of patients is successful. 64Chapter 9 Training Introduction No health programme can hope to succeed unless the staff are adequately trained. Training must be a planned and organized part of the programme and should graft new knowledge and technology on to previous practices that are useful and beneficial. It is, in fact, the cornerstone of programme implementation. It should pre- pare each type of personnel to perform clearly-defined functions, activities and tasks. The training for different levels of staff must be flexible. Course content should be adapted to local needs and resources, and to the special social, cultural and environ- mental characteristics of the community. The key will be relevance to the health needs of the leprosy patient and the community, The training of each category of staff may vary in scope, duration and function, but the fundamental purpose is to prepare them for effective service, within the constraints and limitations of the available resources. Objectives Since the care of leprosy patients and the control of the disease will be part of the functions of a comprehensive health ser- vice, it is essential that adequate training in leprosy be included in the curricula of all health training institutions in countries where leprosy is endemic. The design of such courses should be based on the functions, activities, and tasks of the different categories of health personnel. ‘A very important activity in training is the definition of educational objectives, derived from job descriptions and task 65A Guide to Leprosy Control analysis. The use of these objectives. will ensure that the training is relevant to the job, and will make it possible to modify courses and to appraise or assess their effectiveness. The educational objectives and tasks of some important peripheral workers are listed below. Tasks of the community health worker At the end of training, the community health worker should be able to: 1) recognize the signs and symptoms of leprosy and refer suspected cases for diagnosis; 2) recognize complications of leprosy and refer cases for treatment; 3) keep a register of diagnosed patients; 4) teach patients to take treatment regu- larly and to practise self-care; 5) promote awareness of the signs and symptoms of leprosy among the community; and 6) collaborate with other community wor- kers and with the community itself in such a way as to promote understand- ing of leprosy and acceptance of leprosy patients. Tasks of the multipurpose worker At the end of training, the multipurpose worker should be able to: 1) diagnose and classify leprosy; 2) diagnose complications of leprosy: 3) classify deformities according to the WHO grading; 4) diagnose relapse; 5) undertake case-finding surveys; 6) administer leprosy treatment; 7) teach patients to take treatment regu- larly and to practise self-care; 8) recognize side-effects of drugs; 9) maintain records; 10) implement health education grammes; and 11) identify patients who are in need of social support. pro- Tasks of the laboratory technician At the end of training, the laboratory technician should be able to: 1) take and fix smears according to the required standard; 2) stain and read smears and report the bacterial index on the Ridley scale; 3) prepare all stains and solutions required by standard methods; 4) maintain the necessary registers and records. It is presumed that the laboratory technicians will already have the skills and equipment to prepare a haemogram, carry out urine examination for albumin, sugar and bile salts, sputum examination for acid-fast bacilli, etc. Tasks of the intermediate- level supervisor At the end of training, the supervisor should be able to: 1) diagnose and classify leprosy; 2) diagnose complications of leprosy; 3) classify deformities; 4) recognize relapse; 5) identify cases with possible drug re- sistance; 6) organize and plan case-finding surveys; 7) prescribe and administer antileprosy treatment; 8) prescribe and administer treatment for complications; 9) recognize patients suitable for surgery; 10) teach patients to take treatment regu- larly and practise self-care; 11) maintain and check records; 12) estimate the need for leprosy control and patient care activities; 6613) plan and implement leprosy control activities; 14) recognize organizational problems and identify bottlenecks; 15) plan and implement health education programmes; 16) identify services and people whose collaboration is desirable; 17) implement collaboration with other agencies; 18) determine training needs; 19) implement planned training; 20) collect, analyse and present data for evaluation; 21) plan and implement social support for patients; and 22) participate in research activities. Programme leader The programme leader in many cases will be a doctor who has the clinical and managerial competence to direct leprosy control operations in a particular health service region. In an integrated pro- gramme, he or she may be primarily a manager with responsibility for a number of different services. In a specialized programme, he or she is likely to combine clinical with managerial functions. The programme leader will also be responsible for ensuring that all the tasks previously mentioned are properly carried out by members of the health team. In addition to the tasks listed earlier the leader must be able to: 1) plan and formulate programmes; 2) evaluate and monitor programme im- plementation; 3) identify and define problems in health education: 4) define goals and evaluate their effective- ness; 5) determine training needs, set objectives for training, and plan, implement, and evaluate training courses. leprosy control Training The programme leader will be expected to give directions to the supervisors and, in addition, may be expected to advise state and national governments on strategies for leprosy control including planning, pro- gramming, and budgeting. He or she should also be able to plan and implement research projects that are relevant to the programme. Training strategy It is essential to strengthen leprosy training within the programme for general health staff. This can be facilitated by: a) adopting clear and relevant objectives for training; b) providing teachers competent to assist students in reaching these objectives; and ©) allocating appropriate teaching material Four practical steps which must be taken are as follows: 1) provide teaching staff in health training institutions with clear, relevant objec tives and train them to apply them properly; 2) provide appropriate teaching material and manuals; 3) arrange for in-service training in leprosy for key teachers; 4) employ leprosy control staff and clin- icians with expertise in leprosy as supplementary teachers and give them appropriate training in teaching meth- ods. Training resources There are four types of training resources that are useful in leprosy: 1) practical experience, e.g., clinical ex- amination of patients, field visits for surveys, etc.; 2) printed material; 67A Guide to Leprosy Control 3) audiovisual aids, slides, and film strips with printed or magnetic tape commen- taries; 4) film or video tapes. Teaching methods The objective of training students in leprosy is to produce health workers skilled in diagnosing and treating leprosy and in controlling the disease in the community. Skill may be defined as the practised ability to carry out a task. Knowledge alone, though important, is not sufficient; the trainee must also have the correct attitudes and the relevant practical and intellectual skills. Teaching can be undertaken through lectures, discussions in small groups, role- playing exercises, and practical demon- strations in the field. It is the responsibility of the teacher to ensure that time is not spent on irrelevant detail, and in this respect the learning objectives should be of great assistance. There are many ways of presenting knowledge and a skilful teacher uses a mixture of these in order to create an active, dynamic learning situation. It is essential that the knowledge imparted is presented clearly and is understood. Ensuring that knowledge is understood may be achieved by discussion, questions, and examination. Knowledge, however, is useless unless it is applied. The application of the knowl- edge imparted leads to the ability to do the job, i.e., practice leads to skill. An effective training course produces people who are competent to do the job they are expected to perform. The skills needed by a health worker in leprosy include: 1) practical skills, e.g., diagnosing leprosy; 2) communication skills, e.g., explaining to people about the disea: 3) intellectual skills, e.g., taking decisions. In a training course there must therefore be adequate time for field practice in order that the necessary skills can be developed. Working with experienced staff is a power- ful method of helping students to acquire skills. Ideally one or two trainees should work under the close supervision of an experienced health worker. Assessment It is important that students are assessed for job competence on completion of their training. A good assessment should: — test important skills, — be reliable, — help students to learn better, — meet the requirements of the course. There may be frequent assessments throughout the course or one final certi- fying examination at the end of the course. Duration of courses The duration of training courses to prepare general health workers to take part in leprosy control programmes will vary depending on the competence of the wor- kers. Provided that the necessary resources, such as skilled teachers, sufficient numbers of patients for practical work, teaching material, etc., are available, it should be possible to accomplish the training of general health workers at different levels, including medical officers, within a week or so. Content The course content will consist of theo- retical teaching, clinical demonstration and practical work. The principal subjects will depend upon the tasks of the different categories of workers as discussed earlier (see pages 66-67). Sufficient time should be given for free discussions during which the trainees should be encouraged to air their doubts. 68During at least half the available teaching time, trainces should be performing the various activities themselves. Training activities should be constantly kept under review. Tests taken before and after training have been found useful as a means of assessment. Refresher training Refresher training is necessary in the interests of continuing education of train- ees. Its purpose is to communicate new developments regarding leprosy and to enable staff to learn from their past experience. These occasions can also be used to inform the staff the results of programme evaluation. Programme manual A programme manual should be prepared for all the staff of the project. It should Training contain clear instructions on all the duties and activities in the project in precise, simple language. This manual should form the basis of instruction for the training and retraining of staff. Training of medical undergraduates and other professionals Ultimately, success in combating leprosy can only be achieved when the disease is given its rightful place in the curricula of medical colleges, nursing schools and other paramedical training institutions. If mod- ern chemotherapy is to be linked with adequate preventive measures, the man- agement and treatment of leprosy must be brought within the framework of the mainstream of medical sciences as quickly as possible. 63Chapter 10 Urban leprosy control Introduction In recent years leprosy has become an increasingly important problem in the urban areas of developing countries. Cer- tain special features of leprosy in the urban areas of some Asian countries are outlined below. 1) The prevalence and incidence of the disease are likely to be higher in slums and shanty towns than in rural areas. 2) There is a tendency for self-settled colonies of patients to spring up in certain urban areas. 3) The high density of the population leads to conditions of extreme overcrowding and intense squalor, environmental fac- tors that are conducive to disease transmission. 4) Population movements and migratory patterns result in high drop-out rates and premature cessation of chemother- apy. 5) Leprosy patients who migrate to cities often face intense social problems, in- cluding unemployment. In view of the special conditions and problems encountered in urban areas, there is a need for a specialized approach to urban leprosy control. Case-finding Case-finding in urban areas poses special public health problems. For socioeconomic Feasons it is more complex than in rural areas. Private practitioners have a key role to play in the dispensation of medical care to the community, and must therefore be brought within the scope of the leprosy control programme. Case-finding in this situation will include: 701) contact surveillance; 2) selective surveys directed to the examin- ation of schoolchildren, factory wor- kers, etc—the surveys should be poly- valent, covering a wide range of dis- eases, and should also include immuniz- ation; 3) mass surveys in slums and shanty towns, when practicable and acceptable to the community; 4) intensive health education in the community, with particular emphasis on use of the mass media; 5) education of other community workers, e.g. teachers, social workers, and community leaders; 6) seminars and meetings arranged espe- cially for private medical practitioners through medical societies and associ- ations—in some countries a high pro- portion of cases are referred to the health services by private doctors. Treatment delivery The relatively easy availability of cura- tive services in most urban areas, the good communication network, and efficient transport system are all positive factors suggesting that facilities for treatment of leprosy patients in urban areas should be more than adequate. The results achieved in practice indicate otherwise. The staff of general health institutions are often re- luctant to treat leprosy patients because of their already heavy workload. Efficient outpatient treatment centres must therefore be established, integrated with the municipal health services. All Urban leprosy control health centres should give leprosy patients the same consideration as other types of patients, treating them within an integrated framework. Special attention should be given to the establishment of outpatient centres in slums and shanty-towns, where other communicable diseases also tend to proliferate. The staff should be appropri- ately trained and oriented towards public health so that absentee follow-up and defaulter retrieval actions are initiated immediately if a patient fails to arrive for treatment. The clinic hours must be con- venient for the patients, many of whom may only be able to attend in the evenings after completing their work. The cooperation of dermatological cen- tres, dermatovenereological units and skin clinics must be sought, as many leprosy patients report to these institutions for relief of their symptoms. In urban areas many patients also seek treatment for their ailments from private medical practitioners. It is therefore necess- ary to establish a good rapport with these doctors. They should be informed about the revised strategy for leprosy control and the newer methods of treatment using combined chemotherapeutic regimes, pre- ferably through meetings and seminars conducted by local branches of medical associations. Their cooperation in report- ing cases must also be sought, and they should be assured that the information will be kept confidential. The services rendered by voluntary associations and organiza- tions should be coordinated within the programme, particularly in respect of re- habilitation, after-care and social assistance to patients and their families. 7Chapter 11 Social aspects and rehabilitation Social aspects The social dimensions of leprosy are often tragic and frequently hinder the successful implementation of leprosy control pro- grammes. Few other diseases cause such an intense reaction from the community and so much distress and unhappiness to patients and their families. The social implications of the disease are closely interwoven with the cultural tra- ditions of society. Every society considers health and disease, and life and death, in different ways and this influences the attitude taken by the community towards patients as a consequence of their illness. The social response to leprosy has very often been harsh and unsympathetic, the patient being rejected on the basis of a belief that the disease is a divine punish- ment and is, hence, incurable. The un- sightly deformities and the ulcerations that may occur only serve to heighten the repulsion. The adverse reactions of the community tend to devalue the status of patients. This manifests itself by fear, insecurity and withdrawal and frequently leads to deviant behaviour which hinders leprosy control activities. Ignorance, lack of faith in treatment, and loss of wages while attend- ing clinics in marginal societies further aggravate the situation. Very often leprosy patients find it difficult to earn a living. This may be the end result of progressive deformities, but more often it is caused by the employers’ exaggerated fears regarding the disease. Unemployment, crippling de- formities, and social ostracism may finally 72lead to alcoholism, begging and a hostile attitude towards society. In certain countries, special legislation against leprosy still exists, which tends to perpetuate the social prejudice against the disease. Rehabilitation The International classification of impair- ments, disabilities, and handicaps (17) con- tains the following definitions: 1) Impairment —any loss or abnormality of psychological, physiological or ana- tomical structure or function. 2) Disability —any restriction or lack (re- sulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being. 3) Handicap—a disadvantage for a given individual, resulting from an impair- ment or a disability, that limits or prevents the fulfilment of a role that is normal for that individual. Rehabilitation and reintegration of pa- tients in society can only be achieved by the sustained efforts of the patients, the health care staff, and society as a whole. It is necessary to make the most of the patients’ abilities rather than focusing on their disabil This can be achieved more effectively through a community- based approach than through the tra- ditional institution-based approach, which is not only highly expensive but often inappropriate in a local setting. Community-based rehabilitation Community-based rehabilitation is fully consonant with the concept of primary health care. This approach: Social aspects and rehabilitation — promotes awareness, self-reliance, and responsibility for rehabilitation within the community; — builds on manpower resources in the community, including the disabled them- selves, their families and other com- munity members; the disabled and their family members are called upon to take an active part in training efforts; encourages the use of simple methods and techniques that are acceptable, affordable, effective, and appropriate to the local setting; — uses the existing organization and in- frastructure to deliver services; — takes into consideration the economic resources of the country and allows for an eventual extension to provide total coverage, according to perceived needs. In this approach the families are given the responsibility of training the disabled member and assisting with self-training. A local supervisor selected from the com- munity guides this training. Finally the patients are reintegrated into society. In some cases referral to facilities at a higher level may be required. The following points should be empha- sized: 1) Early diagnosis and treatment are of the utmost importance and will prevent the development of deformities. 2) Rehabilitation should take place in the environment in which the patient lives, which might require some adaptation of the home. 3) Priority should be given to the preven- tion of disabilities by simple methods with emphasis on self-care, i.c., what the patients can do themselves to control the disability. 4) Leprosy workers should receive ad- equate training in the prevention of deformities. 5) Health education should form an im- portant component in rehabilitation. 73Chapter 12 Evaluation General principles The purpose of evaluation is to improve health programmes and the infrastructure for delivering them, and to guide the allocation of resources in current and future programmes. It is a continuous process aimed at rendering health activities more relevant, more efficient, and more effective. It is a decision-oriented managerial tool and must therefore be linked closely with decision-making, be it at the operational or at the policy level. Evaluation requires: ~ well-defined quantitative and qualitative objectives; milestones or targets; sensitive indicators; and — a well designed information support system. Measurement of leprosy and its control In order to plan leprosy control pro- grammes, to evaluate such programmes, and to compare results between different times and places, it is necessary to select appropriate indicators. It is important that these indicators can be easily used, are clear enough to be accepted as true measures of the variable they are supposed to measure, and are sensitive enough to detect important differences between differ- ent signals for action by programme managers. The selection of indicators appropriate for leprosy work is not always straightfor- ward. There is considerable variation in the quality and quantity of data available in different parts of the world. In this section, 74guidelines are proposed for upgrading these data in general and increasing their use in the monitoring of leprosy control programmes. These guidelines recommend a conceptual division of indicators into those that are basically “epidemiological” and those that are basically “operational”. In addition, three lists are provided for each set of indicators: two short or basic lists (see Tables 6 and 7) including one on monitoring multidrug therapy that should be within the capabilities of health services in most areas where leprosy is endemic, and an extended list (see Table 8) including additional measures that may be feasible for programmes with well developed in- formation systems. It should be pointed out that the distinction between epidemiological and operational indicators is to some extent artificial. The aim of using epidemiological indicators is to measure the patterns and dynamics of leprosy in human communi- ties, and to evaluate the long-term effec- tiveness of control measures. The use of operational indicators is primarily mana- gerial in character, ie, to monitor the functioning of ongoing control activities in the field. General considerations Leprosy case information It is important that the criteria for identify- ing a leprosy case are as valid, unambigu- ‘ous, and reproducible as possible. Actual criteria may vary in different areas ac- cording to the type and training of the staff making the diagnoses, but quality control of actual diagnostic practices at the periphery should always be carried out by experienced staff. If data are to be compared between different areas and different occasions it is important that the diagnostic criteria used are explicitly described. The diagnostic criteria used for leprosy around the world will, therefore, have to be standardized. Epidemiological measures of leprosy will Evaluation often need to be subdivided according to such variables as time and mode of detection, or case status (active, inactive, registered, lost to follow-up, discharged, ctc.), in addition to age, sex, clinical type, and location. This information should be collected for all patients at the most peripheral level, for example, using the OMSLEP individual patient form (see page 56 and Annex 6). The information represented by actual numbers of, for instance, registered cases or patients under multidrug therapy, etc., will be of value for programme planning and evaluation As a minimal classification scheme, which is feasible in most health care systems, cases should be operationally classified as paucibacillary or multibacil- lary, as defined on page 27. Population information The population to which a given statistic refers should always be clearly defined. It should be quantified (number of individ- uals) and not just described, for example, as “rural population”, and it should be clear whether the population refers to enumerated persons, to those actually examined, to an estimate drawn from a past census, or to an estimate corrected for population change. Whenever possible, statistics should refer either to total popu- lations (of an area, of a town, of a particular age group) or to statistically representative samples of that population. Statistics based on unrepresentative sec- tions of population should be uscd with great caution since they may be strongly biased. Epidemiological indicators The standard measures of disease occur- rence are prevalence and incidence. Prevalence Prevalence is the number of cases of a particular disease in a defined population 75A Guide to Leprosy Control “Aunnoe J2\nonWed oyy 10) IUEAd}91 10U st JOLeDIPUL By) Te) sue! ULWN\OD siyy ul Anua Ue 40 souasqy wWenodw) AieA= ++ aUeHOdUI=+ , Auee peiaiep ie seseo j1 Mo} eq Pinoys souspiou! slewrxoidde 0} 8121 UONDeIep-esed jo AUANISUS sIDaYo1 Ose SOIIWIOJeP YRIM AsoIde| seseo peloaiep Ajmeu Buowe JO @1@1 Uonosiep-aseo spjaiA ‘(¢) yum pauiquiod — ++ + PalqesIp Jo uonodoid (9) eouspiou! ejewlxoidde 0} 9121 Uono@Iep-aseo Jo AyAINsUES s9e]e1 OSje — uaipliyo Buowe Asoide 40 e181 uonosiep-eseo spjeiA “(E) WIM pauiquios - sese0 pelveiep A\mou uoneindod pjiyo Buowe senianse uono@ep-aseo Buowe (sieeA 1-0) JO Ayisuaiul Jo 4xe1U09 U} paiepisuoD oq IsnW — ++ ++ ueipliya yo uoruodoig (g) eouapioul eyewixoidde 01 ee uonoerep-aseo yo AyAlsuas sioaye1 ose — saseo poisiep Ajmau Asoida) Aveij!9eqninut Buowe suo} Areitoeq JO @121 UoNosIep-aseo spjaiA ‘(E) YUM pauIquoD — ++ ++ nn 40 wo;odorg (p) senianoe uonoeiep 9829 poo6 jo pilose Bud] e yum souuesBod ul eouspioul jo uoneWixoidde se inyesn — 420k yore 40} saseo peieisiBe1 Aymau Jo saquinu uo paseq — ++ ++ aie) uonserep-aseo je10) (¢) paleyu! Ajsnoles ae selewNse yeYL 10 ‘uonejndod 40 @Be19A09 100d says Aldi Aews AKo] 4) ~ Aanins 9\duies uo paseq 1seq si saseo pelewinse yo sequinu — seseo perewnse Buowe Jena} jeuoneu te inyasn Auejnonied — ++ + paieisi6e1 uonodord (Zz) uonentens pue Gulyueld wt injesn end eq ued soreuJWoUep uoneindod ay1 inoyum ane (seseo peseisiBo. JO Jaquinu je10) ay) “8'!) sjest! soLev.WNU ay — seseo poseisiGe! soeoipu! pasn Ajuowwioa sow ~ ++ ++ jo eauajenaid ye104 (1) stuewwog dn mojjoy pue uonseiep leo1Bojonwepidg soveo1puy sep, uoneledo SadlMas Yreey IsoW 4O sa;qyy jedeo ay2 UI4WIM sioyesIpu! jeNUAsse jo IsUOYs y “9 eIqgeL 76Evaluation Table 7. A shortlist of essential indicators for monitoring multidrug therapy Indicator Operational— Comments treatment and follow up* (7) Proportion of ++ — will include all multibacillary patients on registered multibacillary multidrug therapy, regular or irregular cases on multidrug therapy (8) Proportion of ++ — definition of regular multidrug therapy is based multibacillary cases (on a minimum intake of 3 of treatment on regular multidrug recommended, i.e., supervised intake of therapy during any monthly doses and collection of drugs for year daily self-administration (9) Proportion completing = + + ~ as definition of regular treatment in multidrug therapy paucibacillary leprosy is based on completing among paucibacillary the 6-month course within 9 months, this cases expected to proportion will refer to patients who are complete entered on the register in the first 3 months of ‘the year (10) Clinical surveillance ++ ~ clinical surveillance after completion of rate for multibacillary treatment is expected to be carried out cases annually for a minimum period of 5 years; the rate is calculated annually (11) Bacteriologicat ++ bacteriological surveillance after completion of surveillance rate for treatment is expected to be carried out multibacillary cases annually for a minimum period of 5 years; the rate is calculated annually (12) Clinical surveillance ++ ~ clinical surveillance after completion of rate for paucibacillary treatment is expected to be carried out cases annually for a minimum of 2 years; the rate is calculated annually (13) Relapse rate ee relapse here would cover all reappearance of disease after completion of treatment; the annual rate of relapse can be calculated separately for surveillance and postsurveillance periods 4 + = very important at a specified time. For prevalence to be interpretable, the criteria for diagnosis, the population, and the time must always be specified. If ascertainment of disease is not thorough, then the number of cases re- corded may be a serious underestimate of the true prevalence. On the other hand, it is possible that leprosy is overdiagnosed in some populations and that the reported prevalence in fact exceeds the actual number of cases. Prevalence statistics often refer to the number of registered cases. As such, this number may be greatly influenced by past and present policies for maintaining regi ters. In particular, patients who have been cured, who have moved away from the population in question, or who have died, should be removed from the register. Those responsible for the organization and main- tenance of registers should ensure that appropriate procedures exist to facilitate such removals and that the registers are regularly updated. Simple numerical prevalence provides a straightforward measure of case-load and Eta‘9 eqeL ur peysy, ate (9)-(1) siored!pUL ‘Ayanoe sejnonied oy) 105 qUene/a1 10U st JO\eOIPUL a\R 16\R SUEOW UUINjoD SIY UI ANUB Ue JO eauesay UeLIOdW! 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Jo IS!) PapUsIX, “g eIGeLis useful in the planning of treatment services. The distribution of cases may be analysed according to age, sex, clinical type, or other variables in order to reveal patterns of leprosy in greater detail. How- ever, in order to compare prevalence at different times or in different places, it is generally necessary to express the data as proportions (rates), i.¢., the number of cases of disease at a specified time divided by the population in which these cases occur. It is conventional for prevalence of leprosy to be expressed as the number of cases per 1000 population. It is essential that the numerator (cases) and denominator (population) figures refer to the same population. If they relate to all cases in the total population in a given area, the measure is called the total prevalence. It is often useful to calculate prevalence for different subgroups of a population, eg. by age, sex, ethnic group, or geo- graphical area. These are called “specific” rates. For example, an age-sex specific prevalence could be calculated by dividing the number of registered cases among males aged 20-24 years in a defined population, at a specified time, by the total number of males aged 20-24 years in the same population, at that time. Though specific prevalences are useful and may reflect important patterns and trends in a population, they must be interpreted with caution. They may be greatly influenced by differences in in- cidence, case detection, migration, or sur- vival. Thus school surveys may tend to reveal a disproportionate number of cases among the population of school age. Social taboos against the examination of women will also affect the apparent sex-specific prevalence. The fact that leprosy is not uniformly distributed within most populations in which it is endemic should be considered when such statistics are derived and inter- preted. It is not uncommon for prevalence to vary by a factor of up to 100 between Evaluation different areas or subgroups within a population. These variations must be con- sidered during the design and interpret- ation of sample surveys to estimate leprosy prevalence. It should be possible for health services to provide statistics on total number of cases and prevalence per 1000 population for registered cases in any endemic area Some countries may be able to provide estimates of total prevalence based on extrapolation from sample surveys carried out in the recent past. Incidence Incidence is the number of new cases of a particular disease that occur in a defined population during a specified period of time. The time period used is convention- ally one year, but it may be longer (e.g., 5 years). In order to compare incidence over time or between areas, it should be expressed as a proportion or rate relative to the population in which the new cases occur. As with measures of prevalence, in- cidence is often calculated separately for different subgroups of a population, e.g., by age, sex, or frequency of household contact. It is generally expressed per 1000 persons in the population to which the rate refers. Measures of leprosy incidence are clearly of great value because they reflect the current risk of developing leprosy within the specified population and the transmis- sion pattern of M. leprae in the population during previous years. Since the purpose of control programmes is to prevent disease, their aim must be to reduce incidence. Thus, incidence statistics are more useful in monitoring the success of a control pro- gramme than are prevalence statistics. Despite their value, measures of leprosy incidence are difficult to obtain, The number of newly detected or registered cases is frequently used as an estimate of incidence. It should be noted that these figures may seriously misrepresent the 79A Guide to Leprosy Control actual incidence of the disease because many cases may not be recognized for some years after clinical onset. In theory it should be possible to improve the estimates of incidence by collecting information on the date of clinical onset from all patients. However, in practice it has generally been found very difficult to obtain valid esti- mates of onset date, and thus such corrections are not encouraged. Since case-detection rates are used as estimates of incidence, it is important to recognize that these measures will be greatly influenced by the type and intensity of case-detection activities. In patticular, contact-tracing or school surveys may yield relatively large numbers of “new” cases. If such surveys are carried out irregularly, this may have an important effect on the estimates of incidence during a given period. In addition, it should be noted that the case-detection rate derived from an initial survey of any population is in fact a measure of prevalence and not of cidence. For this reason any presentation of case-detection rates should include a description of the methods used for case- finding. If these case-detection rates are compared, consideration should be given to the extent to which the methods of case detection may have differed between the times or places being compared. It may be useful to calculate detection rates sep- arately according to different methods of ascertainment (self-reporting, school sur- veys, contact surveys, etc.). When an active case-detection procedure is used, the denominator of the case- detection rate formula is the number of persons actually examined. When a passive case-detection method is used alone, or in combination with an active detection pro- cedure, the denominator of the case- detection rate formula is an estimate of the population (¢.g., at mid-year) from which the cases were derived. If incidence is based on repeated exami- nation of a population, it is best to express the denominator in terms of the total number of person-years of follow-up for all individuals examined at least twice. This is a difficult procedure requiring careful data processing, and is not suitable for routine data collected in control programmes. It should be feasible for most leprosy control programmes to provide estimates of incidence in the form of case-detection rates. These should be calculated on an annual or S-yearly basis and expressed separately by age for at least two groups—below 15 years and 15 years or above. It is also useful to group them separately by clinical type (paucibacillary or multibacillary) and by presence or absence of deformities (grades 2 and 3 on the WHO scale—see Annex 2). Whenever possible they should also be grouped according to the method of case detection. The source of the denominator figure (e.g., corrected or uncorrected census estimate, or survey enumeration) should be clearly stated. The relationship between prevalence and incidence The total number of cases of leprosy in any community at any one time reflects a balance between the emergence of new cases, and the loss of cases through recovery, death, or emigration from the community. If the population structure, incidence, recovery rates, and death rates were all to remain constant, then the disease prevalence would stabilize at a level numerically equivalent to the product of the incidence and the mean duration of the disease. Although this relationship is not strictly valid if the parameters change over time, it may still be useful as a rough guideline in some circumstances to check the consis- tency of incidence and prevalence data. The fact that a proportion of cases recover may affect estimates of the in- cidence of leprosy. In a given population, case-finding surveys conducted at short intervals will reveal a higher proportion of 80