INTERNATIONAL LEPROSY CONGRESS Session: Operational issues including management of patients. Topic: Case definition and detection
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1 INTERNATIONAL LEPROSY CONGRESS 2008 Session: Operational issues including management of patients Topic: Case definition and detection H Joseph Kawuma GLRA, Uganda Outline 1. Introduction 2. Case definition 3. Case detection 4. Summary 1
2 Introduction The goal of the Global Strategy for further reducing the leprosy burden and sustaining leprosy control activities ( ) is: TO PROVIDE QUALITY LEPROSY SERVICES FOR ALL AFFECTED COMMUNITIES. Introduction quality leprosy services -accessible to all who need - are patient centred, observing the right to timely and appropriate treatment and privacy and confidentiality. - address each aspect of case management including diagnosis which is timely and accurate. 2
3 Case definition Case definition of leprosy has evolved to simpler forms over time. Simple case definition does not mean that leprosy diagnosis is always simple; It should be simple enough to prompt referral of unclear cases. Case definition A case of leprosy: a person with clinical signs of leprosy who requires chemotherapy (MDT) Clinical signs: All subjective to some extent. a. Definite loss of sensation in a skin patch (dependent on clinician s knowledge and skills, the technique and the patient) 3
4 Case definition b. Thickened or enlarged peripheral nerves with loss of sensation and/or weakness of muscles supplied by that nerve. -requires experience - experience gained through training - experienced and skilled trainers required. Case definition c. Presence of acid fast bacilli in slit skin smear. - Skin smear services now given low priority yet in some cases, the only conclusive sign of the disease in potentially infectious cases. - Required:. agreement on who takes the decision to have a s.s examination done. 4
5 Case definition. Who takes the smears and where? Not EVERY TB microscopy centre!!. Who examines the smears? (Guidelines for taking and examining available fromilep.) - S S have weaknesses e.g. poor concordance with histopathological examinations (Khan et al, 2004) - Quality assurance at least at country level to be instituted if S S used. Case definition The starting point for defining case is SUSPECTING. Suspect in: -pale reddish skin patches or other lesions like swellings or lumps in the face. -abnormal sensations (tingling, numbness) -weakness -painless wounds or burns of the hands or feet. 5
6 Case definition Who should suspect or should be enabled to suspect? Community Family Known cases Health workers (from most peripheral to seniors ) Special groups e.g. school children Case definition Example of innovative ways: G. Norman et al (2004) Student leaders encourage peers with symptoms to report. Found 14 new cases (6/10,000) among 2,200 suspects defined by fellow students. May be useful where leprosy is endemic in resource limited settings. 6
7 Case definition The decision: What is the action to take after suspecting? = either diagnosis, referral or wait-and-see. Who should diagnose? To be defined at country level. The referral system: Define the country-specific referral system and inform other service providers and patients. Example of challenges: O. Faye et al, 2005 in Mali. Importance of helping those who would be involved distinguishing true cases from other hypochromic disorders. Case definition How to help those responsible for diagnosis: P. Saunderson...it will become more difficult for people with leprosy to access expert and timely care for both initial diagnosis and Offers options for facing the challenge: e.g.-training and training including OJT during supervision. - using pool of retired staff as service providers and trainers - making learning more accessible using new technology. Add: - Strengthening of basic dermatological services 7
8 Case definition Measures to ensure accuracy of leprosy diagnosis: a. Adhere to criteria for case definition b. Good training about leprosy diagnosis for health workers c. Regular and effective supervision d. Clear lines of referral for suspected cases e. Availability of appropriate training and referral materials Case definition Supervision: to look out for over-diagnosis, review sample of new cases (within 3 months); might it be too late? The proportion of patients that are correctly diagnosed : can be a programme tool for monitoring the quality of diagnosis 8
9 Case detection = Systematic search for cases Case detection: Active or voluntary Active: not recommended except in hard to reach areas with inadequate infrastructure Voluntary: people with suspect symptoms report (self referral) Case detection Timely (Early): (just turned leprosy and without consequences) Why? Give MDT early and cure Prevent irreversible nerve damage Reduce transmission (still don t know the earliest stage at which transmission might occur) Epidemiologic monitoring: the earlier the case detection the better CDR as proxy of incidence Programme management (Political) reasons: Case detection provides basis for CDR. In which direction should CDR go in a well- performing programme in 2008? 9
10 Case detection Interpretation of CDR trends: Small or even decreasing number of cases (detected early);? Cases do not exist? Not enough done to detect them (missed altogether or seen but false negatives (under diagnosis) Large numbers of new cases:? Hard work? Not enough done to control spread IN THE PAST or seen but false positives (over diagnosis) Case detection Stable numbers:? Controlled detection (job security: is this still an issue?)? Too early to see the change it is a matter of time and if so what will happen later, upward or downward trend?? Manager and supporting scientists are stuck, have run out of ideas. 10
11 Case detection Is it possible to decide what we want? More new cases Less new cases Stable trend? Same every year No new cases Lessons: Abraham Meima et al (2004) TRENDS SINCE 1985 There is no general decline in case detection Endemicity levels for combinations of countries should not be summarised as one cumulative indicator Case detection Trends in the transmission and incidence of leprosy are still completely unclear Trends in CDRs reflect trends in incidence rates provided: no significant changes occur in case detection efforts, self reporting behaviour, or diagnostic procedures and criteria CDR is more informative than case detection for comparing time trends by country because CDR also indicated endemicity levels BUT 11
12 Case detection In growing populations, annual case detection may increase substantially with time while the CDR is stable! since Case detection= CDR X population size. Case detection Measures to promote voluntary case finding: A. Integration: among others, expected to improve access to health services. Attendance at nearest clinic is associated with reduced delay. BUT Effectiveness of integration is dependent on other factors e.g. level of awareness of leprosy, effective arrangements for referral, the sensitivity to the impact of leprosy on those affected etc (see B and C below) 12
13 Case detection B. Increase awareness of early symptoms and signs among the general public. Case detection C.. Remove barriers which prevent people from reporting for examination. Establish local factors contributing to delay in diagnosis. e.g PG Nicholls et al, N. India and Bangladesh, 2005 Some known common barriers: 1. Lack of awareness (leprosy is treatable, treatment free, treatment available locally 2. Fear: of the diagnosis, future deformity, being exposed, implications for the family. 13
14 Case detection 3. Other disadvantages: Gender, ethnic background, poverty. 4. Physical barriers: Mountains, rivers, distance, low health service coverage. 5. Security War or civil unrest Case detection Examples of ways of overcoming barriers: - see Operational Guidelines. a. Providing factual information about leprosy. b. Portraying a positive image of leprosy c. Removing negative attitudes, structures and arrangements in health services d. Making flexible arrangements for diagnosis and treatment. 14
15 Summary Case definition of leprosy has evolved with increasing simplicity over time. Simplifying the case definition does not imply solving the complexities of diagnosing some leprosy cases; a well organised referral system, experts and better tools will continue to be needed. Adhering to the case definition is an essential component of quality services; routine programme management indicators should include one for monitoring the accuracy of diagnosis. Summary Diagnosis is often made after suspected cases have been convinced to present themselves for examination. All possible opportunities for increasing level of suspicion should be exploited. The reasons why case detection should be timely are still valid even under low endemic situations. The realistic and honest interpretation of case detection trends adds value to the case detection numbers. 15
16 Summary Integration of leprosy services into general health services improves chances for early case detection but will only be effective when other related factors e.g. lack of awareness in the community and among health workers, are addressed. Barriers to this process (causes of delay) vary in different situations and must be investigated and taken into account while planning case finding activities Voluntary rather than active case finding is recommended except in special situations. Summary Doyle Even though cases will be harder to find, we must continue to find diagnose and treat every case we possibly can Take advantage of the new technologies and find more appropriate tools for diagnosis that is timely and accurate. 16
17 Thank you for your attention 17
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