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About AAA
Arkangelo Ali Association-SUDAN is an Indigenous NGO registered under SSRRC and Ministry of Legal Affairs. AAA was founded in November 2006. Its roots are in the health department of the Diocese of Rumbek, where Mrs Natalina Sala and
Dr Minani Callixte started working in 1997 in South Sudan. The decision to transform the health department into an NGO was taken at the end of the war when reconstruction in Southern Sudan began in order to enlarge the area of operation and expand the services.
Internationally AAA is a founder member of Bakhita Consortium along with 7 other Italian, Kenyan and Sudanese NGOs/Association that works for the development of Sudan.
Mission
AAA,s mission is to uplift dignity of disadvantage people through provision of social services with respect of transparency, quality, equity, availability and accessibility.
Vision
AAA believes in human dignity
AIM
AAA overall goal is to improve the quality of life of the people of Sudan by reducing human suffering and improving their social economic status. www.arkangelo.org
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Introduction
Leprosy is caused by a slow-growing bacillus, Mycobacterium leprae. It is transmitted via droplets from the nose and mouth of untreated patients with severe disease, but is not highly infectious. If left untreated, the disease can cause nerve damage, leading to muscle weakness and atrophy, and permanent disabilities.
Leprosy can be easily treated with a 6–12-month course of multi-drug therapy.
The treatment is highly effective, and has few side-effects and low relapse rates; there is no known drug resistance.
Based on official data from Ministries of Health in endemic countries, global annual detection has shown a declining trend since 2001, falling by over 110,000 cases (27%) during 2005 compared to the new cases reported during the year
2004.
Countries in the all the regions are reporting a wide range of MB proportion among the newly detected cases. In the African Region, it ranges from 23% in
Comoros to 92% in Kenya and in the American Region from 36% in Bolivia to 83% in Cuba. The Eastern Mediterranean Region has a range of 58% in Yemen to 92% in Sudan. South-East Asia Region is reporting 38% in Bangladesh to 79% in
Indonesia and the Western Pacific Region is reporting 30% in Federated States of
Micronesia to 94% in the Philippines.
The female proportion among the newly detected cases in the African Region ranges from 21% in Chad to 60% in the Central African Republic. In the
American Region, it ranges from 34% in Venezuela to 50% in Dominican
Republic, South-East Asia Region from 21% in Timor Leste to 42% in Bangladesh,
Eastern Mediterranean Region from 28% in Sudan to 39% in Pakistan and in the
Western Pacific Region from 28% in Cambodia to 36% in Federated States of
Micronesia.
A wide variation is seen regarding the child proportion among newly detected cases especially in African, American and Western Pacific Regions. The child proportion in the African Region ranges from 3% in Kenya to 39% in Comoros and in the American Region from 1% in Argentina to 16% in Dominican Republic.
In the Western Pacific Region it ranges from 2.1% in China to 32% in the
Federated States of Micronesia. However, less variation was observed in the
South-East Asia and Eastern Mediterranean Regions with Thailand reporting 5%,
Sri Lanka 11%, Pakistan 4% and Yemen 11%.
Similarly, the grade 2 disabilities among the newly detected cases show a wide variation in all the Regions. In the African Region, it ranges from 3% in Comoros
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to 21% in Benin and in the American Region from 2% in Argentina to 11% in
Mexico. In the South East Asian Region, it varies from 2% in India to Timor Leste
21%. In the Western Pacific Region, Federated States of Micronesia is reporting
1% grade 2 disabilities among new cases and China 21%.
The first link below shows new case detection trends in two tables. The first shows trends in each of the WHO regions (excluding Europe) over the period 2001 to
2005. The second table shows new case detection trends in the seventeen most endemic countries during the years 1993 and 2002-2005. These seventeen countries take together represent about 94% of the global new case detection.
Table 1: Registered prevalence of leprosy and number of new cases detected in 141 countries or territories, by WHO region, 2009 and end of first quarter 2010:
WHO region: No. of cases registered and
prevalence rate (%), first quarter
No. of new cases detected
and case-detection rate
African
2010 –
30 947 (0.40)
2009 –
28 935 (3.75)
Americas
South-East Asia
43 370 (0.49)
120 456 (0.68)
Eastern Mediterranean 8 495 (0.15) 4 029
Western Pacific 8 635 (0.05)
40 474 (4.58)
166 115 (9.39)
4 029 (0.70)
5 243 (0.29)
Total 211 903 244 796
Table 2 Trends in the detection of new cases of leprosy, by WHO region, 2003–2009:
Number of new cases detected :
WHO region
African
2003 2004 2005 2006 2007 2008 2009
47 006 46 918 45 179 34 480 34 468 29 814 28 935
America
South-East Asia
52 662 41 952 47 612 42 135 41 891 40 474
405 147 298603 201635 174118 171576 167505 166 115
Eastern Mediterranean
Western Pacific
Total
3 940
6 190
514 718
3 392
6 216
407 791
3 133
7 137
299 036
3 261
6 190
265661
4 091
5 863
258133
3 938
5 859
249007
4 029
5 243
244796
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The two maps below show the disease prevalence rates in 2007 & 2009.
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SOUTHERN SUDAN SITUATION ANALYSIS
Southern Sudan is one of the post conflict countries in the African region that suffered for long due to civil war spanning over 20 years. It made an already bad situation in the country worse. After the signing of the CPA in 2005 the situation in Southern Sudan has tremendously improved. The armed conflict had led to the deterioration in the socio-economic status, education, agricultural activities, health & other infrastructural development.
Southern Sudan measures around 650,000 square kilometers with a population of approximately 8 million people. Over 90 % of the total population lives in rural setting where health & education facilities are completely inadequate.
The rural population depends mainly on crop cattle keeping, farming and fishing for their daily lively hood.
Over 90 % of the population earns less than 1 USD per day , The life expectancy at birth is 42 years, while infant and under 5 mortality rate is 150/ 1000 live births ,
250 deaths/ 1000 live births. Mortality rate in children under the age of 5 years contribute to 57% of total deaths in the country.
The country’s topography is flat dotted with a few hills. The great River Nile passes from southern part of the country and heads to the north. The climate in summer witnesses soaring temperatures of up to 45 degrees centigrade, which may last for half of the year. For the other half, the country experiences rainy season which leads to flooding and some roads are cut off making road transport extremely difficult
Leprosy situation in Southern Sudan is not exactly known. According to a WHO
2008 report, leprosy prevalence is estimated to be 4 / 10,000 population. In the year 2008
1,193 new leprosy cases were registered. Approximately 80 % of them were grouped as MB cases. About 10 % of the newly diagnosed cases were children, with a quarter of them having visible disability at the time of diagnosis.
Currently there are about 24 locations/ health facilities in Southern Sudan which care for people affected by leprosy.
3/ 4 of the health facilities are managed by NGOs & 1/4 of them managed by the GoSS (Government of Southern Sudan).Under the guidance of GoSS –MoH there are focal persons at the Central level, National guideline, recoding & reporting system are well established. The health facilities are adequately supplied with MDT drug.
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Arkangelo Ali Association - Sudan being a local NGO committed to Leprosy
Control in Southern Sudan is operating in 8 locations as shown on following map.
Number of new cases registered from 2007-2010 in AAA locations
YEAR MBA MBC PBA PBC
2007
2008
2009
2010
TOTAL
438
324
579
580
1921
12
25
30
21
88
57
72
127
129
385
4
8
15
27
54
TOTAL
511
429
751
757
2448
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Number of cases with grade 2 disability from 2007-2010 in AAA locations
YEAR
2007
2008
2009
2010
TOTAL
MBA
150
161
183
134
628
MBC
2
2
5
1
10
PBA
0
7
0
0
7
PBC
0
0
0
0
0
TOTAL
152
170
188
135
645
1] To retrain / train staff to accurately record & report all data in all data sheets, registers, and to compile quarterly, annual data sheets, forms, reports.
2] To update & cleanup the existing patients record cards, treatment registers with accurate leprosy diagnosis, classification, multi drugs treatment with monthly regular follow up through CHWs at the community level, do contact tracing and outreach activity.
3] To actively mobilize the communities through PALs, media, community leaders, religious, women, youths & sports groups to sensitize about leprosy & integrate available health services,
4] To improve regular monitoring & supervision of the program through the central team,
5] To identify new leprosy cases, cases of neuritis early & effectively treat, prevent developing new disabilities by doing nerve functions assessment and recoding the findings,
6] To improve/ activate referral mechanisms between the field program & health facilities where cases can be admitted to get specialized care,
7] To introduce hospital based self care for eyes, hands, feet, skin and wounds,
8] To continue providing care after cure to all PALs,
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9] To provide physical rehabilitation in collaboration with AMREF and socioeconomic rehabilitation with local agents [e.g. ministries of agriculture, fisheries and the like].
10] To incorporate Leprosy & care for primary skin diseases with all health facilities
11] Research in leprosy (relapse cases/ neuritis)
1] To retrain / train staff to accurately record & report all data in all data sheets, registers, and to compile quarterly, annual data sheets, forms and reports.
Objective: To retrain & train all AAA health workers to accurately record and report leprosy statistical information.
Targets:
To accurately collect data from all clients,
To accurately record data in all data sheets,
To accurately transfer all data recoded to quarterly/ annual report forms.
Strategies:
To introduce GoSS-MoH Leprosy Treatment Cards, Leprosy Register, Leprosy record
Card, Leprosy Contact register, Leprosy quarterly report & ILEP forms,
To update, correct current documents by reviewing, reassessing all registered patients,
To provide 1 or 2 days (8 to16 hours) retraining, training to all AAA staff who are responsible for data collection, data transfer and data compilation
2] To update & cleanup the existing patients record cards, treatment registers with accurate leprosy diagnosis, classification, multi drugs treatment with monthly regular follow up through CHWs at the community level and do contact tracing.
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Objective: All health workers will be able to accurately clinically examine, diagnose, classify & prescribe MDT.
All CHWs will be able to follow up MDT at the community level and passively do contact survey.
Targets:
To make 100% accurate clinical diagnosis of Leprosy,
To correctly classify all diagnosed leprosy cases,
To prescribe 100% accurate MDT regimens to all cases & supervise monthly treatment,
To do passive contact survey at least 90% of all leprosy cases contacts once a year.
Strategies:
To continue to train all health workers on the job to diagnose, classify, prescribe
MDT regimen by using Southern Sudan National Leprosy guidelines,
To support and supervise all CHWs to do passive contact survey & outreach activities.
3] To actively mobilize the communities through PALs, media, community leaders, religious, women, youths & sports groups to sensitize about leprosy & to engage all health care providers to integrate leprosy in to general health services.
Objective: To actively mobilize the community through all target groups to sensitize the community & to engage all health care providers in leprosy control to integrate the program with general health care.
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Targets:
All People affected by leprosy,
All Community leaders,
All Religious leaders,
All Women groups,
All Youths & Sports group,
All health care providers,
All Media groups.
Strategies:
To empower PALs in the fight against leprosy by advocacy, communication & social mobilization, and by demonstrating with examples of treatment out come without disabilities,
To do anti leprosy campaign with community activities within the community on regular basis by involving all leaders and groupings,
To use media, different media approaches (e.g. debate and drama) through
PALs, community, Churches and sports/foot ball association.
To engage all health care providers, through education, providing material support and supervision.
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4] To improve regular monitoring & supervision of leprosy program:
Objective: To directly monitor & supervise at least 50 % of the annually planned activities.
Targets:
All staff handling leprosy activities,
All leprosy records & reports,
All CHWs & Community mobilization activities,
50% supervisory visits from HQ,
90% neuritis care, management in the field, referral centre,
All referred cases,
All PALs hospitalized for care & PALs remaining at the settlements,
All registered PALs for care after cure,
PALs indicated for Physical & Socio-economic rehabilitation,
Strategies:
To keep monitoring the staff performance through their schedule & performance,
To inspect the records and registers at least once every quarter to validate recorded data,
To follow up community mobilization & new case detection rate,
To follow the supervisor’s supervisory visits as scheduled,
To keep track of neuritis case care, management & referral,
To establish realistic referral system,
To provide adequate beds for hospitalization & care for leprosy complications in the referral hospitals,
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To provide care as much as possible for elderly, disabled PALs in the leprosy camps,
To introduce care after cure,
To prioritize physical & socioeconomic rehabilitation,
5] To identify new leprosy cases before nerve damage, recognize neuritis early & effectively treat, prevent developing new disabilities by doing regular nerve functions assessment and recoding the findings.
Objective: To diagnose at least 85% of new cases before developing nerve functions impairment.
To diagnose early & treat 85% of neuritis cases before reaching the stage of irreversible nerves damage.
Targets:
80% Leprosy suspects/Clients,
80% of the CHWs,
100% Context of POID training,
100% recoding & follow up system of Neuritis Care & Management,
80% Referral mechanisms,
100% Hospital based care,
Strategies:
To support & supervise, continue to train health workers on job in the hospital, field,
To health educate, orient the clients about early symptoms of neuritis,
To focus on task based training to improve skills to accurately assess nerve functions & record, make decisions on care, management and referral,
To improve the quality of care, through expertise consultancy at the referral hospital.
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6] To improve/activate referral mechanisms between the field program & health facilities/ referral centre where PALs can be admitted for specialized care.
Objective: To improve/activate referral mechanisms at all AAA health facilities.
Targets:
100% of AAA health facilities.
Strategies:
To improve communication between peripheral health facility & the referral centre.
To equip with basic facilities for PALs to stay in the referral centers,
To keep track of CHWs field visit activities/ monthly reports,
To keep monitoring monthly nerve functions assessment sheets, disability/ care registers,
To facilitate transportation for PALs who need referral,
To schedule for the visits like AMREF / visiting consultants,
7] To introduce hospital based self care for eyes, hands, feet, skin, and wound.
Objective: To introduce self care at the hospital to practice home based self care after discharge from the hospital.
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Targets:
100% of hospitalized PALS,
100% of PALs who need self care who visited the outpatient department for medical care,
100% of PALs enrolled for care after cure,
100% of PALs living at the leprosy settlements,
Strategies:
To motivate able PALs for self care from day 1 of hospitalization,
Staff to tell, show, help PALs to do self care activities till they are able to do,
Staff not to provide hospital materials which will not be applicable for home based self care.
8] To continue to provide care after cure to all PALs.
Objective: To provide continuous care to all PALs after cure.
Targets:
100% of PALs registered for care after cure.
Strategies:
To register all PALs after release from multi drugs treatment,
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To review all PALs at least once a year using CHWs,
To assist PALs to develop self care groups for self care activities,
To provide specialized care / hospital based care when indicated.
9] To provide physical rehabilitation in collaboration with AMREF, socioeconomic rehabilitation with local agents, [ministries of agriculture, fisheries].
Objective: To provide support to all PALs who need physical rehabilitation in collaboration with AMREF/ visiting surgeons.
To provide socioeconomic rehabilitation to at least 30 % of PALs who are in need.
Targets:
100% of PALs, who need physical rehabilitation.
30% of PALs, who need socioeconomic rehabilitation.
Strategies:
To provide hospital based physical rehabilitation to all PALs at the time of hospitalization,
To provide appropriate foot wear,
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To train PALs on self care,
To follow up through care register,
To repair and renovate broken down grinding mills,
To train PALs to run grinding mills,
To lobby local authorities for socioeconomic rehabilitation,
To provide micro finance loan for women groups with proper project plans.
10] To incorporate Leprosy & care for primary skin diseases with all health facilities.
Objective: To incorporate Leprosy & care for primary skin diseases with all health facilities.
Targets:
All health facilities & health workers in the area,
Strategies:
To train all health workers for one day in primary skin care including leprosy diagnosis,
To provide booklets, leaf lets on basic information regarding common skin diseases and leprosy,
To train trainers in the teaching & training institutes in the areas to train health workers in leprosy diagnosis,
To keep communicating through CME with the use of articles available on internet.
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11] Research in leprosy.
Objective: To facilitate & support research in leprosy to any local staff interested in research.
Targets:
Sudanese doctors, health workers,
Interested researchers,
Overseas trainees / students.
Strategies:
To keep up data accurately,
To follow international ethical standard,
To motivate interested staff in research activities and publications.
INDICATORS FOR MONITORING AND EVALUATION
1.
Main indicators for monitoring progress
-
The number and rates of new cases detected per 100,000 population per year
-
Rate of new cases with grade-2 disabilities per 100,000 population per year
-
Treatment completion/cure rate
Number and rate of new cases detected per year
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The nature (e.g type, grade of disability etc) and number of new cases detected in a given area are mainly influenced by four factors;
-
Effectiveness of IEC activities in promoting awareness and self-reporting
-
Health worker’s competence in making an accurate and timely diagnosis
-
Quality of monitoring and supervision by program managers
-
For completeness of program coverage with quality new case detection and to reach all the inhabitants , program should ensure that:
 Case-finding is mainly focused on promoting self-reporting, with appropriate clinical examination and history-taking to avoid wrong diagnosis and registration
 Case definitions are adhered to, as per national guidelines
 Previously fully or partly treated cases are not registered as new cases; partly treated cases should be given treatment.
All national programs should collect and report this information, distinguishing paucibacillary and multi-bacillary leprosy and child/adult patients (which are important for the calculation of MDT requirements).
Rate of new cases with grade-2 disabilities per 100,000 population
When reviewed together with other indicators, these can be used to:
1.
Estimate under-detection
2.
measure the need for physical and social rehabilitation
3.
advocate activities for the prevention of disabilities: and
4.
promote collaboration with other sectors
In addition, the use of such an indicator would help to highlight the issues that are important to persons affected by leprosy, governments and non-governmental organizations, donors and other partners
Treatment completion/cure rate
The two most important components of the leprosy control program are:
1.
Timely detection of new cases: and
2.
Ensuring that all new patients who start multi-drug therapy complete the full course of treatment within a reasonable period of time
A satisfactory treatment completion rate is indicative of efficient case-holding counseling and the degree of patient satisfaction with the services. Completion of treatment means that a pauci-bacillary leprosy patient completes six monthly doses of PB-MDT within nine months and a multi-bacillary leprosy patient completes 12 monthly doses of MB-MDT within 18 months
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All national programs should undertake cohort analysis of treatment completion rates for both pauci-bacillary and multi-bacillary leprosy at least on a sample basis.
A reported unsatisfactory treatment completion rate indicates that the program manager/supervisor should find more detailed information on the treatment outcome of the reporting clinic/district in order to identify appropriate corrective action. Such corrective action includes the use of accompanied multi-drug therapy as an option for a certain category of patients who are unable to visit the health facility regularly.
2.
Main indicators for evaluating case detection
-
Proportion of new cases presenting with grade-2 disabilities/impairments
-
Proportion of child cases among new cases
-
Proportion of female patients new cases
-
Proportion of multi-bacillary cases among new cases
3.
Main indicators for assessing the quality of services
proportion of new cases verified as correctly diagnosed
-
Proportion of treatment defaulters
-
Number of relapses
-
Proportion of patients who develop new/additional disability during multi-drug therapy
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DEFINITIONS
1.
PREVALENCE AND PREVALENCE RATE
Prevalence is the total number of leprosy cases registered for chemotherapy at the end of the reporting year. The prevalence rate is the total number of leprosy cases registered for chemotherapy at the end of the reporting year divided by the total population of the area: usually expressed as a rate per 10,000 Population.
2.
CASE DETECTION AND CASE DETECTION RATE
Case detection is the total number of new leprosy cases detected during the reporting year. The case detection rate is the total number of new leprosy cases detected during the reporting year divided by the total population of the area:
Usually expressed as a rate per 10,000 Population
3.
MB PROPORTION
The percentage of MB cases among the total number of new leprosy detected during the reporting year.
4.
CHILD PROPORTION
The percentage of children among all new cases detected during the reporting year.
5.
DISABILITY ASSESSMENT PROPORTION
The percentage of people with leprosy who are assessed for the presence of disability according to WHO grading scale (0,1,2) at the time of diagnosis among the new leprosy cases detected during the reporting year.
6.
DISABILITY PROPORTIONS
The percentages of people with WHO disability grade 1 and respectively among the new leprosy cases detected during the reporting year and for whom a disability assessment was carried out.
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7.
MDT COMPLETION OF PEOPLE WITH SINGLE SKIN LESION WHO RECEIVED SINGLE-
DOSE ROM.
The number of people with a single skin lesion who received a single dose of ROM.
8.
MDT COMPLETION: PERCENTAGE OF PB CASES COMPLETING SIX DOSES OF MDT
AMONGST THOSE EXPECTED TO COMPLETE THEIR MDT TREATMENT.
The percentage of PB cases diagnosed during a given period of time who complete their treatment correctly.
9.
MDT COMPLETION: PERCENTAGE OF MB CASES COMPLETING TWELEVE DOSES OF
MDT AMONGST THOSE EXPECTED TO COMPLETE THEIR MDT TREATMENT.
The percentage of MB cases diagnosed during a given period of time who complete their treatment correctly.
10.
RELAPSES: TOTAL NUMBER OF RELAPSES AFTER TREATMENT FOR MB OR PB LEPROSY
DURING THE REPORTING YEAR.
The number of cases diagnosed as having relapsed after MB,MDT or PB MDT during the reporting year.
11.
PROPORTION OF PEOPLE DEVELOPING NEW DISABILITIES DURING TREATMENT.
The proportion of people with PB or MB leprosy who have a higher disability score at the end of their treatment than they had at diagnosis.
12.
PROPORTION OF PEOPLE WHO STARTED CORTICOSTEROIDS
The percentage of people diagnosed during a given period of time who started corticosteroid treatment.
13.
CORTICOSTEROIDS COMPLETION RATE
The proportion of people who correctly complete a corticosteroid course out of those who started the course.
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14.
FEMALE PROPORTION
The proportion of females among the newly detected cases.
15.
PROPORTION OF HEALTH CENTRES WITH MDT BLISTER PACKS
The proportion of health centers having blister packs available at the time of the supervision or evaluation visit.
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