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Field testing survey and lessons learnt on the draft revised TB Recording and

Reporting forms26 June 2006

Prepared by Mrs Audrey Mahieu and Dr Pierre-Yves Norval, WHO Stop TB Department, Geneva

CONTENT

CONTENT........................................................................................................................................................................2

1. BACKGROUND...........................................................................................................................................................3

2. METHODOLOGY.......................................................................................................................................................4

3. MAIN RESULTS..........................................................................................................................................................5

3.1 COUNTRIES UNDERGOING CHANGE:..........................................................................................................................53.2 MAIN REASON OF THE REVISION:..............................................................................................................................63.3 USE OF THE DRAFT WHO REVISED FORMS:.............................................................................................................63.4 WHY HIV DATA ARE NOT ALWAYS INCLUDED IN THE TB FORMS:.........................................................................83.5 ELECTRONIC TB RECORDING AND REPORTING:.......................................................................................................83.6 DETAILED CHANGES MADE PER FORMS; A COMPARISON WITH THE DRAFT WHO REVISED VERSION POSTED ON THE WHO WEBSITE......................................................................................................................................................11 3.6.1 TB TREATMENT CARDS:.............................................................................................................................12 3.6.2 TB REGISTER:.............................................................................................................................................13 3.6.3 TB LABORATORY REGISTER:.....................................................................................................................15 3.6.4 QUARTERLY REPORT ON TB CASE REGISTRATION AT BMU (BASIC MANAGEMENT UNIT)......................16 3.6.5 QUARTERLY REPORT ON TB TREATMENT OUTCOME AT BMU (BASIC MANAGEMENT UNIT)..................20 3.6.6 QUARTERLY ORDER ON DRUGS:.................................................................................................................24 3.6.7 QUARTERLY ORDER ON LABORATORY SUPPLY:.........................................................................................25 3.6.8 YEARLY REPORT ON PROGRAMME MANAGEMENT AT BMU (BASIC MANAGEMENT UNIT) LEVEL:..........26

4. ASSESSMENT OF THE FIELD TESTING............................................................................................................27

5. CONCLUSION...........................................................................................................................................................28

5.1 QUESTIONNAIRE 1:.................................................................................................................................................285.2 QUESTIONNAIRE 2:.................................................................................................................................................29

6. POINTS FOR DISCUSSION AND RECOMMENDATIONS...............................................................................30

ANNEXE 1: LIST OF COUNTRIES ANSWERING QUESTIONNAIRE 1..................................................................................31ANNEXE 2: LIST OF COUNTRIES ANSWERING QUESTIONNAIRE 2..................................................................................32ANNEXE 3: COMMENTS ON THE REVISED FORMS.........................................................................................................33ANNEXE 4: EXPERT GROUP ON TB RECORDING AND REPORTING...............................................................................42

GRAPH 1: PROPORTION OF COUNTRIES UNDERGOING REVISION OF THEIR TB FORMS..................................................5GRAPH 2: MAIN REASONS TO INITIATE CHANGE IN THE TB FORMS..............................................................................6GRAPH 3: REASONS FOR NOT UNDERGOING REVISION...................................................................................................6GRAPH 4: REVIEW OF THE DRAFT WHO REVISED FORMS AMONG COUNTRIES UNDERGOING REVISION.......................7GRAPH 5: REVIEW OF THE DRAFT WHO REVISED FORMS AMONG COUNTRIES NOT UNDERGOING REVISION...............7GRAPH 6: REASONS NOT TO INCLUDE TB/HIV DATA....................................................................................................8GRAPH 7: DO YOU COMPUTERIZE AGGREGATE DATA (QUARTERLY REPORTS) AT BMU LEVEL?.................................9GRAPH 8: WHICH SOFTWARE DO YOU USE TO COMPUTERIZE AGGREGATED DATA AT BMU LEVEL? ........................10GRAPH 9: DO YOU COMPUTERIZE INDIVIDUAL DATA (TB TREATMENT CARD, TB PATIENT CARD, TB REGISTER) AT BMU (BASIC MANAGEMENT UNIT)LEVEL?.................................................................................................................10GRAPH 10: WHICH SOFTWARE DO YOU USE TO COMPUTERIZE INDIVIDUAL DATA AT BMU LEVEL? ........................11

A. Mahieu, PY.Norval WHO STB Department Field testing the draft WHO revised RR forms

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1. Background

The TB recording and reporting (R&R) information system is a condition for successful Stop TB Strategy implementation and expands on the DOTS strategy implemented over the last decade. The Stop TB Department of WHO, in collaboration with technical partners, embarked upon a revision of the TB Recording and Reporting (R&R) system to align the forms and registers to the new Stop TB Strategy. The revision facilitates the monitoring of the 6 components and 20 sub-components of the Stop TB Strategy, which itself was developed to help achieve the Millennium Development Goals.

In order to comply with these objectives, the STOP TB Department of WHO, in collaboration with partners, revised the current TB R&R information system. The expert group on the revision of the TB Recording and Reporting information system (annex 4), which includes 30 members from CDC, KNCV, Union, 6 WHO regional offices and selected country NTP managers, met 4 times in April, May, September 2005 and June 2006.Draft revised forms and registers for field testing and guidelines for field testing were developed between April and September 2005 through exchange and consultation between experts from the main technical partners (WHO, Union, KNCV, CDC, GDF), Stop TB Partnership Working Groups and sub-groups (DOTS Expansion, TB/HIV, MDR, paediatric, diagnosis algorithm, Public Private Mix, Pro-poor) and countries's stakeholders. These draft revised forms, registers, and guidelines were posted in Word format (English and French versions) on the on the Stop TB web site: www.stoptb.org in early November 2005 for country field testing and adaptation.

The present survey aimed to field test and report experience in using the draft forms and registers conducted for 8 months by countries with technical partner participation (CDC, KNCV, Union, WHO).

The main change proposed by this revision is the inclusion of TB/HIV collaborative activities in the R&R information system:

HIV testing and counselling : (1) number of TB patients tested for HIV(2) number of TB patients tested positive for HIV HIV care : (1) number of HIV-positive TB patients receiving co-trimoxazole preventive treatment (CPT) (2) number of HIV-positive TB patients receiving antiretroviral therapy (ART) (3) TB treatment outcomes of HIV-positive patients.

This information should be very relevant to improve the quality of patient care and the performance of the NTPs.

In addition to TB/HIV collaborative activities, the revised R&R information system also recommends to include new elements regarding: drug presentation (patient kits, blisters or loose tablets) diagnosis procedure (culture and X-ray, drug susceptibility test) information about transfer from one health facility to another one.


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http://www.stoptb.org/

Finally, the revision of the R&R information system plans to modify TB case registration and to TB treatment outcomes reporting. Concerning the first one, more attention should be given to paediatric forms of TB (separating registration of cases under 15 years old for each category of TB) while previously treated and smear not done cases should be registered separately from the other forms of TB. Regarding the second one, particular attention should be paid to the treatment outcomes of extrapulmonary, smear negative and not done, treatment after failure, treatment after default and other previously treated cases.

It has also been proposed to replace the previous quarterly management forms at district level by a yearly report on program management at district level but this last one may require special training and support.

These are the main changes proposed by the Expert Group for the revision of the R&R information system. They should contribute to facilitate building consensus at national level on a minimum standardized monitoring tools that comply with the Stop TB Strategy.

2. MethodologyThis survey was realized in two steps. Firstly, at the beginning of April 2006, a first questionnaire was sent to all the 211 countries and territories. This questionnaire had for objective to know when countries have revised the TB RR forms for the last time, which were the main reasons for revision and whether countries were aware of the existing draft version of the TB RR forms proposed by WHO and partners. Moreover all the countries were required to send a sample of their most recently revised TB RR forms.To validate answers, follow-up was done by e-mail, phone and direct contact with the targeted person. For English, French and Spanish speaking countries, answers from the questionnaire were compared with the content of their TB RR forms.

Return rate of the first questionnaire:105 out of 211 countries and territories answered the first questionnaire including 18 out of the 22 High TB Burden Countries, representing respectively a return rate of 50% for all countries and 82% among High Burden Countries. Returned first questionnaires cover 4,7 billion population out of a global population of 6,5 billion, representing 72% population coverage and 3,3 million estimated incident smear positive TB cases out of 3,9 million1 which represents 83% TB incidence coverage.

Then two different questionnaires were developed: one for countries using routine culture and one for countries not using routine culture. These questionnaires were sent at the end of April to the countries undergoing revision (76 countries) and aimed to know the changes these countries had

1 Estimated incidence for smear positive TB cases in 2004.


4

0

500

1,000

1,500

2,000

2,500

3,000

3,500

4,000

4,500

0 1,000 2,000 3,000 4,000 5,000 6,000 7,000

Population (billion)

Inci

denc

e of

SS+

TB

cas

es

Global

83% incident SS+ TB covered by first questionnaire

72% population covered by first questionnaire

made in comparison with the new elements and variables proposed by WHO and partners in the draft version of the revised TB RR forms. A special section was dedicated to open questions so that countries could express their concern about feasibility. Thus feasibility was not only assessed with the comments countries included in the questionnaires but also with the comments received by phone and e-mail.

Return rate of the second questionnaire41 out of 76 countries answering the first questionnaire and undergoing change answered the second questionnaire representing 54% return rate.

3. Main results

3.1. Countries undergoing change

The draft version of the revised TB R&R forms prepared by the WHO Stop TB Department and partners has been developed since April 2005 and was regularly updated between April and October 2005. The graph below indicates proportion of countries which answered the questionnaire and undergone revision and among them it distinguish countries starting revision before and after April 2005.

0%

10%

20%

30%

40%

50%

60%

70%

80%

Revised RR RR not revised

Revision before April 2005

Unknown date of revision

Revision after April 2005

72%

28%

Out of 105 countries answering the questionnaire, 76 countries (72%) have started or complete the revision of their forms. Out of these 76 countries undergoing revision, 12 countries (16%) started the revision process before April 2005 and in the last five years, 46 countries (61%) after April 2005 and 18 countries (24%) did not mention the date of the revision. Nearly three quarters of the countries have started to revise recently their reporting system and majority of them during the last year.


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Graph 1: Proportion of countries undergoing revision of their TB forms

3.2. Main reasons of the revision

Out of the 76 countries undergoing changes, 74 answer the question: “If your TB forms have been revised, or if they are undergoing revision, rank in order of importance the three main reasons why”. For more accurate results, we only took account the first and main reason for revising.TB/HIV activities is the first leading reason to initiate the change for 43 countries representing 59% of the countries. Other reason are shown on the following graph.

59%

12%5% 5% 5% 4% 3% 5%

Main reason for revising

Collaborative TB/HIV activities

New diagnosis algorithm

Drugs or treatment formulation

Requirement of donors ortechnical agenciesChange format

Multiple providers (PPM)

Human ressource management

Other (Please specify)

Out of the 29 countries that have not recently revised their TB RR forms, 25 have answered the question: “If your TB forms have not been revised, and they are not undergoing revision, please indicate the main reason why. 52% of countries (13/25) are waiting the final version of the WHO revised forms to start the change at country level. 32% of countries (8) do not need to revise their RR forms, most of them because the burden of tuberculosis is very low. Some countries gave more than one reason.

52%

32%

12% 12%

16%

Waiting finalrevised forms

No need Lack of funds Lack of humanresources

Other

Graph 3: Reasons for not undergoing revision

3.3. Use of the draft WHO revised TB R&R forms


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Graph 2: Main reason to initiate a revision of the forms

Out of the 41 countries we know they started revising after April 2005 and that answered the question2, 54% (22/41 countries) have reviewed the draft-revised forms at the time of their national change and 86% (19 out of these 22 countries) found it useful. However, out of the 41 countries we know they started revising after April 2005 and that answered the question, 46% (19/41 countries) made the change without reviewing the draft revised forms. According to the comments received, we can assume that nearly half of the countries undergoing change did not review the draft WHO revised forms because they were not aware of the existence of these latter ones.We observe a large difference among the countries and regions. Limited number of countries in AMRO and EURO regions reviewed the draft WHO revised version representing respectively 29% and 27% of AMRO (3/12) and EURO (4/12) countries as compared to 50% in other regions.

0%

10%

20%

30%

40%

50%

60%

Draft WHO revised RR seen Draft WHO revised RR not seen

54%46%

found usefull

Out of the 29 countries that did not revise their RR forms, 19 answered the question: “In order to inform the revision, have you reviewed the draft version of the forms prepared for field testing by the WHO Stop TB Department and partners?”. Only 3 countries (16%) have reviewed the draft

WHO revised forms and choose not to make change and 16 countries (84%) did not consult the draft WHO revised forms.

16%

84%

Have reviewed the draft version Have not reviewed the draft version

2 41 countries have answered the question: “In order to inform the revision, have you reviewed the draft version of the forms prepared for field testing by the WHO Stop TB Department and partners?”


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Graph 4: Review of the draft WHO revised forms among countries undergoing revision

Graph 5: Review of the draft WHO revised forms among countries not undergoing revision

More than half of the countries revising their forms have seen the draft WHO revised forms and found it useful especially in AFRO and in high HIV prevalence countries. Most countries that did not make revision did not consult the draft WHO revised forms

3.4. Why HIV data are not always included in the TB forms?

Out of the 76 countries undergoing revision, 25 answered the question: “If HIV information has not been included in your TB forms, please rank in order of importance the reason why”. For more accurate results, we only took account of the first and main reason for not including HIV information.Among 25 countries which did not want to include TB/HIV data, most of them did not pursue revision of their TB forms. Main reason given by these countries not to include data on HIV in their TB R&R forms was the uncertainty about confidentiality (40%). Most EURO countries commented that HIV data is anonymous by law and therefore cannot be included in nominal TB data.Some countries are reluctant to include data on HIV in the TB RR forms while the TB/HIV collaborative activities are not in place.

40%

20% 20%

4%

16%

Uncertainty aboutconfidentiality

Waiting for the finalversion

HIV/AIDS programalready provides it

Lack of humanresources

Other

Graph 6: Reasons not to include TB/HIV data

3.5. Electronic Recording and Reporting TB forms

3.5. Electronic Recording and Reporting TB forms

Out of the 105 countries answering the first questionnaire, 104 answered the questions concerning the electronic Reporting and Recording system. Out of these 104 countries, 37 (35%) computerize aggregate or individual data at BMU level (or lower). By computerizing, we mean entering data in


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an electronic Recording and Reporting system, which generates various analysis or reports. Countries can computerize aggregate data such as quarterly reports or individual data. 13% (13/104) computerize aggregate data at BMU level, and most of them use Epi-info or Excel. Out of the 10 countries answering the following question3, 70% (7/10) computerize aggregate data in all BMUs, 30% (3/10) only in some BMUs.23% (24/104) computerize individual data at BMU level. Whereas AFRO countries commonly use ETR, many other countries use Epi-info derivatives or home-made software and sometimes home-made web-based software. Out of the 23 countries answering the following question4, 61% (14/23) computerize individual data in all BMUs, 39%(9/23) only in some BMUs.BMUs using no web-based recording and reporting system transfer data to the upper level via floppy disks, CDs, USB key and e-mails when they have access to internet. For countries with a web-based recording and reporting system, the transmission mode is on-line.In view of the numerous approaches for electronic Recording and Reporting system and because of the complexity of the questions, particular attention was paid to this section and follow-up by phone reinforced. During the interviews, many countries recognized that their electronic R&R system is still at early stage of development. By consequence, there is a real demand from the countries to have access to information on other available e-R&R systems.

Graph 7: Do you computerize aggregate data (quarterly reports) at BMU level?

AFR: RD Congo; Rwanda; SwazilandAMR: Guatemala; Guyana; Haiti; HondurasEUR: Bosnia Herzegovina; Estonia; HungarySEAR: India; IndonesiaWPR: Vietnam

3 “Do you computerize aggregate data in all or some BMU (BASIC MANAGEMENT UNIT)s?”4 “Do you computerize individual data in all or some BMU (BASIC MANAGEMENT UNIT)s?”


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Graph 8: Which software do you use to computerize aggregated data at BMU level?

Epi-info (and derivatives): Bosnia Herzegovina; Haiti; Honduras; India; SwazilandExcel: Estonia; Guyana; Indonesia; RD Congo; RwandaHome made software: Vietnam (VNTP management program)

Graph 9: Do you computerize individual data (TB treatment card, TB patient card, TB register) at BMU level?

AFR: Botswana; Tanzania; South AfricaAMR: Argentina; Brazil; Canada; Chile; El Salvador; Mexico; Dominican RepublicEUR: France; The Netherlands; Serbia; Slovakia; Sweden; United Kingdom; PortugalEMRO: Sultanate of OmanWPR: Australia; Guam; Hong Kong; Rep.Korea; Niue; China


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Graph 10: Which software do you use to computerize individual data at BMU level?

Epi-info (and derivatives): Chile; El Salvador; Hong Kong; Mexico; OmanETR: Botswana; Tanzania; South AfricaAccess: Guam; Portugal; United KingdomHome-made software: Australia (various software); Brazil (SINAN); Canada (various software); Dominican Rep. (SET – SQL server on-line); France (BK4); Niue (SPC); Slovakia (Home-made/Linux).Web-based system: Argentina (TB module of SNVS); Rep. Korea (KTBS); The Netherlands; China (KTBS derivative); Serbia; Sweden.

3.6. Detailed Change made per forms; a comparison with the draft WHO revised version posted on the WHO website

Out of 105 countries answering the first questionnaire, 76 of them undergone revision and were sent the second questionnaire on detailed change performed. Out of these 76 countries, 41 countries answered this second questionnaire providing detailed information on change made in their TB RR forms and reports and sharing experience and obstacles during this change. On the second questionnaire, we compared the change made by the countries with the draft WHO revised forms posted on the WHO web site in November 2005 to assess the compliance with the change proposed by the expert group and assess the feasibility of the change. This sum of experience is to be considered as a large test in 41 countries answering questionnaire 2. Circled data highlight the change made on the draft WHO revised form and percentage represents the rate of inclusion of the proposed change at country level.


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3.6.1. Tuberculosis treatment cardOut of the countries that answered the questions5, the percentage represents the proportion of countries including these new elements.Elements proposed for revision by WHO and partners are circled and percentage of countries including this item is shown in the corresponding box. Presentation may differs from the generic WHO revised form.

Most of the new proposed data is incorporated in the revised TB R&R forms developed in the countries that answered the question, except the table on HIV care. Although the main reason to initiate the revision was led by the need to include TB/HIV activities, we notice the low intake of CPT (Cotrimoxazol Preventive Therapy) and ART (Anti Retroviral Treatment) data in the TB treatment card, TB register and quarterly reports on TB case registration and on TB treatment outcome. However, the need to report on TB/HIV indicators including

5 The number of countries answering the questions (denominator) is different following the elements: 31 out of 39 countries (80%) include a table for culture ; 29 out of 40 countries (73%) include a table for DST ; 23 out of 38 countries (61%) include a table for X-ray ; 14 out of 40 countries (35%) include the start date of CPT ; 15 out of 40 countries (38%) include in formation on ART eligibility and start date ; 11 out of 40 countries (28%) include the ART register number ; 8 out of 39 countries (20%) include CD4 result ; 25 out of 39 countries (64%) include HIV test (Y/N) ; 23 out of 40 countries (58%) include date of HIV test ; 26 out of 40 countries (65%) include result of HIV test ; 11 out of 40 countries (17%) include pre-ART register number and 23 out of 36 countries (64%) include a transfer table.A. Mahieu, PY.Norval WHO STB Department Field testing the draft WHO revised RR forms

Culture: 80% DST: 73%Drug sensitivity Test

X-ray: 61%

HIV care: 36%

HIV test and counselling: 64%

Transfer table: 64%

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CPT and ART among TB cases calls for more attention and explanation on the generic WHO revised forms. Some HIV information will need cross checking with the HIV/AIDS recording system such as pre-ART and ART register numbers and clear guidance is needed.More than half of the countries have also included a table on transfer in their revised TB R&R forms but which is often far more simple than the one proposed in the WHO draft version.

Point for Discussion:

1. Is it relevant to include table of transfer, and in which format in this form ?

Recommendations

1. TB RR guidelines should highlight the need to include information on CPT and ART in the main forms (TB treatment card, TB register, TB quarterly reports) whenever HIV information is included.

2. TB RR guidelines should highlight the need to include information on culture and DST in the main forms (TB treatment card, TB register, TB quarterly reports) only in countries performing routine culture. In other countries with ad hoc culture and DST, this information may come in the comments.

3.6.2. Tuberculosis registerOut of the 40 countries answering the questions6, the percentage represents the proportion of countries including these new elements.Elements proposed for revision by WHO and partners are circled and percentage of countries including this item is shown in the corresponding box.

6The number of countries answering the questions (denominator) is different following the elements: 29 out of 40 countries (73%) include the definition “Other previously treated”; 18 out of 39 countries (46%) include a column for treatment supporter; 21 out of 40 countries (53%) include a column for X-ray; 31 out of 39 countries (79%) include a column for HIV result; 14 out of 40 countries (36%) include a column for CPT (Y/N); 17 out of 39 countries (44%) include a column for ART (Y/N). A. Mahieu, PY.Norval WHO STB Department Field testing the draft WHO revised RR forms 13

Form 3: BMU TB Register - Left side of the register book Form 3: BMU TB Register - Right side of the register book

Change on HIV test and results are largely included in the revised forms at country level.Despite the main reason to initiate the revision was led by inclusion of TB/HIV activities, we notice the low intake of CPT and ART data in the TB treatment card, TB register and quarterly reports on TB registration and on TB treatment outcome. However, the need to report on TB/HIV indicators including CPT and ART among TB cases call for more attention and discussion. Particular attention should also be paid to the fact that 36% of the countries7include or have planned to include a separate TB/HIV register.As well information on treatment supporter is missing in majority of the revision, which jeopardized the monitoring of community involvement (Stop TB Strategy, component 5). More attention and explanation might be needed to include this information in the generic WHO revised forms.73% of the countries answered they include or will include the definition of “Other previously treated” in the tuberculosis register. However, considering the revised RR forms we received along with the questionnaires, we can assume that most of the countries include a column for “Other” but do not insert in footnote any definition for “Other” while they do it for the “New”, “Relapse”, “Treatment after failure”, “Transferred in” patients. So there is a need to put in exergue this new element and to insist on including the definition in footnote with the other definitions of type of patients

Point for Discussion:

7 14 out of 39 countries (36%) answered that they include or will include a separate TB/HIV register in the RR information system.A. Mahieu, PY.Norval WHO STB Department Field testing the draft WHO revised RR forms

Treatment supporter: 45%Definition of "Other previously treated" : 73%

X-ray: 59%HIV test and results: 79% ART: 44%

CPT: 35%

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2. Is it relevant to better define "other previously treated " ?

Recommendations

3. TB RR guidelines should highlight the need to include information on "treatment supporter" in the main forms (TB treatment card, TB register, TB quarterly reports).

4. TB RR guidelines should highlight the need to include definition of other previously treated patients in the TB register.

3.6.3. Tuberculosis laboratory registerOut of 40 countries that answered this question, 32 countries (80%) include the name of the facility that sent the patient for sputum smear microscopy in the tuberculosis laboratory register.Elements proposed for revision by WHO and partners are circled and percentage of countries including this item is shown in the corresponding box.

Transferring health facility is included in most of the revisions, which is essential to answer information on provider contribution for diagnosis in the yearly report


Name of the transferring health facility: 80%

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3.6.4. Quarterly report on TB case registration

Results for the quarterly report on TB case registration are given separately for countries not using routine culture and countries using routine culture since the forms are not the same.

Out of the countries not using routine culture that answered the questions8, the percentage represents the proportion of countries including these new elements.Elements proposed for revision by WHO and partners are circled and percentage of countries including them is shown as indicated below.

8 The number of countries answering the questions (denominator) is different following the elements: 19 out of 31 countries (61%) report the N° of “Other previously treated” cases; 17 out of 30 countries (57%) report the N° of “smear not done” cases; 8 out of 17 countries (47%) include an age breakdown for smear not done cases; 23 out of 31 countries (74%) include an age breakdown for smear negative cases; 20 out of 30 countries (67%) include an age breakdown for extrapulmonary cases; 23 out of 30 countries (77%) report the N° of TB suspects examined for diagnosis by sputum smear microscopy; 23 out of 30 countries (77%) report the N° of TB suspects with sputum smear microscopy positive result; 19 out of 31 countries (61%) report the N° of new sputum smear microscopy positive TB patients tested for HIV before, or during treatment; 18 out of 31 countries (58%) %) report the N° of new sputum smear microscopy positive TB patients tested positive for HIV; 15 out of 31 countries (48%) report the N° of all TB cases except new smear positive, “transferred in” and chronic cases tested for HIV before, or during TB treatment; 15 out of 31 countries (48%) report the N° of all TB cases except new smear positive, “transferred in” and chronic cases tested positive for HIV.A. Mahieu, PY.Norval WHO STB Department Field testing the draft WHO revised RR forms

60%

48%77%

61%

67%57%74%

57%

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Smear not done is included only is 57% of the revised forms. This change is not fully undertaken and require more guidance on its need and importance.

Laboratory information are incorporated in more than 3/4 of the revised quarterly forms on TB case registration.

Less than 1/2 countries adopted break down by forms to present HIV information. We noted that HIV information is sometimes included in the treatment card or the TB register and not in the quarterly report on registration. Several countries recommend to include information on CPT in this quarterly report on TB registration rather than in the quarterly report on treatment outcome.

3/4 of countries added age breakdown for smear negative TB cases and half of them with 3 age groupings (≤4 years; 5-14 years; ≥ 15 years). 2/3 of countries added age breakdown for extrapulmonary TB cases and less than half of them with 3 age groupings (≤4 years; 5-14 years; ≥ 15 years). Age breakdown among TB cases with smear not done is less frequent with 57% and 2 age breakdown (< and ≥ 15 years) most often. In their comments, several countries propose that smear not done to be recorded only for Pulmonary TB (PTB) > 15 years. Therefore, we observe that both (< 15 years; ≥ 15 years) and (≤4 years; 5-14 years; ≥ 15 years) are commonly used. Brazil is the only country including a exact age for all types of cases, thanks to an electronic system (SINAN – system of national information).

61% of the countries may include the number of “other previously treated” cases in the quarterly report on TB case registration but no definition is available in footnote, and most of the countries entitle it “Other”.

A. Mahieu, PY.Norval WHO STB Department Field testing the draft WHO revised RR forms 17

More detailed information on age breakdown:(< 15 years; ≥ 15 years) (≤4 years; 5-14 years; ≥ 15 years) Yearly age

Age breakdown for smear negative9 45% 50% 5%Age breakdown for extrapulmonary10 47% 47% 5%Age breakdown for smear not done11 50% 38% 13%

Point for Discussion:3. Is it relevant to include 1. age breakdown for smear not done cases, 2. CPT in this form ?4. Should the (≤4 years; 5-14 years; ≥ 15 years) age break down replace the (< 15 years; ≥ 15 years) age breakdown?

Recommendations

5. TB RR guidelines should highlight the need to include HIV information including result and smear not done in the quarterly report on TB case registration.

Out of the 6 countries using routine culture that answered the questions, the percentage represents the proportion of countries including these new elements.

Elements proposed for revision by WHO and partners are circled and percentage of countries including them is shown as indicated below

9 Out of 23 countries including an age breakdown for smear negative cases, 22 answered the question. 10 out of 22 countries (45%) include a (< 15 years; ≥ 15 years) age breakdown; 11 out of 22 countries (50%) include a (≤4 years; 5-14 years; ≥ 15 years) age breakdown and one country (5%) includes a yearly age breakdown.10 Out of 20 countries including an age breakdown for extrapulmonary cases, 19 answered the question. 9 out of 19 countries (47%) include a (< 15 years; ≥ 15 years) age breakdown; 9 out of 19 countries include a (≤4 years; 5-14 years; ≥ 15 years) age breakdown and one country (5%) includes a yearly age breakdown.11 Out of 8 countries including an age breakdown for smear not done cases, all answered the question. 4 out of 8 countries (50%) include a (< 15 years; ≥ 15 years) age breakdown; 3 out of 8 countries (38%) include a (≤4 years; 5-14 years; ≥ 15 years) age breakdown and one country includes a yearly age breakdown.A. Mahieu, PY.Norval WHO STB Department Field testing the draft WHO revised RR forms 18

Form 6A: Quarterly report on TB case registration in BMU using routine culture

Age breakdown, smear not done data is nearly always incorporated in the quarterly report on TB case registration with routine culture, more often than in report without routine cultureIn contrast, block 3 on laboratory activities and block 4 on TB/HIV activities are not so often included in the quarterly report on TB treatment outcomes for countries using routing culture. However, because the denominator is small (only 6 countries answered the questions), it is difficult to give a general view of what is happening in these countries.The concerns about the incorporation of “Other previously treated cases” are the same as those previously noted. No clear definition appears in footnotes and most countries entitle it “Other”.Presentation of the reporting of culture results varies and indication of the frequency of the report is not documented.


50% 67%

50% 67% 50% 50% 67%

83%

100%

100%

100%

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More detailed information on age breakdown: (< 15 years; ≥ 15 years) (≤4 years; 5-14 years; ≥ 15 years) All ages

Age breakdown for smear negative12 40% 20% 40%Age breakdown for extrapulmonary13 25% 25% 50%Age breakdown for smear not done14 50% 25% 25%

3.6.5.Quarterly report on TB treatment outcomes The results for block 1 on the quarterly report on TB treatment outcome are presented separately for countries without routine culture and countries using routine culture, while the results for block 2 on quarterly report on TB/HIV activities and for block 3 on quarterly report on TB treatment outcomes for HIV patients are presented once for both type of report since they are the same.

For block 1 on quarterly report on TB treatment outcomes, the percentage represents the proportion of countries not using routine culture including these new elements15.

For block 2 on quarterly report on TB/HIV activities and for block 3 on quarterly report on TB treatment outcomes for HIV patients, the percentage represents the proportion of both countries not using routine culture and countries using culture including these new elements16.

3.6.5.1 Quarterly report on TB treatment outcome and TB/HIV activities without routine culture

12 6 countries include an age breakdown for sputum smear negative cases and 5 of them answered the question. 2 out of 5 countries (40%) include a (< 15 years; ≥ 15 years) age break down; 1 out of 5 countries (20%) include a (≤4 years; 5-14 years; ≥ 15 years) age breakdown and 2 out of 5 countries (40%) include a yearly age breakdown.13 5 countries include an age breakdown for extrapulmonary cases and 4 of them answer the question. 1 out of 4 countries (25%) includes a (< 15 years; ≥ 15 years) age break down; 1 of 4 countries (25%) includes a (≤4 years; 5-14 years; ≥ 15 years) age breakdown and 2 out of 4 countries include a yearly age breakdown.14 Out of the 6 countries including an age breakdown for smear not done cases, 4 of them answer the question. 1 out of 4 countries (25%) includes a (< 15 years; ≥ 15 years) age break down; 1 of 4 countries (25%) includes a (≤4 years; 5-14 years; ≥ 15 years) age breakdown and 2 out of 4 countries include a yearly age breakdown.15 The number of countries answering the questions (denominator) is different following the elements.For block 1 on quarterly report on TB treatment outcomes for countries not using routine culture: 27 out of 31 countries (87%) report the treatment outcome for smear negative and not done patients; 26 out of 31 countries (84%) report the treatment outcome for extrapulmonary patients; 27 out of 30 countries (90%) report the treatment outcome for treatment after failure cases; 27 out of 30 countries (90%) report the treatment outcome for treatment after default cases; 26 out of 30 countries (87%) report the treatment outcome for “Other previously treated” patients; 12 out of 31 countries (40%) report the number of patients excluded from the quarterly report on TB treatment outcome because it appears that they do not have tuberculosis; 12 out of 26 (46%) include the patients switched to Cat.IV during first line treatment (Cat. I,II,III) in the treatment failure outcome.16 For block 2 and block 3 for both countries not using routine culture and countries using routine culture: 15 out of 35 countries (43%) report the N° of HIV-positive smear microscopy positive TB patients receiving CPT; 16 out of 35 countries (46%) report the N° of HIV-positive smear microscopy positive TB patients receiving ART; 11 out of 35 countries (31%) report the N° of all HIV-positive TB patients except new smear positive, “transferred in” and chronic cases receiving CPT; 10 out 35 countries (31%) report the N° of all HIV-positive TB patients except new smear positive, “transferred in” and chronic cases receiving ART; 17 out of 34 countries (50%) report the TB treatment outcomes for HIV-positive new sputum smear microscopy positive TB patients; 12 out of 33 countries (36%) report the treatment outcomes for all HIV-positive TB patients except new smear positive TB patients, “transferred in” and chronic cases.A. Mahieu, PY.Norval WHO STB Department Field testing the draft WHO revised RR forms 20

Elements proposed for revision by WHO and partners are circled and percentage of countries including them is shown as indicated below.

More than 84% of the revisions include all additional treatment outcomes by type. Some Eastern European countries even comment that the main problem they are dealing within the revision of the TB RR forms is that the large number of re-treatment cases are often misclassified as the RR forms do not provide yet enough detail for re-treatment cases (i.e. re-treatment smear negative and chronic cases). Thus for some of countries with many re-treatment cases, there is even a need to include more breakdowns of TB treatment outcomes for re-treatment cases.However, these additions represents an important increase in Stop TB workload and difficulties without a clear way to assess the quality of data.


39%

46%

36%

50%

21

Exclusion of TB patients from the quarterly report on TB treatment outcomes is problematic and only 39% report the number of patients excluded from the quarterly report on TB treatment outcomes because they were misdiagnosed. It is also important to note that only 46% of the countries not using routine culture include in the "treatment failure" outcome, the number of patients who switched to Cat. IV according to the the draft version of RR forms. These patients were switched to Cat. IV because sputum sample taken at start of the treatment turned out to be MDR-TB during the treatment with first line drugs. Some countries rather plan to add an additional outcome for these patients switched to Cat IV during treatment with first line drugs (cat 1,2,or 3).

Block 2 on the quarterly report on TB/HIV activities is missing in a majority of the revisions. When they include a table on the quarterly report on TB/HIV activities, many countries only report the number of TB patients tested for HIV and the number of TB patients tested positive for HIV. Here we can again observe that the intake on CPT and ART data is low in the quarterly report on TB treatment outcomes and this point calls for more attention and discussion.

Out of the 35 countries answering this question, 46% are including the number of new sputum smear positive TB patients receiving Co-trimoxazole Preventive Treatment and AntiRetroviral Treatment. Only 29% are including the CPT and ART data for both New smear positive and "all TB cases".

Block 3 on the quarterly report on TB treatment outcome for HIV-positive patients is also missing in a majority of the revision. This point also calls for more attention and discussion.

Out of the 34 countries that answered the question, 50% are including the TB treatment outcomes for HIV-positive new sputum smear positive TB patients. Only 36% are including the TB treatment outcomes for all HIV-positive TB patients except new smear positive TB patients, "transferred in" and chronic cases.


46%

29%

50%

36%

22

3.6.5.2 Quarterly report on TB treatment outcomes and TB/HIV activities with routine culture

For block 1 on the quarterly report on TB treatment outcomes in BMU using culture routinely, out of the 6 countries using culture routinely, the percentage represents the proportion of countries including these new elements.

Elements proposed for revision by WHO and partners are circled and percentage of countries including them is shown as indicated below


60%

67%

23

3.6.6. Quarterly order forms on drugs

67%

33%

25%

75%

50% 50%

Yes No

Incl

ude

CP

T

Doe

s no

tin

clud

e C

PT

Incl

ude

paed

iatr

icpr

esen

tatio

n

Doe

s no

tin

clud

epa

edia

tric

pres

enta

tion

Out of the 38 countries that answered the question, 67% (16/38) use a quarterly order form for drugs at peripheral level. Out of the 24 countries that answered the question and use a quarterly report for drugs at peripheral level, 50% (12/24) include a pediatric drug presentation in it and only 25% (6/24) include co-trimoxazole in it.

Out of the 24 countries that answered the question and use a quarterly report for drugs at peripheral level, only 18% (6/24) use patient kits and repackage open kits not used from death or defaulter cases into a complete new kit.

A. Mahieu, PY.Norval WHO STB Department Field testing the draft WHO revised RR forms Out of the 24 countries that answered the question and use a quarterly order for drugs at periphral level

24

3.6.7. Quarterly order forms for laboratory supplies

42%

58%

25%

50%

25%20%

80%Quarterly order form for laboratory supplies

Out of the 38 countries that answered the question, 42% (16/38) use a quarterly order forms for laboratory supplies at peripheral level.

Out of the 14 countries that answered the question and use a quarterly order forms for laboratory supplies at peripheral level, 4 countries (25%) base the orders for laboratory supplies on morbidity and 7 countries (50%) on consumption and 4 countries (25%) on both morbidity and consumption (25%).


Out of the 15 countries that answered the question and use a quarterly order forms for laboratory supplies at peripheral level, 20% are including or plan to include HIV test kits in the quarterly order forms for laboratory supplies.

Order form for laboratory supplies at BMU level is only provided for microcopy not for culture. Order form for laboratories supplies for countries using routine culture should be added.

3.6.8 Yearly report on program management at BMU level

Out of the 41 countries that answered the question, 26 countries (63%) include a yearly report on program management at BMU/district level.Out of the 25 countries that include a yearly report on program management at BMU/district level answering the questions, the percentage represents the proportion of countries including these new elements.Elements proposed for revision by WHO and partners are circled and percentage of countries including them is shown as indicated below


51%56%51%

73 %

84%

92% 84% 60%

26

4. Assessment of the field testing

Answers to the questionnaire 1 and comments sent by 105 countries, constitute the basis for field testing and lessons learnt on the draft revised TB Recording and Reporting forms.

Many countries comment that the new variables added in the revised RR forms enables to improve NTP performance through better overall of TB control components.The first reason to revise the RR forms is to include TB/HIV collaborative activities and many countries assert that this inclusion of TB/HIV data is the most positive aspect of the revision since it enables to measure the impact of the HIV burden on reported tuberculosis.

However, many countries express their concern about the overloaded work as a consequence of the addition of new variables in the RR forms. Health workers may have difficulties complying with additional information required by the proposed new system and this may have the unintended consequence of decreasing data quality for all information collected and increasing the possibility of falsification. To overcome this overloaded work, some countries are soliciting clerks for administration affairs. Countries also ask for more detailed guidelines since there is a shortage of qualified personnel at health facility level in certain countries and there is often a rotation of personnel. New forms and definitions should be interpreted in a similar manner and information required correctly filled by every health worker, so there is a clear need to explain more precisely


71%

27

through training the importance of each section of the new data collection tools to the extent that the data collectors themselves can analyze and use their own data.

Furthermore, in some countries that have recently revised, there is a mix of old and new forms since in some districts there is a delay in adopting the new forms and health workers are reluctant to use the new ones because workers need much more time to fill them out. This situation presents a problem of summarizing and comparing district performances. So we must be aware that asking for too much information is likely to compromise data completeness and accuracy. There is a need to keep things simple and to the minimum for the most relevant information that will be used to inform TB control and fulfill the aim of surveillance. Moreover, proper and regular training, as well as very detailed guidelines are needed so that every health workers can interpret and fill out correctly the new RR forms.

We can observe that many EURO countries do not use the RR forms proposed by WHO, firstly because they use the document standardized by EURO TB and secondly because many of them use an individual database system and all TB cases are directly entered in the central database. EURO TB is a WHO Collaborating Centre for the Surveillance of TB in Europe (www.eurotb.org). So many European countries do not use the quarterly reports at BMU.

Many countries also comment that the addition of TB/HIV data when TB/HIV collaborative activities are not yet implemented or HIV/AIDS program is undeveloped may lead to confusion, inaccuracies and therefore undermine quality. Thus some countries with low HIV prevalence prefer waiting for TB/HIV collaborative activities to be implemented before including any HIV data in the new RR forms. As we can observe the first reason not to include HIV data in the new RR forms is the uncertainty of confidentiality. HIV information is not included in the TB reports in many EURO countries due to legislation to maintain HIV data anonymous and in low HIV prevalence countries such as India due to the limited uptake of TB/HIV collaborative activities.

Finally some countries arise the issue that the link between the laboratory register and the tuberculosis register is not always properly done and can lead to double registration of transferred patients and suggest introducing a unique patient identification number/code for laboratory register and district register.

5. Conclusion

5.1. Questionnaire 1

In view of the results of the first questionnaire we can assume that there is a real need for changing RR forms in use.

72% of the countries that answered the first questionnaire have recently revised the TB RR forms. If only 54% of them have reviewed the draft version of the RR forms proposed by WHO and partners, it is impressive to note that most of the countries not reviewing the draft version have


28

revised for the same reasons and include most of the same new elements than those proposed by WHO and partners.

The first reason for revision is the incorporation of TB/HIV activities in the RR forms (for 59% of the countries having recently revised). Effectively, we can observe that data on HIV test and HIV results are largely included in all the forms, but data on CPT and ART are missing in the revision. Only few countries include these latter ones. So there is a clear need to insist on including these data that are an important element of the revision. However, certain countries are still reluctant of including data on HIV in the TB RR forms since these ones are not anonymous (most of the European countries because of the legislation) or TB/HIV collaborative not yet implemented in low HIV prevalence countries.

5.2. Questionnaire 2

Some new elements and variables are very largely included, namely Ө The name of the transferring health facility that sent the patients for sputum smear

microscopy in the TB laboratory register. This element is essential to answer the yearly report on provider contribution in diagnosis.

Ө In the quarterly report on TB case-registration, the number of smear not done/not available cases is reported by the majority of the countries and age breakdown is also largely included for each type of tuberculosis.

Ө The age breakdowns (< 15 years; ≥ 15 years) and (≤4 years; 5-14 years; ≥ 15 years) are equally included. Since distinction between ≤4 years and < 15 years is crucial in ordering drugs, it might be considered to include a two age categories (0-4 and 0-15 years) for new pulmonary cases and extrapulmonary cases.

Ө The majority of countries also include a quarterly order forms for drugs at peripheral level and half of them are including a paediatric drug presentation. However, like many countries do not include CPT data on the other forms, there is no exception for order form for drugs.

Ө Finally and surprisingly, 63% of the countries include a yearly report on programme management at BMU level with exhaustive information.

Ө We could also mention that it is very hopeful to see that 52% of the countries that have not yet started their revision process are waiting for the definite version of WHO version to initiate the revision.

The second questionnaire reveals that some new elements and new variables still need to be emphasise. Ө The importance of the community empowerment and the treatment supporter is not reflected

in the RR forms of many countries. In the tuberculosis register, only 46% of the countries include a column to indicate the presence or the name of the treatment supporter.

Ө The definition of “Other previously treated” is poorly included as we can observe in the sample of the new revised RR forms sent by the countries. Most of them do not include any definition in footnote and entitle it “Other”. It is important to exergue this point to avoid misclassification in the treatment outcomes by type of cases (see Block 1 in the quarterly report on TB treatment outcome) and in the quarterly report on case-registration (see Block 1).

Ө In the quarterly report on TB treatment outcomes, less than half of the countries include the patients switched to Cat. 4 because sputum sample taken at start of treatment turned out to be


29

MDR-TB. Actually even 46% of the countries are including these patients in an additional category. So there is a clear need to pay more attention to this point.

Ө Less than half of the countries include a laboratory order form on laboratory supplies at peripheral level, but what deserves to be mentioned is that only 50% of them base the order for laboratory supplies on consumption. By consequence there is a need to more clearly explain this point.

In conclusion, while certain elements have been largely included in the revised RR forms, even in the countries that did not review the draft-revised RR forms proposed by WHO and partners, some elements still need to be discussed (see points for discussion).

6. Point for discussion and recommendations

1. TB RR guidelines should highlight the need to includeӨ information on CPT and ART in the main forms (TB treatment card, TB register, TB quarterly

reports) whenever HIV information is included.Ө information on culture and DST in the main forms (TB treatment card, TB register, TB

quarterly reports) only in countries performing routine culture. In other countries with ad hoc culture and DST, this information may come in the comments.

Ө information on "treatment supporter" in the main forms (TB treatment card, TB register, TB quarterly reports).

Ө definition of other previously treated in the TB register.Ө HIV information including results of HIV test Ө Smear not done in the TB quarterly report on registrations.

2. An order form for laboratory supplies should be added for countries using routine culture.

3. Is it relevant to include o table of transfer in the Treatment card and discuss its format o age breakdown for smear not done in the quarterly reports, o 2 or 3 age breakdown in the quarterly report on TB registration (≤4 years; 5-14 years; ≥ 15

years) or (< 15 years; ≥ 15 years)?o CPT in the quarterly report on registration


30

Annexe 1: List of 105 countries that answer questionnaire 1WPRO SEARO EURO EMRO AFRO AMRO

AUSTRALIA CAMBODIA CHINA MACAUFIJIFRENCH

POLYNEYESA GUAMHONG KONG CHINA KOREALAO PDR MALAYYESA

MONGOLIA NAURUNIUE P.R. CHINA PALAUPAPUA NEW GUINEA PHILIPPINES

TOKELAU TUVALUVANUATU VIETNAM

BANGLADESHBHUTANINDIAINDONESIAMALDIVESMYANMARNEPALTIMOR LESTE

ESTONIAARMENIAAZERBAIJANBELGIUMBOSNIA- HERZEGOVINACROATIACYPRUSCZECH REPUBLICDENMARKFRANCEGEORGIAHUNGARYLATVIALITHUANIALUXEMBOURGNETHERLANDSPORTUGALREPUBLIC OF MACEDONIASERBIASLOVAKIASWEDENSWITZERLANDTURKMENISTANUNITED KINGDOM

IRAQMARROCOOMANSYRIA

BENINBOTSWANABURKINA FASOBURUNDICAMEROUNCAP VERTETHIOPIAGABONGHANAKENYALESOTHOMADAGASCARMALIMOZAMBIQUENAMIBIANIGERNIGERIARD CONGORWANDASENEGALSEYCHELLESSIERRA LEONESOUTH AFRICASRI LANKASWAZILANDTANZANIATHE GAMBIATOGOUGANDAZAMBIAZimbabwe

ARGENTINABELIZEBRASILCANADACHILECOLOMBIAEL SALVADORGUATEMALAGUYANAHAITIHONDURASMEXICONICARAGUAPARAGUAYREPUBLICA

DOMINICANAURUGUAYVENEZUELA


Annex 2: List of the countries that answered the second questionnaire:

AFRO AMRO EMRO EURO SEARO WPROKenyaBotswanaBurundiCameroonLesothoMaliMozambiqueNamibieSenegalTanzaniaUgandaRwanda

ArgentinaBrazilCanadaColombiaDominican

RepHaitiMexicoVenezuelaHonduras

Syria ArmeniaAzerbaijanCzech republicEstoniaFranceGeorgiaLatviaLithuaniaRepublic of MacedoniaSerbiaSlovakiaThe NetherlandsUnited Kingdom

BangladeshIndiaSri Lanka

VietnamMalaysiaLao PDR


32

Annexe 3: Comments received on the revised TB RR forms

1. Culture and Drug Susceptibility Test............................................................................................... 332. Variables on HIV..............................................................................................................................333. Age breakdown in the quarterly report on TB case registration......................................................354. Block 1 in quarterly report on TB treatment outcomes....................................................................355. Quarterly order form for TB drugs and laboratory supplies............................................................356. Electronic system?............................................................................................................................367. Other comments................................................................................................................................368. Positive aspects of the revision.........................................................................................................369. Negative aspects suggestions to maintain quality data...............................................................38

Here are classified the comments received with the answers to the questionnaires on the revision of the TB RR forms (June 2006).

1. Culture and Drug Susceptibility Test

Dr. Andrei Mosneaga; Team Leader of Regional TB Control Programme South Caucasus, GOPA/EPOS Consultants (under KfW financing); (Armenia, Azerbaijan and Georgia): "The revision is very useful is the sense that it enables to better address culture and DST needs (especially important for countries of the Former Soviet Union that have high burden of drug resistance). But having drug resistance data on individual treatment cards in conditions where DOTS-Plus is not available may create problems with choosing the right tactics".

Dr. Sitienei ; deputy Head, NLTP ; (Kenya): "We do not do culture for all TB cases but for multi-drug resistant TB. Culture is done for all patients started or to be started on re-treatment for drug sensitivity".

2. Variables on HIV

EURO

Dr. Andrei Mosneaga; Team Leader of Regional TB Control Programme South Caucasus, GOPA/EPOS Consultants (under KfW financing); (Armenia, Azerbaijan and Georgia): "Addition of TB/HIV data when TB/HIV collaborative activities are not in place may lead to confusion, inaccuracies and therefore undermine quality. As in these three countries, no TB/HIV collaborative activities are in place at the moment, TB/HIV variables will be considered for inclusion at a later stage, after TB/HIV activities are introduced and scaled up (in about 2 years from now). It is now considered to have TB/HIV information in "Remarks" field".

Dr. Che ; TB Surveillance coordinator ; (France): "There is no link between the TB data that are not anonymous and the data on HIV/AIDS that are anonymous for the patients".

Dr. Vija Riekstina; Head of the National TB Registry; (Latvia): "HIV variables will be include in Jan. 2007. For HIV we will include the results of the test (positive, negative, test not done). Only


33

this information will be included in the TB database. The next step we will relate this information from our database to information from HIV registry and make separate database for TB/HIV cases".

Dr. Ivan Solovic ; MD,PhD/NTP manager ; (Slovakia): "The NTP have and provide data on HIV to WHO but legislation doesn’t allow to include information on HIV in the TB reports".

Dr. Romanus (Sweden): "HIV information is not included in the TB reports depending on the legislation, not to report HIV with identity".

Dr. Peter Helbing ; MD. Responsible for TB surveillance in Switzerland: "Legislation doesn't allow to include HIV information in the TB reports. A rough estimate of co-infection is available from Aids-defining TB in the anonymous Aids notifications. They cannot be linked on a nominal per patient basis to the TB notifications".

Dr. John Watson ; HPA TB Programme Manager ; (United Kingdom): "Data on HIV are collected via HIV surveillance systems".

AMRO

Dr. Joseney Santos ;NTP Manager ; (Brasil): "Data on CPT and ART are not included in the TB reports but provided by the National HIV/AIDS Program (PNAIDS)".

DR. Derek Scholten ; Acting Senior Epidemiologist ; (Canada): "HIV information is not collected by the TB programme, nor the HIV/AIDS programme at national level".

Dr. Alexis Guilarte ; NTP Manager ; (Venezuela): "It's important to find a consensus with HIV/AIDS program which is being implemented".

AFRO

Donatien Nkurunziza ; NTP Manager ; (Burundi): "We have planned to include HIV variables in the forms when we will have implemented the TB/HIV collaborative activities with the HIV/AIDS program. We think that it would be very useful to include all data on TB/HIV co-infection in the notification forms because it will facilitate the health worker's task in health centres".

Dr. Joseph Imoko ; NPO/TUB, WHO Uganda: "It is worth debating why we shouldn't capture information on how many HIV positive cases were started on CPT right from the beginning. Current form only captures this at treatment outcome stage. But I think it would be useful to capture it immediately as it would help the managers at various levels of the program to take corrective action in those districts/units not starting deserving co-infected patients on CPT".

SEARO

Dr. D.F Wares and Dr. S.Sahu- MO(TB) and NPO(TB), WHO India (India): "Recording of HIV serostatus and/or such other data on records of a patient is against the policy of both the National HIV/AIDS and TB Control Programmes".


34

WPRO

Dr. Phouvang Vanuichito ;Dyputy Director ; (Lao PDR): "We include HIV variables in register but not in treatment card for confidentiality reasons".

3. Age breakdown in the quarterly report on TB case registration

Dr. Sitienei ; deputy Head, NLTP ; (Kenya): "Smear not done is only for PTB>15 years".

4. Block 1 in quarterly report on TB treatment outcomes

Breakdown of treatment outcomes

Dr. Andrei Mosneaga; Team Leader of Regional TB Control Programme South Caucasus, GOPA/EPOS Consultants (under KfW financing); (Armenia, Azerbaijan and Georgia): "One of the main problem they are dealing with the revision of the TB RR forms is that the large number of re-treatment cases are often misclassified as the RR forms do not provide yet enough detail for re-treatment cases (i.e. re-treatment smear negative and chronic cases). The revision of the TB RR forms enables a better explanation of re-treatment cases although not exhaustive enough".

Dr. Joseney Santos ;NTP Manager ; (Brasil): "The follow-up of transfer and the condition of excluding treatment failure cases following the norms established by the NTP are problematic".

Dr. Sitienei ; deputy Head, NLTP ; (Kenya): "All patients started on re-treatment are reported as a whole - without disaggregating as previously treated, etc"

Instructions concerning Category IV

Dr. Andrei Mosneaga; Team Leader of Regional TB Control Programme South Caucasus, GOPA/EPOS Consultants (under KfW financing); (Armenia, Azerbaijan and Georgia) informed us that :"Armenia, Azerbaijan and Georgia are undergoing revision of the TB RR forms, which will be finalized in September 2006. These countries plan to include the patients who switched to Cat. IV not in "Treatment failure" but in an additional category entitled "Transferred in Category IV" (after MDR-TB treatment starts)".

Dr. Vija Riekstina; Head of the National TB Registry; (Latvia): "Treatment outcome for cases switched to Cat. IV is "still on treatment", the final outcome I add from MDR-TB database".

5. Quarterly order form for TB drugs and laboratory supplies

Dr. Andres Hernandez, NTP Mexico: "The order form for drugs is at the regional level to the states level and these ones give the anti-TB drugs to the local units and the order is based on the


35

monthly incidence of all TB cases of the previous year. Same for the order form for laboratory supplies".

Dr. Sitienei ; deputy Head, NLTP ; (Kenya): "The national program is moving away from service statistics for ordering anti TB drugs to consumption data. Although at the moment, CPT and paediatric consumptions are not captured, the tools are now being revised to capture the new developments. Kenya uses patient packs. The program is now in the process of repackaging these drugs at the periphery".

6. Electronic system

Andres Hernandez (Mexico). EpiInfo enables to generate the reports for each variable of the register and to elaborate the cohort analysis (…) Since last year, we are working on a web platform which should be finished this year. These two systems will be parallel till the web platform shows its good operation.

7. Other comments

Dr Maryse Wanlin ; Directeur médical Lung and Tb Association BELTA ; (Belgium):"The draft version of the TB RR forms proposed by WHO and partners is very different from the document standardized by EURO TB to collect TB data. In Belgium, there is no NTP since all the activities of tuberculosis control are incorporated in the existing national health system. The collaboration with medical officers is not always easy and the data and information on the TB patients' follow-up are very poor, sometimes absent. However, we try to follow as good as we can the MDR-TB cases".

Dr. Vija Riekstina; Head of the National TB Registry; (Latvia): "We have 2 individual database at the National TB registry: one for all registered cases and an other for MDR-TB cases. As we have an individual database and all registered cases are entered, we do not use any quarterly reports form districts to registry on case finding".

Dr. Stefan Talevski ; NTP Manager ; (Republic of Macedonia): "Main problems are political because to change TB forms, it takes two years to have approval from Ministry of Health. Coordinators have too much administrative work and this is discouraging. We need clerk for administration affairs".

Dr. John Watson ; HPA TB Programme Manager ; (United Kingdom): "UK is not using standard WHO system for recording and reporting".

Dr. Connie Erkens ; Senior Consultant Tuberculosis Surveillance ; (The Netherlands): "We do not work with quarterly reports. We have a case-registration of all TB cases since 1993. All patients are registered by the districts (municipal health services) in the central database. Since 2005 registration is via internet- based registration form, combining diagnostic information with treatment results for each patient".

8. Positive aspects of the revision


36

Dr. Jiri Wallenfels ; Head of National TB Surveillance Unit ; (Czech Republic): "You get better picture of TB situation" + "Try to validate data from different sources".

Dr. Vija Riekstina; Head of the National TB Registry; (Latvia) : "The revision gives an idea which variables to include in the TB/HIV registry" + "For TB/HIV cases-data crosschecking with HIV registry".

Dr. Stefan Talevski ; NTP Manager ; (Republic of Macedonia): "Revision is good thing because we need new data and these ones have a good influence on NTP results". Dr. John Watson ; HPA TB Programme Manager ; (United Kingdom): "The positive aspects of the current plan to revise the surveillance system include the improvement in timeliness of reporting while maintaining data quality and the opportunity to collect additional information on known risk factors".

DR. Derek Scholten ; Acting Senior Epidemiologist, (Canada): "Revisions of the forms are designed to make reporting of TB more efficient and more accurate and relevant to stakeholders who use the information, both nationally and internationally. The addition and changes to some variables /elements allows for more detailed analysis/explanation of an epidemiological finding / trend by examining intervening /confounding variables in that association. Furthermore, changes to the method of reporting data element can clarify potential sources of error". yearly review of the methods for completing the forms with jurisdictions responsible for reporting (BMU).

Dr. Elizabeth Ferreira Guerrero ; NTP Manager ; (México). "The revision enables to identify areas an opportunities to improve the quality of the information".

Dr. Alexis Guilarte ; NTP Manager ;(Venezuela). "The revision improves the quality of the register and it is easier to realize the evaluation with more data and definitions of variables".

Donatien Nkurunziza ; NTP Manager ; (Burundi): "Thanks to revision, data collect is easier and it arises the issue on other aspects that could be treated in a next adaptation of the forms. Moreover, as there are more variables to analyse, we can see the problem globally".

Francois Outtou Tsala ; Coordinateur Adjoint/CSSSE ; (Cameroun): "The positive aspect of the revision is to include information on TB/HIV".

Dr. Sitienei ; deputy Head, NLTP ; (Kenya): "Thanks to revision, we are able to capture the information we need".

Dr. Letsie Mosilinyane ; Head Disease Control ; (Lesotho): "The revision enables to improve quality of data and to include new issues on TB/HIV collaboration. Moreover information on TB/HIV issues can be obtained easily".

Dr. Alimata Naco ; NTP coordinator ; (Mali): "The revision enables to have exhaustive data on the TB cases (mainly on SS+) and to facilitate the collect of exhaustive information on the TB/HIV co-infection".


37

Dr. Angelica Salomao ; NPO/TUB; A.I. TB Manager; (Mozambique): "The revision brings back motivation by a sort of collective discussion to find proper forms and ways to report TB/HIV".

Mrs. Maria Bock ; Programme officer NTCP ; (Namibia): "The revision enables to include more information on TB/HIV aspects. Moreover, we are now able to get information on the number of MDR TB patients in the country, and N° of TB patients who are HIV positive and receiving ART" Keep on training staff to collect accurate data.

Dr. Michel Gasana; NTP Manager; (Rwanda):"The revision enables to get more information on testing HIV and to know the treatment outcome of cases who are not SS+ and children".

Dr. D.F Wares and Dr. S.Sahu- MO(TB) and NPO(TB), WHO India (India): "Data on paediatric cases are now available. Much more data on staffing levels and training status available.Indicators of quality of care indicators has enabled the programme manager to analyse other indicators better. For example treatment outcome results with DOT rates".

Dr. Fadia Me'emary ; NTP Manager ; (Syria): "It will be an accurate report and we will have a complete view of TB programme performance".

Dr. Fuad Bin Hashim ; Principal Assistant Director (TB/Leprosis) ; (Malaysia): "More systematic reporting flow and standardized case registration at district level and not just treatment centre, more treatment outcome oriented and comparable to other countries. Data on patient and laboratory services stresses upon achievement of DOTS strategies".

9. Negative aspects suggestions to maintain quality data

Dr. Connie Erkens ; Senior Consultant Tuberculosis Surveillance ; (The Netherlands): "The main problem is the timeliness of reporting, especially for treatment results".

Dr. John Watson ; HPA TB Programme Manager; (United Kingdom): "The most difficult in our revision process is to get consensus from the stakeholders, software development and data linkage with reference laboratory information. Asking for too much information is likely to compromise data completeness and accuracy. There is a need to keep things simple and to the minimum for the most relevant information that will be used to inform TB control and fulfil the aim of surveillance. The forms that are the most concerned are reports on TB case registration and treatment outcome". "Built in checks for data entry e.g must enter fields, contradictions or duplicates together with periodic audits".

Dr. Sequeira Maria Delfina ; Directora Asistente Tecnica ; (Argentina). "More there are variables to complete, worst is the quality of the completion. The main form concerned is the treatment card" "Supervise the analysis of the information required"

Dr. Ernesto Moreno Naranjo ; Director TBC, Minsal ; (Chile). "As staff is often rotating, there is a difference in the way to analyse the data. If the forms are designed in a unclear way, there is a risk for staff to receive incomplete information, not objective and not realistic, and this generates misinformation and avoid taking adequate decisions" "Need to validate the forms, advocacy and capacity of retro-seeing the data".


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Dr. Richard D'Meza ; NTP Manager ; (Haïti): "Reluctance in change. Lack of financial support for training, printing and multiplication of the monitoring tools".

Belkys Marcelino ; Epidemiologist ; (Dominican Republic): "There is very little space to realize the register. This is difficult in the forms to realize additions".

Dr. Alexis Guilarte, NTP Manager ; (Venezuela): "At local level, health workers are complaining of the too large amount of data to register, because not only they have to report data in the tuberculosis register but also for other programs and health activities".

Dr. Sitinei ; deputy Head, NLTP ; (Kenya). "What is the most difficult for the revision is to capture all the information needed by partners and ministry and the time taken for training and human resource problem. Moreover, there has been more work to the health care worker who is already working to fill other forms making it hard to fill data. The forms that are the most concerned are the treatment facility registers and the patient record cards" "Training of staff to motivate them and increase the workforce by training and using data clerks".

Dr. Letsie Mosilinyane ; Head Disease Control ; (Lesotho). "Main problems are: inconsistence in reporting. Registers are not being filled correctly. There is delay in adapting the new forms and health workers are reluctant to use the new forms. There is too much information in the new forms" "Conduct regular workshops on data".

Dr. Alimata Naco (Mali). "Workload is increased because of the numerous information to collect, mainly for large centres for diagnosis because human resources are insufficient. The forms that are the most concerned are the treatment card, the quarterly reports on TB case registration and treatment outcomes" "In the absence of complementary human resources, we try to motivate the existing ones".

Dr. Angelica Salomao ; NPO/TUB; A.I. TB Manager; (Mozambique): "The materials are not available in Portuguese. We have to adjust the language to all levels and category of existing staff and it is not easy to stick to international standards".

Dr. Helene Diop ; National supervisor ; (Senegal): "During the first year, the data quality could decrease because definitions are not correctly known and in the large centres, workload will increase a lot and could decrease the quality of data collect" "Reinforcement of the supervision at all levels".

Dr. S. Egwaga ; Program Manager; (Tanzania) :"The main problems we are dealing with is to incorporate all current requirements for HIV and patient centred approach. The shortage of qualified personal at health facility level to understand and fill correctly all the information required. We lack of computers at provider level and competing need to minimize the number of forms filled at peripheral level through integration".

Dr. Emmanuel Nkiligi ; Data analysit ; (Tanzania): "Inclusion of new variables in recording forms make them clouded. Health workers in health facilities will have many forms and variables to fill in, with no proper training or supportive supervision may lead to incomplete or incorrect filled information" "Training of the health workers and provision of supportive supervision".


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Dr. Joseph Imoko ; NPO/TUB, WHO Uganda ; (Uganda). "We have already revised the forms. Issues were arriving at consensus, reprinting the new tools (registers and forms etc), reorienting the users to the new forms as get as getting all of them to always use the new format, but a few still sent in reports in the old format and this presents problems of summarizing and comparing district performance"."Workers need more time to fill out the forms; getting all workers to interpreting the various sections in a similar manner (partly related to the fact that the formats were introduced but no detailed guidelines were issued)". "The TB/HIV aspect (we set in a confusing manner); sputum conversion and lab workload aspect seem to be the least well understood and therefore filled in sections" "The most important think is to intensify support supervision and explain the importance of each section of data collection tools to the extent that the data collectors themselves can analyse and use their own data. Secondly, issue guidelines and review forms deleting the user unfriendly parts".

Dr. D.F Wares and Dr. S. Sahu, MO(TB) and NPO(TB), WHO India (India): "Implementing any change in the recording and reporting forms across a programme covering over 1.1 billion population is a major challenge. Introduction of any revised records and reports requires the training of large numbers of staff involved in TB control activities across the country. As all reporting from the district level upwards is done electronically, any revision of reports requires software development".

Dr. Fuad Bin Hashim ; Principal Assistant Director (TB/Leprosis) ; (Malaysia): "The present reporting received at national level do not contain details cross tabulation by smear type and HIV status and special groups (eg. Diabetic, Inmate in prison and drug rehab centre). Reporting is done manually (no dedicated computerized software), time consuming (many steps in reporting i.e. from treatment centre and lab to district and district to state and later states to national) and received late (6 months late due to quarterly reporting system, but beginning 4th quarter of 2005, basic data on TB cases are send up monthly)". "Maintaining good TB register at district level and maintaining good understanding of reporting definition and format among staff at treatment centre and district health office".

Dr. Dinh Ngoc Sy ;NTP Manager ; (Vietnam): "The main problems are related to TB/HIV activities (N° of all TB cases tested for HIV before, or during treatment outcome; number of all TB cases tested positive for HIV) and treatment outcomes for sputum smear-negative and not done"

Special suggestions

Dr. Alexis Guilarte ; NTP Manager ;(Venezuela): "We have finished to update our forms, we are now in the process of designing the forms. It would be very helpful to see the revision process of other countries".

Dr. Andrei Mosneaga; Team Leader of Regional TB Control Programme South Caucasus, GOPA/EPOS Consultants (under KfW financing); (Armenia, Azerbaijan and Georgia): "Lack of unique identification number that makes the link between laboratory register and district register not functional and also may lead to double registration of transferred patients Introduction of a unique patient identification number/code, with the link to residence, service delivery site (start and follow-up)".


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Annexe 4: Composition of the Expert Group on Recording and Reporting

Writing Group Kayla Laserson (CDC, Atlanta), René L’Herminez (KNCV TB Foundation), Pierre-Yves Norval (Coordinator of the Expert Group on Recording and Reporting, Stop TB Department, WHO), Arnaud Trébucq (The UNION)

Expert Group on Recording and Reporting Einar Heldal (WHO Consultant), Kayla Laserson (CDC, Atlanta), René L’Herminez (KNCV TB Foundation), Arnaud Trébucq (The UNION), Michael Rich (WHO Consultant) Jeong Ym Bai (Ministry of Health South Korea), Mao Tan Eang (Ministry of Health, Kingdom of Cambodia), Rober Gie (Stop TB Paediatric sub-group) Vahur Hollo (Ministry of Health, Estonia), Chris Seebregts (Medical Research Council, South Africa)Mirtha Del Granado, Sergio Arias (Regional Office for the Americas), Samiha Bagdadhi, Ridha Djebeniani (Regional Office for the Eastern Mediterranean), Philippe Glaziou, Pieter van Maaren (Regional Office for the Western Pacific), Suvanand Sahu (Regional Office for South-East Asia), Jerod Scholten (Regional Office for Europe), Oumou Bah-Sow (Regional Office for Africa), Robert Matiru, Fabienne Jouberton (Stop TB Partnership, Global Drug Facility).Mohamed Aziz, Léopold Blanc, Daniel Bleed, Karin Bergström, Knut Lönnroth, Malgosia Grzemska, Mehran Hosseini, Pierre-Yves Norval (Coordinator of the Expert Group on Recording and Reporting), Paul Nunn, Alasdair Reid, Brian Williams (Stop TB Department, WHO),Christopher Tantillo, Philippe Veltsos (Information Technology and Telecommunication, WHO)


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