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“What does this mean?” How to interpret what is happening in your ART programme

A handbook for ART programme managers who attended the ART Data Use Course, November 2009

July 2010

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Acknowledgements This handbook was developed by Dr Saul Johnson and Ms Jennifer Baumann of Health and Development Africa (Pty) Ltd with financial support from UNAIDS through the Technical Support Facility Southern Africa. Acknowledgement and much gratitude also go to Dr Francesca Conradie, who played a critical role in brainstorming the indicators and interpretations thereof.

Š Health & Development Africa (Pty) Ltd, 2010 Sunnyside Ridge Park 1st floor, Building B Sunnyside Ridge Reproduction of this material is not allowed unless permission is given by the author. Published by Jacana Media PO Box 291784, Melville 2109 Tel: +27 11 628 3200 Job no: 001233 ISBN: 978-1-77009-901-2 Printed and bound by Creda Communications

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Contents Table of Figures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . iv 1. Background to this Handbook and the ART Data Use Course. . . . . . . . 1 Why data use?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Who is this handbook for? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 What is contained in this handbook? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 How is this handbook structured? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 How to use the algorithm . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 How can you use this handbook?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 2. Coverage Indicators . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 INDICATOR #1: Percentage of adults that require ART who are enrolled in the programme . . . . . . . . . . . . . . . . . . . . . . . . 12 INDICATOR #2: Percentage of health facilities that offer ART . . . . . . . . . 19 INDICATOR #3: Percentage of people enrolled with a CD4 count of <100. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22 3. Outcome Indicators . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 INDICATOR #1: Percentage of people in the ART programme that: a) died and/or were lost to follow-up, b) were well, c) switched regimens, or d) whose status remained the same. . . . . . . . . . . . . . . . . . 27 INDICATOR #2: Percentage of the cohort who were well and stable after one year of treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 4. TB/HIV Collaborative Indicators . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 INDICATOR #1: Percentage of TB patients that were tested for HIV . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 INDICATOR # 2: Percentage of HIV-positive TB patients that receive ART. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37 5. Health System Indicators. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40 INDICATOR #1: Percentage of ART sites experiencing stock-outs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42 INDICATOR #2: Ratio of ART treatment clinicians to patients . . . . . . . . . 44 INDICATOR #3: Percentage of patients officially transferred out to other service sites. . . . . . . . . . . . . . . . . . . . . . . . . . . . 47 6. References and Endnotes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50

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Table of Figures Figure 1: Example of the indicator description. . . . . . . . . . . . . . . . . . . . . . . . .3 Figure 2: Example of the algorithm. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5 Figure 3: Interpreting changes in Coverage Indicator #1 (Scenario 1) . . . . . .15 Figure 4: Interpreting changes in Coverage Indicator #1 (Scenario 2) . . . . . .16 Figure 5: Interpreting changes in Coverage Indicator #1 (Scenario 3) . . . . . .17 Figure 6: Interpreting changes in Coverage Indicator #2 . . . . . . . . . . . . . . . .19 Figure 7: Interpreting changes in Coverage Indicator #3 . . . . . . . . . . . . . . . .22 Figure 8: Interpreting changes in Outcome Indicator #1 . . . . . . . . . . . . . . . .27 Figure 9: Interpreting changes in Outcome Indicator #2 . . . . . . . . . . . . . . . .30 Figure 10: Interpreting changes in TB/HIV Collaborative Indicator #1 . . . . .34 Figure 11: Interpreting changes in TB/HIV Collaborative Indicator #2 . . . . .37 Figure 12: Interpreting changes in Health Systems Indicator #1 . . . . . . . . . .41 Figure 13: Interpreting changes in Health Systems Indicator #2 . . . . . . . . . .43 Figure 14: Interpreting changes in Health Systems Indicator #3 . . . . . . . . . .46

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CHAPTER ONE

Background to this Handbook and the ART Data Use Course

A

RT programmes collect a great deal of information about the patients that they treat, which in turn is reported to the National Health Authority and various funders. However, much of this data is not used by those who are in charge of the programmes. As health programme consultants, we wondered how to make this information more useful for those who are collecting it â&#x20AC;&#x201C; can we incorporate the use of our data on a regular basis to help us better understand and improve our ART programmes? We decided to develop a course that goes beyond basic training in Monitoring & Evaluation, one which focuses on data use specific to ART programmes, as much of our internal and external resources are diverted into this life-saving treatment programme. The pilot of this course was conducted in Windhoek, Namibia, with ART Programme Managers from nearly all districts across the country, in conjunction with the RM&E Unit at the Ministry of Health and Social Services: Directorate Special Programmes. This handbook has been developed as one of the outputs of this ART course pilot. 11

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Background to this Handbook and the ART Data Use Course

Why data use? While there are many steps leading up to the point where one can use data effectively, we decided on data use as the core focus of this course. Of course, properly managing the data that we deal with through the entire process of our daily work is a vital first step. Everything from collecting data, to storing it, aggregating it, and data analysis, are all important steps. The quality of the information that we collect is also critical to its usefulness. However, for the purposes of this course and handbook, we focus on interpretation of what the data may be telling us, and how to translate this into practical application to improve the ART programme.

Who is this handbook for? The handbook is geared towards Programme Managers of ART sites at district level. However, any other programme member at the ART service site may benefit from understanding the indicators that measure ART programme performance. The indicators contained herein focus on the minimum standard of quality care in any ART programme.

What is contained in this handbook? The function of HIV and ART services is to identify HIV-infected individuals, ensure that they enter care and then keep them in care. The only way we can determine if our programme is functioning well and providing the best quality service is to measure our progress. We do this by checking the programmeâ&#x20AC;&#x2122;s status against a set of indicators. We have considered the range of internationally recommended ART programme indicators and have selected a few of the top indicators that we feel will best reflect ART programme success in achieving its goals. In some instances, where we felt that the international community was lacking, we have proposed a variation of the international indicator, based on the experience in South Africa. We focused on only three areas of ART programmes: programme coverage, programme quality and the health system.

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Background to this Handbook and the ART Data Use Course

Not all of the indicators that we have suggested will apply to each country, or even each sub-region; however, the purpose is to give the reader some “food for thought”. The intent is to help programme staff to be better equipped to monitor the quality of the services that they provide; to set realistic goals for the programme; and to monitor the programme’s achievements.

How is this handbook structured? In the following pages, some key indicators have been selected under each of the three programme areas. We have explained the rationale for this indicator, and defined the numerator and denominator – and in some instances we have even explained how to calculate these. We also included other information, such as the data source, frequency of reporting, recommended targets (if applicable) and some suggested ways to present the indicator results. The indicator description section looks something like this: Figure 1: Example of the indicator description

Coverage Indicator #1: ART therapy and monitoring Indicator #1: Percentage of adults that require ART who are enrolled in the programme Rationale ART has been shown to reduce mortality among those HIV infected. What we need to estimate is how many of those infected who live in your community are actually on treatment. To estimate that number is not always easy. Also, not all infected individuals need to be given ART. That proportion is dependent upon when treatment is initiated in your area, i.e. local and regional guidelines. This indicator is important to monitor coverage of the ART service and the ability of the health system to meet national and/or international coverage targets.

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Background to this Handbook and the ART Data Use Course

NB: Remember that this target may change and there may seem to be a drop in enrollment when entry levels for ART initiation are changed. Definition of the indicator: numerator Numerator: Number of adults currently on treatment How to calculate the numerator: Add the number of people enrolled in the programme, subtracting those who have died, those that were lost to follow-up and those transferred out (we are not interested in numbers of people who were ever enrolled in the programme, only those currently enrolled). Counting those currently enrolled is a more accurate count of your service coverage than is counting those who were ever enrolled. Data source ART registers Definition of the indicator: denominator Denominator: Estimated number of adults with advanced HIV infection How to calculate the denominator: There are a few methods that can be used to calculate this. We present three of these below. It is ideal that the ART programme uses one method only and universally at all sites for the denominator, or else results will not be comparable across sites.

Following the description of the indicator, a set of algorithms have been developed to aid the thought process about certain outcomes that may be faced by the programme. The algorithm is on the following page.

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How to interpret changes: Scenario 1 1. Check the numbers for accuracy.

The ART site is consistently NOT enrolling enough people to meet its targets.

yes

2. Check for overall data quality and reliability. 3. Check that reportirg is happenirg on time.

no

1. Check ART waiting lists for eligible people in need of treatment.

yes

2. Test all TB patients and refer HIV+ patients to the ART programme. 3. Test pregnant women for HIV and refer HIV+ pregnant women to the ART programme.

no

4. Review the referral system from in-patient wards to the ART programme. 1. Review the number of patients who died or are lost to follow-up, and respond appropriately. 2. For other specific actions, refer to Outcome Indicator #1 (page 24).

Is the data correct?

Are all eligible people being enrolled in the programme?

Background to this Handbook and the ART Data Use Course

Figure 2: Example of the algorithm

yes

no

Is the ART service retaining people? (i.e. are people surviving?)

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Background to this Handbook and the ART Data Use Course

How to use the algorithm STEP 1: We begin by looking at a possible outcome that ART sites may experience â&#x20AC;&#x201C; this is located in the purple box at the top of the picture.

STEP 1: Look at indicator results

The ART site is consistently NOT enrolling enough people to meet its targets.

STEP 2: We then detail a brief step-by-step process to help the reader think through and interpret what the data may be revealing. The reader should consider each possibility (question) located in the yellow boxes. Each question has a correlating set of action points to consider located in the blue boxes to the left of the yellow boxes.

1. Check ART waiting lists for eligible people in need of treatment. 2. Test all TB patients and refer HIV+ patients to the ART programme. 3. Test pregnant women for HIV and refer HIV+ pregnant women to ART programme. 4. Review the referral system from in-patient wards to the ART programme.

Actions to consider

no

STEP 2: Consider the possibilities.

Are all eligible people being enrolled in the programme?

yes

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Background to this Handbook and the ART Data Use Course

STEP 3: If the action points in the first blue box do not apply, then the question in the yellow box is probably not the problem. The reader should continue down the chart to the next yellow box and consider that question and set of proposed actions. Continue along in this manner until all possibilities have been considered and exhausted. Feel free to add your own possibilities!

no

STEP 3: If this possibility is being addressed, then move on to the next one.

1. Review the number of patients who died or are lost to follow-up, and respond appropriately. 2. For other specific actions, refer to Outcome Indicator #1 (pgage 24).

no

Are all eligible people being enrolled in the programme?

yes

Is the ART service retaining people? (i.e. are people surviving?)

Each algorithm is designed to point out possible factors that should be considered and areas that may need to be addressed in order to get the programme back on track. This may include issues that are under the direct control of the ART programme (i.e. implementing ART procedures properly) to those outside the realm of the programme, but still related to how the programme functions (i.e. are our community mobilisation efforts working?) While these are certainly not all of the possibilities, we feel that some of the major concerns have been highlighted.

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Background to this Handbook and the ART Data Use Course

How can you use this handbook? The aim of this course is not to add to the amount of work for programme staff. It is rather to help them to critically analyse the information that is already recorded and use it to interpret what is happening in their programme. If they do this, they can improve their per formance. Accurate information and the ability to critically assess and understand what this means is why we collect data in the first place. This information can be used in a number of ways: to motivate programme staff when goals are achieved; to identify the challenges faced and develop strategies to overcome them; or to compare one programme to another and learn from shared experiences.

Using your data We strongly urge you to get into the practice of critically looking at what the data is telling you, and to take every opportunity to interrogate this with your programme staff, supervisors and other partners or stakeholders. This can easily be incorporated into your regular work in a number of ways: • Use regular staff meetings at your site to discuss what the data are telling you: brainstorm different ideas about why this may be happening, and how to resolve any issues that need to be addressed. • Use regular quarterly meetings (either for your sub-district or district, whichever applies) to present what was discussed at your staff meeting and how this is affecting your facility. Try to see how other facilities or sites may be affected, and check if they are experiencing the same things. • Present the data and findings in your reports to your line manager, supervisor, department head or to other partners, to share the experience (successes and challenges) of what is happening at your site. • Use your findings to inform your community about HIV, TB and ARV treatment programmes.

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Background to this Handbook and the ART Data Use Course

• Use the data and findings to lobby for things, such as: having additional resources for the facility or programme; and changing or adjusting working hours or other work-related factors that may make your job easier and help you to better respond to what is happening in your programme. These are only a few suggestions of how to incorporate data analysis and data use into your everyday routine. Feel free to be as creative as possible so that using the data you collect can be part of everybody’s normal routine.

The only way we can determine if our programme is functioning well and providing the best quality service is to measure our progress. We do this by checking the programme’s status against a set of indicators.

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CHAPTER TWO

Coverage Indicators

T

o determine if we are achieving what the programme is intending, we need to look at whether our interventions are making a difference and if they are being done on a large enough scale. In order to do this, we consider the coverage of the intervention. Although this can be determined through a large, population-based survey, coverage can also be assessed in terms of the number of people reached with services if the denominator for the target population can be calculated or reliably estimated.

Coverage can be determined by counting the number of people reached with services if the denominator (target population) can be calculated or estimated.

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• number of people reached with services • number of people trained • number of service points supported This information should be collected through routine reporting systems (i.e. programme reports or ART registers). This is to ensure frequent reporting and monitoring on what the programme is achieving. This data can also be used to supplement and validate any periodic surveys that are conducted.

Coverage Indicators

Countries are encouraged to collect coverage information for the following activities:

This section looks at the top three coverage indicators for ART programmes: • Percentage of adults that require ART who are enrolled in the programme • Percentage of health facilities that offer ART • Percentage of people enrolled with a CD4 count of <100 Each of the coverage indicators are broken down and followed by the corresponding algorithms, which describe certain possibilities faced by the programme and some suggested action steps to take.

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Coverage Indicators

Coverage Indicator #1: ART therapy and monitoring INDICATOR #1: Percentage of adults that require ART who are enrolled in the programme Rationale ART has been shown to reduce mortality among those infected with HIV. What we need to estimate is how many of those infected who live in your community are actually on treatment. To estimate that number is not always easy. Also, not all infected individuals need to be given ART. That proportion is dependent upon when treatment is initiated in your area, i.e. local and regional guidelines. This indicator is important to monitor coverage of the ART service and the ability of the health system to meet national and/or international coverage targets. NB: Remember that this target may change and there may seem to be a drop in enrollment when entry levels for ART initiation are changed. Definition of the indicator: numerator Numerator: Number of adults currently on treatment How to calculate the numerator: Add the number of people enrolled in the programme, subtracting those who have died, those that were lost to follow-up and those transferred out (we are not interested in numbers of people who were ever enrolled in the programme, only those currently enrolled). Counting those currently enrolled is a more accurate count of your service coverage than is counting those who were ever enrolled. Data source ART registers Definition of the indicator: denominator Denominator: Estimated number of adults with advanced HIV infection

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There are a few methods that can be used to calculate the denominator. We present three of these below. It is ideal that the ART programme uses one method only and universally at all sites for the denominator, or else results will not be comparable across sites.

Coverage Indicators

How to calculate the denominator:

OPTION 1 Use model (like ASSA or Spectrum) projections of the number of adults who need ART. Use a model that has been developed for your region/province/district; or extrapolate from a national model, if one is available. The assumption is that about 20% of those who are HIV infected will need to have ART. OPTION 2 Calculate a rough estimate: The adult population X the adult HIV prevalence X 20% (here again 20% is taken as a general estimate of people who need ART). Example for calculating denominator option 2: Adult population 18+ yrs (1,120,000) X adult HIV prevalence (17.8%) X adults in need of ART (20%) 1,120,000 X 17.8% X 20% = 39,872

# of adults with advanced HIV infection

If you know your adult population and know the HIV prevalence for the area of interest (i.e. district, etc), use these figures and simply assume a proportion of these (20%) are in need of ART. OPTION 3 Use actual data sources: numbers from TB services, in-patient ward, ART waiting list, any VCT services (government and communitybased VCT, such as large workplace programmes or New Start). Try to estimate using real community data of people who are seen in 13

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Coverage Indicators

some way by a health service who have tested HIV positive or who you think need ART. • TB services: number of TB incident cases X 30–60%. This is dependent upon the HIV prevalence in the adult population. If your area has a high HIV prevalence (i.e. 25% prevalence and above), you could use 60%. If your area has a low HIV prevalence (i.e. less than 15% prevalence), you could use 30%. • In-patient wards: patients testing HIV positive; those presenting with opportunistic infections. • Antenatal clinics: HIV prevalence for your area X 20% (here 20% is used as an estimate of HIV-positive adults in need of ART). • VCT: use around 20%, depending on the nature of the VCT site, i.e. the percentage could be higher if attached to a clinic and patients are going because they feel sick. NB: The pool of untreated people may stay the same if incidence stays the same. However, over time, as people are captured early enough and retained in treatment, numbers on treatment will grow. Choose whichever percentage is applicable to your area and situation; however, maintain its use to compare trends over time. Data source As described above, these would be your country’s projected population growth, projected ART need, HIV prevalence from your sentinel surveillance, TB registers, hospital admission records, ANC records, and VCT records. Frequency of reporting Quarterly

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Suggested ways to present the data • Disaggregate by sex (this is useful here as it can show numbers of females absorbed into ART from antenatal clinics; or an increase in male usage of services). • Trends over time • Against a target • Compare regions/provinces/districts

Coverage Indicators

Indicator target 80% of the target population

Coverage can be determined by counting the number of people reached with services if the denominator (target population) can be calculated or estimated.

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Coverage Indicators

Figure 3: Interpreting changes in Coverage Indicator #1 (Scenario 1)

1. Check the numbers for accuracy.

The ART site is consistently NOT enrolling enough people to meet its targets.

yes

2. Check for overall data quality and reliability. 3. Check that reporting is happening on time.

no

1. Check ART waiting lists for eligible people in need of treatment.

yes

2. Test all TB patients and refer HIV+ patients to the ART programme. 3. Test pregnant women for HIV and refer HIV+ pregnant women to the ART programme.

no

4. Review the referral system from in-patient wards to the ART programme. 1. Review the number of patients who died or are lost to follow-up, and respond appropriately. 2. For other specific actions related to quality of ART services, refer to the algorithm for Outcome Indicator #1 (page 30).

Is the data correct?

Are all eligible people being enrolled in the programme?

yes

no

Is the ART service retaining people? (i.e. are people surviving?)

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1. Check the numbers for accuracy.

Percentage of adults enrolled in ART is increasing and then plateaus

yes

2. Check for overall data quality and reliability. 3. Check that reporting is happening on time.

no

Coverage Indicators

Figure 4: Interpreting changes in Coverage Indicator #1 (Scenario 2)

Is the data correct?

yes 1. Investigate the need for more staff at your existing ART sites.

no

2. Increase the number of ART service sites.

Is the capacity of your health services adequate for the demand?

yes Check the calculations of your target population (those HIV+ people who are in need of ART); adjust your targets if necessary.

no

Are your coverage targets appropriate?

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Coverage Indicators

Figure 5: Interpreting changes in Coverage Indicator #1 (Scenario 3)

1. Check the numbers for accuracy.

Percentage of adults enrolled in ART is increasing rapidly

yes

2. Check for overall data quality and reliability. 3. Check that reporting is happening on time.

no

4. Check if your targets have been adjusted to meet the new demand. 1. Increase the capacity of ART sites (i.e. more trained staff) to avoid overloading. 2. Increase the number of ART sites.

Is the data correct?

yes

no

Has the number of ART sites stayed the same?

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INDICATOR #2: Percentage of health facilities that offer ART Rationale This indicator measures the capacity of the health system to respond to the needs of providing ART across the country or region. It is important to monitor the roll-out plans of ART service sites. This is necessary especially in light of the amount and variety of funding sources that are invested in supporting ART, which may contribute to financial instability of the overall programme. This may change over time as the level of facilities accredited to provide ART changes.

Coverage Indicators

Coverage Indicator #2: ART therapy & monitoring

It is also important to maintain enough service sites due to the chronic nature of the illness that requires long-term, uninterrupted treatment. Definition of the indicator: numerator and denominator Numerator: Number of facilities currently offering ART according to country guidelines Denominator: Number of facilities that should be offering ART according to country guidelines/ART roll-out plans Data source The countryâ&#x20AC;&#x2122;s Ministry of Health (or other Ministry) planning department; ART roll-out plans Reporting frequency Quarterly in new programme; six-monthly or annually in an established programme

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Coverage Indicators

Indicator target 80% of the targeted population Suggested ways to present the data • Disaggregate by level of facility • Trends over time • Compare regions

To determine if we are achieving what the programme is intending, we need to look at whether our interventions are making a difference and if they are being done on a large enough scale.

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1. Check the numbers for accuracy.

Percentage of health facilities that offer ART is stagnant or decreasing

yes

2. Check for overall data quality and reliability. 3. Check that reporting is happening on time.

no

Coverage Indicators

Figure 6: Interpreting changes in Coverage Indicator #2

Is the data correct?

yes Investigate what could be preventing sites from opening (i.e. lack of funds, inadequate numbers of trained staff, inadequate supplies or infrastructure).

no

Have there been new sites accredited since the last reporting period?

yes Investigate the capacity of existing sites and plan to increase that capacity accordingly (i.e. numbers of trained staff, supplies or infrastructure).

no

Are all current ART sites open and functioning well?

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Coverage Indicators

Coverage Indicator #3: ART therapy and monitoring INDICATOR #3: Percentage of people enrolled with a CD4 count of <100 Rationale A low CD4 count is a poor prognostic marker and/or implies the presence a WHO Stage IV condition. Morbidity and mortality increase with more advanced disease: more drug toxicities occur; and immunity reconstitution inflammatory syndromes (IRIS) can occur. There are possible drug interactions when concurrent opportunistic infections also need to be treated (i.e. TB treatments and fluconazole). This is both a service indicator and a public health indicator. It shows us how sick the people are when they arrive for treatment. This is linked to an active VCT service with communication programmes with linkage to quality care by a welcoming ART service provider. It is focused on long-term tracking and tells us how to get patients in for treatment, how long they are waiting to get into treatment, and how well the HIV programme is integrating with other services. While there may be levels set, as the service matures, there should be a decrease in the proportion of people that present with a late stage of the disease. Definition of the indicator: numerator and denominator Numerator: Number of people enrolled with a CD4 count of <100 and/or the presence of a WHO Stage IV condition Denominator: Total number of all people enrolled in the programme

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Add the number of people enrolled in the programme, subtracting those who have died, those that were lost to follow-up and those transferred out (we are not interested in numbers of people who were ever enrolled in the programme, only those currently enrolled). Counting those currently enrolled is a more accurate count of your service coverage than is counting those who were ever enrolled.

Coverage Indicators

How to calculate the denominator:

Data source Patient records; ART register Reporting frequency Quarterly Indicator target No more than 30–40% of people enrolled should have a CD4 count of <100. This proportion should decrease with time (i.e. more people enrolling with higher CD4 counts, or CD4 >100). Suggested ways to present the data • Disaggregate by sex • Trends over time • Compare regions

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Coverage Indicators

Figure 7: Interpreting changes in Coverage Indicator #3

1. Check the numbers for accuracy.

Percentage of people enrolled with a CD4 count of <100 is high

yes

2. Check for overall data quality and reliability. 3. Check that reporting is happening on time.

no

yes

1. Check ART waiting lists for eligibility. 2. Test people coming in for VCT, ANC, STI and TB services for HIV, and refer to the ART programme.

no

1. Reduce waiting times for ART services.

no

1. Ensure appropriate community campaigns and messaging about early identification of HIV and treatment. 2. Sensitise auxiliary staff (lay counsellors, etc) and community health workers so they relay the same messages about testing and treating early.

Are patients who are already in health services enrolled in ART early enough?

yes

2. Adjust hours of operation to better accommodate patients. 3. Sensitise ART staff to issues of confidentiality, stigma and discrimination, etc.

Is the data correct?

Are patients who are already in health services enrolled in ART early enough?

yes

no

Do we have an effective HIV campaign focusing on early treatment?

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CHAPTER THREE

Outcome Indicators

O

utcome indicators measure progress towards the programme goals. They also often will show us something about the quality of the programme. Outcome indicators are normally fewer in number, and the information collected on them happens at longer intervals, such as annually or every 2â&#x20AC;&#x201C;3 years. Data collection occurs using routine monitoring systems, or special surveys can be used. One of the goals of any ART programme should be to increase survival among infected individuals.

ART programmes that use a patient tracking or monitoring system can be used to do a cohort analysis. This means that some segments of the population are viewed as a group, over time. This group is normally determined by something that they have in common â&#x20AC;&#x201C; in this case, it would be all of those patients that began treatment at the same time during a certain period (i.e. all patients starting treatment in the month of April 2010). We would then follow this one group and check the status of key treatment areas on a periodic basis, such as once every year. 25

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Outcome Indicators

This section looks at the top two outcome indicators for ART programmes: • Percentage of people in the ART programmes that: a) died and/or were lost to follow-up b) were well c) switched regimens d) whose status remained the same • Percentage of the cohort who were well and stable after one year of treatment Each of the outcome indicators are broken down and followed by the corresponding algorithms, which describe certain possibilities faced by the programme and some suggested action steps to take.

Outcome indicators measure progress towards the programme goals. They also often will show us something about the quality of the programme.

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INDICATOR #1: Percentage of people in the ART programme that: a) died and/or were lost to follow-up b) were well c) switched regimens d) whose status remained the same.

Outcome Indicators

Outcome Indicator #1: ART therapy and monitoring

Rationale This is a compound indicator that will inform us how well the ART programme and treatment adherence training and counselling is functioning. This indicator looks at all people enrolled on treatment for a period of 13 months and longer. Excluding the first-year cohort is applied as this time period is associated with more deaths than in following years; also more patients will be lost to follow-up in the second year.1 NB: It should be noted that the cohort analysis suggested here differs from that of the standard cohort analysis as recommended by WHO in their Patient monitoring guidelines for HIV care and antiretroviral therapy (ART), WHO, 2006. In these guidelines, cohort analysis takes a group of ART start-up patients who began ART in the same month – thereby concerning analysis with a “slice” of all patients on ART, comparing baseline characteristics of patients at 6 and 12 months of therapy, and thereafter on a yearly basis. The cohort analysis suggested here looks at a series of outcomes (i.e. the numerators listed below) for the total number of patients on ART for a period of 13 months and longer. This excludes the group of patients who are in their first year of treatment.

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Outcome Indicators

Definition of the indicator: numerator Numerator a) “died and lost to follow-up”: Number of people who have died plus the number of people who were lost to followup (as per the follow-up protocol) during the reporting period. Indicator guide: Around 20% of the total enrolled will be both dead and lost; after 2 years, around 60% will remain in the service.2 Numerator b) “were well”: Number of people with viral load suppression of <1 000 during the reporting period. Indicator guide: Aim for 85% viral suppression of the total cohort Numerator c) “switched regimens”: Number of people who switched regimens during the reporting period. Indicator guide: Count those who switched regimens only due to virological failure, not a single drug substitution for toxicity or pregnancy. The norm could range from 2–4% of the total annually.3 Numerator d) “status remained the same”: Number of people who did not have viral load suppression of <1 000 and who did not switch regimens during the reporting period. NB: This is the category of the remaining people enrolled in the programme for whom treatment is still being refined. Thus no viral load suppression is recorded in the reporting period and there is no need to switch regimens yet. Indicator guide: Difficult to determine, but important to track. Definition of the indicator: denominator Denominator: Total number of all people enrolled in the programme for a period of 13 months of treatment and longer

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Outcome Indicators

Data source ART registers Reporting frequency Six-monthly or annually Suggested ways to present the data • Disaggregate by sex • Trends over time • Compare regions

One of the goals of any ART programme should be to increase survival among infected individuals.

” 29

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Outcome Indicators

Figure 8: Interpreting changes in Outcome Indicator #1

Percentage of people enrolled in the ART programme that had died and were lost to follow-up is on a plateau or is increasing. Percentage of people with a viral load suppression of <1 000 stays the same or is decreasing. Percentage of people who switched regimens is increasing; viral loads are >1 000.

1. Check the numbers for accuracy.

yes

2. Check for overall data quality and reliability. 3. Check that reporting is happening on time.

no

1. Check staff training on national guidelines for ART.

Is the data correct?

yes

2. Verify that staff conduct appropriate drug monitoring. 3. Ensure patients are adequately informed about treatment adherence.

no

Are we providing the best quality of service?

4. Ensure patients are entering treatment early enough. 5. Emphasise a strong community system of patient follow-up.

Increase community awareness and action in supporting ART.

yes

no

Is our treatment campaign effective?

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INDICATOR #2: Percentage of the cohort who were well and stable after one year of treatment Rationale This indicator looks at two fundamental quality-of-life and treatment goals for a cohort of patients who have just passed the first year of treatment. This is a better measurement of health service delivery as it can easily uncover problems that can quickly be addressed.

Outcome Indicators

Outcome Indicator #2: ART therapy and monitoring

To measure this, we look at only those patients who have been on treatment for a full 12 months. Out of this group, we count those with a viral load of less than 1 000 as being “well and stable”. Definition of the indicator: numerator and denominator Numerator: Number of people currently on treatment with a viral load of <1 000, who started therapy 12 months prior to the reporting period Denominator: Number of the people currently on treatment, who started therapy 12 months prior to the reporting period Example: If I’m reporting for June 2010, I would take the cohort of patients that started treatment in May 2009: thus, they’ve all been on treatment for a period of 12 months. Data source Patient records; ART register Reporting frequency Quarterly or six-monthly Indicator target Aim for 70% viral suppression of the total cohort Suggested ways to present the data • Disaggregate by sex • Trends over time • Compare regions 31

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Outcome Indicators

Figure 9: Interpreting changes in Outcome Indicator #2 Percentage of people with a viral load suppression of <1 000 is stagnating or decreasing 1. Check the numbers for accuracy.

Percentage of people whose functional status (working and/or ambulatory) is decreasing

2. Check for overall data quality and reliability. 3. Check that reporting is happening on time.

yes no Is the data correct?

1. Verify that staff conduct appropriate drug monitoring. 2. Perform a clinical audit and a random sample case review.

yes

3. Check staff training on national guidelines for ART. 4. Ensure patients are adequately informed about treatment adherence.

no

5. Ensure patients are entering treatment early enough. 6. Emphasise a strong community system of patient follow-up.

yes

1. Ensure appropriate community campaigns about early identification of HIV and treatment. 2. Sensitise auxiliary staff (lay counsellors, etc) and community health workers so they relay the same messages about testing and treating early.

Are we enrolling people who are very sick (with very low CD4 counts)?

no

Do we have an effective HIV campaign focusing on early treatment?

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CHAPTER FOUR

TB/HIV Collaborative Indicators

H

IV is the most powerful known risk factor for developing TB. People co-infected with both the TB bacterium and HIV are up to 50 times more likely to develop TB than people infected with the TB bacterium, but not with HIV.4 In some countries with high HIV prevalence, up to 80% of people with TB test positive for HIV.5 TB programmes, wherever applicable, should be included in plans to monitor and evaluate the scaling up of ART.

For many years, the efforts to tackle TB and HIV have been largely separate, despite the overlapping epidemiology. However, it is now increasingly recognised that combined and coordinated efforts for both TB and HIV can halt this dual epidemic. Intensified case finding for TB is a current international focus. This means that TB and HIV programmes must step up their case-finding activities and ensure that collaboration between the two programmes are at optimal levels. One way to track this is to look at TB patients who are tested for HIV, and to ensure a seamless link between the two programmes â&#x20AC;&#x201C; especially in referring patients for both services.

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Consequently, TB programmes, wherever applicable, should be included in plans to monitor and evaluate the scaling up of ART. For this purpose, the World Health Organization has defined indicators relevant to the monitoring of TB/HIV activities, including access to ART for TB patients. This section looks at the top two TB/HIV collaborative indicators: • Percentage of TB patients that were tested for HIV • Percentage of HIV-positive TB patients that receive ART NB: These indicator results come from the TB programme; thereby requiring that the HIV and TB programmes work closely together in order to track these results. Each of the TB/HIV collaborative indicators are broken down and followed by the corresponding algorithms, which describe certain possibilities faced by the programme and some suggested action steps to take.

People co-infected with both the TB bacterium and HIV are up to 50 times more likely to develop TB than people infected with the TB bacterium, but not with HIV.

34

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Collaborative Activities Indicator #1: TB and HIV INDICATOR #1: Percentage of TB patients that were tested for HIV Rationale This indicator is important in that it is known that TB patients have high rates of HIV infection in areas where there is high HIV prevalence. This also measures collaborative TB and ART service integration, and health system linkages. Definition of the indicator: numerator and denominator Numerator: Number of TB patients registered during the reporting period that had an HIV test result recorded in the TB register Denominator: Total number of TB patients registered in the TB programme during the same period Data source TB register; patient records Reporting frequency Quarterly or six-monthly Indicator target Aim for 100% of the total Suggested ways to present the data • Disaggregate by sex • Trends over time • Compare regions

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TB/HIV Collaborative Indicators

Figure 10: Interpreting changes in TB/HIV Collaborative Indicator #1

1. Check the numbers for accuracy.

Percentage of TB patients that were tested for HIV is low or decreasing

yes

2. Check for overall data quality and reliability. 3. Check that reporting is happening on time.

no

Is the data correct?

yes 1. Train TB clinic staff to test for HIV and to record HIV results in the TB registers. 2. Increase referral to HIV services.

no

3. Increase education of TB patients on the need for HIV testing.

yes

1. Ensure appropriate community campaigns about link between TB and HIV. 2. Sensitise auxiliary staff (lay counsellors, etc) and community health workers so they relay information about TB and HIV co-infection.

Is it easy for TB patients to get an HIV test?

no

Is there good community knowledge about the link between TB and HIV?

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INDICATOR #2: Percentage of HIV-positive TB patients that receive ART Rationale ART guidelines are currently under review internationally, and subsequently, many countries are reviewing their own national ART guidelines. In developing the 2009 Rapid Advice recommendations6, the panel placed high value on: • the reduction of early mortality from HIV/TB co-infection • the reduction of TB transmission when ART is initiated earlier in all individuals with TB • improved management of TB.

TB/HIV Collaborative Indicators

Collaborative Activities Indicator #2: TB and HIV

However, not all TB patients who are infected with HIV will need ART, as this co-infection can occur at all CD4+ levels, and all TB patients who are co-infected should be staged for the need for ART. This indicator assumes that staging for HIV occurs at the HIV clinic and not at the TB clinic. Definition of the indicator: numerator and denominator Numerator: Number of HIV-positive TB patients registered during the reporting period that receive antiretroviral therapy (are started on or continue previously initiated ART) Denominator: Number of HIV-positive TB patients registered over the same period Data source TB registers; TB data periodically cross-checked against any ART registers/patient records

37

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TB/HIV Collaborative Indicators

Reporting frequency Quarterly or six-monthly Indicator target Aim for 100% of the total. However, this is dependent upon national guidelines as to the criteria for initiation of ART in TB co-infected individuals. NB: Current international guidelines for ART are undergoing review and updating as of the printing of this document. WHO provides estimates of the number of incident TB cases living with HIV at the national level. This indicator should be applied at the national level only, except when sub-national estimates for incident TB cases among people living with HIV have been made . Suggested ways to present the data • Disaggregate by sex • Trends over time • Compare regions

TB programmes, wherever applicable, should be included in plans to monitor and evaluate the scaling up of ART.

38

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1. Check the numbers for accuracy.

Percentage of HIV-positive TB patients on ART is low

yes

2. Check for overall data quality and reliability. 3. Check that reporting is happening on time.

no

4. Check the estimates of the number of incident TB cases living with HIV for your country/area.

yes

1. Check that TB patients are tested for HIV and are referred to ART services. 2. Ensure that TB patients have access to ART services.

no

3. Establish regular meetings between TB and ART staff for collaboration.

1. Ensure appropriate community campaigns about link between TB and HIV. 2. Sensitise auxiliary staff (lay counsellors, etc) and community health workers so they relay information about TB and HIV co-infection.

Is the data correct?

TB/HIV Collaborative Indicators

Figure 11: Interpreting changes in TB/HIV Collaborative Indicator #2

Is the TB/HIV collaboration strong in the facility?

yes

no

Do people know the link between TB and HIV?

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CHAPTER FIVE

Health System Indicators

N

ational programmes for controlling HIV, TB and malaria require support from public and private organisations for health systems strengthening. This is based on the widespread basic premise that only through building and strengthening health systems will better health outcomes be secured. A health system is defined as:

â&#x20AC;Ś all organisations, people and actions whose primary intent is to promote, restore or maintain health7. This definition goes well beyond the public health setting, and includes public and private organisations. A health system is all organisations, people and actions whose primary intent is to promote, restore or maintain health.

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Health system indicators

The World Health Organization identifies a health system as having the following six core building blocks: • health workforce • information • medical products and technologies • financing • governance • service delivery Strengthening these building blocks will ultimately result in the strengthening of HIV and other programmes that rely on the overall health system. This section looks at the top three health system indicators: • Percentage of ART sites experiencing stock-outs • Ratio of ART treatment clinicians to patients • Percentage of patients officially transferred out to other service sites Each of the health system indicators are broken down and followed by the corresponding algorithms, which describe certain possibilities faced by the programme and some suggested action steps to take.

National programmes for controlling HIV, TB and malaria require support from public and private organisations for health systems strengthening.

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Health system indicators

Health Systems Indicator #1: ART therapy and monitoring INDICATOR #1: Percentage of ART sites experiencing stock-outs Rationale This indicator measures drug supply management: whether health facilities dispensing antiretroviral drugs have run out of stock of at least one ART medicine. This may lead to HIV drug resistance and negatively affect overall health and quality of life of patients on ART. Definition of the indicator: numerator and denominator Numerator: Number of health facilities dispensing ART drugs that experienced a stock-out of at least one ART drug during the reporting period (follow clinic guidelines to determine the definition of a “stock-out”, or if none available, use a stock-out time of 1 day as the guide) Denominator: Total number of health facilities dispensing ART drugs during the reporting period Data source Programme records, facility survey or census Reporting frequency Reporting time period for programme records; every 2–3 years for facility survey or census Indicator target Aim for 0% stock-outs Suggested ways to present the data • Disaggregate by sector: public/private • Trends over time • Compare regions

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1. Check the numbers for accuracy.

Percentage of ART sites experiencing stock-outs is high or increasing

yes

2. Check for overall data quality and reliability. 3. Check that reporting is happening on time.

no

Is the data correct?

Health system indicators

Figure 12: Interpreting changes in Health Systems Indicator #1

yes 1. Check the drug management and supply system for blockages (including any transport or infrastructure issues). 2. Check that pharmacy and ART staff are trained in how to order and manage drug supplies.

no

Is the ART supply chain management functioning properly?

yes 1. Establish a forecasting system based on the history of levels of ART service and projected numbers of persons in need of ART. 2. Ensure appropriate staff is trained in using the forecasting system for drug supply management.

no

Is there a system in place to forecast the number of people needing ART?

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Health system indicators

Health Systems Indicator #2: ART therapy and monitoring INDICATOR #2: Ratio of ART treatment clinicians to patients Rationale This indicator measures the capacity of the health system to provide ART by looking at health worker density. This provides information on the stock of health workers who have been trained to provide ART as part of clinical duties, i.e. those persons trained and authorised to make clinical decisions and prescribe medicine (NB: it is not limited to doctors only). This is a useful way to capture how well services are being decentralised through “task-shifting” as more countries move towards this practice. Definition of the indicator: numerator and denominator Numerator: Number of health workers who make clinical decisions and prescribe medicine relative to the population of people currently in the ART programme Denominator: The total population of people currently in the ART programme Data source Routine administrative records by district health officers, individual health facilities and/or professional regulatory bodies Reporting frequency Annually, with a validation exercise every 3–5 years

44

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NB: As a rough estimate and to assist with planning, keep in mind that hospital-based ART programmes should have no more than 2 000–3 000 patients maximum.

Health system indicators

Indicator target Aim for international standards, or requirements of national guidelines. If none available, use guidance from similar programmes in neighbouring countries. For example, in South Africa, the recommended ratio is 1 clinician to every 500 patients and 2 registered nurses for 500 patients.

Suggested ways to present the data • Disaggregate by: doctors and registered nurses, urban/rural, province/region, public/private sector • Trends over time • Compare regions

45

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Health system indicators

Figure 13: Interpreting changes in Health Systems Indicator #2

1. Check the numbers for accuracy.

There are too few clinicians for the number of patients on treatment

yes

2. Check for overall data quality and reliability. 3. Check that reporting is happening on time.

no

1. Attract staff to the service, through innovative packages, for example, that offer opportunities for training and/or research.

yes

2. Deploy doctors from other clinics on a part-time basis. 3. Institute a task-shifting policy, for example, where nurses are trained in prescribing ART.

Is the data correct?

no

Is the ART supply chain management functioning properly?

4. Introduce a triage system so that the registered nurses can assess stable patients.

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INDICATOR #3: Percentage of patients officially transferred out to other service sites Rationale Many ART programmes began with a centralised model of care where patients were started on treatment in tertiary care facilities. However, clinics soon became over burdened. As with any other chronic illness, when the patient is stable, they should be sent to lower-level facilities. However, there should be some safety mechanism to ensure that patients who are “down-referred” arrive at the new facility without any treatment interruptions.

Health system indicators

Health Systems Indicator #3: ART therapy and monitoring

Definition of the indicator: numerator and denominator Numerator: Number of people successfully transferred out to other service sites (definition of a “successful” transfer: referred patients that were confirmed to have arrived and been registered at the new service site) Denominator: Number of adults currently on treatment How to calculate the denominator: Add the number of people enrolled in the programme, subtract those who have died, those that were lost to follow-up and those transferred out (we are not interested in numbers of people who were ever enrolled in the programme, only those currently enrolled). Counting those currently enrolled is a more accurate count of your service coverage than is counting those who were ever enrolled (see coverage Indicator #1: ART therapy and monitoring on page 11). Data source ART register

47

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Health system indicators

Reporting frequency Six-monthly or annually Indicator target Depends on the facility’s goals (i.e. if the site has plans to decentralise services to other facilities) Suggested ways to present the data • Disaggregate by sex • Trends over time • Compare regions

A health system is all organisations, people and actions whose primary intent is to promote, restore or maintain health.

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1. Check the numbers for accuracy.

Percentage of people who were transferred out is stagnant or decreasing

yes

2. Check for overall data quality and reliability. 3. Check that reporting is happening on time.

no

yes

1. Investigate blockages in the roll-out of ART services to other facilities or sites. 2. Check the functioning of the referral system (i.e. patients have appointments at their new facility) and that patients are arriving at their referred clinics (i.e. confirmation reaches the referring site).

Is the data correct?

Health system indicators

Figure 14: Interpreting changes in Health Systems Indicator #3

no

Is ART being rolled out or decentralised as planned?

yes 1. Ensure that treatment awareness campaigns explain the advantages of treatment closer to home, and explain scenarios where task-shifting is occurring. 2. Sensitise auxiliary staff (lay counsellors, etc) and community health workers so they properly relay information about downreferral and task-shifting.

no

Is there a system in place to forecast the number of people needing ART?

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CHAPTER SIX

References and Endnotes

References Everybodyâ&#x20AC;&#x2DC;s business: health systems strengthening to improve health outcomes. WHOâ&#x20AC;&#x2DC;s framework for action. Geneva, World Health Organization, 2007 Rapid advice: Antiretroviral therapy for HIV infection in adults and adolescents, November 2009. Geneva, World Health Organization. Monitoring and Evaluation Toolkit, HIV, Tuberculosis and Malaria and Health Systems Strengthening. 3rd ed. English hardcopy, February 2009. The Global Fund to Fight AIDS, TB and Malaria. Monitoring and Evaluation Manual, 2008. The Global Fund to Fight AIDS, TB and Malaria. www.theglobalfund.org/en/per formance/ monitoring_evaluation National AIDS programmes: a guide to indicators for monitoring and evaluating national antiretroviral programmes, 2005. Geneva, World Health Organization

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2 Rosen S, PLoS Medicine | www.plosmedicine.org 1691 October 2007 | Volume 4 | Issue 10 | e298 3 Granich et al, Lancet Vol 373 January 3, 2009 4 National AIDS programmes: a guide to indicators for monitoring and evaluating national antiretroviral programmes. Geneva, World Health Organization, 2005.

References and Endnotes

Endnotes 1 Antiretroviral Therapy Cohort Collaboration, J Acquir Immune Defic Syndr _Volume 46, Number 5, December 15, 2007

5 World Health Organization website: http://www.who.int/hiv/topics/ tb/en/index.html., accessed 20 April 2010. 6 Rapid advice: Antiretroviral therapy for HIV infection in adults and adolescents, November 2009. Geneva, World Health Organization. 7 Everybodyâ&#x20AC;&#x2DC;s business: health systems strengthening to improve health outcomes. WHOâ&#x20AC;&#x2DC;s framework for action. Geneva, World Health Organization, 2007 (http://www.who.int/Healthsystems/ strategy/everybodys_business.pdf, accessed 20 April 2010).

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Notes

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WHAT_DOES_THIS_MEAN_COVER.indd 2

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What Does This Mean  

How to interpret what is happening inyour ART programme. A handbook for ART programme managers who attended the ART Data Use Course, Novembe...

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