Lost to Follow up- Manual

Lost to Follow up (LFU) Activities, Achievements & Lessons Learnt

Contents Abbreviations Foreword Preface Acknowledgements Executive Summary Introduction to the Manual Chapter 1: Introduction Current status of HIV in AP and the challenges Genesis/Origin of the Balasahyoga Objectives of the Balasahyoga Expected Outcomes of the BSY Intervention Chapter 2: Introduction to Lost to Follow-up Introduction to ART Treatment Importance of Adherence Definition of LFU How to calculate LFUs Importance of LFU tracking Situation in the Year 2008 BSY’s Model of LFU tracking District LFU Studies & Findings Non Negotiable One time activities Monthly Cycle- Generation, Distribution, Getting feedback, updating LFU line lists Chapter 3: Planning & Implementation Various approaches in planning – LFU studies in 8 districts Stakeholder involvement ART Co-ordination meetings (write up, Photographs, meeting minutes template, line list sample) Measures taken at Facility for the LFU tracking Preventing LFU MIS tracking Due visit date tracking Address Updating Transfer out- Eliminating the TO cases, duplicates linkages & referrals Capacity Building Module development, Capacity Building Programs Chapter 4: Monitoring Chapter 5: Key outputs and Outcomes

Reduction in LFU cases Chapter 6: Lessons Learnt and Limitations Chapter 7: Future Possibilities

Special Case: Pre-ART LFU tracking Present case: Kurnool Model; Vizianagaram Model Plan Case studies Appendices All LFU study reports Templates of LFU tracking (NACO and Our proposed)

Each in one page will come

Contents

Abbreviations

Foreword

Preface

Acknowledgements

Executive Summary

Introduction to the Manual

Audience The manual is written with the intention that it would help the program managers to implement the client tracking who are in care, support and treatment. Although it is mentioned as LFU tracking, the principles can be applied in any situation where the client and tracking is involved.

Shared the lessons learnt so as to prevent the same learning happening once again..

Purpose: The intended purpose of this document is to provide a holistic framework for the reader to address the LFU issue at the facility by using the existing resources

Chapter 1: Introduction Current status of HIV in AP and the challenges There are an estimated 0.5 million PLHIV and 150,000 children affected by HIV in Andhra Pradesh. Lack of continuity of care and limited awareness of available HIV services has led to extremely low uptake of PMTCT, HIV testing and counseling, care and ART services among HIV-affected children resulting in high rates of loss-to-follow-up, morbidity and mortality.

Genesis/Origin of the Balasahyoga The Balasahyoga programme was seen by the National AIDS Control Organization (NACO) as an operational model that pre-tests the draft national operational guidelines on ‘Protection, care and support for children affected by HIV/AIDS’; developed by the National Task Force Committee for Children and AIDS. The successful implementation of the programme in Andhra Pradesh will ensure replicability and scale-up of the programme in other states of India.

The need for comprehensive HIV prevention and care services especially focusing on children and their families is great in Andhra Pradesh. Andhra Pradesh, India’s fifth most populous state1 is one of the country’s six high HIV prevalence states with 19 out of 23 districts having HIV prevalence of 1% or more among women attending government antenatal clinics2. A large differential is also observed within the state, with HIV prevalence being very high in a few districts such as Khammam (3.50%)3, West Godavari (3.25%), and Guntur (3%), indicating increased vulnerability to HIV and AIDS and the need for a scaled-up response.

The National AIDS Control Organization (NACO) and State AIDS Control Societies (SACS) funding for HIV prevention and care projects for children is limited to supporting a few targeted interventions with street children and provision of family life education in schools. The response of non-governmental organizations (NGOs), though encouraging, is disproportionately focused on HIV prevention and awareness. A smaller number have begun to provide much-needed care and support services for children infected and affected by HIV and AIDS with FHI supported projects leading the response both at the community and policy levels. World Vision, Catholic Relief Services, Freedom Foundation and India HIV/AIDS Alliance through its mother NGOVasavya Mahila Mandal (VMM) are some of the other organizations that have responded to the care and support needs of children infected and affected by HIV and AIDS, albeit on a small scale.

Overall, the response from all the sectors has been localized, and there is a pressing need for greater networking, resource-sharing, planning and scaling-up of initiatives that provide comprehensive HIV care, support and treatment services to children infected and affected by HIV and AIDS. Through the third phase of the National AIDS Control Programme (NACP-III), 1

Andhra Pradesh has a population of 76.2 million - Census 2001 HIV surveillance, 2005; Andhra Pradesh State AIDS Control Society (APSACS) 3 Annual Sentinel Surveillance, Government urban antenatal attendees, APSACS 2005 2

national and state governments are increasing their commitment to strengthen HIV treatment, care and support for children-affected by HIV and AIDS and their family members by expanding policy initiatives and committing resources. However, there is urgency for greater financial resources and more organizations to work collaboratively to respond effectively to the holistic needs of the growing number of children infected and affected by HIV and AIDS in Andhra Pradesh. Further, there is a need for dove-tailing HIV prevention, care and support interventions in Andhra Pradesh with government-run ART roll-out programmes including the CHAI’s paediatric programme to make ART accessible to HIV-infected children. Since August 2002, with support from the U.S. Agency for International Development (USAID), FHI has supported nine orphans and vulnerable children (OVC) projects in Andhra Pradesh that have provided services to 18,000 children and 4,300 HIV-positive women. Since October 2004, CHAI has been supporting NACO and the GOI under a memorandum of understanding (MOU) to strengthen and expand the delivery of care and treatment to PLHA. ‘Balasahyoga’ that translates as active support to the child aims to improve the quality of life of children infected and affected by HIV/AIDS and their families by expanding the coverage of comprehensive HIV/AIDS care, support and treatment services in all the 23 districts of Andhra Pradesh. However, further to the discussions and presence of other big programme, it was decided to focus on eleven districts as The Global Fund-supported consortium led by the India HIV/AIDS Alliance in other 12 districts. It was expected that together, these two teams will lead efforts to address the needs of children and families affected by HIV in Andhra Pradesh.

Drawing on key lessons from Children’s Investment Fund Foundation (CIFF) supported Tamil Nadu Family Continuum of Care (TNFCC) project, Balasahyoga will directly contribute to CIFF’s Mission and HIV/AIDS strategy.

It was proposed that Balasahyoga will leverage existing resources, co-ordinate with and/or capitalize on the comparative advantages of other partner organizations, government institutions, private sector and other networks to maximize coverage and deliver the following quality comprehensive prevention, care, support and treatment services.

Launched by the Chief Minister of Andhra Pradesh in April 2007, this programme adopts a novel method of implementing a comprehensive approach with three closely inter-linked components namely: i) the community-based; the facility-based; and the food security and livelihoods, managed by a consortium of three organisations namely Family Health International (FHI), Clinton Foundation (CF) and CARE. FHI leads this consortium and is responsible for coordinating the delivery of services.

Goals and Objectives of the BSY The primary goal of Balasahyoga is to improve the quality of life of children in 30,000 households (approximately 60,000 children and 60,000 adults) affected and infected with HIV. Balasahyoga, a 5-year program, was established with support from the Children’s Investment Fund Foundation and Elton John AIDS Foundation to provide linked HIV care, support and

treatment services to 68,000 infected and affected children and their families in 11 districts4 of Andhra Pradesh in India.

The goal of the Balasahyoga programme is to improve the quality of life of children and families infected and affected by HIV, ensure that children and their parents have access to life saving treatment and other services that impact their health and reduce overall morbidity and mortality.

In order to achieve the above goal, the Balasahyoga programme defines two primary objectives: 1. To improve access to quality continuum of care services for children and their families infected and affected by HIV/AIDS 2. To demonstrate a sustainable and replicable model of care, treatment and support that can be implemented by governments The programme is implemented by a Consortium led by Family Health International, Clinton Foundation and CARE; and supported by the Children’s Investment Fund Foundation and the Elton John AIDS Foundation.

Advocacy

Health

Children and families infected & affected by HIV/AIDS

Education

Safe ty net

Communication

Documentation

Psychosocial

To improve the quality of life of children and families infected and affected by HIV/AIDS

Nutrition

Capacity development

The project undergone re-strategisation for better delivery of services to the clients and thus decided to provide Minimum Package of Services.

4

Guntur, West Godavari, East Godavari, Vizianagaram, Kurnool, Anantapur, Kadapa, Chittoor, Adilabad, Medak and Mahbubnagar

Package of Services The minimum package of services that Balasahayoga households and individuals will be facilitated access to the following services.

Domain

Services

Health: includes prevention and treatment of OI, alleviation of HIVrelated symptoms and pain and any other non-HIV related medical needs.

HIV testing Pre-ART registration and screening Access to ART, monitoring CD4 levels, ensuring treatment adherence OI prophylaxis and treatment, including TB screening and treatment Child Immunization ANC check-ups Home-care Counseling on improved water handling and sanitation practices; personal and domestic hygiene

Psychosocial support: includes interventions that address the mental, emotional and social needs and well being of infected and affected children and adults.

Need-based counseling based on age and stage of illness Life skills education (LSE) for children between 8-18 years to develop better life coping skills Peer support through support groups for adults and children

Education: includes assistance in provision or linkages to services that provide education to affected children in registered households.

Periodic assessment of out-of school children and school drop-outs Ensuring enrolment and retention

Nutrition: includes periodic nutrition assessments and growth monitoring; and ensuring access to micro nutrients for all HIV infected adults and children and therapeutic interventions for children diagnosed with acute severe malnutrition.

Periodic nutritional assessment and growth monitoring Nutrition and dietary counseling, including counseling on exclusive breastfeeding and infant feeding practices Linkages to existing food programmes for supplementary nutrition– ICDS, Mid-day meal, others

Safety Net: includes interventions

Food security assessments of affected households

with families identified as severely and moderately food insecure and implementation of interventions which involve communities to foster reduced stigma and discrimination.

Food security interventions with severely and moderately food insecure households including kitchen gardens, micro enterprise, demo-plots and community grain banks.

Linkage to Government safety net programs like Public Distribution System, NREGS and other welfare schemes.

Interestingly, in any of the basic documents or the original proposal did not include the word LFU or any strategy related to LFU. LFU gained entry into the documents after the re-strategisation and as one of the five strategies as a crosscutting strategy.

LFU gained importance in the project once the KPIs were finalized, LFU studies were in process and tracking mechanism is established.

LFU and its importance to BSY Reducing LFU is key priority in BSY as it is directly relevant at Impact level, for three goals namely decreased mortality of children and parents living with HIV/AIDS, decreased morbidity among children and parents living with HIV/AIDS, and thus decreased number of children orphaned by HIV/AIDS. To achieve this impact, the LFU tracking is streamlined, and various measures such as MIS tracking, daily due list preparation in all districts, and Pre-ART LFU tracking in two districts. All these ensures improved quality of life to children and families infected and affected by HIV/AIDS through maintaining their health status.

Chapter 2: Introduction to Lost to Follow-up Introduction to ART Treatment Antiretroviral therapy (ART) is treatment using anti-HIV drugs. Generally, ART treatment aims to achieve two goals- suppressing HIV replication and reducing the likelihood of resistance development by virus. This facilitates the reduction of progression of HIV disease. ART generally involves using a combination of at least three drugs.

It is proven that ART can reduce mortality and morbidity rates among HIV-infected people besides improving their quality of life, thus impact orphan hood and preserve families. It is more evident particularly in early stages of the disease. Thus, WHO recommends earlier initiation of antiretroviral therapy (ART) for people infected with human immunodeficiency virus (HIV) Expanded access and utilization of ART by HIV patients can also reduce the HIV transmission at population level.

Importance of Adherence Medications are effective only when they are taken as prescribed. Successful ART can only be achieved with >95% adherence Non Adherence is a serious issue in both developed and developing countries as well.

There are elements in adherence. Adherence is not an easy activity. The elements of adherence are few such as taking correct dose at the right time and consuming right way and doing that by following other advice and restrictions such as Alcohol, Foods, Medicines etc Adherence has been defined in many different ways. In general, , given the HIV disease and for this paper, keeping medical appointments and taking prescribed medications as prescribed are considered as adherence.

Strict adherence is vital to achieve the health outcomes and to prevent the emergence of resistant HIV. However, it is extremely difficult to adhere consistently. Adherence is a complex issue involving social, cultural, economic, and personal factors.

Many barriers and constraints exist to Adherence. It varies from person to person, varies from children to adults, from males to females, situation to situation, and from time to time as well.

Other known barriers are lack of understanding of importance of adherence, feeling better thus assumed being cured, being busy, unable to afford travel costs and time for ARV refill, disclosure issues, side-effects, depression, adherence fatigue, tired of taking medicines, forgetfulness. It is not always easy to remember to take medicines!

Reasons for non adherence can be many- ranging from aversion to medication side effects, inconvenience of taking multiple pills, negligence, forgetfulness due to other activities, distractions, lack of disclosure to family members etc. Sooner or later, adherence fatigue does

come. All these factors interact with one another across various dimensions. Adherence appears deceptively simple even though it is not just simply remembering to take medications at certain time.

Adherence is also a habit. Thus, one can say, practice makes perfect. A plan for complete adherence can be planned with the patient provided both work together.

Patient adherence can be a win-win-win situation for everyone involved. Patients win because they get their health back, and stay healthy sooner. They also avoid unnecessary delays in recovery, relapses and side-effects. Clinicians (physicians, pharmacists and counselors) win because treatment plans are implemented, thus the performance of the centre in terms of reduced mortality, morbidity and less LFU is possible, besides deeper satisfaction. Families win across multiple dimensions and they can achieve the patient health at the lower costs and at the lowest time.

Results of Non Adherence The results may lead to death or morbidity.

HIV being a Retro virus can easily replicate and change itself. It is thought that every point mutation occurs 1,000 – 10,000 times each day in HIV-infected individuals who are not on therapy. This means that if too many ARV doses are missed by HIV patient, the virus will make more copies of itself, thus making people sick again. When HIV increases it can also change itself so that the ARVs will not be able to work as well, or at all. This will make the adult or child with HIV sick again. They will need other ARVs to take but sometimes those are too costly and not available.

Following a prescribed dosage ensures that the medications in the blood levels remain high enough so as the HIV replication is successfully suppressed. Mutations are expected to happen when the virus is replicating. If the virus is not replicating enough, the chances for mutations will also come down drastically. Development of HIV mutations resistant to the medications is possible if the client is non adherent. In many cases, this may lead to resistance to medications that have not taken yet, but which are from the same class of those are taking (and perhaps not adhering to), a phenomenon known as cross- resistance.

Definition of LFU LFU is defined as “A patient who can no longer be followed for the outcome of interest, e.g., a patient who is unwilling or unable to return to the clinic for follow-up examinations in the case of a clinical trial using an outcome measured at the clinic, or a patient who cannot be located for subsequent follow-up in the case of a trial involving mortality or some other outcome that can be measured outside the clinic setting” Patients lost to follow-up have a worse outcome than those who continue to be assessed.

Consequently, a survival analysis that does not take into account such patients is likely to give falsely optimistic results. It is therefore essential that vigorous attempts are made to minimize loss to follow-up, and that the rate of such loss is quoted.

The overall loss to follow-up disguises the magnitude of the problem, which is best quantified by a cumulative rate of follow-up.

As per NACO M&E toolkit (Draft), LFU defined as follows Patients alive and on ART who did not return to the ART centre for 3 continuous months (90 days) are therefore declared “lost to follow-up” (LFU) In other words, this means, the patient did not take their treatment for 3 months, or the patient did not come to the ART centre for 3 months, or the patient missed the 4th drug packet in a row LFU is different from the (temporary) MIS. Patients categorized as LFU are no longer considered patients in the ART center and are dropped from the drug supply.

If a patient declared LFU returns to the ART center after no treatment for 3 months or longer, the patient will be re-entered into ART and recorded under 8.5. A patient declared LFU is found to have died, the number of LFU in the next monthly report can be reduced and the number of Dead can be increased.

What is NOT lost to follow-up: Patients who have missed 3 consecutive “drugs packet” and return for the fourth drug packet are not considered lost to follow-up. These patients are considered Defaulters / MIS.

How to calculate LFUs LFUs are calculated from On ART register. Unless these registers are up-to-date, it is not possible to calculate accurate LFUs. It is assumed that records are up to date.

Before calculating the LFU: The counselors update all the records especially the ART registers. Unless all ART registers are up to date, even regular or missed cases can come as LFU cases. Transferred out cases details also need to be updated completely so as officially transferred out cases can be prevented entering into LFU line list. All efforts should be taken to see the link ART centers data is available with the main ART centre and all the details are updated totally before calculating LFU Correct calculation of the LFU: Calculation of the LFU should be accurate and as per the guidelines. It was observed earlier in some of the ART centers they were calculating the LFU effectively for two months only instead of three months. Going by their calculation, it is 61st day they become LFU, however, as per the norms, it should be 91th day. As a result of this, LFU cases reported will be more. Even though, in a way this was better, however, it was not encouraged.

For correct calculation of the LFU client, the date of the next visit should be clearly captured.

Date of next visit will be based on the pills available with the client and the pills that are given to the client. The client becomes LFU only when the client did not have ART drugs continuously for 90 days. On 91st day, the client needs to be labeled as LFU. Once a client resumed treatment, the client name should be removed from the LFU line list.

Clients who died cannot be in the LFU line list. ‘Death’ reported need to be verified either through phones or random checks if enough evidence is not available.

Clients who joined in another ART centre or joined in the same ART centre as another patient on their own initiated need to be marked and separated and should not be given as LFU cases as they are not LFU. The number of the LFU clients changes from day to day, even from hour to hour also in the same day. Calculation of the LFU is based on the non visiting of the clients to the ART centre from the due visit date for a period of 90 days.

LFU line list can be generated in two ways. One may generate the entire LFU clients list afresh on the last working day after updating all the registers using ART registers. Other way, which is economical, but prone to errors, is to prepare using the previous month LFU line list. From the previous month cumulative LFU, one has to remove the clients reported and confirmed as died, clients who resumed treatment , and clients who transferred out to other ART centers need to be removed from the LFU line list. To this list, one has to add the clients who have become LFU particularly in the reporting month only to get the LFU line list for that particular month only.

The other way is to get the list of LFUs from the PLHA software. However, key in requires up to date Patient Treatment records. Unfortunately, even after so many versions, revisions and testing, as of now, PLHA software is not in a position to generate accurately and completely of all the LFU clients due to backlogs, software bugs, data entry errors. Hence, the LFU line list generated is not accurate and complete.

One should always remember that any client can be only in one category at any one point of time. Clients are either alive or died. If they are alive, they are regular to ART centre or irregular to ART centre. If they are regular to ART centre they can be adherent or non adherent. And if they are non regular, they can be either MISS or LFU. In all these categories, any client at any point of time can be in only one category. No client can be in two categories.

Importance of LFU tracking LFU is a fact and also a multidimensional issue. LFU tracking is a process defined as series of steps that needs to be done to track all the LFU clients in the district so as to make them resume ART treatment. It is also recognized that for various reasons all LFU clients cannot be tracked.

LFU tracking is important for various reasons. Generally, for any change to happen people need support. By following them up and showing concern help some clients to disown their behavior and change their behavior for better health outcomes. Following them up sensitively increases the adherence rate to the treatment also. It is clearly proven in the LFU studies that meeting the clients in person helped to get more number of clients resuming treatment.

It is clear that by tracking and convincing the LFU clients to resume treatment will decrease mortality and morbidity rates in LFU clients. As these clients resume treatment and gained health, and alive their families can lead the expected lives. This reduces the orphaned children.

In a way, besides the client, it helps the family and the society.

As new clients tend to become LFU during the first six months, continuous follow up, appropriate support helps. In case, if the client turned up into LFU, tracking helps in brining the back the client to the ART centre. It is commonly observed, many LFU clients needs that gentle push and support to resume treatment and be alive.

Situation in the Year 2008 Knowing the starting point always helps in assessing how far the travel has been and in appreciating the progress that has been achieved. It was observed that then LFU is not owned, not discussed consistently, seriously at all. It is just a reporting indicator. LFU did not have the proportionate mindshare, and especially there is no clarity on how to proceed as well. Even more seriously, there is no mechanism in place to know, or crosscheck who did what, who is doing what and who is going to do what also. Even the clients resumed reported were also not cross checked consistently. In some of the heavy load ART Centre, the LFU line lists were

never prepared completely. Even if prepared in the small ART centers, they were shared in total to all partners who are not overburdened, understaffed and not so willing to track them. As a result of that, many outreach workers end up in the clients houses which are accessible and near to them. This created an unwanted situation in the client’s identity in the village.

Expected accountability, and responsibility fixing mechanisms were not in place. Outreach workers were never trained properly on how to find the addresses, how to ensure that no damage is done to the client, and importantly on how to convince the client to resume the treatment.

Reasons for LFU were not known. Most of the reasons are guesswork and assumed. Status of the clients was also not known. No one knows whether the client is traceable or not, migrated, dead, taking alternative treatment, willing to come, etc In no centre, there was MIS tracking and Pre-ART LFU tracking. In no centre there was Daily due list preparation and phone follow up.

Data management issues are still there even after so much follow up and feedback mainly because of PLHA software issues, besides not having the electronic database up to date in some centers and capturing of all the client data that is possible in the facility needs improvement Non negotiable in BSY-LFU tracking As many actors are involved at different levels, it is strongly suggested to have non negotiable for everyone. Having these principles ahead will help in decision making in tricky situations and helps us not to take decisions that does not add value. The following are considered as non negotiable for the LFU tracking.

ZERO disclosure principle is the non negotiable in the BSY LFU tracking. Respect to client is a must. Client privacy, identity is the important aspect that we value. In any case and under no circumstances the HIV status will not be disclosed or suggested to anyone, including their family members, directly or indirectly. The tracking partners and their staff need not be labeled with the HIV-AIDS. No harm, intentionally or unintentionally, to anyone.

BSY’s Model of LFU tracking BSY model is an evolved model. It is considered as an evolved model because it is inclusive, participatory, responsive, absorbed the changes, achieved the results, acceptable to many and the same can be used for Daily Due List, MIS and Pre-ART LFU tracking as well.

The purpose of the model is to reduce, if not maintain, the LFU rate of the ART centre by having an Integrated, Coordinated, Efficient and Effective Sustainable tracking systems in place, with ART centers/DAPCU/APSACS taking lead and ownership.

It is integrated as it focused on prevention and tracking and is inclusive of client and facility perspective as well. It is coordinated as efforts and thoughts or various actors are coordinated for the results, and it is efficient as given the resources available in the field, the work load is shared between the partners on their own. It is effective as it considers the client’s privacy, and identity in its mechanisms. It is sustainable as there is a demand for reduced number of LFUs; new patients are joining ART Centre, fair mechanism, and above all brought reasonable results and satisfaction to all involved and as of now, no better mechanism was evolved else where.

The model accepts the fact that LFU is inevitable to a certain extent can be contained to a large extent and can be prevented. It believes that people are willing to live longer, although they may feel otherwise when they are sick and dependent. It takes into cognizance that LFU reduction calls for team work and importantly a committed and coordinated consistent efforts by the team members in the field and at the facility. It recognizes the importance of prevention, and tracking as two sides of the same coin.

This model is designed because of various observations made during the field visits and studies. Too many actors on the ground, with little or no coordination and integration, no common goal on one aspect, and lacking capacities, sensitivities towards clients and their privacy and absence of ownership for the results, streamlined operation and missing a specific step by step procedural cycle that needs to be implemented across the space and time to contain the LFU rate. LFU is a persistent issue and requires the long term commitment and consistent and persistent efforts required.

BSY model consists of two fundamental aspects- principles and practices.

The principles are given below.

Principles in practice 1. Client is important. Client perspective matters. That is why we have ZERO disclosure as non negotiable.

2. Clarity- Everyone is clear of who is tracking whom and how the tracking happens in the field. The partners also know who tracked which LFU client as clear accountability system is established by having only one tracking partner for each mandal.

3. One LFU client will be approached and persuaded by only one ORW from only one Tracking partner. The process may contain many tracking partners. All the mandals in the district will have one partner each only. However, all partners will have clear areas of operation where they need to follow the LFU clients given. No poaching into one another areas of operation. To prevent, LFU clients list of that mandal is being shared to the respective partner of that mandal only. It is expected that no other partner get the LFU client list of other partners at all. This is done through segregating the LFU line lists mandal wise and then partner wise.

4. Prevention is vital. Without achieving the success in prevention, tracking alone cannot bring the results or maintain the reduced LFU rate.

5. Ensuring manageable work load through distribution of work load among the partners based on their capacities, interests and willingness.

6. Continuous Improvement across the spectrum. This principle helped in moving from the on ART LFU to MIS to Daily Due list tracking continuum.

7. Sustainability is essential. To ensure sustainability, the partners who are expected to work long in this sector were given the priority in choosing the majority of the mandals first and followed accordingly. Sustainability in design stage itself is critical.

The practices are enumerated below. The model consists of few core practices. When practices based on principles are followed consistently, results can be achieved and sustained.

Else, nothing can be guaranteed. a. Monthly cycle- One cycle has to begin and end every month. LFU tracking follows a monthly cycle. It starts and ends with the Care Coordination meeting.

Regular ART care coordination meeting with all partners, at specific time and venue is strongly advocated and practiced to the extent possible given the situation. Communication, feedback and expectation exchange and collaborative planning should happen on regular basis. People need to meet each other regularly, pursue a common goal, and celebrate the achievements on regular basis. Without a cycle as a reference in the mind, no process can be sustainable so are the results. b. Generation of LFU line lists- LFUs happen regularly as the new patients tend to become LFUs. Hence, LFU line lists should be created on monthly, regularly and consistently basis without fail. These LFU line lists should be prepared based on the actual definition of the LFU (91th day considered as LFU) and in the same procedure and format. All details related to LFU line list preparation was mentioned elsewhere. c. Clear data flow mechanisms and accountability- Once entire LFU line list for that month are prepared, the same need to be chunked into mandals thus partner wise for distribution. LFU line lists should be shared to the agreed and selected partners of their respective mandals. These LFU line lists do contain the feedback given by the partners so that they can move forward. Partners are clear about their responsibilities and results expected out of them. In particular order, their responsibilities are i. Tracing the clients’ addresses without divulging or indicating anything about their status ii. Meeting the client and convincing the client to resume treatment by visiting ART centre iii. Providing field feedback to ART Centre about the clients’ reluctance, status, unwillingness etc with the LFU line list back to ART centre-in time, without any changes to the template, and with Specific outcomes only as agreed in the meeting.

iv. Generate and participate in developing agenda items for the ART care coordination meeting and provide feedback and add value in the meetings and facilitate to reach decisions consensually considering various factors. d. Appropriate Action on the field feedback – As part of the process, the facility receives feedback from the community. All the feedback need to be taken positively and constructively. The data provided by the partners will be crosschecked for consistency, accuracy etc. the deaths reported need to be verified to the extent possible. Resumed clients data need to be verified without fail as it is possible some clients might be regular on other identity in the same ART centre with different name as well. Continuous updating of the client addresses and land marks etc need to be noted and updated. Based on the feedback received, the health care providers need to act anticipatorily to prevent clients becoming LFUs. e. Facilitative support of Facility Coordinator- As a part of BSY-CF, Facility Coordinator did provide the various kinds of support to all actors to ensure that all principles and practices are adhered to the extent possible. Some activities are – Ensuring ART care coordination meetings happens, LFU line lists are prepared, accurate and updated, duplicate LFU clients are avoided in the consecutive monthly lists and those clients whose status is already known/tracked, took necessary measures to address any issues/hurdles related to tracking- Facility level and facilitating the processes to happen and learning thus improving.

Motivating the tracking partners to track the MIS, Daily Due list and Pre-ART were also part. f. Consensus decision making, and participative culture Reducing LFU is a team work. For teams to function properly, besides having a common goal, the decision making style and the working culture should be acceptable to the actors and facilitate the goal achievement. Hence, consensus decision making process and participative culture was tried to develop subtly. However, as expected, developing culture is a long term intervention in a government setting.

One time activity- LFU tracking study Globally the studies on LFU are very few. As per the latest available publicly Meta analysis, (Brinkhof MWG, Pujades-Rodriguez M,Egger M (2009) Mortality of Patients Lost to FollowUp in Antiretroviral Treatment Programmes in Resource Limited Settings: Systematic Review and Meta-Analysis. PLoS ONE 4(6): e5790. doi:10.1371/journal.pone.0005790) percent of LFU clients are ranging from 5% to 39%. In these analyses, they could find only one report from India, Jodhpur (12.8% LFU).

The Objectives of the LFU tracking study were 1. To prepare list of all LFU cases in the ART centre at that point of time and all LFUS are tracked and resolved.

2. To develop capacities in the staff of various partners on LFU, LFU tracking tool and thus structured data collection with an opportunity to back track the information, if required.

3. To increase the number of patients who are alive and on treatment by decreasing the number of LFU cases.

4. To improve quality of data pertaining to LFU in the ART centre. Data managed by ART centres updated with the newly acquired data.

5. To develop LFU clients tracking as a structured well established routine practice.

6. To develop better communication and coordination mechanisms between partners through care coordination meetings so that the partners in the district work as a team.

7. To establish linkages between ART centres and CCCs, and strengthening the same with shared responsibilities between the facilities with regard to patient tracking 8. To understand the reasons of clients why they choose to be LFU and use this information to design systems and strategies to maximize retention thus to increase the number of people alive and on treatment by following up with all LFU cases as reported by each ART centre 9. To develop a process for tracking and follow-up patients, review and update the patient data; 10. To bring those patients back to the ART centers Some of the one time activities done during the LFU studies are: • •

•

•

Cleaned all the old LFU clients data, developed complete LFU lines lists till that month with all the available information in the facility, keyed in the LFU clients’ data in Excel etc Agreement on the Partners- District level networks, all CCCs in the districts, other programmes involved in the care and support were the partners. Partners were decided keeping in view of sustainability, interest, capacities and willingness through dialogue only Demarcation of the working areas (mandals). Ensured that one mandal is dealt by only one partner. One partner can have many mandals, but no mandal will have two partners.

Training - All field staff of the respective partners were trained on LFU format and LFU tracking. Trained ORWs on the finding the addresses through various means, the common reasons they mention& suitable answers. Participation is capacity building

Further to the verification of schedules, follow up, and feedback and crosschecking, the same data has been keyed in and analyzed and reports are prepared and presented.

As part of the study a list of 1,935 clients who became LFU was provided to outreach workers (ORWs) to follow-up including Family Case Managers (FCMs), Community Volunteers from Balasahyoga and other NGO partner staff. Of the list, a total of 1,790 clients could be tracked.

The remaining clients were not tracked at that point of time because of various reasons such as other priorities to the partners, timelines to complete the studies etc. Of these 1790 LFU clients, 9 were children (5 male and 4 female) LFUs and are from Chittoor, East Godavari and Ananthapur.

At the district level, a team of ORWs were trained to collect information using a structured questionnaire. The data collected was then analysed and the summary of the findings are presented below.

Salient points of the study: Nearly 28 percent of the clients could be reached. Of these 28%, 81% of them provided the reasons for becoming LFUs, and 15 percent of them were counselled and around four percent of them were escorted and facilitated the resumption of the treatment.

72% of the clients could not be met for various reasons. Major reason for not meeting the client is due to the death (44%). In 40 per cent of such cases, it is due to the address related issues.

Four percent of them were migrated and around 2 percent of them were not met for other reasons such as locked house, not willing to speak, etc However, when all the LFU clients who were tracked were considered, the following was found to be the status of the 1,790 clients: 32% clients had died when the ORWs went to enquire about them; 29% addresses were non-traceable. When the ORWs went in search of the addresses provided on the list, they found that either the individual’s name did not match (household existed but no one with that name ever lived there, or in a few instances the name and address existed but the person with that name neither had HIV nor had ever visited the ARTC), and in many cases such address don’t exist at all in the district due to absence of that mandal, village, street name, land mark etc.; 10% clients had already migrated (either permanent or temporary migration); 27% clients, who had not visited the ART centre in the last three consecutive months or more, could be met.

4% clients were counselled and referred back to their respective ART centres.

Among the people who agreed to resume ART, 18 of them were immediately escorted to the ART centres by the ORWs. 26 clients were categorized as others, of which 2 clients were already on ART, and of 24 clients, some clients houses were locked, not willing at all, or not willing to talk at all.

Table 1: District-wise break-up of results of follow-up visits by ORWs S.No Characteristic 1 Met the client

2

Kurnool WG

Medak VZM Tirupathi Guntur EG

ATP TOTAL

Interviewed 6 85 18 26 23 47 146 51 Counseled 7 42 11 2 8 2 1 0 Escorted to ART Centre 0 8 4 3 0 1 1 1 Total -Met the client 13 135 33 31 31 50 148 52 Not met the client Address related issues 17 199 5 7 47 96 79 65 Migrated 11 35 5 6 22 29 52 24 Died 6 158 4 2 54 139 167 42 Other reasons* 1 7 7 4 3 4 Total- Not met the client 35 399 14 15 130 268 301 135 Total 48 534 47 46 161 318 449 187 * Side effects, Visit to mother, locked house, not willing to speak, patient in hospital, mentally disturbed

Reasons for LFU Of the 493 LFU persons who were met, the ‘reasons’ for LFU’ were gathered from them. On an average, two reasons exist for people turning into LFU status. A total of 1,128 responses were received from them and these are summarized below:

402 73 18 493 515 184 572 26 1297 1790

Graph 2: Reasons for LFU 176

Fall Sick

142

Cannot afford long distance travel Long Distance travel

107

Feeling better and stopped taking the ART

107

Long waiting time at ART centre

95 89

Loss of Daily Wages

80

Not aware of the necessity to take the‌

74

Side affects

69

No one is there to take to ART centre

62

Other Reaons

46 41

Taking Alternative medicine Registered in another ART centre Alcoholism

21

Absence of basic facilities at ART centre

19 0

20

40

60

80

100 120 140 160 180

Based on the above, the following broad categorizations can be made as reasons for LFU: 22% clients discontinued ART due to side effects (6%) and falling sick (16%) 20% clients could not visit the ARTC due to economic reasons - with 8% repor reporting loss of daily wages (8%) being a consideration and 12% reporting high travel cost; 16% clients reported poor access and long waiting time as reasons that impede or dissuade them from accessing the ARTC – 10% reported lack of public transport to reach the ARTC located at the district headquarters; 6% reported no-one no to escort them; 11% clients stated long waiting time (9%) and ARTCs lacked basic amenities such as urinals due to which they did not feel like visiting the centre again (2%).

9% stopped taking aking medicines because they felt better and did not think it was necessary to continue medication life-long; long; 8% clients had either got themselves registered to a new ARTC (4%) or had shifted to an alternate system of Indian medicine (4%); 2% quoted alcoholism holism as reason for them to become LFU. When are patients more susceptible to become LFU? The project also analyzed records available with ART centres of 1,648 individuals with their start date of ART and last visit to the ART centre.

The table below indicates that the most number (68%) of LFUs happen within the first four months from initiating the medicines. It is also evident that the 40% of LFUs happen within the first 30 days.

Table 2: Rates of LFU against period of treatment initiation S. No Days # of LFU clients 1 2 3 4 5 6 7 8 9 10 11 12 13 14

0 days-First time visit is the last visit Within 30 days of starting ART Within 31-60 days of starting ART Within 61-90 days of starting ART Within 91-120 days of starting ART Within 121-150 days of starting ART Within 151-180 days of starting ART Within 181-210 days of starting ART Within 211- 240 days of starting ART Within 241- 270 days of starting ART Within 271- 300 days of starting ART Within 301- 330 days of starting ART Within 331- 365 days of starting ART Above one year Total

309 358 216 127 110 65 70 60 42 36 27 29 37 163 1,648

Cumulative Percentage 19 40 54 61 68 72 76 80 82 85 86 88 90 100

The LFU tracking study helped in understanding the reasons and targeting few strategies within district and at the state level. The findings were disseminated to the APSACS and later to all the district level official and partners including the ART staff.

It was during this time a monthly coordination mechanism at district level was established and still being continued.

LFU studies helped the DAPCUS, APSACS and Balasahyoga program to understand the issue deeper. It also helped in targeting those households registered with Balasahyoga program and ensuring maximum adherence among them through a close follow-up by the Balasahyoga outreach workers.

Other useful findings • • •

The male is more prone to become LFU LFU is possible in all age brackets It is learnt that unless the databases are up-to-date, and software can generate the LFU line lists automatically, it is possible that all may not be tracked even after they become LFU, i.e. after three months.

• •

If the records are not up-to-date, the clients who are regular will also be shown as LFU. Hence, records updating is must for proper listing of all LFU cases.

People have multiple reasons for LFU. Majority of the clients were having more than one reason to become LFU. One client did report nine reasons for LFU.

LFU study is different from the LFU as it is used. LFU study is a subset of LFU client’s tracking and bringing them back to treatment. During this LFU study, besides tracking the clients and persuaded them to resume the treatment, the reasons for non adherence were explored. The findings were documented, presented and discussed. Next action steps that can be taken were explored in the Care Coordination meeting.

Finding the reasons for non adherence, thus LFU, helps the ART centre, and the BSY in reducing the LFU clients considerably if the feedback provided is acted upon sincerely.

Chapter 3: Planning & Implementation LFU is a multidimensional issue. However, research done on LFU is very less in India, going by the search results in one can get, even though everyone agrees on the point that LFU should be reduced. It is poorly studied in India and even more poorly studied about the case in Andhra Pradesh.

Reasons should be known to address the problem. In health settings, reasons from the health care providers and receivers will be different. Most of the literature related to LFU is more skewed towards the medical conditions. Less research exists on why an individual chooses to become LFU even after knowing that life is in danger because of that decision. The individual perspective with all its complexity is missing in understanding LFU and studies that are available in the public domain.

Irrespective of the growing fact, there was no systematic attempt to contact patients in person, by phone or by mail because of various reasons which include many patients reluctance to meet them and their worries around confidentiality and their request not to be contacted. The networks did try to meet them; however, those contacts were never recorded properly. The reasons for their unwillingness to continue the treatment and for non adherence were never explored.

Any behaviour may have more than one reason. Unless the reasons and the interplay among the reasons are not mapped for the behavior, the behaviour cannot be modified for something better. All reasons are not equal. Some reasons initiate, some promote and some inhibit and some sustain behaviours. An attempt is made to find out if there is any one consistent reason that promotes and sustains LFU. The analysis did not prove any one and only such reason.

Hence, it was decided to use an integrated and comprehensive system to address this issue while establishing the best practices so as this continues post BSY as well.

ART care coordination meetings Given the field reality, it is clear no single entity can track all the LFU patients. Hence, there is a necessity for care coordination meeting. APSACS policies do support the care coordination meetings. The meetings are to be called by the ART medical doctor to all the partners in the district.

ART care coordination meetings were organized in the beginning to get the permission and support for LFU studies. The teams ensured regular ART care coordination meetings during the LFU study and informed them about the progress. A new habit is inculcated. Once the LFU studies are done, the reports were shared and discussed.

Care coordination meetings with LFU as one of the agenda point happened more or less regularly, at least once in a month. It was planned to have prepared structured agenda and

circulated in advance to partners so that partners may come prepared. Meeting minutes need to be prepared, and circulated to all the partners without fail. Unless the care coordination meetings happen regularly, the ART centre, and the ADMHO may not feel the ownership of the LFU process. Ownership will come automatically as they are expected to lead the discussions and take the decisions. That is why care coordination meetings should happen regularly. This new habit has to be inculcated without fail.

It is suggested that happening of care coordination meetings with LFU as an agenda point should be the monitored and ensure that those meetings happens. Monitoring, feedback, learning, reorientation, competition and cooperation etc all can be done through the care coordination meetings only.

Preventing LFU Prevention should come first. Without preventing the LFUs, the problem of the LFUs cannot be contained. Once the necessary streamlined processes and agreements are in place, prevention should get the top priority. Earlier, prevention was never a focus even though it should be.

Situation improved a lot on the prevention front even though counseling needs to be improved.

Tracking fatigue steps in for all partners. Prevention activities include counseling from LFU perspective, improved counseling at ICTC and ART centers, link ART centers and on demand counseling. Besides counseling, all conversation points need to include the adherence.

Linkages and referrals need to be improved. Better data management between the ART centers related to the transferred in and out cases, link ART centers and ART centers. Clients who did not turn up for the scheduled visit need to be followed up at the earliest.

It is better to prevent the clients becoming LFU. It is better to prevent LFU to the extent possible, instead of tracking and persuading them to adhere to the treatment. Reasons for LFU are many and varied. All those reasons need to be addressed at least to a larger extent if not completely to reduce LFU.

Some ideas, concerns are mentioned below to prevent LFU 1. Adherence counseling and continuous systematic follow up for the first six months is essential. The counselors need to spend more time, explore various issues with the clients for the first six months. Ongoing support for the first six months proves to be crucial to prevent the LFUs. It is supported by the fact that in the beginning everyone is in denial mode, and in a very frustrating, confusing mind. All these may force them to go for the life threatening decision of choosing non adherence.

2. Adherence fatigue is a reality. New ways has to be found out to help people and counselors to address this issue. It is easy to forget, and even more easier if consequences are not instant and people are bored.

3. In counseling sessions, migration- both seasonal and permanent migration- issues as well need to be brought open and addressed. Migration should be one of the main focus points in the counseling sessions.

4. Migration element also has to be included while collecting the client data during their first ART visit. This requires changes in the formats and might require evidence based advocacy at the policy levels.

5. In day to day situation, on case by case basis, ART medical doctors do allow others to collect medicines on some ones’ behalf, if that person brings the necessary card with him and convince the medical doctor. This practice is not publicized or promoted for various medical reasons. The same convenience can be extended officially to all with terms and conditions.

6. Long distance patients and patients who have to change many buses can be treated on priority basis. This has implications.

7. As of now the tracking partners are reporting more clients are willing to come, but the number of the clients resuming treatment at ART centre is not encouraging. There is a need to use the ART counselors for the counseling the “willing to resume treatment but did not resume” clients.

8. There is a need for persuasion training to the ORWs to persuade the clients to resume the treatment Besides preventing the clients becoming LFU, all efforts need to focus on plugging bigger leakages such as the loss between the facilities- mainly between the ICTC and the ART centre, and in the facility- between the PRE-ART and on ART. Unless this is done successfully, the major problem remains unaddressed.

MIS tracking: MIS clients are who missed their scheduled visit. These MIS clients will be labeled as LFU once they crossed the 90 days period without ART. Although it is strongly urged during the counseling sessions not to miss more than 3 doses for 60 doses, the present guidelines are not clear why the facility need to wait till they become LFU to start tracking. As there is no rule or guidelines to say that they should not be tracked, BSY initiated the MIS tracking in ART centers.

Tracking MIS clients is comparatively easier when compared with the old LFU cases. It is told during the visits that convincing and making them resume to treatment is also relatively easier.

By tracking and resuming the MIS clients, the process has been preventing the MIS clients turning into LFU. This is a secondary way of preventing the clients becoming LFU. The primary way is through counseling and with the client’s involvement only.

Due visit date tracking: Further to the MIS tracking idea is in place, the goal is to reduce even further the time taking to identify the client who missed the scheduled visit and track them so that they can continue the treatment without even missing a few days of treatment. The Daily due visit tracking is born as a result. It consists of four specific steps. First step is preparing the visitor’s list for a full month with the date of the next visit. This acts as a reference to compare later. From the next month onwards, the clients visited will be compared with this master list and the clients who missed their scheduled visit will be followed up by phone or mobile if available. If the client did turn up within the few days (2 days ideally), the client has the medicines and thus the treatment continues. If the client did not turn up, the same will be forwarded to the District Project Manager (DPM) for distribution to the LFU tracking partners. It is learnt that, further to the discussions with the DPMs, that a clear directive and a template would help them to enforce with the tracking partners. It stands where it was. However, in all ART centers, irregularly, people are following them up the clients who missed the scheduled visit during the lean times of the day.

BSY planned an intervention of Voice Alerts and SMS reminder service to the clients. Got in principle approval and vendor scouting is being done. Everything is ready and once the dependable vendor is selected, the intervention will be rolled out. This intervention eliminates the frustration of calling people to remind them about the scheduled visit.

Address updating: This is one of the intervention initiated and is been continued. All counselors were requested to correct, update or detailed the client contact information, their care giver information at every visit so that they can be found easily. Counselors were requested to ask for the phone numbers, cell phone numbers, second residence etc. Counselors are also exploring whether the clients are expected to move within the next 6 months. Taking the photos of the new clients at least is strongly suggested. If counselors are comfortable, they can check the phone or mobile number of the person given using their mobiles.

Clean LFU line list: Crosschecking the line list is one of the critical activities once the LFU line list is prepared. Once the LFU line list is prepared, the numbers mentioned in the report should match with the numbers in the LFU line list. The LFU line list should not have reported deaths, restarted case, transferred out cases to link ART centers and other ART centers. The LFU line list should not contain the duplicates as well.

Referral and Linkages: In any ART centre, some of the LFU clients are from other districts and other states also. BSY LFU tracking recognized the issue. However, given the resources in hand, it was decided to streamline and stabilized the LFU clients tracking of that district only. Further to the streamlined

operations, it was planned to involve the DAPCUS for Inter district LFU tracking. It was suggested to send the LFU cases of the other districts to the respective DAPCUS for initiating the tracking in those districts through official channels. Attempted in East Godavari for LFU cases in West Godavari and none of the clients reported back in East Godavari. However, few deaths were reported. This activity and tracking clients from other states can be successfully implemented if the APSAC S is really particular about.

Chapter 4: Monitoring Monitoring LFU tracking LFU tracking is a process defined as series of steps that needs to be done to track all the LFU clients in the district so as to make them resume ART treatment. It is also recognized that for various reasons all LFU clients cannot be tracked. It is expected that by tracking and convincing the LFU clients to resume treatment will decrease mortality and morbidity rates in the LFU clients, thus overall increase in the clients ever registered, alive and on ART. This also reduces the orphaned children.

How do we know it is working?

The following three will help in understanding and deciding whether the strategy is yielding results as expected or not. Every Month, ideally, these three should happen 1. Number of clients resumed treatment are more than new LFU clients for that month 2. Number of clients becoming LFU is decreasing on monthly basis 3. Number of clients resuming treatment is increasing on monthly basis If all the three happening, then it would be ideal. However, in reality, that is very difficult to achieve. However, one should happen that is number of clients becoming LFU should be either stable or decreasing on monthly basis. This fact alone can help in reducing the net LFUs over a period of time.

If only one indicator that needs to be monitored consistently every month, the LFU percent should be stabilized or reducing (compared with patients ever on ART) Tracking has its highs and lows. One cannot expect consistent performance. It is not just possible. This results in inconsistent performance related to reducing LFUs. Two indicators are proposed to monitor the performance of the training. Two main indicators, one related to efficiency and another related to effectiveness are proposed. The same indicators can be used for the ART centre as a whole and as per the partner as well. Interpretation of the indicators More the score, Better the result. Scores are between 0 and 1. Aim for higher score Efficiency Indicator Tracking efficiency= Number of clients tracked/ Number of LFU clients given Efficiency indicator talks about the capacity to Track. As the tracking is continuous, it is expected that the ORWs should meet more number of clients and convince them to resume treatment.

Effectiveness Indicator Tracking effectiveness= Number of clients resumed treatment / Number of clients tracked & found alive Effectiveness Indicator reflects Capacity to Convince. Tracking and meeting the client is one aspect, convincing the client to resume the treatment is another aspect. Ideally, ORWs should meet all LFU clients and convince all of them to resume treatment, so as to reflect in the reduced number of LFU clients in the next month.

How to monitor the ART care coordination meetings ART care coordination meetings ensure planning, communication, control and coordination and feedback required for the LFU tracking. Unless the data is flowing, people are exchanging and sharing the value with one another, the interest cannot be maintained at all. ART care coordination meetings are also a required space for reflection, and as a way and mean for the mutual accountability.

• Number of ART care coordination meetings happened (It is expected that at least once in a month a meeting should happen) • On an average, o Number of partners invited to each care coordination meeting (Although it is routine to invite all the agreed partners, partners may be dropped for other reasons) o Number of partners attended for each care coordination meeting (Ideally all invited partners should come to the meeting, or inform in advance their inability to attend for other valid reason- the assumption being if meeting is useful, people attend meetings) o Number of attendees for each care coordination meeting o (If meetings are purposeful and useful, number of attendees will remain same or increasing) o Number of hours spent for each care coordination meeting o (If more time is being spent means, there is a possibility of discussion, debate and understanding each other. People argue or discuss when they are really involved or wanted to be involved or it is a priority) • Is LFU a standard agenda item (Yes/No) (LFU should be a persistent agenda item) • Other agenda items- list all agenda items • Number of decisions taken regarding LFU (Decisions are the result of the discussion. If only discussion is happening, and no decisions and no follow up, there is no utility of the meetings) • List all the decisions (Major/Micro/Nano) that were taken in the care coordination meeting • Number of decisions that were implemented so far • List the decisions that were implemented so far

Chapter 5: Key outputs and Outcomes Outputs of the LFU studies: All districts where LFU studies were conducted have the LFU study report. These studies increased the awareness about the BSY-CF, and especially about the LFU, its casues and how that can be reduced.

Outcomes of the LFU studies: Besides resuming the clients for treatment, LFU studies provided the evidence, clarity and shown the possibility that LFU clients can be tracked systematically and routinely in a coordinated manner on monthly basis. Multidimensionality of LFU is understood. LFU is acknowledged as a problem that needs to be addressed and people felt that it can be addressed to a large extent.

Outcomes of the LFU tracking process: Due to the streamlining and the processes and capacities that are built, LFU clients’ tracking is systematic, dependable in al ART centers across the BSY. MIS Client tracking is also running successfully in three districts and in 8 ART centers. It is also proven that Pre-ART LFU client tracking can be done. Overall, people willing to track and bring back the clients have increased.

LFU entered into the top of the Agenda. LFU is a discussion point. LFU is recognized as a growing problem. People also realized that it is possible to reduce LFU and prevent LFU provided teams really work in tandem.

LFU continuum gained the mind space of all the actors involved. Systemic processes are in place. The teams are confident about the way to be followed to maintain or to reduce the LFUs. They have the knowledge about the prevention of the LFUs as well. ART staff feels confident about the way to be proceeded. The current institutionalized LFU tracking created a reference to the staff and thus the same mechanism will be used for all the activities where the community and the clients are involved.

ART care coordination meetings are more or less regular. Counselors and data managers are preparing LFU line lists on monthly basis. The same is being shared to the respective tracking partners, DAPCUs to track those LFU clients in their respective accepted and designated areas.

Further to the tracking, and resumption of the clients, the LFU list is being updated on regular basis.

LFU line list preparation is systematic and routine now. Tracking is continuous on monthly basis.

Found success in the districts either by reducing the LFU rate or stabilizing it. Facility and community partners accepted the importance of LFU tracking. The way the problem is approached also gained acceptance at the district level and at the APSACS level also.

Mindshare on the LFU increased. Understanding of LFU and its complexity has increased.

LFU as a continuum gained foot hold- MIS tracking, daily due list tracking, and Pre-ART LFU tracking- in the ART centres.

Increased awareness and knowledge on issues related to PLHA software, and the data management at the ART centre and finally discussions and number of people willing to talk about LFU has increased.

LFU is one of the Agenda point in the monthly video conference with ART Centres by Project Director APSACS. It was decided to do a comparative assessment between BSY and Non-BSY districts to see there are any difference. In order to compare the performance on LFU tracking and identification of gaps, if any between BSY and Non-BSY district the following analysis was carried out. It should be informed that APSACS data is not that reliable.

Comparison of LFU performance between BSY and Non-BSY districts Table: Comparison of ARTC in BSY and Non-BSY districts, across important LFU parameters Characteristic BSY Non BSY Number of ART centres (Sep 2011) 21 22 Number of new ART centres added during Sep 09-11 7 4 Cumulative number of “Ever on ART clients”, inclusive of Sept 2011 85,590 90,598 Number of new clients (Ever on ART ) increased during Sep 09- 11 43,176 39,792 Cumulative LFU clients (Sep 2011) 8511 10662 Number of LFU clients re-entered 414 101 Overall LFU % in Sep 2011 of all ART Centres 9.94 11.77 Overall increase in LFU% from Sep 2009 to Sep 2011 (of same set of 2.73 3.10 ART centres)(inclusive of Guntur) Number of centres where LFU is reduced 5 2 Number of centres where LFU is increased 8 13 Number of centres where LFU rate is in Single Digit(Less than 10%)(Sep19 12 11) Number of centres where LFU rate is in Double Digits (More than 2 10 10%)(Sep-11) Number of centres where LFU rate was in double digits and is reduced 2 0 to single digit during the period Source: APSACS CMIS reports

•

All most double the number of ART centres have been added in BSY districts compared to the non-BSY districts between Sept 2009 and Sept 2011.

• •

•

• •

The number of cumulative LFU clients has come down in BSY ART centres in spite of increase in number of new clients.

Over all, BSY district show less LFU rate by 2 per cent compared to the Non-BSY districts. If Guntur is removed as an outlier, then the increase is 4.5 percent. If Guntur is removed, the overall LFU percentage is reduced to 7.3 percent for BSY Overall increase in LFU% is also comparatively less in BSY. If Guntur is included, the difference is minor. If Guntur is excluded, there is a decrease in overall LFU rate from 8.86 to 7.3 percent. This is achieved in spite of the increased number of new LFU clients. The increase in LFU rates in Guntur is mainly due to inclusion of all old LFU cases during the data cleaning process.

Number of centres that reduced LFU is more in BSY districts than in non BSY. Number of centres where LFU rate is in single digit is more in BSY and number of centres where LFU rate is in double digits is also less in BSY districts than in Non-BSY districts.

It can be concluded that the LFU tracking system established in the BSY districts has been working well. However, some centres need little attention on reducing the percentage of LFU further more.

For the sake of this comparison, data of CMIS from APSACS of two different years – Sept 2009 and Sept 2011, has been used with the permission from APSACS. It did include children. The children data is clubbed with adults for the analysis.

The children LFU trend remains same in line with the adults, except in Ananthapur and Eluru where it increased and remained same in Chittor in BSY. In Non BSY, the children LFU rate is decreased in Chest, Karimnagar, Ongole, Osmania, and Warangal and remained same in line with the combined trend.

The distribution of the children LFU is as follows Table : Distribution of LFU children in Balasahyoga ART centres Year 2009Year 2011LFU Clients-BSY Increase Sep Sept Adults 3336 8243 4907 Children 138 268 130 % of children 4.14 3.25 -0.89 Table: Distribution of LFU children in Non-Balasahyoga ART centres LFU Clients-NON Year 2011Year 2009-Sep Increase BSY Sept Adults 4722 10299 5577 Children 190 363 173 % of children 4.02 3.52 -0.50

Overall, inferring from the two above tables, one may conclude that in BSY districts, the number of children becoming LFU per every 100 adults is reduced more than in non BSY districts. This is even after the data cleaning exercises in ART Centre like Guntur.

1. Performance of LFU in Balasahyoga ART centres Combined-BSY Table: Performance in Balasahyoga ART centre on LFU (Sept 2009 and Sept 2011) LFU % in 2009 LFU % in 2011 S. LFU Ever LFU ART Centre District Ever on No. clients on LFU% clients LFU% ART-D -N ART-D N 1 Guntur Guntur 643 10480 6.14 3330 14816 22.48 West 2 Eluru Godavari 944 6442 14.65 1189 10010 11.88 3 Adilabad Adilabad 16 350 4.57 78 836 9.33 4 Sangareddy Medak 72 1241 5.80 252 2842 8.87 5 Mahbubnagar Mahbubnagar 23 1026 2.24 232 2788 8.32 6 Kurnool Kurnool 96 2124 4.52 374 4593 8.14 7 Anantapur Anantapur 348 4419 7.88 544 7292 7.46 8 Narasaraopet Guntur 292 4007 7.29 9 Kadapa Kadapa 402 3435 11.70 333 4606 7.23 East 10 Rajahmundry Godavari 30 918 3.27 333 4663 7.14 West 11 Tadepalligudeum Godavari 223 3458 6.45 12 Tenali Guntur 0 706 0.00 160 2575 6.21 East 13 Kakinada Godavari 619 5753 10.76 596 9763 6.10 14 Tirupathi Chittoor 214 3352 6.38 285 4694 6.07 15 Vizianagaram Vizianagaram 65 1704 3.81 187 3643 5.13 16 Produtur Kadapa 42 888 4.73 17 IDH-Guntur Guntur 23 846 2.72 18 Kadiri Anantapur 13 515 2.52 19 Chittoor Chittoor 2 464 0.43 25 1460 1.71 20 NRI Guntur 0 260 0.00 21 RDT Anantapur 0 1035 0.00 Total 3474 42414 8.19 8511 85590 9.94 Without Guntur 2831 31934 8.87 5181 70774 7.32 Average of same ART centers 5.57 8.29 Legend: I- Increased, D-Decreased, NAC- New ART centre, and No- No conclusion

Status Diff

I

16.34

D I I I I D NAC D

-2.78 4.76 3.07 6.08 3.62 -0.41 7.29 -4.47

I

3.87

NAC NO

6.45 6.21

D D I NAC NAC NAC I NAC NAC I D

-4.65 -0.31 1.32 4.73 2.72 2.52 1.28 0.00 0.00 1.75 -1.55 2.73

Note: For better and realistic comparative purposes, the averages are calculated for those ART centres where data is available at both points of time. In BSY districts, only 14 ART Centres were considered. Thus difference between overall and average value can be found Table: Number of ART centres against the LFU rate status in BSY centres LFU rate Status Number of ART centres Av. Percent- Decrease or Increase -2.53 Decreased 5 (-4.65 is the maximum reduction achieved) 5.02 Increase 8 ( 16.34% increase in Guntur, due to data cleaning) No Conclusion 1 New centres 7 Total centres 21 The above tables indicate that the LFU rate increased by 1.75% in September 2011 compared to the LFU rates in September 2009.

Of the total 21 ART centres in BSY districts, eight centres shown increase and five centres shown decrease in LFU rates over two years gap. Mostly, the centres located in Telangana region have shown increase in the LFU rates compared to the other centres due to Telangana agitation during the comparative period.

The September 2011 data from Guntur ART centre shows 22.48% increase compared to the other centres. This huge numbers (16.34%) are adding to the total and have affected the overall average.

In case, Guntur ART centre is not considered in both years, the overall LFU is reduced from 8.86 % to 7.32 %. The LFU rate is reduced overall in BSY. If Guntur is excluded in year 2011 only, difference in overall LFU rate comes down from + 1.75% to - 0.8% only. This shows, overall in BSY districts, LFU rate is reduced. The reason for this centre to show spike in LFU cases is mainly due to the complete data cleaning exercise that was carried out in this centre.

In the Rajamundry ART centre, it is mainly due to Prison and hospital cases which added upto the total. Rajamundry has a central prison and all the prisoners once they leave the prison will end up as LFU. Similar is the case with the hospital cases.

The Kurnool ART centre is undergoing too many changes.

In other two ART centres, which are relatively small, the increase in percentage is mainly due to increase in LFUs compared to previous very small number of LFUs, e.g., Chittoor once

maintained zero new LFUs for three months, but could not continue the same status due to the issue of wrong addresses and the LFU rates are increasing in the centre.

2. Performance of LFU in Non-Balasahyoga ART centres Combined-Non BSY Table: Performance in Non-Balasahyoga ARTC on LFU (Sept 2009 and Sept 2011) LFU % in 2009 LFU % in 2011 Ever Ever S. LFU LFU ART Centre District on on No. clients LFU% clients LFU% ARTART-N -N D D Karimnagar Karimnagar 1 535 3942 13.57 1521 7518 20.23 Nizamabad Nizamabad 2 347 2512 13.81 913 5047 18.09 Vijayawada 3 Krishna 811 6630 12.23 1603 10644 15.06 Gandhi 4 Hyderabad 247 3084 8.01 693 5206 13.31 Nellore Nellore 5 164 2271 7.22 596 4856 12.27 Ongole Prakasam 6 719 6183 11.63 1135 9604 11.82 Nalgonda Nalgonda 7 96 1601 6.00 386 3390 11.39 8 Khammam Khammam 282 2314 12.19 456 4245 10.74 Chest 9 Hyderabad 223 2576 8.66 451 4356 10.35 10 Visakhapatnam Visakhapatnam 722 6934 10.41 931 9067 10.27 11 Osmania Hyderabad 420 6506 6.46 819 8447 9.70 Warangal 12 Warangal 198 2765 7.16 414 4866 8.51 Srikakulam 13 Srikakulam 96 2379 4.04 319 4197 7.60 14 Anakapalli Vishakapatnam 46 735 6.26 155 2294 6.76 15 King Koti Hyderabad 0 189 0.00 58 925 6.27 Bhadrachalam 16 Khammam 32 556 5.76 Tandur 17 RangaReddy 26 495 5.25 18 Niloufer Hyderabad 6 185 3.24 53 1042 5.09 19 Marakapur Prakasam 32 863 3.71 20 Machilipatnam Krishna 0 0 69 2266 3.05 21 Ramagundam Karimnagar 0 557 0.00 22 Chest-Vijag Vishakapatnam 0 157 0.00 Total 4912 50806 9.67 10662 90598 11.77 Average of same ART centers 8.18 11.28

Status Diff

I I I I I I I D I D I I I I No NAC NAC I NAC No NAC NAC

Legend: I- Increased, D-Decreased, NAC- New ART centre, and No- No conclusion

Note: For better and realistic comparative purposes, the averages are calculated for those ART centres where data is available. Hence, in non BSY districts, only 16 ART Centres were considered. Thus difference between overall and average value can be found.

6.66 4.28 2.83 5.30 5.05 0.19 5.39 -1.44 1.70 -0.14 3.24 1.35 3.57 0.50 6.27 5.76 5.25 1.84 3.71 3.05 0.00 0.00 2.10 3.10

Table: Number of ART centres against the LFU rate status in Non- BSY centres Av. Percent- decrease or LFU rate Status Number of ART centres Increase 0.79 Decreased 2 ( 1.44% is the maximum reduction) 3.58 Increase 13 (6.66% is the maximum increase) No Conclusion 2 New ART centres 5 Total ART centres 22 From the non-BSY centres, 13 ART centres show increase in the LFU rate. Of these 13, nine centres are located in Telanagana region.

The decreased LFU rates are noticed only in two ART centres.

Reasons for decrease or increase in LFU rates in the non-BSY district need to be explored further.

Comparison of LFU rates in BSY and Non-BSY centres in the state In Comparison between the BSY and non-BSY ART centres, the overall increase in LFU rates in Non-BSY centres is higher (2.18%) than the centres in BSY ART centres (1.75%).

Further, as noted earlier, the increased overall rates in BSY centres are due to the major data cleaning exercise that was carried out in the centre which added up to the overall increase.

Without Guntur ART centre in both periods, the difference in overall LFU rates between the data from Sept 2009 and Sept 2011 is: In BSY ART centres overall, the decrease in LFU is by 1.54% (with Guntur increase is 1.75%) In Non-BSY ART centres, overall, the increase in LFU is 2.10% (If data cleaning is done like in Guntur, the growth may be more) Conclusion: LFU tracking works. The results are in streamlined operations, clarity and certainty emerged with the benefit of a consistent practice where the results can be expected.

Chapter 6: Lessons learnt & limitations Challenges observed Some of the LFU patients were reregistered and started taking treatment in the same or at another ARTC with fresh registration, however, there are still considered as LFUs. In old ART centers, even the returned LFUs were marked as new clients and who were in LFU list remained LFU. As a result, the cumulative LFU is always increasing.

In many ART centers, other district LFU cases are present. These clients cannot be tracked by the existing mechanisms. New mechanisms need to be worked out with the coordination of the DAPCUS. With the present rules and regulations, the LFUs cannot be transferred to the respective district ART Centers.

Old LFU cases are not possible due to wrong addresses, migration and status unknown. These clients still remain in LFU list. It is a perennial challenge to track those clients and find them.

Clients with pseudo names and identities are also a challenge PLHA Software issues are many. The main issue is lack of dependability as it is not producing any useful and accurate results.

Communication, coordination and working as a team is always a challenge observed.

There were no real specific incentives for the LFU tracking even in the BSY programme or in the ART centers. LFU tracking is not a top most activity for majority of the partners, and their staff. It is not the only activity for any person involved in the process. Competencies and interests vary as per the other demands.

Constraints overcome: In the public health systems, meetings are called for when it is felt necessary by the top person.

Review meetings are common. However, coordination meetings are not regular. Care Coordination meetings were planned and institutionalized. All actors were invited and involved.

This mechanism developed the required communication, coordination mechanism also. It was planned to develop a mutual accountability and space for the discussion, debate and argument on the care and support to the patients. BSY ensured that these meetings happen at least once in a month. BSY ensured that care coordination meetings are in their mind space and used these spaces and duration for bringing out coordinated mechanisms and support for change.

Specified date, time and place have been arrived to help people to plan their schedules accordingly.

Tracking partners did have issues with the addresses given, same addresses given etc. After mutual exchanges, the expectations were clear.

Competencies and sensitivity of the ORWs were enhanced through training and formal and informal feedbacks.

The tracking mechanism has undergone and adapted to various changes such as - reduction of CCCs, closure of programmes, change in the formats, and increase in ART centres, Link ART centres, and changes in tracking partners.

Prevention: Prevention is the critical component to address the LFU issue.

• • •

Besides tracking, Balasahyoga also focused on prevention of LFUs in the ART centre through initiation of MIS tracking, daily due list generation and phone follow up Balasahyoga staff has ensured that the ART clients avail transport facility provided by government.

Institutionalized LFU tracking through regular ART-CCC coordination meetings across all ART centres, regular generation and sharing of LFU line list with tracking partners and initiating appropriate actions on the feedback received from the partners.

Distinctions learnt Many distinctions are in order. One should not assume that ART centre visit adherence is same as treatment adherence. It is learnt during the field visits to BSY households that some clients do religiously come to the ART centre, but don’t even open the bottles. They carry the same old bottle as well. Some clients do throw away the tablets as well to show that they are adhering to the treatment. Visit adherence is not equal to treatment adherence and thus should not be construed as same.

Treatment access, Treatment adherence, Treatment failure, and LTFU should be treated differently because they have different root causes and require different interventions. The ART centre should make conscious efforts to identify the other possible family members who might have infected thus need ART treatment. The client is individual, but the ART centre should consider the client as a part of the family and thus gently force themselves to make them part of the services through counseling, testing and treatment.

Challenges and Issues in tracking LFU The cumulative LFU reporting at ART centres is often incorrect because: • The denominator comprises of all the old LFUs and unless the client is confirmed dead or resume treatment, they are reported as LFUs. • LFUs from other districts, states, clients are registered as new cases

•

•

Those LFU clients who have resumed treatment were considered as a new patient, and these patents have not removed from the LFU list as there are no clear written guidelines from NACO/APSACS. Many of the LFU clients have not given their real names, correct/complete addresses, and hence it is difficult to track these clients.

In addition to these factors, various other operational challenges also affect On-ART LFU tracking, these are: •

• • •

Lack of sufficient and trained human resources on ground for tracking and followup. As of 31st March 2011, PPTCT outreach, HIV-TB outreach, ACT project (Access to Care and Treatment), Freedom Foundation have been transitioned out. Nurse Practitioners in the PHC also cannot be used. As of today also, in some districts CCCs are also not there. Partners and the ORWs are reduced heavily. Tracking majority of the clients is also a challenge now. CCCs ORWs are also not available mainly due to NACO evaluation report and thus closure of D grade CCCs. Remaining C and B grade CCCs are not that enthusiastically interested to do tracking, as there is a kind of hesitancy. Due to closure of PPTCT project, PPTCT plus ORWs were assigned to track LFU clients.Closure of Community Care Centres whose outreach workers were also assigned LFU tracking functions Transfer out of clients to other ART centres (because of establishment of new ARTCs and Link ART Centres (LACs) within the District.

Side effects due to change in ART regimen (recent observation) Making a child resume treatment is difficult as it depends on the care givers constraints and willingness. As a result, LFU child’s treatment resumption percentages are lower than adults.

As of now, realignments and readjustments are happening at the district level. In spite of that, it is a possibility that all new LFU clients in a district cannot be tracked completely in any one month. It is suggested to the ART centre staff to focus on MIS tracking through phones and on field as well so as to prevent the LFUs happening. It is not yielding consistent results due to erratic practice and non availability of phone numbers for many of the MIS cases.

Lessons Learnt: Building the correct and managing expectations is very much important. APSACS at some time during this period expected that BSY-TAPS can take address verification role in the districts where the CCCs are not functioning and BSY need to take proactive role in reducing LFU in three districts – West Godavari, Guntur, and Cuddaph which was done.

LFU tracking is energy intensive, time consuming. Most partners naturally fear that it might end up as another huge work. BSY-TAPS felt that they were doing work which they could not report

any as this is not captured in the BSY-MIS, and they were asked to do this work without getting anything in return for the efforts such as recognition, appreciations etc.

The focus of the FCMs and CVs is mainly on the Registrations and the Testing targets as they are being continuously monitored at all levels. Having such continuous focus and monitoring the LFU tracking and associated links with the budgets would have helped a lot.

If the LFU tracking as an activity, targets and associated costs are specifically marked in the sub agreements, the efforts would have been much better and without much dissent. LFU tracking is a seen as mechanism to get the clients into BSY programme.

BSY partners expected a clear direction and written directive from the highest level so as to prevent all issues in different meetings so as ensure that LFU tracking is continuous, and systematic, in cases where other partners such as CCCs and others are not available and are not willing to track LFU clients, in mandals wherever BSY taps are working. Directive went after a long gap of time.

LFU tracking by the TAPs is not being monitored on par with other aspects thus LFU is a priority among priorities, and the first priority to be reduced if other work load adds up. It should ideally be part of the FCM Micro Plan along with the targets. It is expected that FCMs and CVs need to be supported with additional financial incentive for the tracking.

There is no specific budget line to invest or spend the money for reducing or preventing LFU. Although targets were set for BSY-TAPs, the targets were never shared, enforced to any of the partners or taken seriously to the extent required. It is understood and perceived that the LFU tracking is an additional work without associated and proportionate budget to the TAPs. Expecting the worst is the best when multiple actors and processes are there. It was never expected that CCCs and programmes would be closed down, staff regular turnover, drugs shortages, changes in regimen, and political movements will come into the picture and affect everything.

Continuous focus and involvement of all actors is a necessary and sufficient condition for success of this project.

Advocacy with APSACS and DAPCU to regularly track LFUs and making it a central theme of review meetings was one of the major achievements of the program.

The Balasahyoga program, at district level facilitated and brought all the stakeholders under one umbrella. Under the strong leadership of ADM&HO, addressing issues pertaining to tracking LFU, coordination between facility-community, and overall accountability amongst all the stakeholders improved.

Structured process is essential for success. The mechanism of organizing regular coordination meetings, successful tracking, sharing best practices amongst partners, generating support among NGO partners were some of the crucial steps that the program first tried in few districts before it was adopted and scaled up formally in the remaining Balasahyoga districts.

Advocacy to involve the district health authorities, ART staff, data managers from ART centres and heads of NGO partners in streamlining the processes, establishing the data sharing mechanism, mandal wise area distribution and maintaining confidentiality had been the salient features behind the success of this program.

Capacity Building is the heart of any participatory intervention. The Balasahyoga program trained all the ORWs and district staff only after the coordination mechanisms at district level had been worked out. This resulted in establishing clear role for each ORW, better counseling skills, NGO wise mandals/households demarcation, mutual trust among partners, and up-todate MIS data at district level on LFU and on ART. BSY provided a structure and a reference which the facilities can use for all practical purposes where the communities and clients are engaged.

Data Management- BSY staff regularly followed up with the PLHA software company to rectify the errors found in PLHA software. Teams at BSY and districts collaboratively worked with PLHA Software Company in creating the new reports and testing the same as a team, thus led in better refined PLHA software versions.

Facilitating the tracking at the field level is possible.Now, the counsellors make sure that they get address proof from the clients and probe further to know the real addresses of the clients.

Chapter 7: Future Possibilities There is always some work that can be taken up in the project. Projects end. Work never ends and there is always a scope for improvement and innovation. The following are suggested with the intentions that these possibilities will be made into a reality Future possibilities 1. Clear written instructions on various issues needs to be given to the ART centre for appropriate response from them.

2. LFU list/ MIS list automatic line list generation- automatic and on daily basis using PLHA software that is free of errors and dependable. This calls for exercising proper authority on the PLHA software makers and coordinating with the various facilities.

Unless this happens, the data is malleable and influencable.

3. Updating the addresses, phone numbers regularly as a routine practice in the centers.

Making the field tracking easy by various means such as taking the caregiver phone number for tracking ease, and caregiver address etc 4. Reducing the time frame- as of now, unless the MIS tracking in place, nearly 100 days are lost between the client choose to become LFU and started tracking. This needs to be reduced by early identification of the cases and timely tracking of LFUs 5. Regular follow up of the LFU reenrolled on a specific basis 6. Counseling module for the LFU clients- at home, & at the ART centre, CCCs need to be developed, tested and made into part of the counseling curriculum and refresher training as well. Training is required for all health care providers in the ART centre.

7. Giving importance for the first six months to the first time clients is necessary to prevent clients becoming LFU. Even though extensive counseling is provided to the first time clients, all the on ART new clients should be treated, followed up for the first six months vigorously so as to prevent the LFUs. 8. Daily due list phone follow up and MIS cases tracking along with LFU should get the importance and focus.

9. Making LFU tracking a regular and consistent activity in all programs related to care and support interventions 10. In future, the focus should be on the loss between the testing at ICTC and registration at ART centers, and the loss between the Pre-ART and on ART, besides on prevention.

11. Multi-Pronged Strategy is required to reduce LTFU. Some of the components in that strategy would be-institutionalization of coordination and information sharing mechanisms among hospital and NGO teams, setting up of easy to use electronic patient tracking systems both at the hospital and in the field, monthly coordination meetings with all the program partners and referral agencies for sharing of information on lost to follow-up cases, strengthening of documentation on recording of patient progress, provision of travel incentives for poor clients, prioritization of the home visits for lost to follow-up clients, patient education on importance of follow-up care, training

and mentorship of the outreach workers on improving patient follow-up, and linkages to agencies that addresses socio-economic needs of the families.

12. Recognizing the fact that Long Term follow up prevents Loss to follow up and Minimizing the LTFU will bring Long Term benefits to one and all is essential Pending issues These pending issues need to be addressed as well for smooth operation across the ART Centers 1. Some of the clients are not in a position to come and take the medicines. The policy is not clear of those cases.

2. Door numbers changed in the towns. Wards and street names have been changed.

3. The phone numbers are PP phone numbers. Land line numbers are reliable as someone will be there to attend.

4. Many of the new data managers are not trained at all. All data managers need refresher training programme also.

5. Data management gains importance as there are now ART pensions. Hence, there is a need for improved robust data systems in place to prevent all unnecessary complications.

Special Case: Pre-ART LFU tracking Introduction Much loss happens between the Pre-ART and starting ART treatment. The extent of the problem cannot be quantified due to lack or gaps in the computerized database of the Pre-ART clients. One is not sure of how many pre-art clients need to come back for CD4 testing in any particular month. Unless the client comes back and asks for the same, there is no mechanism in place to track the pre-art clients for CD4 testing.

Pre-ART clients never got the due importance for various reasons. CD4 count is required to decide whether the pre-art clients need to be transitioned to ART treatment. One is not exact on how many are not regular with their CD4 testing and how many of the clients who are tested for CD4 count did not enroll themselves to ART treatment. It is believed that the number is more than the number of LFU on ART treatment.

Without knowing the expected date of return for CD4 tracking of all the pre-art clients, the ART centre is not in a position to know the expected number of Pre-ART clients that need to be tested for CD4 count testing. As tracking clients effectively requires complete up-to-date database with required fields, it is proposed to update the Pre-ART databases completely.

It is a fact that updating the databases is not an easy task and required consistent and continuous efforts of different actors. However, given the impact that it can provide, it has been decided to go for it.

BSY strongly felt that the necessity to track the lost to CD4 testing pre-art clients to reduce the mortality before they move on to on ART status and to reduce the morbidity. Although one is not sure of whether it is technically accurate to call the Pre-ART clients who did not turn for CD4 count as LFU, there would be no argument on the necessity to have CD4 testing done so that the required people are put on ART. Definition of LFU- CD4 tracking LFU-CD4 tracking is a process defined as series of steps that needs to be done to track all the Pre-ART clients for CD4 count test in the district to transition them to ART treatment.

Innumerable reasons may prevent to track all Pre-ART clients for the CD4 testing.

It is with the expectations that by tracking and convincing the Pre-ART clients to go for CD4 count testing will decrease mortality and morbidity rates in the Pre-ART clients, thus over all increase in the clients ever registered, alive and on ART. This also reduces the orphaned children.

Pre-ART LFU tracking process was initiated where the team felt that it was possible. It started in Kurnool, and Vizianagarm. Further to the field visit and CIFF satisfaction with the Pre-ART LFU tracking in Viziangaram, even with the then fluid situation and increased constraints, it was decided to go ahead with the Pre-ART LFU, whatever come may.

The Pre-ART LFU tracking was planned to happen in two phases. Higher engagement with the APSACS is inevitable to initiate and complete the institutionalizing the Pre-ART LFU tracking.

Present situation: In Kurnool and Vizianagaram- two ways of doing the tracking, two different scopes, and using all the available Pre-ART LFU data and is currently going on. It proved that Pre-ART LFU tracking is possible to do, provide the Pre-ART LFU Clients list is available readily. Pre-ART LFU tracking was initiated in two districts- Vizianagaram and Kurnool. In Kurnool, only children are being tracked by only BSY TAPS. In Vizianagaram, all clients were being tracked using all tracking partners.

First Phase: In this phase, once the PLHA software issues are resolved and it is being rolled out in other districts (assuming the SIMS takes its own course of time and testing), it is decided to roll out the best version in the Guntur and East Godavari districts.

Once the software is installed, with the permission and support of the APSACs and the ART centers, the previous past 12 months data of Pre-ART clients will be keyed in with the external resource agency. In the mean time, sensitization of the actors has to be done. The Pre- ART line list generated has to be categorized as per the ART center as well. The existing LFU tracking mechanisms such as ART care coordination meetings, distribution of mandals between the ART centers, etc need to be fine tuned, as three ART centers are there in Guntur and two in East Godavari.

Phase 2: Before the initiation of the phase two, a decision will be taken on whether to enter all the old data or not. If that is the decision, then the data entry will be done for 9 districts. If the decision is to go by entering one year old data only, then seven districts data will be entered.

Other processes will be followed similarly to initiate the Pre-ART LFU tracking In summary, although planned to initiate the Pre-ART LFU tracking in other ART centers in phase wise, it did not happen for two reasons. One of the two prerequisites are generating line lists of the Pre-ART LFU clients automatically from PLHA software did not happen and the next is to convince the partners on the possibility, the necessity and the procedures and processes that need to be followed did not required as there were no Pre-ART LFU line lists.

CASE STUDIES FOLLOW APPENDICES FOLLOW