HIV CARE AND TREATMENT CHANGE PACKAGE

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1 STRENGTHENING UGANDA S SYSTEMS FOR TREATING AIDS NATIONALLY HIV CARE AND TREATMENT CHANGE PACKAGE Synthesis of the most robust and effective QI interventions to improve HIV Care and Treatment in SUSTAIN supported hospitals in Uganda AUGUST 2017 The SUSTAIN project is made possible by the generous support of the American people through the United States Agency for International Development (USAID) under Cooperative Agreement number 617-A The project team includes prime recipient University Research Co., LLC (URC) and sub-recipients; The AIDS Support Organization (TASO), Integrated Community Based Initiatives (ICOBI), Uganda Catholic Medical Bureau (UCMB), Uganda Protestant Medical Bureau (UPMB), Uganda Muslim Medical Bureau (UMMB), Child Chance International (CCI Uganda), AIDS Information Centre (AIC) and ACLAIM Africa.

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3 Quality Improvement Change Packages Series The purpose of the quality improvement packages is to provide a synthesis of the most robust and effective QI interventions for effective HIV programming. The quality improvement packages series thematic areas include: prevention of mother to child transmission, laboratory, monitoring and evaluation, adolescent friendly health services, voluntary medical male circumcision, nutrition, HIV care and treatment, supply chain, Tuberculosis, and quality improvement. USAID/SUSTAIN acknowledges the work of the project staff, technical officers at MoH, and counterparts at supported facilities who have been instrumental to the project s many successes through implementation of the quality improvement interventions. The publication and production of these packages, as well as the work of the SUSTAIN project, was made possible by the generous support of the American people through USAID. The SUSTAIN project is led by University Research Co., LLC and works in partnership with: The AIDS Support Organization (TASO), Integrated Community Based Initiatives (ICOBI), Uganda Catholic Medical Bureau (UCMB), Uganda Protestant Medical Bureau (UPMB), Uganda Muslim Medical Bureau (UMMB), Child Chance International (CCI Uganda), AIDS Information Centre (AIC) and ACLAIM Africa, under Cooperative Agreement No. 617-A The views and opinions expressed here do not necessarily state or reflect those of USAID or the United States government. HIV Care and Treatment Change Package i

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5 Contents Quality Improvement Change Packages Series... i Acronyms... iv Introduction...1 Harvest Meeting...2 Change package for improving HIV care and ART services at high-volume hospitals in Uganda...5 Intended Use...5 Improvement Aim 1: To improve the proportion of clients in HIV care who are enrolled on ART to 95% by September 2016 at 11 Regional Referral Hospitals and 1 General Hospital in Uganda...6 Improvement Aim 2: Improve the proportion of HIV clients on ART that are alive and well 12 months after initiating treatment...10 Improvement Aim 3: To improve the proportion of clients on ART receiving viral load tests Key Challenges Moving Forward...18 HIV Care and Treatment Change Package iii

6 List of Acronyms ART Antiretroviral therapy CD4 Cluster of differentiation 4 CDC Centers for Disease Control and Prevention CME Continuing Medical Education DHIS2 District Health Information System, version 2 HC Health Center MoH Ministry of Health PMTCT Prevention of Mother to Child Transmission QI Quality Improvement RRH Regional Referral Hospital SUSTAIN USAID Strengthening Uganda s Systems for Treating AIDS Nationally TB Tuberculosis USAID United States Agency for International Development VL Viral load WHO World Health Organization iv HIV Care and Treatment Change Package

7 Introduction Since 2010, the United States Agency for International Development (USAID) has been working with Uganda s Ministry of Health (MoH) to improve HIV and AIDS service delivery at select health facilities through the Strengthening Uganda s Systems for Treating AIDS Nationally (SUSTAIN) project. Over the last seven years, the SUSTAIN project has aimed to: n Support the MoH to scale up prevention of Motherto-child transmission of HIV (PMTCT) and voluntary medical male circumcision (VMMC) as HIV infection prevention interventions within selected public regional referral hospitals (RRHs) and general hospitals n Ensure provision of HIV care and treatment, laboratory and tuberculosis (TB)/HIV services within selected public RRHs, general hospitals and health center (HC) IVs n Enhance the quality of PMTCT, VMMC, HIV care and treatment, laboratory, nutrition, supply chain management, and TB/HIV services within selected RRHs, general hospitals and HC IVs, and n Increase stewardship by the MoH to provide sustainable quality HIV prevention, care and treatment, laboratory and TB/HIV services at project-supported healthcare facilities. In 2014, the MoH adopted the Joint United Nations Programme on HIV/AIDS (UNAIDS) strategy that aims to have 90% of all people living with HIV know their status, 90% of all people with diagnosed HIV infection receive sustained antiretroviral therapy, and 90% of all people receiving antiretroviral therapy attain viral suppression, by The USAID/SUSTAIN project has been supporting the MoH on the journey to using quality improvement approaches, ongoing onsite supervision and mentorship, and supply chain support to ensure availability of commodities and supplies at 11 regional referral hospitals and one general hospital. The USAID/SUSTAIN project has provided technical, coordination and operational support to 12 hospitals in Table 1: List of Intervention Health Facilities Name of Facility Level of Facility Arua Regional referral hospital Fort Portal Regional referral hospital Gulu Regional referral hospital Hoima Regional referral hospital Jinja Regional referral hospital Kabale Regional referral hospital Kawolo General hospital Lira Regional referral hospital Mbale Regional referral hospital Moroto Regional referral hospital Mubende Regional referral hospital Soroti Regional referral hospital Uganda to deliver high quality HIV care and antiretroviral therapy (ART) services for both adults and children. The project was designed to strengthen Uganda s decentralized health system, and provided continuous capacity building opportunities for all stakeholders in the health sector. The project worked with all levels of the health system: Ministry of Health, district health officials, health facilities, and at the community level. Through off-site workshop training opportunities and onsite mentorship and coaching sessions, and continuous application of quality improvement approaches, hospital staff have been supported to: improve access to HIV care and nutrition services for HIV+ patients, improve enrolment of newly identified HIV+ patients into care, screen pre-art patients for ART eligibility, ensure retention in treatment for patients enrolled on ART, and monitor both immunological and viral load (VL) s for clients on ART. The project s approach to quality improvement (QI) was guided by the Model for Improvement that uses the Plan- Do-Study-Act cycles. HIV and ART experts from SUSTAIN supported the formation of multi-disciplinary improvement HIV Care and Treatment Change Package 1

8 teams at all supported health facilities, through which QI interventions were implemented. This improvement collaborative approach, where teams work to identify and address a myriad of challenges affecting the content and processes of care, is consistent with the Ministry of Health s Quality Improvement Framework and Strategic Plan. On a monthly basis, the improvement teams received coaching and onsite supervision and mentorship on how to identify gaps in care, how to prioritize areas for improvement, and how to develop, test and eventually implement ideas that could lead to improvements. a) ART initiation for eligible HIV+ clients, b) retention of HIV+ clients on ART for more than 12 months, and c) access to viral load monitoring among patients on ART. Harvest Meeting After six years of project implementation, medical officers, clinicians and senior nursing officers from the 18 hospitals gathered for a harvest meeting in August 2016 to reflect on their results, discuss both successful and unsuccessful s ideas, and share evidence on which pathways resulted in positive results. Guided by their experience in using QI to improve HIV care and ART services, they agreed on a set of best practices that could guide other hospital teams to improve HIV services and as they advance towards the goal. Divided into small groups, teams discussed the ideas they had tested, the steps they followed in introducing and testing these s, and the results they had observed that could be attributed to the tested s. During plenary sessions, the s were discussed further by a larger and wider group of representatives, who also evaluated and scored them based on relative importance, level of simplicity and how scalable they were. All the parameters (relative importance, simplicity and scalability) were scored 1-5 by the participants. A score of 1 (one) for any of the parameters meant the was not important, it was too complex and was Figure 1: Guide to interpreting the rating of ideas n Change was not n Only important n Change can n Change was n Change was important in a few aspects be important important very important n Change idea was n Change is often n Change can n Change is n Implementation too complex complex be complex sometimes is always smple n Change is n Scalable with n Scaling simple n Change is easily difficult to scale significant requires effort n Scalable with scalable challenges limited effort 2 HIV Care and Treatment Change Package

9 not scalable. A score of 5 (five) meant the was very important, or simple and/or scalable. The average scores are presented in Tables 2 4. Tables 5 7 provide a comprehensive list and description of all the ideas tested, with notes on the specific steps taken to implement the, the observed results and the number of facilities (scale) that implemented the specific s. Table 2: Rating of ideas implemented to improve the proportion of clients in HIV care who are enrolled on ART SN Change idea Number of facilities testing this Relative importance Rating Criteria Simplicity (not difficult or complex) Scalable Total score Average overall score 1. Assessing readiness for ART initiation even in the absence of treatment supporters Generating weekly lists of eligible clients Registering CD4 results in OpenMRS at the end of each week 4. Creation of specific child clinic days and have them synchronized with their parents ART initiation appointment days 5. Engaging volunteers to assist in ART documentation, especially ART register and patient ART charts 6. Identifying patients in pre-art who are eligible to start ART monthly 7. Holding weekly audit meetings to identify and address documentation challenges that delay ART initiation 8. Continuous Medical Education (CME) sessions, case conferences and mentorship sessions on ART to improve staff knowledge 9. Task shifting introduced nurse refills and nurserequested CD4 tests 10. Phone calls made to remind ART eligible clients to come for ART counselling on the specified appointment dates 11. Engaging expert clients to counsel ART eligible clients before they are initiated on ART 12. Transfer-out of eligible ART patients to nearest health facilities so that ART initiation is done from there HIV Care and Treatment Change Package 3

10 Table 3: Rating of ideas implemented to improve retention of HIV+ patients on ART for more than 12 months SN Change idea Number of facilities testing this Relative importance Rating Criteria Simplicity (not difficult or complex) Scalable Total score Average overall score 1. Identifying a focal person to update ART register Introduced a storage section specific for files of ART patients who miss their clinic appointments Introduced a 2-month refill for stable patients Health education to patients on the need for adherence to scheduled appointments 5. Having clinic phone numbers on display so that patients can communicate if they will miss their scheduled appointments 6. Clients form and others enroll in peer support groups, that reduce stigma Formation of teams to support client follow-up Holding special clinic days for targeted client groups like adolescents and FSWs 9. Expert clients in communities who inform facilities of deaths among fellow clients 10. Designated counsellors on medical wards who inform ART staff of ART clients admitted or have died 11. Holding inter-facility meetings for facilities to share information on patient transfers 12. CME sessions covering counselling for ART retention and use of counselling visual aids 13. Harmonized/ synchronized child and parent appointment dates 14. Updating appointment dates to match bill balances for clients HIV Care and Treatment Change Package

11 Table 4: Rating of ideas implemented to improve the proportion of clients on ART receiving viral load tests SN Change idea Number of facilities testing this Relative importance Rating Criteria Simplicity (not difficult or complex) Scalable Total score Average overall score 1. CME sessions on VL monitoring Encouraging clients to demand for VL monitoring tests 3. Generating lists of clients due for VL testing, and have their files tracked/identified 4. Synchronized VL testing dates with ARV refill dates for eligible clients 5. Collection of VL samples throughout the day, as opposed to only mornings 6. Designating an individual to conduct phlebotomies on site 7. Prioritizing access for clients with clinical failure, and risk groups like pregnant mothers 8. Redistribution of viral load kits from lower facilities to high-volume facilities, to manage stock-outs Change package for improving HIV care and ART services at high-volume hospitals in Uganda Intended Use Hospital administrators, heads of ART clinics and front-line health workers taking care of pre-art and ART patients are the primary intended users of this package. Others like NGOs involved in improving access, quality and safety of ART services, district health officers supervising health facilities and Ministry of Health officials working on strategies to achieve the goal will find the evidencebased high impact s described in the following pages useful. It should be noted that hospital-based improvement teams should not necessarily copy these ideas, rather, they should adapt them to suit their circumstances and context challenges. The next section of this package provides a detailed description of what s led to improvement, and how such improvement was derived. It is structured into three sub-sections, corresponding with the three improvement aims that the SUSTAIN project set out to achieve in relation to HIV care and ART services. Each sub-section outlines the QI concept applied, the problem being addressed, the ideas tested, steps followed in introducing each idea and the evidence that it led to improvement. HIV Care and Treatment Change Package 5

12 Improvement Aim 1: To improve the proportion of clients in HIV care who are enrolled on ART to 95% by September 2016 at 11 Regional Referral Hospitals and 1 General Hospital in Uganda. Between 2013 and 2016, as illustrated in Figure 2, there were significant improvements in the proportion of eligible HIV+ patients successfully enrolled on treatment at SUSTAIN supported hospitals. An improvement of 20%, within three years, can be attributed to the s introduced through SUSTAIN s assistance. Figure 2: Proportion of HIV+ patients eligible for ART who were immediately started on ART Percent Table 5: Specific s introduced to improve ART initiation among HIV patients in care Change concept Specific problem being addressed Change ideas tested Steps in introducing the ideas Evidence that the s led to improvement Scale of implementation Easing the process of service delivery based on feedback from clients Rigid and stringent expectations, that required eligible patients to come along with treatment supporters before ART initiation Assessing readiness for ART initiation even in the absence of treatment supporters Emphasis was put on pre-art counselling, to adequately prepare patients for ART Even in the absence of treatment supporters, counsellors assessed for understanding and comprehension of the different messages they were passing on to patients Counsellors also reviewed key messages from previous counselling sessions Only after counsellors were convinced that a patient is ready to start treatment, they were initiated on ART with or without a treatment supporter. Within a year of implementing this idea, Mubende RRH moved from initiating 10% to initiating 90% of eligible patients on ART. Lira RRH moved from 68% to 89% within 20 months. 12 hospitals tried out this Perform preparatory steps early Delays in identifying and communicating which clients are eligible for ART initiation Generating weekly lists of eligible clients The ART clinical team worked with the data team to identify, list and share those patients with low CD4 levels on a weekly basis, that constituted a list of patients eligible for starting ART Once identified, ART-initiation and ARTadherence counsellors would embark on preparing those specific patients for the ART journey Fort Portal RRH and its ART initiation improved from 20% to 89% within 8 months. 10 hospitals continued 6 HIV Care and Treatment Change Package

13 Table 5: Specific s introduced to improve ART initiation among HIV patients in care, continued Change concept Specific problem being addressed Change ideas tested Steps in introducing the ideas Evidence that the s led to improvement Scale of implementation Standardize timelines for performing specific tasks After CD4 tests had been conducted and results released, they would not be immediately entered into OpenMRS, an electronic medical records system, and this would delay identification of eligible patients. Registering CD4 results in OpenMRS at the end of each week Once CD4 results were released by the lab team, the data team would work on having them entered into OpenMRS within the shortest time possible CME sessions were held with the data team on how CD4 results can be efficiently, accurately and consistently captured into OpenMRS One week was set as an internal target and deadline for updating patient records once their CD4 came from the lab Lira RRH improved their ART initiation from 78% in October 2014 to 93% by January hospitals Customize services to specific population groups Parents complained about the need to return to the clinic on separate dates and have their children initiated on ART Creation of specific child clinic days and have them synchronized with their parents ART initiation appointment days This idea was generated during a QI meeting reviewing performance of pediatric HIV care It was decided that ART appointment dates be synchronized for both parents and their children, to minimize costs associated with multiple clinic visits During the pre-art preparation process, parents were required to attend the necessary sessions with their children and to perform the required tasks with them. Adherence to scheduled appointments improved for both adults and children in Jinja and Arua RRHs, and this contributed to improvements in ART initiation 10 hospitals Utilize alliances and cooperative relationships Inconsistently documenting CD4 results in patients ART clinic charts, making it difficult to identify those eligible for ART initiation Engaging volunteers to assist in ART documentation, especially ART register and patient ART charts Volunteers were trained by the clinic heads and the data team on how to identify CD4 figures from the lab results, and how to enter results of specific patients into OpenMRS Even after training, they were supervised by various clinic team members as they executed their tasks In addition to CD4 documentation, these volunteers also assisted the clinic team to update other fields in the pre-art and ART registers and ease the documentation burden on the clinic staff Documentation of CD4 results in patient charts greatly improved across facilities that 13 hospitals This required volunteers to work with clinic heads, the data team and the community linkage coordinators continued HIV Care and Treatment Change Package 7

14 Table 5: Specific s introduced to improve ART initiation among HIV patients in care, continued Change concept Specific problem being addressed Change ideas tested Steps in introducing the ideas Evidence that the s led to improvement Scale of implementation Change the order of process steps Inconsistently documenting CD4 results in patients ART clinic charts, making it difficult to identify those eligible for ART initiation Identifying patients in pre-art who are eligible to start ART monthly Data team was tasked with generating a list of pre-art patients eligible for ART initiation for the subsequent month The list was shared with the HIV clinic heads, ART counsellors, and community linkages coordinators On month end, this list would be reconciled with that of patients who have initiated ART during the month, and those who missed-out singled out List of patients who missed ART initiation would be shared with the community linkages teams for follow-up Among facilities that, the number of eligible patients waiting for ART initiation gradually reduced. 11 hospitals Devote time to finding and removing bottlenecks Holding weekly audit meetings to identify and address documentation challenges that delay ART initiation During monthly HIV clinic improvement meetings, participants suggested the reliance on data reviews to identify documentation challenges related to delays in ART initiation Instead of relying on monthly reviews, the team decided to conduct weekly audit meetings to review ART-related documentation and identify any gaps The data team, clinic staff and volunteers worked together to ensure patients records are accurate and consistent from the HIV care card, to the ART register and to the OpenMRS information system Arua RRH tested this and updating of CD4 results in patient files improved from 32% to 90% by August hospitals Provide training Staff movements resulted in uneven knowledge levels among HIV clinic staff CME sessions, case conferences and mentorship sessions on ART to improve staff knowledge Clinic heads scheduled CME sessions to be held on a weekly basis, during HIV clinic meetings Subject matter experts were identified and tasked with preparing for these talks Topics (and identified experts) included criteria for ART initiation, CD4 testing, adherence counselling, symptoms and treatment for opportunistic infections and TB/HIV care Knowledge of ART care became widespread and evenly distributed across all staff in the HIV clinic 11 hospitals Use substitution Frequent absences of medical officers often stalled the continuous monitoring of ART patients Task shifting introduced nurse refills and nurse-requested CD4 tests HIV clinic teams empowered nurses to prescribe ART re-fills and authorize the request for CD4 tests, a deviation of the norm of leaving such tasks to doctors alone Nurses had been trained on the different ART regimes, their side-effects and efficacy levels. They had also been trained in CD4 monitoring and the interpretation of s in patients CD4 counts; since most health facilities have high numbers of nurses, and not of doctors, nurses availability ensured these functions were often conducted without significant delays The process of assigning some tasks to nurses also freed-up doctors time so they could focus on the more complicated cases in ART care Patients experiences during ART clinic days improved, as stable patients did not have to wait to see medical officers 12 hospitals continued 8 HIV Care and Treatment Change Package

15 Table 5: Specific s introduced to improve ART initiation among HIV patients in care, continued Change concept Specific problem being addressed Change ideas tested Steps in introducing the ideas Evidence that the s led to improvement Scale of implementation Use reminders Failure for patients to report to the health facilities on scheduled clinic days, sometimes due to forgetfulness Phone calls made to remind ART eligible clients to come for ART counselling on the specified appointment dates Patients eligible for ART could not be initiated on treatment until after they had undergone the necessary ART counselling sessions Patients who would fail to turn up for the scheduled counselling sessions would be followed up by phone calls reminding them of their missed appointments In many other cases, patients with scheduled counselling sessions would be called prior to the due dates and be reminded of the need to adhere to their appointments Turn up for adherence counselling sessions greatly improved among the facilities that, and timely ART initiation subsequently improved 13 hospitals Utilize alliances with existing beneficiaries Patients expressed disbelief and dissatisfaction with ART messages from health workers Engaging expert clients to counsel ART eligible clients before they are initiated on ART The clinic team identified ART patients who had been in care for a long time, were stable and had registered good clinical outcomes The clinic team was trained in adherence counselling, and guided on how they could use their experiences to encourage and support others During clinic days, they provided ART counseling to newly eligible patients and emphasized adherence both to treatment and to scheduled clinic appointments Patients identified better with expert clients and were more willing to initiate ART after counselling sessions with the expert clients 12 hospitals Move services and clients closer to each other Patients were reluctant to initiate ART from a facility that they felt was not conducive for long term HIV care and treatment Transfer-out of eligible ART patients to nearest health facilities so that ART initiation is done from there During ART adherence counseling, patients were asked whether it was easy and affordable (costwise) to access ARVs from that health facility Those patients who disagreed proceeded to being initiated on ART, and those who agreed were presented with options of initiating from elsewhere Health facilities that observed reductions in loss-to-follow-up of ART patients soon after they are started on treatment Nine hospitals Patients who desired getting their ARVs from facilities nearer to their homes were encouraged to do that, and issued with transfer out forms and contacts of staff in the new facility HIV Care and Treatment Change Package 9

16 Improvement Aim 2: Improve the proportion of HIV clients on ART that are alive and well 12 months after initiating treatment Figure 3: Percentage of HIV clients alive and on treatment 12 months after initiating ART Figure 3 demonstrates the overall stagnation in 12-month retention of patients on ART. In 2016, retention on ART was at 85% amongst hospitals supported by SUSTAIN. Percent Table 6: Specific s introduced to improve retention of ART clients in care Change concept Specific problem being addressed Change ideas tested Steps in introducing the ideas Evidence that the s led to improvement Scale of implementation Use a Coordinator Facilities had challenges tracking which patients were in care at any given time Identifying a focal person to update ART register During monthly QI meeting, the HIV clinic teams agreed on the importance of using the ART register and keeping it updated as it helps facilities capture the number and status of patients in care A focal person was identified from among the clinic team, and tasked with coordinating and supervising update of the ART register Specific fields in the ART register that require special focus were the patients telephone contact and their recent CD4 results, as these are areas that had been chronically problematic The identified focal person worked closely with volunteers and the data team, to ensure specific tasks were completed. Fort portal RRH and improved ART retention from 40% in December 2012 to 93% in September Other facilities that could easily and accurately determine the number of patients who were alive and on treatment at any given time. 10 hospitals Re-align processes so that activities that follow each other are close together Facilities were not able to identify and trace ART files of patients who had missed clinic appointments Introduced a storage section specific for files of ART patients who miss their clinic appointments ART files for patients expected on a clinic day were retrieved a day before and availed to the clinic team At the end of the clinic day, files of patients who missed appointments were collected and kept in a specifically designated storage area When these patients eventually came to the clinic, it was easy to identify and retrieve their files to receive care Documentation in the ART files of patients who had missed appointments was possible, and easier, confirming their retention in care Six hospitals continued 10 HIV Care and Treatment Change Package

17 Table 6: Specific s introduced to improve retention of ART clients in care, continued Change concept Specific problem being addressed Change ideas tested Steps in introducing the ideas Evidence that the s led to improvement Scale of implementation Listen to clients and be receptive to their requests Patients were uncomfortable with the costs associated with monthly clinic visits to pick medicines, and some missed clinic visits because of costs Introduced a 2-month refill for stable patients The clinical team worked with the data team and adherence counsellors to identify stable patients who had been in care for over 12 months If patients had demonstrated good ART adherence during that period, it was decided that they are offered two-months worth of ARVs They were still required to report to the health facilities for re-fills and clinical assessments, but did not have to make the monthly trips Lira RRH improved its adult ART retention from 55% to 74% by June hospitals Provide clients with information ART patients were consistently missing their scheduled appointments, affecting their retention in care Health education to patients on the need for adherence to scheduled appointments HIV clinic head tasked adherence counsellors to give sessions on sticking to scheduled appointments for the ART clinic On each clinic day, group counselling sessions were conducted that emphasized the benefits of not only ART adherence but also appointment adherence Adherence to scheduled appointments improved among facilities that tested this 11 hospitals Hindrances to appointment keeping were identified, discussed and addressed during the group counselling sessions Patients often missed their appointment dates, and fail to alert the clinic staff Having clinic phone numbers on display so that patients can communicate if they will miss their scheduled appointments Health workers decided which phone numbers to share with patients, and had them written in clearly visible digits on manila papers, and posted them around the triage area During health education sessions, patients were encouraged to contact clinic staff using the same numbers and alert them whenever they were to miss their appointments Patients could call the same numbers to inform clinic staff of any s in their condition, even without coming into the health facilities Adherence to treatment in Arua RRH improved from 62-82%. In some health facilities, patients started calling health workers inquiring if they could report for refills earlier than had been scheduled Nine hospitals Support clients to develop alliances and cooperative relationships Stigma forced some patients to stop coming to health facilities for care Clients formed peer support groups to address stigma Patients formed peer groups to provide support and share knowledge amongst themselves They encouraged each other to stay strong even in the face of stigma, and to always adhere to their clinic appointments They also shared tips on how to disclose their HIV status to close family members, and how to encourage more people to test Patients developed stronger bonds amongst themselves, and even supported themselves in starting up income generating activities. In Jinja RRH, retention improved from 62% to 98%. 10 hospitals continued HIV Care and Treatment Change Package 11

18 Table 6: Specific s introduced to improve retention of ART clients in care, continued Change concept Specific problem being addressed Change ideas tested Steps in introducing the ideas Evidence that the s led to improvement Scale of implementation Use coordinating teams Even though hospitals would effectively identify clients who were no longer in care, only occasionally would they follow them up Formation of teams to support client follow-up Hospitals formed teams specifically for following up clients who re missing scheduled appointments On a weekly basis, the data and clinical teams identified these clients, and handed over their names and addresses to the follow-up team Hospitals received funding from SUSTAIN and other IPs to facilitate patient follow-up Loss to follow-up greatly reduced in hospitals that tested this, as more clients were encouraged to get back into care Nine hospitals Various follow-up approaches were used: phone calls and/or home visits Customize services to specific population groups Partly due to stigma, certain population groups easily dropped out of care even after they were enrolled Holding special clinic days for targeted client groups like adolescents and commercial sex workers QI teams advised HIV clinic teams to treat adolescents, commercial sex workers and men-who-have-sex-with-men (MSMs) as special population groups Clinic teams then set up separate clinic days for each of these groups, and passed on the information during health education talks Retention on ART of key populations greatly improved 11 hospitals Since these clients are relatively fewer in number, only 1-2 health workers were tasked with seeing the key-population clients on these special clinic days Develop alliances and cooperative relationships with expert clients If clients died, HIV clinic teams would often consider them as lost-to-follow-up Utilize expert clients in communities to inform facilities of deaths among fellow clients Expert clients were identified from each village in the catchment area, from among patients in care. Since expert clients are already trusted by their clients, the clinic teams furnished them with names and addresses of their colleagues in their communities Over-time, HIV clinic teams developed more reliable data of patients in care, and could accurately weed out the dead Six hospitals These expert clients were asked to act as community informers, checking on their colleagues receiving care from the same facility, and feeding back that information to the clinic team In the unfortunate event of death of one of their peers, the expert clients would quickly inform the HIV clinic team, so that the pre-art/art registers could be updated and the HIV care card withdrawn Such community informers would also provide information on migratory clients, who might have emigrated from their communities continued 12 HIV Care and Treatment Change Package

19 Table 6: Specific s introduced to improve retention of ART clients in care, continued Change concept Specific problem being addressed Change ideas tested Steps in introducing the ideas Evidence that the s led to improvement Scale of implementation Establish sources of key information and link it to stakeholders For clients who died while admitted in the medical wards, HIV clinic teams would not be informed and still consider them as lost-to-follow-up Designated counsellors on medical wards who inform ART staff of ART clients that have been admitted or have died QI teams within the HIV clinic liaised with QI teams at the medical wards of the same hospitals to alert them if any of their clients were admitted in their wards, and had died To facilitate the identification of clients and coordination of information between the HIV teams and the wards, the HIV clinic team designated counsellors to be stationed at the medical wards to perform this function QI teams used an admissions book stationed in the HIV clinic, in which ART clients found in the medical wards would be documented HIV clients who died while admitted were easily identified and information was conveyed to the HIV clinic data and clinical teams Nine hospitals Sharing of information between facilities For patients who transfer-out, their health care information wouldn t be transferred to the recipient facility Holding inter-facility meetings for facilities to share information on patient transfers Once the HIV clinic team ascertains which facility a client has transferred to, they would contact their clinic team to have their file (HIV care card) availed to them Periodically, HIV clinic teams from different facilities (in the same district) would get together to share information on patient transfers These inter-facility transfers were coordinated by the HIV Care Coordinator in the District Health Office During health education sessions, clients were always told to request for formal transfer-out whenever they decided to seek care from another facility Sharing of client s records improved among facilities, and un-aided self-transfers were greatly reduced. 11 hospitals Provide training Patients would get tired of taking ARVs, and wouldn t come back for refills CME sessions covering counselling for ART retention and use of counselling visual aids Adherence counselling was designed to address both ARV adherence and appointment adherence Adherence counsellors were trained and encouraged to emphasize retention in care as the best indicator for client s adherence Counsellors used visual job aids to tell clients the consequences of non-adherence to scheduled appointments: effects included emergence of opportunistic infections and death Adherence to ARVs increased in facilities that tested this 11 hospitals Customize services to specific population groups Parents often failed to honor their children s clinic appointments, even when they could honor theirs Synchronized child and parent appointment dates QI teams identified the costs associated with multiple clinic visits as one of the reasons some patients were not coming back for refills. Parent/ child pairs were some of the groups most affected. Facilities started synchronizing appointment dates for children and their parents, by giving them the same amounts of drugs On the scheduled appointment, the parent/child pair would make a single, monthly trip thereby saving them transport costs and time Retention of children in ART greatly improved. In Lira RRH, retention of children on ART increased from 57% to 82% after testing this. 11 hospitals continued HIV Care and Treatment Change Package 13

20 Table 6: Specific s introduced to improve retention of ART clients in care, continued Change concept Specific problem being addressed Change ideas tested Steps in introducing the ideas Evidence that the s led to improvement Scale of implementation Synchronize and minimize duplication Clients would accumulate pill balances carried forward from previous refills, and had no idea what to do with them Updating appointment dates to match pill balances for clients During adherence assessment, clients were asked to mention their pill balances Before new pills (refills) were issued, the equivalent of the remaining pills was deducted from the new issuance Counting pill balances ensured clients were only getting refills that they needed for that period The amount of drugs that the clients had and carried forward greatly reduced 10 hospitals Improvement aim 3: To improve the proportion of clients on ART receiving viral load tests Figure 4: Proportion of clients due for viral load testing in a month that have accessed it 100 Because of SUSTAIN s support, the proportion of clients 80 due for viral load testing who received the service more than doubled between 2014 and 2016, as illustrated in Figure 4. Improvement is attributable to hospitals introducing several s to improve access to viral load testing. Details of these s are outlined in Table 7. Percent Table 7: Specific ideas to improve access to viral load testing Change concept Specific problem being addressed Change ideas tested Steps in introducing the ideas Evidence that the s led to improvement Scale of implementation Provide training There were significant knowledge gaps amongst staff on viral-load monitoring CME sessions on viral load monitoring Clinicians, nurses, lab staff and data staff were trained in the need and process of viral load testing and monitoring Supported by SUSTAIN, trainings covered the frequency of viral load testing, the forms used in requesting a test, sample collection procedures and interpretation of results. Soroti RRH had 76% of their ART clients receiving viral load tests by January hospitals Periodically, these capacity building sessions were repeated during CPD sessions continued 14 HIV Care and Treatment Change Package

21 Table 7: Specific ideas to improve access to viral load testing, continued Change concept Specific problem being addressed Change ideas tested Steps in introducing the ideas Evidence that the s led to improvement Scale of implementation Listen to customers Due to data gaps, hospitals had limited capability of identifying which clients were due for viral load testing Encouraging clients to demand for viral load monitoring tests During health education sessions, clients were asked to always remind health workers to check their eligibility for viral load testing Members of the triaging team were also tasked with checking clients files and identify those eligible for viral load testing in which those found eligible would be guided on the procedure for obtaining the tests In Fort Portal RRH, viral load testing improved from 58% to 71% by June hospitals Rearrange the order of steps in a process Generating lists of clients due for VL testing, and have their files tracked/ identified Based on clinic records in OpenMRS, clinic teams could determine which clients were due for viral load testing Prior to their subsequent appointment dates, their files would be retrieved and triage team alerted that those clients needed to have their viral load testing done On arrival for their scheduled appointment, such patients would be guided to the lab and have the blood samples taken Since files were retrieved in advance, clients would efficiently go through the normal refill visit without any delays, even when they were combined with viral load testing. Nine hospitals Synchronize and minimize duplication Client frustration due to un-harmonized appointment dates between viral load testing dates and ARV refill dates Synchronized viral load testing dates with ARV refill dates for eligible clients Using information provided by the data team, the clinic team could tell when a client s viral load testing is due. They then scheduled an ARV refill date to coincide with that date. In a single visit, clients could get both their viral load tests done and their ARV refills Viral load testing increased in facilities that tested this 11 hospitals Provide services whenever clients need them Clients would miss out on viral load testing if they reported past the allocated time Collection of viral load samples throughout the day, as opposed to only mornings HIV clinic teams identified focal persons responsible for performing viral load tests for clients due for a test, who would be available throughout the day, and was allocated secure space to use as the bleeding room Whenever clients eligible for viral load testing were identified, at whichever time of day, they were directed to the bleeding room from where the VL focal person would be waiting In Lira RRH, where this was tested, VL testing improved from 18% to 77% by July hospitals Use a Coordinator Several clients had missed out on VL testing due to logistical challenges (stationary and test kits) and absence of competent staff Designating an individual to follow up clients and to conduct phlebotomies on site Hospitals identified focal persons (preferably phlebotomists) to identify and follow-up with clients who had missed their VL tests The focal person followed up clients through phone calls and scheduled appointments for when they could have their VL tests done The focal person also ensured the test kits and VL request forms are available, often by acquiring them from lower health facilities or through CPHL requisitions Kabale RRH had 852 eligible clients received VL tests between April and June 2016, and Hoima had 876 by June hospitals continued HIV Care and Treatment Change Package 15

22 Table 7: Specific ideas to improve access to viral load testing, continued Change concept Specific problem being addressed Change ideas tested Steps in introducing the ideas Evidence that the s led to improvement Scale of implementation Prioritize services to specific population groups Limitations in resources dictated that only a few clients could have their VL tested Prioritizing access VL testing for clients with clinical failure, and risk groups like pregnant mothers The lab staff worked with the data team to identify those clients with low CD4 counts, by going through their clinical files and tagging them with a VL test request that were then recommended to clinicians as the priority clients to receive VL tests, as resources were limited At their subsequent clinic visits, these identified clients would be informed that they were due for VL testing and guided on how to get the tests done Gulu RRH tried this to clear its backlog of clients, and by June 2016 had done 1,120 viral load tests Six hospitals Match the amount of supplies to the need Persistent stockouts of viral load kits hindered many facilities from conducting VL tests Redistribution of viral load kits from lower facilities to highvolume facilities, to manage stock-outs Whenever the HIV clinic teams were facing shortages of viral load kits, they would inform their district HIV focal person Based on understanding of the landscape of HIV care and treatment in the district, this focal person would have information on which facilities might have excess/under-utilized viral load kits Facilities teams then work with the district teams to redistribute kits from less-consuming facilities to large consuming facilities By redistributing viral load kits from where they are not used to where they are needed, eligible clients receive services in a timely manner. Three hospitals During subsequent requisition cycles, the district focal person works with all facilities to ascertain accuracy in forecasting demand for viral load kits 16 HIV Care and Treatment Change Package

23 Key Challenges As has been documented in various health system strengthening initiatives, improvement teams faced significant challenges while testing the different ideas aimed at improving HIV care and treatment at the supported health facilities. Key among them included: n Increased work-load: Health workers were required to hold more meetings, document more accurately and spend substantial amounts of time analyzing performance data. These additional tasks were viewed as increased work load, as nurses, clinicians and other staff were required to dedicate additional time to the HIV/ART clinic to perform these roles. Many health workers felt that these additional tasks should come with additional pay, to compensate the amount of time dedicated. n Patient complaints: Some of the tested s were associated with unpleasant experiences for patients, who in-turn viewed the quality of care as unfavorable. Examples of these s included longer waiting times for patients, as health workers increased the time allocated to counselling new patients prior to ART initiation. The new patients benefitted from better preparation before initiating ART, but other patients complained that they had to wait longer for their review and refills. Other complaints came from patients who had to return to health facilities within a week to receive their CD4 results, and potentially initiate ART. Although the QI team wanted the ART eligible patients to be able to initiate treatment as soon as their results were released, the patients complained that returning to a health facility within a week of one visit resulted in a significant financial burden. n To shortages in human resources, health workers often introduced volunteers, interns and support staff to assist (or take lead) in the implementation of various ideas. In some cases, unfortunately, these volunteers failed to respect set boundaries and would assume the roles of health workers. This challenge mainly manifested during triaging of patients, ART counselling and allocation of clinic-return dates. It created a challenge of quality control and ownership of responsibilities during the execution of the clinical roles. HIV Care and Treatment Change Package 17

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