Adherence & Retention

Much of the work in sub-Saharan Africa has focused on patients enrolled in antiretroviral therapy programs, which described poor rates of retention in care, with nearly 40% of patients lost to follow-up after ART initiation. In recent years, there has been an increased awareness that many people never even make it into care after a new HIV diagnosis, and are therefore not considered in ART program outcomes. Where I work in Durban, South Africa, we have documented high rates of attrition along all of the pre-ART steps in the care pathway following diagnosis from obtaining a CD4 count to psychosocial assessment to ART literacy training. In Durban, we saw that only 40% of ART-eligible patients were in care and on treatment one year later; 20% of them had died. Care in the pre-ART period has been characterized as the “broken link” between the successful scale-up of HIV testing and ART initiation efforts.

Barriers to engaging in pre-ART care mirror many of those that impede ART adherence: stigma, transport and treatment costs, competing basic needs, gender, education, lack of perceived need, and lack of self-efficacy and social support. A unique feature of pre-ART care is that often the location of the ...

Much of the work in sub-Saharan Africa has focused on patients enrolled in antiretroviral therapy programs, which described poor rates of retention in care, with nearly 40% of patients lost to follow-up after ART initiation. In recent years, there has been an increased awareness that many people never even make it into care after a new HIV diagnosis, and are therefore not considered in ART program outcomes. Where I work in Durban, South Africa, we have documented high rates of attrition along all of the pre-ART steps in the care pathway following diagnosis from obtaining a CD4 count to psychosocial assessment to ART literacy training. In Durban, we saw that only 40% of ART-eligible patients were in care and on treatment one year later; 20% of them had died. Care in the pre-ART period has been characterized as the “broken link” between the successful scale-up of HIV testing and ART initiation efforts.

Barriers to engaging in pre-ART care mirror many of those that impede ART adherence: stigma, transport and treatment costs, competing basic needs, gender, education, lack of perceived need, and lack of self-efficacy and social support. A unique feature of pre-ART care is that often the location of the HIV test and the ART clinic are geographically separated, which creates an additional logistical barrier. I think a particularly difficult group to engage in care is those patients newly-diagnosed with HIV who are not yet eligible for ART. Only 30-40% of ART-ineligible people return for subsequent CD4 counts to establish ART-eligibility in South Africa, and are therefore not benefiting from timely ART initiation. There are few dedicated pre-ART program models or quality measures, which has made the pre-ART period a difficult one to study. As HIV testing efforts expand outside of health care facilities, such as to mobile or home-based testing, new challenges will emerge for ensuring linkage to care for ambulatory people who may be feeling well.

Practical strategies for how to improve linkage to HIV care in resource-limited settings are emerging. Employing a point of care CD4 count machine has been effective for removing a step from the care pathway and allowing a newly-diagnosed individual to benefit from understanding whether or not they are ART eligible. Several trials are under way, including one that we are working on in Durban, to evaluate the efficacy of a health system navigator who provides support through in person, phone and text message contacts. We await rigorous evaluation of other options, such as transport vouchers, conditional cash or other incentives, and deployment of community health workers. In addition, we are beginning to see structured pre-ART programs for ART-ineligible people, to ensure that they have primary HIV care and that they start ART as soon as they are eligible. I think many of these strategies will work, and that for programs waiting for the answers from rigorous clinical trials, choosing what you seems appropriate to you context and implementing a systematic process for identifying and contacting people who have failed to link is a good start.

Thank you for prioritizing this important topic. I am a nurse that implements a mobile HIV education, prevention and screening clinic across the state of Massachusetts in the United States. Although this program was not designed to re-engage out of care HIV positive individuals, we are doing this work out of necessity, as these individuals are presenting for assistance or peers are escorting them to our van for help. Populations cared for through our mobile health program (Project Health MOVES) include active IDU's, MSM, MTF transgender and ethnic minorities.
HIV patients who are lost to follow up and requesting assistance from our program tend to be older than 40, substance abusers, ethnic minorities and homeless. The majority of the individuals we have assisted have also had advanced AIDS.
I look forward to the discussion from the expert panel.


Catherine A. O'Connor, MSN, ACRN
Northeastern University
School of Nursing
207 D Robinson Hall

Mobile: 781-964-3856
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Clinical Director Health Innovations
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Thank you for organizing and starting this discussion, Rivet. Rivet first asked me to provide a brief bio. I am Associate Professor of Medicine in Infectious Diseases and Health Services Research at Baylor College of Medicine in Houston, Texas. I am also a researcher at the Michael E. DeBakey VA Medical Center’s Health Services Research Center of Excellence and Medical Director of the Thomas Street Health Center, one of the largest HIV clinics in the United States. My primary research focus is linkage to and retention in care for adults with HIV infection in the US, especially patients from minority and socioeconomically disadvantaged backgrounds. My research interventions include navigator and mentor-based interventions, focused on both hospitalized patients and outpatients. My research group has conducted prospective and retrospective analyses of the clinical significance of timely linkage to and retention in HIV care, as well as predictors of linkage and retention.


Now to the issue at hand. Linkage and retention are critical to the HIV infected population, and I would say they are the foundation upon which all other good health outcomes are built. Poor linkage and retention are problems across the world, and affect all socioeconomic strata. I lump the ...

Thank you for organizing and starting this discussion, Rivet. Rivet first asked me to provide a brief bio. I am Associate Professor of Medicine in Infectious Diseases and Health Services Research at Baylor College of Medicine in Houston, Texas. I am also a researcher at the Michael E. DeBakey VA Medical Center’s Health Services Research Center of Excellence and Medical Director of the Thomas Street Health Center, one of the largest HIV clinics in the United States. My primary research focus is linkage to and retention in care for adults with HIV infection in the US, especially patients from minority and socioeconomically disadvantaged backgrounds. My research interventions include navigator and mentor-based interventions, focused on both hospitalized patients and outpatients. My research group has conducted prospective and retrospective analyses of the clinical significance of timely linkage to and retention in HIV care, as well as predictors of linkage and retention.


Now to the issue at hand. Linkage and retention are critical to the HIV infected population, and I would say they are the foundation upon which all other good health outcomes are built. Poor linkage and retention are problems across the world, and affect all socioeconomic strata. I lump the major predictors of poor linkage and retention into 4 categories: socioeconomics (insurance, transportation, time away from work or home, competing needs for food and shelter), psychiatric (mental health issues that affect judgment and decision making, like depression), substance use (which can affect judgment, resources, and social support), and stigma—both external and internalized (which can impact ability to mobilize resources and can affect judgment). These things are compounded in the US by incarceration and homelessness, both often related to these four key factors, and by a fragmented health care system, where services are scattered, records are not easily shared, and resources and benefits are not evenly distributed.

In general, I like to think of health services research as trying to improve the way people and the health care system interact. So an intervention could target either the HIV-infected person, the health care system (including its structure, processes, and/or its people), or both. In the research context, it is a lot easier to study interventions directed at the HIV-infected person, because it is easier to get an adequate sample size and do statistical analyses. But in practice, interventions should target both the people and the system. The most promising interventions are flexible and can be tailored, because each person will have their own barriers. That is one of the reasons I like mentoring and navigating interventions: the mentor or navigator can respond to the needs of the patient. Case management and social services provision also fit nicely into that model, though they are more expensive. Social marketing and information technology approaches also have great promise, but they come with a different set of challenges: resource availability, sustainability, and dissemination. At the most practical level, i.e., what can I do tomorrow to improve linkage and retention, I think I’d start with examining the process of getting care from the patient’s perspective. You’ll probably quickly find some processes you can improve. Things like collocation of services, simplifying patient flow, improving customer service, etc., all might have important impact.

Based on the responses already, looks like this will be a lively discussion, and I am looking forward to it.

Tom

Thank you so much Rivet for beginning this discussion. My research focuses on why HIV-infected individuals who live in South Africa are not initiating care. Sparse data exist on the pre-ART period. A systematic literature review conducted in 2011 identified only 24 quantitative studies focusing on the time prior to ART-initiation (Rosen S. 18th CROI, 2011), most of which focuses on loss to follow-up (LTFU) (Bassett IV et al 2009, McGrath N et al 2010). It is clear that mortality amongst HIV-infected individuals prior to starting ART is high. In a South African cohort of HIV-infected individuals waiting to start ART, 20% with CD4 counts of 101–200 cells/mm3 died before initiating treatment (Ingle SM et al 2010). To date, there is little known about why HIV-infected men and women are not initiating ART, since those awaiting treatment have not been monitored by programs sponsored by the President’s Emergency Plan for AIDS Relief (PEPFAR) or The Global Fund.

While many strategies are used to increase the number of people receiving ART in resource-limited settings, few focus on patient perception and reasons to refuse ART initiation. Our research (Katz IT et al 2011), focusing on treatment-refusal among newly-diagnosed HIV-infected ...

Thank you so much Rivet for beginning this discussion. My research focuses on why HIV-infected individuals who live in South Africa are not initiating care. Sparse data exist on the pre-ART period. A systematic literature review conducted in 2011 identified only 24 quantitative studies focusing on the time prior to ART-initiation (Rosen S. 18th CROI, 2011), most of which focuses on loss to follow-up (LTFU) (Bassett IV et al 2009, McGrath N et al 2010). It is clear that mortality amongst HIV-infected individuals prior to starting ART is high. In a South African cohort of HIV-infected individuals waiting to start ART, 20% with CD4 counts of 101–200 cells/mm3 died before initiating treatment (Ingle SM et al 2010). To date, there is little known about why HIV-infected men and women are not initiating ART, since those awaiting treatment have not been monitored by programs sponsored by the President’s Emergency Plan for AIDS Relief (PEPFAR) or The Global Fund.

While many strategies are used to increase the number of people receiving ART in resource-limited settings, few focus on patient perception and reasons to refuse ART initiation. Our research (Katz IT et al 2011), focusing on treatment-refusal among newly-diagnosed HIV-infected individuals, adds to the growing literature on understanding why HIV-infected individuals fail to initiate treatment after diagnosis in South Africa (Larson BA et al 2010, April MD et al 2009). Optimizing engagement and long-term retention of HIV infected individuals in care will require understanding their motivation for refusal (Harries AD et al 2010, Fox MP et al 2011, Nglazi MD et al 2011). Efforts are needed, beyond expanding counseling and testing, to reach the estimated 2 million HIV-infected people currently in need of treatment in South Africa. This will require “marketing” the concept of ART as a life-saving intervention. By understanding the factors driving treatment-refusal, we can help identify at-risk individuals and design more effective targeted interventions to prevent early mortality (Brinkhof MW, 2010).

At this point, HIV Treatment Refusal is a relatively novel concept, and there has been little done in terms of intervention work that has been published to date. That said, there is a lot of work being done on lost to follow up. Ingrid Bassett, another panelist, has established a clinical cohort in South Africa enrolled prior to HIV testing to evaluate linkage to HIV care, and currently has an R01 to perform a randomized trial to evaluate the efficacy of a health system navigator in improving linkage to HIV care and TB treatment completion at 3 clinical sites in Durban.

It is going to take multiple levels of coordinated effort to really begin to address why people are refusing ART. We intend to study what factors are driving this, so that we can design targeted effective interventions. It is likely going to involve both structural as well as sociocultural components. As providers, we need to aim to better understand WHY people are refusing care (very few VCT sites even collect data on ART refusal) and then we can better help people engage in care.

I’m an Infectious Diseases trained physician who works in three roles, 1) primary clinical care for HIV-infected individuals, 2) researcher in the areas of adherence to antiretroviral therapy and engagement in HIV care, and 3) public health physician involved in public health evaluation and planning for Denver, Colorado. Many HIV-infected individuals achieve long-term health benefits form currently available antiretroviral medications, some do not. In clinical practice the individuals with the worst outcomes are those who are not adequately engaged in care. In my practice this is particularly true for individuals requiring hospitalization, developing opportunistic illnesses, and those who die prematurely. Adherence to antiretroviral therapy is critically important for the successful management of HIV infection. When adherence is zero, as is typical for individuals poorly engaged in care, the outcomes are the worst. Another particular area of interest for me is in the care of incarcerated individuals with HIV. In some settings, more commonly in jails than prisons, incarceration itself leads to gaps in HIV care and antiretroviral therapy. However, a major barrier to engagement in HIV care in this population is poor transitioning of HIV-infected inmates back into community HIV care at the time of release.

There are many ...

I’m an Infectious Diseases trained physician who works in three roles, 1) primary clinical care for HIV-infected individuals, 2) researcher in the areas of adherence to antiretroviral therapy and engagement in HIV care, and 3) public health physician involved in public health evaluation and planning for Denver, Colorado. Many HIV-infected individuals achieve long-term health benefits form currently available antiretroviral medications, some do not. In clinical practice the individuals with the worst outcomes are those who are not adequately engaged in care. In my practice this is particularly true for individuals requiring hospitalization, developing opportunistic illnesses, and those who die prematurely. Adherence to antiretroviral therapy is critically important for the successful management of HIV infection. When adherence is zero, as is typical for individuals poorly engaged in care, the outcomes are the worst. Another particular area of interest for me is in the care of incarcerated individuals with HIV. In some settings, more commonly in jails than prisons, incarceration itself leads to gaps in HIV care and antiretroviral therapy. However, a major barrier to engagement in HIV care in this population is poor transitioning of HIV-infected inmates back into community HIV care at the time of release.

There are many factors that have been shown to be (or are suspected to be) associated with poor engagement in HIV care. Individual or personal barriers to engagement in care are critically important and common; these include substance abuse, actual and perceived stigma, homelessness, mental illness, feeling healthy, and others. In my clinical practice and research I have been particularly interested in system-level barriers to HIV care. These include lack of health insurance/coverage, inability to navigate complex health systems, transportation barriers, lack of money for copays, lack of daycare, food insecurity, and others. For incarcerated individuals returning to the community, competing priorities are a huge challenge to continuous HIV care. In addition to many of the above barriers there are difficulties due to unemployment, housing instability, and the fact that Medicaid, Medicare, and other health coverage sources expire while incarcerated. As I write this it is clear that personal and system barriers commonly overlap and together pose formidable barriers to initial linkage to HIV care and long-term retention in care.

The barriers to engagement in HIV care are multifactorial, thus the solutions will need to be multifactorial as well. Substance abuse counseling and treatment as well as mental health services have the potential to help many individuals overcome barriers to care. But it may not be enough to just provide these services. Individuals who may benefit from these services need to be proactively identified, and adequate engagement in these services is as critical as engagement in HIV care itself. I am involved in several projects that facilitate identification of individuals at risk for poor engagement in care or who are not engaged in care. Once identified these individuals need to be assisted to stay in care or re-engage in care and we utilize patient navigators, community health workers, or outreach workers. Solutions can be high-tech or low-tech. For example we use an algorithm based on the most recent CD4 count and viral load to identify individuals who have not been seen in our clinic over defined periods of time. We also electronically identify individuals who are late refilling antiretroviral medication prescriptions. Other informatics solutions are also used to define our target population and then to facilitate linking them with patient navigation in order to minimize as many barriers to care as possible. We have a similar program that works with individuals while incarcerated in our county jail as well as with individuals being released from state prison returning to our metropolitan area. Finally, we are beginning to utilize state health department databases to identify individuals with a lapse in care defined by the absence of routine HIV specific labs. These are just some of the ways we are using technology combined with patient navigation to improve engagement in HIV care.

Although we are working with high-tech solutions to identify our target populations, there are critically important low-tech aspects of health care systems that, with improvement, can help promote engagement in care. I believe case management can be valuable in both linking newly-diagnosed HIV-infected individuals and re-engaging out of care individuals. We identify many out of care individuals at HIV-testing sites and utilize our linkage to care workers to re-engage these individuals. Facilitating financial screening is important. Our financial screeners verify income and local address and then help individuals apply for available health coverage such as our state indigent care program and AIDS Drug Assistance Program, Medicaid, Medicare, etc. Promoting an open and private environment where health care is delivered may help some individual engage in care. Sometimes not being the “AIDS Clinic” is a good thing. Being located around other non-HIV services can be critical because individuals may not want to enter a building where ‘everybody knows they are going to the AIDS clinic’. Simple things such as reminders for appointments may improve engagement for some individuals. Promoting excellent provider-patient relationships is also critically important. Finally, streamlining the process of care is likely advantageous and the ‘medical home’ model is an excellent reference point. This model promotes co-location and unified provision of many services an individual with HIV may need (medical care, pharmacy, mental health, substance abuse services, dental services, social work, financial screening, etc).

Ed

Looking forward to further discussion.

Thanks, everyone for your posts. I'm curious if anyone has any data or experiences that they can share that made a difference in linkage or retention in their clinic or community. It need not be published or even publishable data. Perhaps you have some results from a quality improvement project you can share? In our own clinic, we've been asking persons who hadn't been seen for at least 9 months why they haven't been in to the clinic. The most common reasons persons were out of care are incarceration, substance use, "too busy" with other priorities, and not feeling sick. We haven't assembled all the data yet, but this gives us something to target at least. One of the things we've done in response is get a case manager into the local jail to do discharge planning specificly focused on linking the releasee back to our clinic. We don't know if this has made a difference yet. Anyone have any comments, or experience they can share?

Tom

Good morning. My name is Michael Mugavero and I’m an Associate Professor of Medicine at the University of Alabama at Birmingham (UAB). My research focuses on engagement in HIV medical care and I’m an Infectious Diseases trained physician who provides medical care at the UAB 1917 HIV/AIDS Clinic, a Ryan White Part C clinic with a large catchment area.
Others have nicely outlined key barriers and facilitators to linking and retaining persons in HIV medical care in earlier posts. I’d like to follow-up on Tom’s most recent post and see if we can engage in a dialogue on programs that anyone has implemented to foster linkage, retention or re-engagement in HIV care. I’m particularly interested in the initial linkage from the community to an HIV treatment center and also the early period following entry into medical care. A number of studies have shown us that early missed visits and attrition (loss to follow-up) within the first year is incredibly common and associated with detrimental individual health outcomes while also posing a challenge to HIV prevention. With increasing attention to ‘treatment as prevention’ bolstered by the HPTN 052 study findings, the importance of rapid linkage ...

Good morning. My name is Michael Mugavero and I’m an Associate Professor of Medicine at the University of Alabama at Birmingham (UAB). My research focuses on engagement in HIV medical care and I’m an Infectious Diseases trained physician who provides medical care at the UAB 1917 HIV/AIDS Clinic, a Ryan White Part C clinic with a large catchment area.
Others have nicely outlined key barriers and facilitators to linking and retaining persons in HIV medical care in earlier posts. I’d like to follow-up on Tom’s most recent post and see if we can engage in a dialogue on programs that anyone has implemented to foster linkage, retention or re-engagement in HIV care. I’m particularly interested in the initial linkage from the community to an HIV treatment center and also the early period following entry into medical care. A number of studies have shown us that early missed visits and attrition (loss to follow-up) within the first year is incredibly common and associated with detrimental individual health outcomes while also posing a challenge to HIV prevention. With increasing attention to ‘treatment as prevention’ bolstered by the HPTN 052 study findings, the importance of rapid linkage and early retention has been amplified in recent months.
As Tom suggested, many programs that I am aware of are conducted as quality improvement and outreach initiatives rather than research programs. As such findings are often not presented at scientific meetings or published in the literature. I think this forum provides a nice opportunity for sharing of best practices, what’s worked (and not worked!), and that much can be gleaned from our collective public health, clinical and research initiatives in this area. Look forward to hearing from you…

So many interesting and critical issues have been presented. I was wondering, are there people in community that have a sense of what barriers, or facilitators, their patient populations experience in terms of getting into care and staying in care over time? Catherine mentioned older than 40, substance abuse, ethnic minority and homelessness as being key issues in their US (Mass) based program. And outreach has been mentioned from the community as potential intervention approaches. Do others have experiences with this as well?

Really insightful and interesting contributions! Thank you!

Rivet

I can clearly relate to the dilemna Ingrid faces in her research in South Africa as she tries to ascertain why many HIV infected individuals in South Africa are not initiating care. I'm a pediatric nurse practitioner, and clinical coordinator of the Akaa Project, Inc., a US based nonprofit assisting families in a remote community in the Yilo Krobo district of the Eastern region of Ghana. This health care initiative is in its very earliest of stages and there is considerable opportunity for growth, global involvment and research. The families have extremely limited access to health care and most are treated by the community prophets. It was an eye-opening experience to visit this summer, while living right in the midst of the community, while learning and sharing the culture of these wonderful families. I started to develop a great understanding of the impact of culture, illiteracy, and poverty on health care. HIV is essentially shunned. The major issue is the social stigma and the prospect of becoming an outcast. As a result, people rarely seek care. Some families believe the Dipo Rite of passage protects girls from HIV. Many believe that it is something they will eventually become ill ...

I can clearly relate to the dilemna Ingrid faces in her research in South Africa as she tries to ascertain why many HIV infected individuals in South Africa are not initiating care. I'm a pediatric nurse practitioner, and clinical coordinator of the Akaa Project, Inc., a US based nonprofit assisting families in a remote community in the Yilo Krobo district of the Eastern region of Ghana. This health care initiative is in its very earliest of stages and there is considerable opportunity for growth, global involvment and research. The families have extremely limited access to health care and most are treated by the community prophets. It was an eye-opening experience to visit this summer, while living right in the midst of the community, while learning and sharing the culture of these wonderful families. I started to develop a great understanding of the impact of culture, illiteracy, and poverty on health care. HIV is essentially shunned. The major issue is the social stigma and the prospect of becoming an outcast. As a result, people rarely seek care. Some families believe the Dipo Rite of passage protects girls from HIV. Many believe that it is something they will eventually become ill with, as part of the human experience. Although efforts have been made to discuss prevention and transmission (by project team, Marie Stopes International, etc. unprotected sex remains the norm. Mom's often give birth at home. Most children have poor growth and stunting. Its totally unclear how many of these children have HIV, given their frail stature, abdominal distention, and recurrent infections, including malaria and parasites. There is a young boy in the community sent to live with a family member in another village due to ongoing infections, weakness, and FTT. His father was believed to have succumbed from HIV. His sister had an antecubital abscess without any source of entry(parents refused to take her to health facility), although resolved spontaneously. Another sibling also has recurrent respiratory infections and splenomegaly.
How do we get community members and families to understand the benefits of diagnosis and treatment, in order to avert early human suffering when left untreated? Its clear that it needs to be done at the community level. With global academic, research and clinical support, it may be possible for selected Krobo women, and men to take on this effort, toward eliminating misconceptions, while focusing on discussion, ideas and development of specific strategies to deal with monumental health care issue. Since ther are so many "unknown" and "silent" members, with presumed HIV infection, the challenge lies in ways to counter transmission where sexual activity is very frequent, remains male initiated, often is polygamous and where Krobo adolescent girls are taught early on ways to highlight male experiences.
Mary Grimanis, PNP, IBCLC
Health Care Coordinator
The Akaa Project, Inc.
also employed at Children's Hospital, Boston and Harvard Vanguard Medical Associates.

May I please bring out another problem which I see in the Indian context?
The government provides free ART(SOME DRUGS) through specified centres.The result is that virtually all doctors refer their patients to these centres.Sounds good but not all patients go to these centres or remain there.One of the problems is that many patients do not want to visit these centres or be seen going there or have practical difficulties commuting etc.
It would be far more useful if all internists were confident of treating HIV as they are comfortable with TB.The government would do well to spend resources on education of doctors and motivating them to treat HIV patients like any other patient in the clinic.No one need know which patient in the waiting room is HIV patient.

Hi I am an Associate Professor in the Department of Community Medicine. As far as the delivery of health services go in a country like India, I would like to say that its commendable seeing the amount of redtape that goes on in establishing a healthsystem for a particular disease of importance. We do have an National AIDS Control Organization (NACO) which primarily controls the whole aspect of delivery of healthcare to AIDS patients but there are some of my point of view I would like to put across:
1. We are seeing the glamorization (if that's the correct word) of healtcare delivery services particularly by private healthcare providers with their glossy appearances an important attraction factor. How about blinging up the AIDS treatment and counselling program with advertisements similar to attracting people to the GYM or an AYURVEDIC treatment.
2. I still don't see enough information on treatment adherence, compliance, primary preventive measures being splattered in a more colorful and vast canvas for everyone to notice it, which means we are still trying to create an image of shame from this whole exercise.
3. Doctors go through their graduation and post graduation being bombarded with clinical aspect ...

Hi I am an Associate Professor in the Department of Community Medicine. As far as the delivery of health services go in a country like India, I would like to say that its commendable seeing the amount of redtape that goes on in establishing a healthsystem for a particular disease of importance. We do have an National AIDS Control Organization (NACO) which primarily controls the whole aspect of delivery of healthcare to AIDS patients but there are some of my point of view I would like to put across:
1. We are seeing the glamorization (if that's the correct word) of healtcare delivery services particularly by private healthcare providers with their glossy appearances an important attraction factor. How about blinging up the AIDS treatment and counselling program with advertisements similar to attracting people to the GYM or an AYURVEDIC treatment.
2. I still don't see enough information on treatment adherence, compliance, primary preventive measures being splattered in a more colorful and vast canvas for everyone to notice it, which means we are still trying to create an image of shame from this whole exercise.
3. Doctors go through their graduation and post graduation being bombarded with clinical aspect of HIV/AIDS and still we believe that they need to be trained again and again...... we need to focus on how they will be interacting and treating patients where most of the time commercial interests far outweigh the beneficial one.
4. Every medical college should be a center for HIV/AIDS treatment and counseling since they do have enough reach among varied populations both rural and urban.
5. HIV/AIDS patients should be tracked once they join a program so that at every point of time they can be provided counseling and support at every stage of their treatment.
Many other reasons, resources and ideas can be generated but the most important thing is there should be important milestones in healthcare delivery and each one of them should be accomplished one by one. Jumping over one to get to another will only cause more hindrances in achieving a near universal prevention, treatment, cure and health promotion of HIV/AIDS infection.

Hi. Good feedback on a very interesting and challenging topic. I am a strategic Information Advisor with a USG funded projected supporting HIV care and treatment in Ethiopia. Linkage is also a major challenge and an area that has not received much attention in our context.

At our facilities, based on tracing done by adherence supporters of HIV-positive patients, the intra-facility linkage rate is about 50% at hospital level. This tends to be much better at community health centers. There are of course numerous studies regarding adherence and ART barriers. But to better understand some of the issues related to linkage and retention in our context, we conducted an informal survey of 125 patients to determine potential barriers to retention. We discovered that about 42% of these patients identified stigma as a major barrier with fear that family and friends may find out. Other barriers included: fear of medication/side effects (36%), depression/anxiety (5%), forgetting to take medication (4%), belief that medication will not work (4%), lack of proper nutrition (2%), loss of parent(s) (2%), disclosure issues (1%), and transportation (1%). This was by no means a rigorous study but it definitely gives us an idea of key ...

Hi. Good feedback on a very interesting and challenging topic. I am a strategic Information Advisor with a USG funded projected supporting HIV care and treatment in Ethiopia. Linkage is also a major challenge and an area that has not received much attention in our context.

At our facilities, based on tracing done by adherence supporters of HIV-positive patients, the intra-facility linkage rate is about 50% at hospital level. This tends to be much better at community health centers. There are of course numerous studies regarding adherence and ART barriers. But to better understand some of the issues related to linkage and retention in our context, we conducted an informal survey of 125 patients to determine potential barriers to retention. We discovered that about 42% of these patients identified stigma as a major barrier with fear that family and friends may find out. Other barriers included: fear of medication/side effects (36%), depression/anxiety (5%), forgetting to take medication (4%), belief that medication will not work (4%), lack of proper nutrition (2%), loss of parent(s) (2%), disclosure issues (1%), and transportation (1%). This was by no means a rigorous study but it definitely gives us an idea of key barriers.

To address some of the linkage challenges, case managers, adherence supporters and community volunteers (CV) work hand in hand to trace and ensure patients are linked. Secondly, we’re establishing a linking between hospitals and community health centers. This involves hospital mentors traveling to health centers and providing mentorship to health center staff. During their visits, mentors follow-up on refereed patients to ensure linkage. Redesign of the patient flow at health facilities has also been done to ensure that patients identified as HIV-positive at PIHCT/VCT pass through the ART clinic.

So how much of a difference has all this made on retention and lost-to-follow-up (LTFU) rates? Over the course of a year we’ve noticed a gradual decline in LTFU rates (although not statistically significant) from 51 to 45 LTFUs per 1000 patient months of follow-up. The major decrease in LTFU is among patients that live with the catchment area of the hospital and health centers. However, for patients that are outside the catchment area the linkage continues to be a challenge.

Mikael

Thank you for this post.....I think it was really excellent. I totally agree that we need more positive advertisement geared toward testing and treatment with HIV....we need to find ways to normalize it and take away the stigma.
I truly believe that much of the difficulties we have around testing/treatment and adherence are related to the internalized and also still very real external stigma. I think it is going to be VERY hard to make any headway until we find ways to normalize HIV as a chronic disease like every other chronic disease, and to decrease stigma.


Jonah K. Pierce RN, ACRN
Charge Nurse
Infectious Diseases Clinic
1st Floor Memorial Hospital
101 Manning Drive
Chapel Hill, NC 27514
Office Phone: 919-843-5980
Clinic Phone: 919-966-7199
Fax: 919-966-4587

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Thank you for this post.....I think it was really excellent. I totally agree that we need more positive advertisement geared toward testing and treatment with HIV....we need to find ways to normalize it and take away the stigma.
I truly believe that much of the difficulties we have around testing/treatment and adherence are related to the internalized and also still very real external stigma. I think it is going to be VERY hard to make any headway until we find ways to normalize HIV as a chronic disease like every other chronic disease, and to decrease stigma.


Jonah K. Pierce RN, ACRN
Charge Nurse
Infectious Diseases Clinic
1st Floor Memorial Hospital
101 Manning Drive
Chapel Hill, NC 27514
Office Phone: 919-843-5980
Clinic Phone: 919-966-7199
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These posts raise some great points. Mikael, I agree with you that direct hand offs improve linkage to care, and that mentoring has tremendous potential. We have a randomized trial underway to see if it helps in Houston. One of the things the mentors report on is how often patients they are mentoring are shocked at how long they've been living with HIV, and how healthy they appear. There still is the notion, even in the US, that HIV is a death sentence. The mentors also share their experiences overcoming fear and stigma. The randomized data will be analysed in about 3 years. Working with mentors has its challenges, including training, confidentiality, dependability (they are patients, too), and buy in from the rest of the health care team.

The post from Sandeep Saluja points out a common problem. "Normalizing" HIV by talking about it more in public, advertising, social marketing, etc., can help decrease stigma. But they don't work quickly, and in the meantime solutions for the stigmatized patient need to be developed. One option we have here is an HIV clinic embedded in a community health center. Our main clinic (4000 patients), called Thomas Street Health Center ...

These posts raise some great points. Mikael, I agree with you that direct hand offs improve linkage to care, and that mentoring has tremendous potential. We have a randomized trial underway to see if it helps in Houston. One of the things the mentors report on is how often patients they are mentoring are shocked at how long they've been living with HIV, and how healthy they appear. There still is the notion, even in the US, that HIV is a death sentence. The mentors also share their experiences overcoming fear and stigma. The randomized data will be analysed in about 3 years. Working with mentors has its challenges, including training, confidentiality, dependability (they are patients, too), and buy in from the rest of the health care team.

The post from Sandeep Saluja points out a common problem. "Normalizing" HIV by talking about it more in public, advertising, social marketing, etc., can help decrease stigma. But they don't work quickly, and in the meantime solutions for the stigmatized patient need to be developed. One option we have here is an HIV clinic embedded in a community health center. Our main clinic (4000 patients), called Thomas Street Health Center, is dedicated to HIV. So if you are seen there by someone you know, you may be disclosing your status. We have a smaller clinic (500 patients) in a different location that operates in a large community clinic (Northwest Clinic). Nothing distinguishes Northwest Clinic as having an HIV clinic inside it. It is a perfect option for persons who are really fearful about disclosure. However, the HIV clinic at Northwest is a smaller operation and we can't staff it as fully as at Thomas Street, so the sickest and neediest patients do need to go to Thomas Street. I think the best thing we can do is provide options for patients so that they can successfully manage HIV in an environment that suits their immediate needs. Doing that with limited resources is difficult, but not impossible. Does anyone have experience with similar or different approaches trying to avoid 'forced disclosure' by being seen in an HIV clinic?

Hello everyone,

I am a researcher at the New York State Department of Health AIDS Institute. Although we don’t have quantitative data specifically for assessing linkage and retention in care, we have looked at correlates of lost to follow-up among a cohort of approximately 2500 patient attending treatment adherence support programs across New York State. The social and demographic factors associated with lost to follow-up in our sample included younger age, African American and Latino(a) race/ethnicity (obviously a proxy for other socio-economic barriers), unstable housing, psychological distress, unemployment, substance use, travel time to the program, and baseline nonadherence. We also conducted qualitative interviews to determine the adherence services that clients found most beneficial, which included health education, case management/social work, and - most importantly - the emotional/social support provided by adherence counselors, peer educators and other adherence program staff. Another analysis revealed that co-location of clinical and adherence services was the most important structural predictor of successful adherence. Other qualitative findings have shown that in addition to co-location of adherence support and clinical services, a “one-stop shopping” model is ideal, especially for patients who are at high risk for nonadherence. Mental health and substance use services are ...

Hello everyone,

I am a researcher at the New York State Department of Health AIDS Institute. Although we don’t have quantitative data specifically for assessing linkage and retention in care, we have looked at correlates of lost to follow-up among a cohort of approximately 2500 patient attending treatment adherence support programs across New York State. The social and demographic factors associated with lost to follow-up in our sample included younger age, African American and Latino(a) race/ethnicity (obviously a proxy for other socio-economic barriers), unstable housing, psychological distress, unemployment, substance use, travel time to the program, and baseline nonadherence. We also conducted qualitative interviews to determine the adherence services that clients found most beneficial, which included health education, case management/social work, and - most importantly - the emotional/social support provided by adherence counselors, peer educators and other adherence program staff. Another analysis revealed that co-location of clinical and adherence services was the most important structural predictor of successful adherence. Other qualitative findings have shown that in addition to co-location of adherence support and clinical services, a “one-stop shopping” model is ideal, especially for patients who are at high risk for nonadherence. Mental health and substance use services are particularly important, as well as ensuring that case management, social services, peer education, and other ancillary services are integrated into the overall treatment plan, as needed. On a similar note, effective communication between the multi-disciplinary team has also been important in New York State, with regular team meetings and case conferencing being key to successful adherence, linkage and retention of patients. While these are not direct measures of linkage and retention, it is not unlikely that improving the way services are structured and delivered should improve linkage and retention in care (i.e., a satisfied patient is more likely to return). I understand that all of this is not necessarily possible in a resource constrained environment, but to the extent that various services can be integrated should remove some of the barriers that patients face in accessing medical care and social services. I’m sure that none of this is particularly surprising to those of you with much more frontline experience than me, but I thought I’d offer up a bit of what we’ve learned here in New York State. Thanks Rivet for initiating such a great discussion and thanks to everyone for sharing their insights.

Kind regards,

Tyler

I just read through all of the posts and this has been a great discussion. Tyler, you point out many real-world implementable strategies that may help engage individuals in care. It’s great to not get bogged down waiting for results from randomized trials (although these are very important), and Tom pointed out the same thing. Support, both from friends and family and from the provider/clinic seem to be a very important foundation to adequate engagement in care. The concepts of co-location or one-stop shopping also seem to be important. In our public health department we diagnose about 50% of all new infections each year in the city of Denver. We have a very active linkage-to-care program modeled somewhat after the ARTAS study design, and it is very effective. In 2010 our program linked 87% of new-diagnoses into care, mostly within 3 – 6 months. We believe one of the key components is the ability to spend time with, counsel, and support the newly diagnosed individual. Typically our linkage coordinators meet 3 – 5 times with each individual. It is also very helpful that the largest HIV clinic in Denver is in the same building and frequently there is a direct ...

I just read through all of the posts and this has been a great discussion. Tyler, you point out many real-world implementable strategies that may help engage individuals in care. It’s great to not get bogged down waiting for results from randomized trials (although these are very important), and Tom pointed out the same thing. Support, both from friends and family and from the provider/clinic seem to be a very important foundation to adequate engagement in care. The concepts of co-location or one-stop shopping also seem to be important. In our public health department we diagnose about 50% of all new infections each year in the city of Denver. We have a very active linkage-to-care program modeled somewhat after the ARTAS study design, and it is very effective. In 2010 our program linked 87% of new-diagnoses into care, mostly within 3 – 6 months. We believe one of the key components is the ability to spend time with, counsel, and support the newly diagnosed individual. Typically our linkage coordinators meet 3 – 5 times with each individual. It is also very helpful that the largest HIV clinic in Denver is in the same building and frequently there is a direct handoff, with excellent communication that facilitates initial engagement. That’s not to say that barriers don’t exist, they still do, but I agree with the above posts that there are some simple strategies to promote engagement.

Tom I also liked your point about having a more private HIV care setting available for individuals. Stigma is unbelievably heavy with this infection. Stigma is one of the most frequently mentioned barriers to care in work we are doing. HIV infection should be perceived as a ‘normal’ illness like hypertension, but that’s a long way off. Similar to Houston we have a larger HIV clinic (Infectious Diseases Clinic) that is a known entity. And in some ways that’s a bad thing because privacy is removed for individuals who might be seen accessing care here, or who are afraid they will run into someone they know in the waiting room. We also have two HIV clinics that operate within large community health settings which adds anonymity for patients. I am always interested in hearing ideas on ways to combat stigma, and I hope this thread continues with more posts.

I also wanted to respond to Catherine O’Connor who posted earlier. Her experience with finding out-of-care individuals through education and testing is not uncommon. It sounds like you are providing a remarkable service through your program. In our testing sites about 25% of all individuals who test positive are known to be HIV-infected. The reasons for testing are multifold. Some individuals are new to the area and didn’t know how to access care. Some remain in denial about their infection. Others never reported their prior test results and were discovered through matching with state reporting data. Their reasons for repeat testing are unclear. But whatever the reason for repeat testing, it is an excellent opportunity for linkage or re-linkage activities. Our linkage to care program works with these individuals in the same manner as with new diagnoses. In our evaluation of our linkage program, repeat testers linked faster and overall more of them had at least one visit with an HIV care provider compared to newly diagnosed individuals. Over time their rates of retention in care were the same.

I've enjoyed following these posts! To build upon Ed's most recent points I've attached a recent paper that presents findings from qualitative interviews of newly diagnosed patients who never linked to HIV medical care (CDC Never in Care study). Key themes identified that influenced lack of are seeking included the quality of the HIV CTR experience (esp. counseling), longitudinal and consistent (same person) f/u and support post-testing (or lack thereof), and active vs. passive referral for medical care. Another recent paper from Hightow-Weidman and colleagues reporting on a HRSA SPNS similarly idintified the importance of active referral among young men of color who have sex with men (AIDS Patient Care STDS. 2011 Aug;25 Suppl 1:S31-8. Epub 2011 Jun 28.)

Sounds like the LTC program in Denver addresses these barriers / facilitators and has achieved great success! Interested to here about other programs...

Excellent discussion! Thanks for all of the postings from our expert panel and community members so far.

In my research, I have been exploring cell phones (i.e. SMS and interactive voice response) as a means for measuring adherence. Ingrid Bassett indicated that some on-going studies are evaluating the efficacy of phones for providing retention support. Additionally, Ed Gardner mentioned the use of IT to identify patients at risk for poor retention. I'm curious if other members of this community are using cell phones or other technology to promote retention in care.

Thanks!
Jessica

Excellent discussion. I'm a researcher and I'm working adherence in female patiens. The main barrier in this population is stigma and mental health problems. Also pregnancy issues are involved. We seen many women give up after having children, and focus only on treatment and care of their babies. we try to develop a prevention program, before pregnancy to assist this women.
Dear Jessica I attach a papper about mobile phone and adherence I hope it could help (from Pop-Eleches et al, 2010.)

Researcher AIDFM

Psicologa Clinica, Clincal Psychologist

Av. Prof. Egas Moniz,

1649 – 028 Lisboa,





00447717475642


Renata Fialho
Psicóloga Clínica | Investigadora Sénior
Centro de Estudos e Investigação Psicossocial para o VIH/Sida

Clinical Psychologist | Senior Researcher
Psychosocial Study and Investigation Center for HIV/Aids



Linha ABRAÇO 800 22 51 15
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We give every new positive person that we identify with new infection or a positive person who we are assisting with re-engaging in HIV care who has become lost to follow up, a disposable cell phone if they do not have a cell phone. We pay for minutes if they do have a cell phone, but do not have a plan that includes unlimited monthly minutes. For a small patient group this has been very cost effective for us as it reduces hours of outreach time trying to find them and allows us to implement a phone contract for safety in patients who are grappling with the stress of a new HIV diagnosis with minimal/absent community supports.
Increasing minutes monthly during the engagement phase is an additional incentive for the patient to stay connected. We provide this support for 3 to 6 months which is the usual amount of time it takes for our team to transition the patient from the street to traditional HIV care systems. This has become an important strategy to assist with initial and re-engagement of patients from our mobile van program to comprehensive HIV care.

Catherine A. O'Connor, MSN, ACRN
Northeastern University
School ...

We give every new positive person that we identify with new infection or a positive person who we are assisting with re-engaging in HIV care who has become lost to follow up, a disposable cell phone if they do not have a cell phone. We pay for minutes if they do have a cell phone, but do not have a plan that includes unlimited monthly minutes. For a small patient group this has been very cost effective for us as it reduces hours of outreach time trying to find them and allows us to implement a phone contract for safety in patients who are grappling with the stress of a new HIV diagnosis with minimal/absent community supports.
Increasing minutes monthly during the engagement phase is an additional incentive for the patient to stay connected. We provide this support for 3 to 6 months which is the usual amount of time it takes for our team to transition the patient from the street to traditional HIV care systems. This has become an important strategy to assist with initial and re-engagement of patients from our mobile van program to comprehensive HIV care.

Catherine A. O'Connor, MSN, ACRN
Northeastern University
School of Nursing
207 D Robinson Hall

Mobile: 781-964-3856
Office: 617-373-8207
FAX: 617-373-8675

Thank you all for this interesting discussion! There is such important work taking place. For those of you who have been focusing on overcoming psychosocial barriers, what interventions have you found to be most effective? I am also wondering if anyone has done any work using the Partners in Health Model of using accompagnateurs to help bring people to clinic or help them take their medications at home?

Nice to hear of all the mobile phone applications to support retention in care. I'm reattaching our paper, WelTel Kenya1 (previously posted in the adherence discussions), that demonstrated improved adherence and HIV suppression through SMS support of patients on ART. Although we focused on adherence, adherence and retention are inherently linked, and by intention to treat (ITT) analyses, loss to follow-up contributes to adherence outcomes.
Note that the World Health Organization held a meeting last week to discuss definitions and priorities for retention in global ART programmes, and mHealth interventions featured as opportunities to improve all stages of retention – including from linkage-to-care after diagnosis to life-long ART. While some evidence is emerging in this field, it is clear that comparative evidence needs to be developed to inform best practices in various health service settings. The paper by Pop-Eleches et al. nicely demonstrated that not all mobile phone interventions are equally effective (weekly SMS reminders were effective in that setting, but daily reminders were not). Resources will need to be allocated where effectiveness is demonstrated, not assumed. Thus, good operations research in the field is encouraged.

What an incredible discussion! Apologies in advance for a lengthy post- it is impossible to summarize what has been discussed this week in just a few paragraphs- so please bear with me.

Posts are from Ghana, India, Portugal, Ethiopia, Kenya, and many parts of the US, and likely many more individuals from other communities reading this discussion.

Once again, I am struck by the sheet volume and quality of on the ground needs assessments and intervention that is being implemented in field- which, in my opinion, is outpacing what is available in the literature. We heard about many structural, social, and personal barriers to linking to and staying in care- poor information about treatment, low quality of treatment centers, poor experiences with the care system, lower income/resources (housing, employment, food), long distance to travel for care, mental health/substance abuse, poor experiences in post-test counseling/linkage (passive referral), and likely the most frequently mentioned factor- stigma.

Reading through these posts you can see examples of interventions in the field that are innovative and comprehensive- mobile health (cell phone use as well) in Mass US (Catherine O'Conner), mentors, community volunteers, and outreach in Ethiopia (Mikael Gebre-Mariam), case management, adherence ...

What an incredible discussion! Apologies in advance for a lengthy post- it is impossible to summarize what has been discussed this week in just a few paragraphs- so please bear with me.

Posts are from Ghana, India, Portugal, Ethiopia, Kenya, and many parts of the US, and likely many more individuals from other communities reading this discussion.

Once again, I am struck by the sheet volume and quality of on the ground needs assessments and intervention that is being implemented in field- which, in my opinion, is outpacing what is available in the literature. We heard about many structural, social, and personal barriers to linking to and staying in care- poor information about treatment, low quality of treatment centers, poor experiences with the care system, lower income/resources (housing, employment, food), long distance to travel for care, mental health/substance abuse, poor experiences in post-test counseling/linkage (passive referral), and likely the most frequently mentioned factor- stigma.

Reading through these posts you can see examples of interventions in the field that are innovative and comprehensive- mobile health (cell phone use as well) in Mass US (Catherine O'Conner), mentors, community volunteers, and outreach in Ethiopia (Mikael Gebre-Mariam), case management, adherence counselors, peer educators, and consolidation of services in NY US (Tyler French), application of cell phone technologies (Jessica Harberer, Richard Lester) and several strategies (cell phones/SMS, case management, outreach, mentors, accompagnateurs) discussed by the expert panel. Importantly, calls for action are clear in terms of desperately needing strategies at all levels to promote a normalization of HIV treatment and living with HIV, or at least the specific removal of the contributions made by health care in stigmatizing HIV (with poorly placed “second class” clinic environments involving long wait times and poor flow that promote a view of HIV as being a disease of the poor and ‘undeserving’). Suggestions by Sandeep Saluja and Ahmed Syed are excellent steps forward in this and require strong (agressive) advocacy to get there. But systems can change. They do change. Question is how to get in there and move it along in a health-positive direction. There are top down approaches (changing structures of care and changing community perspective to change internalized stigma) and bottom up approaches (work with individuals to build buffers and capacity to negotiate external stigma to minimize internalization of it) and everything in between (changing clinic environments, communication patterns between healthcare team and the patient/individual, build a healthcare presence in communities through aggressive outreach). Small steps should not be ignored here- one clinic changing their environment (retooling flow, hanging pictures/using flowers/magazines in waiting area/walls in warm colors, prioritizing quality metrics and patient satifisfaction) can have a remarkable impact. But in the vast majority of cases of clinic redo that I'm familiar with, it is the clinic staff and community volunteers who brought in things from home, picked up flowers and magazines, and so on. A gross roots approach that often goes unrecognized by most- except the patients...they notice.

I have been a researcher in the area of linkage and retention in care for the last 5 years or so, and in adherence for the last 10. I have learned so much from the panel and the community who took time out from their busy schedules to share their insights and experiences. I am so grateful. I sincerely hope we can keep our conversation going. There are so many countries and regions that I know have members reading along but have not been represented in this discussion. We need to learn more from each other! What are the issues in your community for linkage and retention in HIV care? What are you or others doing/thinking of doing? What needs to be done?

I am also hoping that we can build links between community/practice and research, as there are many members from and crossing each community. If there is anyone in the community who is implementing linkage or retention strategies and does not have a method in place to evaluate the potential impact but wants to- please reach out through a post. Researchers, if you have findings or ideas that you want to vet with the practice community- please reach out through a post. There are many methods available to move ‘practice based evidence’ forward and to increase the responsiveness of research to the realities of practice. I think it is clear from this discussion that there is a ton that practice-based innovations can teach research communities, and, personally, I am looking forward to learning more.

Thank you to all and let’s keep this going!

Sincerely,
Rivet

Here's a link to a NY Times article addressing some of the barriers to adherence and retention that have been discussed during this panel. A simple strategy which should have the potential to help people living with HIV/AIDS in many different settings.

Regards,

Tyler

http://www.nytimes.com/2011/09/27/health/27mozambique.html?_r=1&hp

We developed a methodology to map out an HIV treatment in rural Kenya from testing to treatment. We wanted to know where patients most likely fall out of care, and what are the systemic or programmatic barriers they face to linkage to care along the continuum. The method is simple but showed interesting results.

1. We conducted successive interviews with care providers and staff at all levels of the treatment program. A primary interview served to develop an initial map of the program. The map was used as an interview prompt, and each successive interviewee was asked to make changes to improve the map.
2. Interviewees were asked to describe areas of significant patient attrition on the map, give potential reasons for why patients fall out at these points, and describe how patient participation at each linkage point is documented.
3. Documentation describing patient participation at each linkage point was reviewed to calculate proportions of patients retained at each point.

Using this simple method, we created a map that describes complex barriers to patient retention at multiple linkage points along the continuum of care. In this particular program in Kenya, 7 critical linkage points exist between testing and treatment initiation ...

We developed a methodology to map out an HIV treatment in rural Kenya from testing to treatment. We wanted to know where patients most likely fall out of care, and what are the systemic or programmatic barriers they face to linkage to care along the continuum. The method is simple but showed interesting results.

1. We conducted successive interviews with care providers and staff at all levels of the treatment program. A primary interview served to develop an initial map of the program. The map was used as an interview prompt, and each successive interviewee was asked to make changes to improve the map.
2. Interviewees were asked to describe areas of significant patient attrition on the map, give potential reasons for why patients fall out at these points, and describe how patient participation at each linkage point is documented.
3. Documentation describing patient participation at each linkage point was reviewed to calculate proportions of patients retained at each point.

Using this simple method, we created a map that describes complex barriers to patient retention at multiple linkage points along the continuum of care. In this particular program in Kenya, 7 critical linkage points exist between testing and treatment initiation, four of these occur prior to disease staging. Then, combining our map with provider discussion on patient barriers, we determined that at least 22 provider identified barriers to patient linkage exist: 11 were considered patient barriers and 11 were considered systemic barriers. We then evaluated what we know of patient retention at the identified linkage points. Documentation was available to describe the following for adult patients: enrolled patients receiving CD4 results (96.6%), non-eligible patients receiving repeat CD4 results (75.8%), eligible patients initiated on ART (71.2%), and patients who were retained on ART at follow up (100%).

Conclusions: It is important to map out our care delivery systems to identify complex systemic barriers to patient linkage to care. Here, we identified 11 system based factors that can be addressed in a quality improvement initiative by the HIV care program. We further highlight the need for an integrated patient tracking system in order to accurately describe patient retention. This process is easily implementable in resource limited settings, and is a necessary first step to improve retention HIV treatment programs.

We'd appreciate any comments!

Sincerely,

Katie McQuade Billinsgley, MD MPH
Post-Doc Research Fellow- Global Health

University of Texas Medical Branch at Galveston
Dept Internal Medicine, Infectious Diseases

Thank you all so much for your wonderful insight and questions in this discussion. I have been following the comments closely and wanted to contribute.

Not quite 10 months ago, we helped organize and attended a meeting on linkages to care and retention in Mozambique. In the introductory session, the presenter from CDC touched on the setting of testing as a potential factor in linkages to care. For example, there is a big difference between someone who goes in for VCT, in that it is more likely that he/she is prepared for linkage to care when compared with someone who is tested in a mobile clinic - a typically brief encounter with unfamiliar health providers.

Michael, as one of the people who had mentioned looking for specific program examples, I thought you might be interested in some of the resources from this meeting. The meeting went on to share examples and lessons learned from several programs, including (but not limited to):

- The telelphone follow-up system in Swaziland
- Incorporating community systems in Thyolo, Malawi
- Chitungwiza, Zimbabwe's focus on linkages among pregnant women
- Zambia's project with mobile counseling and testing in the military

There are quite a few more program ...

Thank you all so much for your wonderful insight and questions in this discussion. I have been following the comments closely and wanted to contribute.

Not quite 10 months ago, we helped organize and attended a meeting on linkages to care and retention in Mozambique. In the introductory session, the presenter from CDC touched on the setting of testing as a potential factor in linkages to care. For example, there is a big difference between someone who goes in for VCT, in that it is more likely that he/she is prepared for linkage to care when compared with someone who is tested in a mobile clinic - a typically brief encounter with unfamiliar health providers.

Michael, as one of the people who had mentioned looking for specific program examples, I thought you might be interested in some of the resources from this meeting. The meeting went on to share examples and lessons learned from several programs, including (but not limited to):

- The telelphone follow-up system in Swaziland
- Incorporating community systems in Thyolo, Malawi
- Chitungwiza, Zimbabwe's focus on linkages among pregnant women
- Zambia's project with mobile counseling and testing in the military

There are quite a few more program examples, as well as a plethora of register forms, patient cards and booklets, and other tools that the programs used to improve adherence and retention.

Very encouraging to know that mobile applications can indeed be used to help in adherence and retention. I am currently developing a mobile SMS application that community health workers, doctors,pharmacist will use to remind patients when and how to take their ARV medication. The application will be sending reminders to the patient on the dosage and when to take the medication. Kindly give me your thoughts on these

My name is Laurien Sibomana from Pittsburgh.
If I can deviate a little from HIV to Diabetes; I would like to ask if it's possible to use your system ( mobile ).My team and I are working on diabetes T1 in developing countries and one of the most pressing issues is about adherence, getting youth take their insulin on time. I wonder if we can use your strategy or any other idea?
Thank you.

Laurien Sibomana.
inezasibo1[at]gmail.com

Hi Laurien,It is very possible to use, all that is needed is to capture the medication regimen for the patient, then send it as an SMS.so its just a matter of system configuration..

Dear John,
This sounds very optimistic but remember it might not work to a person who has not disclosed his/her status to the spouse.
Romans1:16-20

John Nbithi

I like your thinking, well you can borrow the idea from Malaria "SMS for
life" and maybe after a while analyze the after effect on the launch of the
same to HIV +ve patients. But thats a good line of thinking.


Samwel



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*Best Regards*

*Kimani samwel*

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Laurien,

Thanks for your efforts in trying to combat diabetes. Well, if there is a
roll out or a pilot project on the use of mobile to try and influence the
patients +vely on the right usage of medicines then i think it can be rolled
out to other diseases but i would 1st advice that before its rolled out a
sample population must prove that it will work.
At the end of the day Mobile can be really useful in promoting adherence to
the clients or patients using a certain drug.

Samwel


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*Kimani samwel*

*0725 740 340*

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HI All,
There is starting with MOH-Uganda and Clinton foundation to strenghthen the patients ability to keep appointments using an appointment book at the health facilities and they hope that this will help in adhering to clinic visits and this could cascade to other related treatments given to patients, for now it is HIV care though. For the non adherent patients, they are called by expert clients to follow up on them. We are following up on this to see if it improve patients' retention.Daniel-Mildmay

Hi everyone,

We've just posted a discussion brief summarizing the key points of this Expert Panel on Linkage and Retention in HIV care. It can be accessed online, and is also available as a PDF, at: http://www.ghdonline.org/adherence/discussion/expert-panel-linkage-and-retent...

While the Expert Panel has ended, I hope this important conversation can continue. Please share your thoughts on additional ways to decrease stigma and normalize HIV care, strategies for linkage or retention in care that you have tried, or would like to evaluate, as well as any research findings or ideas that you would like to share with practitioners.

Thank you all for such a rich discussion!

Hi everyone,

Given our discussions about decreasing stigma during this Expert Panel, I thought this upcoming HOPE Nurses Conference, HIV-Related Stigma: Exploring the Concept, might be of interest.

This conference is being held in Boston on Wednesday, December 21st from 8 to 9AM EST, but will also be accessible via the web.

Please see this discussion for more details: http://www.ghdonline.org/nursing/discussion/upcoming-hope-nurses-conference-h...

My name is Anneliese Smith, BSN, RN. I am involved in a rural Kenyan project to promote health services through a small clinic. We are initiating a HIV testing and treatment program this month. While planning for the programs launch we are pooling our intellectual resources to make it the most successful program possible. Would anyone in this discussion group be willing to supply an assessment tool for the purpose of assessing the barriers to continued care? It has been brought to our attention that the stigma associated with going to a VCT Centre (a place of HIV testing/counseling/treatment) is high and people would like to come to our facility to receive their treatments in neutral environment. We would like to set up our program with the tools for research already in place to assess the true needs of our community in general, as they have not been assessed yet.
From reading the posts I can see that this is a group of experienced professionals and any guidance offered to this new project would be greatly appreciated. We are working with the health district to make this treatment expansion possible but any practical tools that could be offered ...

My name is Anneliese Smith, BSN, RN. I am involved in a rural Kenyan project to promote health services through a small clinic. We are initiating a HIV testing and treatment program this month. While planning for the programs launch we are pooling our intellectual resources to make it the most successful program possible. Would anyone in this discussion group be willing to supply an assessment tool for the purpose of assessing the barriers to continued care? It has been brought to our attention that the stigma associated with going to a VCT Centre (a place of HIV testing/counseling/treatment) is high and people would like to come to our facility to receive their treatments in neutral environment. We would like to set up our program with the tools for research already in place to assess the true needs of our community in general, as they have not been assessed yet.
From reading the posts I can see that this is a group of experienced professionals and any guidance offered to this new project would be greatly appreciated. We are working with the health district to make this treatment expansion possible but any practical tools that could be offered through this discussion group would be greatly appreciated.

Thank you for your time,
Anneliese

I wish to draw this distinguished group's attention to an important conference that delves into the issues of linkage and retention in HIV care, as well as adherence to HIV treatment and prevention interventions. The 7th International Conference on HIV Treatment and Prevention Adherence is taking place June 3-5, 2012, in Miami. The conference is co-hosted by the International Association of Physicians in AIDS Care (IAPAC) and the National Institute of Mental Health (NIMH). This year's Keynote speaker is Jared Baeten, MD (University of Washington) whose presentation is entitled, "Antiretroviral-Based Treatment and Prevention Strategies: Advancing Science to Practice.

The abstract submission deadline was extended today through February 6, 2012. Early registration ends March 11, 2012. Visit www.iapac.org to review the conference program, faculty roster, submit abstracts, and/or register online.

Warmest regards,

Dr. Jose M. Zuniga
Conference Co-Chair

Hi Anneliese,

Thanks for your posting. Here are two internalized stigma scales you might find interesting (recommended to me by Alex Tsai and Ingrid Katz):

Res Nurs Health. 2001 Dec;24(6):518-29.
Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale.
Berger BE, Ferrans CE, Lashley FR.
Source
Department of Medical Surgical Nursing, College of Nursing, University of Illinois at Chicago, Chicago, IL 60612-7350, USA.
Abstract
An instrument to measure the stigma perceived by people with HIV was developed based on the literature on stigma and psychosocial aspects of having HIV. Items surviving two rounds of content review were assembled in a booklet and distributed through HIV-related organizations across the United States. Psychometric analysis was performed on 318 questionnaires returned by people with HIV (19% women, 21% African American, 8% Hispanic). Four factors emerged from exploratory factor analysis: personalized stigma, disclosure concerns, negative self-image, and concern with public attitudes toward people with HIV. Extraction of one higher-order factor provided evidence of a single overall construct. Construct validity also was supported by relationships with related constructs: self-esteem, depression, social support, and social conflict. Coefficient alphas between .90 and .93 for the subscales and .96 for the ...

Hi Anneliese,

Thanks for your posting. Here are two internalized stigma scales you might find interesting (recommended to me by Alex Tsai and Ingrid Katz):

Res Nurs Health. 2001 Dec;24(6):518-29.
Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale.
Berger BE, Ferrans CE, Lashley FR.
Source
Department of Medical Surgical Nursing, College of Nursing, University of Illinois at Chicago, Chicago, IL 60612-7350, USA.
Abstract
An instrument to measure the stigma perceived by people with HIV was developed based on the literature on stigma and psychosocial aspects of having HIV. Items surviving two rounds of content review were assembled in a booklet and distributed through HIV-related organizations across the United States. Psychometric analysis was performed on 318 questionnaires returned by people with HIV (19% women, 21% African American, 8% Hispanic). Four factors emerged from exploratory factor analysis: personalized stigma, disclosure concerns, negative self-image, and concern with public attitudes toward people with HIV. Extraction of one higher-order factor provided evidence of a single overall construct. Construct validity also was supported by relationships with related constructs: self-esteem, depression, social support, and social conflict. Coefficient alphas between .90 and .93 for the subscales and .96 for the 40-item instrument provided evidence of internal consistency reliability. The HIV Stigma Scale was reliable and valid with a large, diverse sample of people with HIV.


AIDS Care. 2009 Jan;21(1):87-93.
Measuring AIDS stigmas in people living with HIV/AIDS: the Internalized AIDS-Related Stigma Scale.
Kalichman SC, Simbayi LC, Cloete A, Mthembu PP, Mkhonta RN, Ginindza T.
Source
Department of Psychology, University of Connecticut, Storrs, CT, USA.
Abstract
AIDS stigmas create significant barriers to HIV prevention, testing, and care and can become internalized by people living with HIV/AIDS. We developed a psychometric scale to measure internalized AIDS-related stigmas among people infected with HIV. Items were adapted from a psychometrically sound test of AIDS-related stigmas in the general population. Six items reflecting self-defacing beliefs and negative perceptions of people living with HIV/AIDS were responded to dichotomously, Agree/Disagree. Data collected from people living with HIV/AIDS in Cape Town South Africa (n=1068), Swaziland (n=1090), and Atlanta US (n=239) showed that the internalized AIDS Stigma Scale was internally consistent (overall alpha coefficient=0.75) and time stable (r=0.53). We also found evidence in support of the scale's convergent, discriminant, and criterion-related validity. The Internalized AIDS-Related Stigma Scale appears reliable and valid and may be useful for research and evaluation with HIV-positive populations across southern African and North American cultures.

Regards,
Jessica

Anneliese

At the Center for Health Intervention and Prevention we have developed a few measures of facilitators/barriers to retention in HIV care, one of these is specific to factors that may influence early retention in HIV care amongst individuals not yet qualifying for ART. The measure is currently being used as part of an intervention study to promote retention in ealry HIV care in South Africa led by Dr. J Fisher. I am sure they would be happy to share this measure if you are interested.

The measure is based on the Information, Motivation and Behavioral Skills model of health behavior, as applied to initiation and retention in HIV care. So barriers and facilitators are generally organized within these areas- with stigma falling in the personal and social-motivation component but also in the skills area (having the skills to negotiate coming to care in the context of high stigma).

Please let me know if this would be of interest to you ().

Warm regards,
Rivet