Settings and Interventions

Improving Linkage and Retention in Care

Information is taken from two interventions that deal with linkage and retention in care; two interventions deal with linkage and retention into care; the Euro HIV EDAT Project and the OptTest Project.

The recommendations in the Euro HIV EDAT document “Optimal Linkage to care among MSM: a practical guide for CBVCT’s and Points of Care” outlines the following recommendations:

The test situation 

The success of linkage to care starts in the test situation. The following aspects should be taken into account: 

  1. A welcoming and non-judgmental attitude of the staff is important 
  2. Knowledge on sex life and sex practices of MSM is important 
  3. Knowledge on HIV and STIs (including risk of transmission, symptoms and treatments) are important
  4. In settings where Chemsex is a practice of some MSM, knowledge on this issue is important 
  5. Some CBVCTs have good experience with having health staff from the HIV-unit working in the CBVCTs as testers. This can contribute to ensure a good cooperation between CBVCT and HIV-unit
  6. Some CBVCTs have good experience with having HIV-positive people working as staff at the CBVCT, so clients with a reactive test result can immediately be referred to talk with a peer 

If confirmatory test is not taken at the CBVCT 

If a laboratory / STI-clinic is performing the confirmatory test, close cooperation with the laboratory / STI-clinic is recommended. 

  1. This could e.g. be making a specific appointment for the client with the laboratory / STI-clinic for the confirmatory test 
  2. If the laboratory / STI-clinic refer the client to HIV-unit / doctor for treatment in case of a reactive test result, it is advisable that the laboratory / STI-clinic make a specific appointment for the client with the HIV-unit / doctor for treatment
  3. If the laboratory / STI-clinic is informing the CBVCT (and not the client) of the result of the confirmatory test, it is advisable to make a specific appointment with the client at the time the person is referred to laboratory / STI-clinic for the confirmatory test

If a HIV-unit is performing the confirmatory test, close cooperation with the HIV-unit is recommended. 

  1. Close cooperation (and advisably personal cooperation) between the CBVCT staff and the HIV-unit(s) is strongly recommended 
  2. It is recommended that the HIV-unit has in-depth knowledge about how the CBVCT operates and the procedures in referrals to confirmatory testing 
  3. It is recommended that the CBVCT staff makes a specific appointment for the client for the first visit at the HIV-unit 
  4. Clients should be offered to be accompanied at the first visit at the HIV-unit if the assessment is that this would be beneficial for the client.

If a GP is performing the confirmatory test, close cooperation with the GP(s) is recommended. 

In countries where HIV-treatment is offered by GPs, the CBVCT is typically not allowed to refer to specific doctors. This makes it impossible to be make specific appointments for the clients – and they are often left with the only solution of giving the client a list of the relevant doctors. It is the experience that being linked to care (following the HIV diagnosis) contributes to the likelihood of attending the first visit. It is therefore recommended that CBVCTs in this situation start negotiations with the doctors about this problem. 

If confirmatory test is taken at the CBVCT 

  1. Close cooperation (and advisably personal cooperation) with the HIV-unit(s) is strongly recommended 
  2. It is recommended that the HIV-unit has in-depth knowledge about how the CBVCT operates and the procedures in referrals to care 
  3. It is recommended to make a specific appointment for the client for the first visit at the HIV-unit 
  4. Clients should be offered to be accompanied at the first visit at the HIV-unit if the assessment is that this would be beneficial for the client

Documentation of linkage to care 

It is suggested to use the following definition of linkage to care in the future: “Linkage to health care is defined as entry into health care or follow‐up by an HIV specialist or in an HIV- unit after a reactive or confirmatory HIV-test at a CBVCT facility.” 

In many CBVCTs informal information from the HIV-unit or random knowledge from clients are the basis of data on linkage to care. Documentation of linkage to care are crucial to monitor and evaluate the effectiveness and success of CBVCTs. 

A system of unique identifiers to track patients from a CBVCT testing-site to HIV-care should be developed. There are issues of privacy and data protection though, that has to be taken into account. Before a more formalized system is developed, a simple system (e.g. having the client consent to communication between HIV-unit and CBVCT with a signature on a document) might be useful. When making systems to document linkage to care it is important to respect the data protection law in the respective countries. 

To document the success of linkage to care from CBVCTs it is recommended to collect information and prioritise publishing scientific papers. 

Barriers to linkage to care which are not specifically related to the MSM group 

A number of barriers to linkage to care are not specifically related to the MSM group. This can e.g. be: 

  • Patients are referred to a HIV-unit far away from where they live 
  • Underage young people who cannot have access to HIV-test or HIV-treatment without their parents’ knowledge and accept 
  • HIV-units refuse to accept HIV-positive patients because the hospital department are overcrowded 
  • Undocumented migrants do not have access to HIV-treatment in some countries 
  • Language problems if the client do not speak the local language 

These problems are not unique to the CBVCTs but apply to all HIV testing in the specific country whether this is done at a hospital, a clinic, a CBVCT or with a doctor. 

It is recommended that this kind of problems are raised with relevant bodies. 

Information of the support from the CBVCT 

Before the clients leave the CBVCT for further care at a HIV-unit or GP they should be informed on the support that the CBVCT is offering to people living with HIV, whether this is support groups; peer-to-peer support; counselling or psychological, social or medical support.

More data and information can be found at eurohivedat.eu or msm-checkpoints.eu.

OptTest has the following tools available to help improve linkage and retention into care:

Implementing indicator condition (IC) guided testing

  • Online Training Module: Staff Training on IC Guided Testing
  • Online Tool: How to set up IC Guided Testing
  • Policy Briefing: Scaling up early diagnosis for HIV through expanded implementation of provider initiated HIV testing.

Improving linkage to care

  • How to measure Linkage to Care
  • Improving National Data: Stakeholder meetings
  • Assessment Method of Continuum of Care

Addressing legal and regulatory barriers to testing

  • Overview on Legal and Regulatory Barriers
  • Challenging and Changing Regulatory Restrictions to Testing
  • Challenging and Changing Legal and Regulatory Barriers
  • Challenging and Changing Barriers to Prevention and Treatment
  • Tips for Advocacy for Legal and Regulatory Changes (How To guides)

Addressing stigma

Assessing cost-effectiveness of Testing

  • Methodology
  • Examples of Heat Maps
  • Article with Results
  • National Reports

Using the information from Euro HIV EDAT and OptTest projects please move on to these four areas:

  • Technology and Online Tools
  • MSM Networks
  • Peer-led Services
  • Cultural Competence

You may find it useful to make a quick noted description for and examples of work for each of these.

You are to consider two of the areas e.g. MSM networks and peer-led services, to get a better overall understanding of linkage and retention.

It may help you to read and consider the modules in the face-to-face training about Cultural Competence (called Knowing the Community you are working with) as well as the E-Learning module on the use of Social Media. Additional searches on the ECDC website may help to expand the knowledge you already have. Please read carefully both the OptTest and the Euro HIV EDAT websites to assess how the interventions built a ‘best practice’ scenario for each issue you are working with for both linkage to care and retention in care.

You will have 60 minutes for each area you are working with, so will have 120 minutes in total for this task. 

Please make notes for yourself on your thoughts.

Some questions you may find useful in their process are:

  • What functions and what needs improvement in the case study intervention they were using?
  • What could improve the initiative?
  • What did they learn, if anything?
  • Could they replicate the initiative or their improved version in their region/area/work? What may be some of the barriers they may face and how could they try to overcome them? What could it mean for their work if they did replicate the work?

Next module: Building an understanding of anti stigma campaigns

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