Good Practices in the Long-Term Care of People Living with HIV – Learning from Country Experiences

With the aim of focusing European thought-leadership on delivering the greatest potential impact at national level, the HIV Outcomes Steering Group ‘road-tested’ the HIV Outcomes recommendations in Germany and Romania in 2019 to confirm that they are fit for implementation and to demonstrate ways to overcome barriers to their adoption. The findings were summarised in a report, which was presented on 26 November 2019, in the European Parliament.

As life expectancy for people with HIV has increased, additional unmet requirements for achieving good long-term health and well-being have emerged. Although people with HIV can now anticipate near-normal life expectancy, there are unique needs that must be met if their quality of life is to match that of the rest of the population.

Following work undertaken in Italy in Sweden in 2018 (learn more about our findings here), HIV Outcomes also road-tested its recommendations in Germany, Romania and Spain in 2019. This report focuses on the lessons learned to date in Germany and Romania, providing two distinct settings in which to explore the impact of the HIV Outcomes recommendations. A report highlighting lessons learned in Spain will be published in 2020.

Germany

Germany is on the verge of reaching the UNAIDS ‘90-90-90’ goals and has developed, amongst other measures, an innovative approach to community-based testing known as ‘Checkpoints’. However, there is still work to do to improve long-term health outcomes and quality of life for people living with HIV. Adding a fourth goal – quality of life – could help to focus policy and service delivery on long-term outcomes.

This report highlights some good practices in Germany including the introduction of quality-assured specialist services which provide excellent care to people with HIV, . Qualitätssicherungsvereinbarungen ensure a high standard of care and coordinate the patient journey. A more comprehensive evaluation of the services’ structure, how they influence patient outcomes, and the integration of digital tools, could build on this foundation. The report also recommends expanding data collection to include information on comorbidities and long-term well-being. Concrete measures to address discrimination in the health system, and the adoption of a clear target for improving quality of life, are advised.

Romania

Romania was one of the first countries to reduce barriers to care for people with HIV. Current legislation ensures a wide range of rights to social and health benefits for people affected. However, the concept of quality of life for people living with HIV is not well established. Research is required to deepen understanding of what quality of life means to various subgroups of people with HIV in Romania.

Efforts to improve medical education – at undergraduate and postgraduate level – are essential to address patient needs. Public advocacy campaigns are also required to address stigma and discrimination. Policymakers can enhance service delivery by establishing regional centres as independent entities and linking them to medical schools. This would also help to attract younger health professionals and promote multidisciplinary care.

Further findings – as well as examples of existing good practices – are available in the report, which can be accessed here.

Initial talks with some potential members of the German HIV Outcomes steering group have taken place, and future work will focus on bringing together leading experts to discuss in detail how the recommendations can be applied. In Romania, HIV Outcomes will prioritise research on quality of life in 2020. It will also support advocacy projects designed to update and secure the approval of the National Strategy Plan (PNS) for HIV, which overlaps significantly with the HIV Outcomes recommendations.

Learn more about our in-country activities.

Italy and Sweden

With the aim of focusing European thought-leadership on delivering impact at country level, HIV Outcomes ‘road-tested’ its recommendations on the long-term health, well-being and chronic care of people living with HIV in Italy and Sweden in 2018 to identify which recommendations could make a significant difference in each country and to identify ways to overcome any barriers to their adoption. Learnings from work in Italy and Sweden, and examples of good practices in long-term HIV care from these two countries, were the subject of a report presented in the European Parliament in November 2018.

Germany, Romania and Spain

In 2019, HIV Outcomes undertook similar national activities in Germany, Romania and Spain to tailor the HIV Outcomes recommendations for local implementation. This allowed HIV Outcomes to engage with key stakeholders in these countries on changes needed to address long-term health outcomes and quality of life of people living with HIV. A report compiling learnings from HIV Outcomes activities in Germany and Romania were the subject of a report presented in the European parliament in November 2019. A similar report on the learnings from work in Spain will be published in 2020.

Good practices from Germany, Italy, Romania and Sweden are complemented by other country-level examples in the HIV Outcomes Compendium of Good Practices