The European AIDS Treatment Group had the opportunity to co-organise and co-chair the ‘Quality of Life Across Different Age Groups of PLHIV: A Community Perspective’ session during this year’s HIV Drug Therapy Congress in Glasgow. During the session members of the EATG and other stakeholders presented and discussed about the challenges of living and ageing with HIV as they were showcased in the frame of the Ageing with HIV project and its outcomes.
Koen Block (EATG, Belgium) provided an overview of the project, which was launched in 2015, aiming at increasing knowledge about ageing with HIV from a lifecycle perspective. The main activities have been three international conferences and webinars. Also online resources have been published at the project’s website.
In the 50+ group, co-morbidities, polypharmacy and complexity of care management were highlighted by Brian West (EATG, UK), followed by commentary by Giovanni Guaraldi (Italy). The recommendations made by the EATG for this age group are as follows:
- Increase clinical research on ageing and HIV
- Enhance knowledge and history of HIV through engagement of ageing HIV peer educators
- Raise the profile of palliative & end of life care for PLHIV
- Implement multi-morbidity screening tools targeted for ageing PLHIV
- Increase awareness of polypharmacy’s impact on ageing, increasing the risk of co-morbidities, drug-drug interactions, toxicities
- Campaign for TB as an overlooked condition
- Train clinicians and empower PLHIV for increased knowledge of special groups and their needs, especially women (example: menopause)
Stigma and discrimination:
- Advocate for equality of PLHIV and equal partnerships in care to improve quality of life
- Campaign to reduce stigma and discrimination for key populations – targeting health care professionals (using evidence from Stigma Index)
Sanja Belak Skugor (EATG, Croatia) presented about the challenges in accessing testing and sexual health services (due to e.g. need of parental consent) -including PEP and PrEP in particular- disclosure (stigma and self-stigma), self-management of care, understanding drug-to-drug interactions and treatment fatigue as being the main issues for children and adolescents. Parents need to be informed about these issues as well and to be brought into the collaboration. Sanja also mentioned that the transition into adult services is not always easy and needs special attention. Finally, the sexual rights of children/young people are often overlooked (in practice, guidelines etc). Caroline Foster (UK) provided a clinical commentary on the presentation. The recommendations from the EATG are as follows:
Testing & prevention:
– Deliver prevention strategies that are youth-friendly
– Target testing at young MSM, migrants, young children & their parents (incl. anti-natal screening)
– Normalize testing for children/young people (less parental control)
– Scale up testing at the community level: self-testing, lay/peer testing, de-medicalised testing
Information & knowledge:
– Upscale access to information about HIV for young people in multi-stakeholder education and networking format
– Develop new ways to communicate with children/young people about HIV and their sexual rights (with help of new technologies and social media)
– Develop systems and training to support health professionals to talk about sex & HIV
Access to services:
– Develop social & peer-led services (e.g. mentoring) – focus on support for treatment fatigue, adherence (especially young pregnant women)
– Deliver one-stop-shop sexual health services for young people
– Encourage and support good doctor/patient relationship through training materials
– Advocate for normalising HIV to eliminate stigma and discrimination
– Develop systems to support disclosure with the individual, parents, partners & others
– Enhance open interaction about living with HIV, including parents
– Prevent treatment fatigue by providing support and information
– Improve transition to adult care services – for better retention in care
-Engage young people at the political level to ensure their rights are acknowledged and legislated for
–Challenge laws & barriers that block young people access to prevention, testing and treatment
-Advocate for comprehensive sex education as an essential right for all young people
-Increase collaboration among community partner organisations
Jackie Morton (EATG, UK) presented the outcomes for the 18-50 age group, emphasizing the need for more focus on mental health and the specific needs of key groups who face stigma and discrimination: IDUs, migrants, trans people, sex workers. There are also a number of issues specific to women living with HIV, e.g. pregnancy, motherhood, intimate partner violence. PLHIV in this age group often have to deal with fragmented health and social care systems. Therefore, standards of care, and international guidelines need to be improved. As to Quality of Life, the importance of Patient Reported Outcome Measures (PROMS) that include also lifestyles, family and social circumstances was brought up. Ferdinand de Wit provided a commentary. The recommendations for this age group are as follows:
Co-morbidities: Prevention and Increased screening
Mental health: Integrated models of care
Vulnerable groups: Access to care and human rights issues
Women: Clinical research needs & peer mentors
Information & knowledge: Access to technology and literature
Health systems: Adopt U=U message and report outcomes
Quality of life: Encourage healthier lifestyles
- Challenge policy makers at the highest level
- Challenge and campaign to reduce stigma and discrimination
- Integrated models of care
- Vulnerable groups: Treatment, prevention and human rights issues
- Women: Clinical research needs & peer mentors
- Information & knowledge: Access to technology and literature
- Health systems: Adopt U=U message and report outcomes
- Quality of life: Encourage healthier lifestyles
Questions from the audience:
Q: For the 50+ group, how are retirement homes prepared to welcome PLHIV?
A: Unfortunately, the facilities are often not designed for this group and not prepared to deal with HIV, and the multiple factors related to ageing with HIV. These systems need to adapt.
Q: For children and adolescents, how can they disclose easier, especially around the sensitive period of first sexual encounters?
A: Peer support and sharing experiences with other young people in same situation are very important. One example of a youth organisation working on peer support is Teenergizer in Ukraine. Also health care facilities should have specialized support to help with questions around disclosure.
Highlights from the panel discussion:
Georg Behrens highlighted that the guidelines are important, including the issues mentioned there is the first step, but implementation of the guidelines is also a challenge.
Koen Block mentioned that as the health care systems vary immensely between the different European countries, there are different levels of screening for co-morbidities and also for mental health-related symptoms. A coordinated approach is required, together with a strong support from the community.
Integrated care was discussed and Nikos Dedes highlighted that there are still many research gaps in this area regarding the diverse health care models in Europe. A working model needs to be developed. The current political atmosphere with austerity measures and raising of populism place a threat to the key groups (e.g. migrants) mentioned in these presentations. Another important issue is the generational shift in the HIV physicians, as large numbers of them will be retiring in the coming years.
The mental health topic was brought up by the moderators and Georg Behrens noted that this brings another layer of stigma in addition to HIV. We need a proper assessment of the situation and good examples of integrated care, and how it can be implemented. The focus is now shifting from putting people on treatment to holistic care and the long term effects.
As concluding remarks, Nikos Dedes highlighted that the 90-90-90 targets are no longer enough, that we now need to raise awareness of what it means to live for a long time with HIV and co-morbidities. These issues need to be flagged on national and international levels. Georg Behrens seconded this thought also by adding that the investment made in treatment would not make sense if the quality of life issues are not addressed.
You can access the presentations from this session here