23 Jul 2019

Webinar on Defining and Measuring Quality of Life for People Living with HIV: Summary, recording and presentations available

The Global Network of People Living with HIV (GNP+), Frontline AIDS, UNAIDS and the World Health Organization co-hosted a webinar on Defining and Measuring Quality of Life for People Living with HIV on 2 July 2019.

For those who were not able to join the webinar, the recording  and the presentation slides are available here.

One of the most critical lessons coming out of global HIV movement is that we are “people” first, and just like any other human being, the spectrum of needs of people living with HIV is wide and complex. Focusing solely on a single dimension of our lives, such as only using biomedical approach, does not work. Addressing these needs comprehensively, both health-related and non-health related, is critical as how we live with the virus is determined by how we live our life overall.

The webinar facilitated an exchange of ideas on how to measure community-led interventions that improve the quality of life of people living with HIV and outlined the various methods for measuring the outcomes and impacts of community-led interventions that address integrated, person-centred approaches to improving quality of life.

Webinar speakers were:

  • Rico Gustav, Executive Director of GNP+
  • Huidrom Rosenara, Associate Director: Care & Support, Alliance India
  • Maximina Jokonya, Counsellor, Africaid-Zvandiri
  • Andy Seale, World Health Organization Technical Advisor
  • Laurel Sprague, UNAIDS, Special Advisor, Community Mobilisation
  • Kevin Moody, Consultant for GNP+

Quality of life is an essential issue for people living with HIV. It affects their ability to enter and stay within the continuum of care and, ultimately, become and remain virally suppressed. However, quality of life is person-dependent and means different things to different people. Quality of life comprises three core components: prevention, care, support and treatment for HIV; prevention, care support and treatment for non-HIV-specific physical and mental health issues; and, well-being and wider social, cultural and economic rights.[i]

Positive Health Dignity and Prevention[ii]presents a comprehensive framework for addressing the needs of people living with HIV in communities, which pre-dates the sustainable development goals, illustrates that health and wellness sit within a larger political, socio-economic and cultural context, in a similar way.[iii]

Initiatives have begun to address the issue of quality of life for people living with HIV:

  • At the global level, the UNAIDS Fast-Track Cities initiative is conducting an online survey of the quality of life of people living with HIV[iv].
  • At the European level, HIV Outcomes has developed recommendations to the European Parliament that include finding innovative approaches to service delivery; increased measurement of quality of life; funding for studies to generate data to support interventions; reduced stigma and discrimination and, community involvement.[v]
  • At the service delivery level, healthcare providers are finding innovative ways to integrate services and move away from siloes; implement person-centred solutions; promote early detection of co-morbidities; increase linkages to prevention, etc. Examples include the user-driven HIV clinic at Sørlandet Hospital, Kristiansand, Norway[vi], Vihaan from Alliance India[vii], 56 Dean Street London[viii], Ward 86 San Francisco[ix]and Happi App and Value-based healthcare Amsterdam[x].

However, what is missing is an investment case for community-led interventions that improve the quality of life of people living with HIV. While it is important for clinical work to continue to build evidence surrounding the screening, prevention and treatment of co-morbidities, it is essential that donors, governments and communities see that community-led interventions on pre-clinical and non-clinical domains that affect health and wellbeing is essential to improve the quality of life of people living with HIV.

As the conversations about Universal Health Coverage continue, we must start from the perspective that health is not a commodity and that it is much more than just condoms and pills. As people living with HIV, we have had to fight every step of the way to access treatment and stay alive. But this is not enough – those of us lucky to be alive expect much more. We want well-being, dignity and quality of life. We demand you put into practice the tenet that “health is not merely the absence of disease, it is the state of complete physical, mental, and social well-being”. Although promotive and preventive services are included in the definition of UHC, most efforts and resources to date do not prioritise this. To ensure social and health protection for communities that have been neglected and ignored for decades, if not centuries, we know that we need to go beyond health and make progress on education, gender equality, safety and other critical priorities.

We cannot limit the UHC conversations to a conversation about the economy, about health systems, or health insurance. Health is a right. Because it is a right, we need to start talking not only about health systems, but systems for health. Systems that put the last mile first and that meet the needs of the most marginalised will be ready to meet the needs of others. We know from experience that it does not work the other way around. This is not only about mortality but also about quality of lives, as Rico Gustav, GNP+ Executive Director outlined in his keynote address for the 44th UNAIDS PCB Thematic Segment on UHC. We cannot limit the UHC conversations to a conversation about the economy, about health systems, or health insurance. Health is a right. Because it is a right, we need to start talking not only about health systems, but systems for health.

We need to build a comprehensive theory of change model that describes the relationships between and among health-related and non-health-related domains that affect quality of life. Currently, these are seen as separate areas and are being dealt with and funded as discreet entities. We need to bring it all together in order to measure the cause and effect of interventions and to validate (or not) underlying assumptions and evidence of those relationships.

The webinar included case study examples of the impact and power of community-led responses as seen in the Vihaan project led by Alliance India and the Community Adolescent Treatment Supporters (CATS), as operationalised through Africaid-Zvandiri. Huidrom Rosenara described how the Vihaan project coordinates with nearby ART Centres and provide access to person-centric care and support services through community-led and technology-based outreach approach.

The centres track and bring people back to the continuum of care with help from the tablet-based mPower tool. They provide referral to health and non-health services, including TB co-infection, peer support and community services. Maximina Jokonya spoke about how Community Adolescent Treatment Supporters (CATS) work closely with adolescents living with HIV and provide peer support for: information, counselling, monitoring, support, referral and follow up. This has resulted in improved: adherence, viral suppression, retention in care, mental health, sexual and reproductive health and rights, protection and prevention.

Andy Seale of WHO spoke about the link between quality of services and quality of life, showing that improvements in one can positively affect the other. He recognised that quality of life needs to be addressed holistically, beyond HIV and across health, including mental health, chronic diseases, etc. In fact, it needs to be seen through a lens beyond the health sector and consider the individual, community and an enabling environment. WHO is approaching Universal Health Coverage from a quality perspective, ensuring that quality if central to service provision, which need to be effective, safe and people-centred.

Laurel Sprague of UNAIDS spoke specifically on community-led responses. She indicated that it will not be possible to improve the quality of life of people living with HIV – or, indeed to achieve many of the SDG goals – without investing in and following the leadership of people living with HIV and those most affected by HIV. To track community-led responses, we need to be able to define and measure what this means. UNAIDS is working with global networks to do define and measure the community-led response. More on this will be shared in the coming months.

Moving forward, we call for the creation of a Technical Working Group to develop a systems-level theory of change model to address the health and non-health-related domains that affect the quality of life of people living with HIV. More information on the formation of the Technical Working Group will be shared in the coming weeks.

For those who were not able to join the webinar, the recording  and the presentation slides are available here.

[i]https://frontlineaids.org/wp-content/uploads/2019/02/quality_of_life_briefing_final_original.pdf

[ii]https://www.gnpplus.net/assets/wbb_file_updown/2090/GNP_PHDP_ENG_V4ia_2.pdf

[iii]http://www.unaids.org/en/AIDS_SDGs

[iv]http://www.fast-trackcities.org/survey/index.php/649523

[v]http://hivoutcomes.eu/recommendations/

[vi]https://www.sciencedirect.com/science/article/pii/S1055329015001466?via%3Dihub

[vii]http://www.allianceindia.org/our-work/vihaan/

[viii]56 Dean Street, London, UK, http://dean.st

[ix]Ward 86, Zuckerberg San Francisco General Hospital, USA, https://zuckerbergsanfranciscogeneral.org/find-care/hivaids/

[x]Happi App and Value-based healthcare, https://happiapp.nl/en

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