Forty years after the first cases of AIDS, people living with HIV can, thanks to sustainable access to antiretroviral treatment, claim a “normal” life expectancy. We have even now come to view HIV infection as a chronic disease).
However, despite this important paradigm shift, access to treatment, although essential, does not guarantee a return to perfect health. as understood by the World Health Organization (WHO), that is to say “a state of complete physical, mental and social well-being, [qui] does not consist only of the absence of disease or infirmity ”.
People living with HIV remain more vulnerable than average, because of the higher risk they run of developing other diseases, such as cardiovascular disease, diabetes or cancer in particular. This increased risk is directly or indirectly associated with the virus, its treatment, or their socio-economic conditions and / or lifestyle. In addition, these people experience various kinds of HIV-related stigma.
This leads us to go beyond controlling the virus itself, to ensure that those living and aging with HIV maintain a good “quality of life”.
What is “quality of life”?
Behind this somewhat vague term hides a real scientific concept, to which are associated a theoretical framework and very robust methodological and statistical tools.
Quality of life was initially considered primarily as an endpoint, in the context of therapeutic evaluation. As such, “quality of life” has long been understood as “quality of life linked to health”. It is in this perspective that various measurement scales have been constructed and validated.
Things gradually changed in the 1990s. At that time, we began to consider that this essentially “health-related” vision was too reductive. The WHO therefore seeks to propose a definition of quality of life with international roots, going beyond the purely medical prism. In 1994, a new definition of quality of life was adopted. It is now about
“The perception that an individual has of his place in existence, in the context of the culture and value system in which he lives, in relation to his goals, expectations, norms and concerns. It is a broad conceptual field, encompassing in a complex way the physical health of the person, his psychological state, his level of independence, his social relations, his personal beliefs and his relation with the specificities of his environment. “
On this basis, scales were constructed and then validated in order to measure the quality of life, in other words in order to objectify a concept which is by definition subjective. In this sense, this definition is important, because it allows us to think of the quality of life as being not only subjective, but also culturally anchored and dynamic.
Integrate the reality of life contexts into scientific concepts
In the context of research aimed at understanding the effects of therapeutic innovations such as triple therapies or even preventive treatment of HIV (“Pre-Exposure Prophylaxis” or PrEP), recourse to the concept of quality of life appears essential to maintain global approach to people’s experiences.
Indeed, very often the effects of therapeutics are evaluated on purely biomedical dimensions (viral load, CD4 T lymphocyte level, vomiting, muscle fatigue, etc.), or by specifically targeting certain dimensions of mental health such as anxiety-depressive disorders. or sleep disorders, for example. However, none of the conceptual tools available makes it possible to understand the experience of people in the diversity of its dimensions, in the importance that each has for the person.
Only the concept of quality of life allows this, taking into account, for example, the difficulty of getting up in the morning, the occurrence of strange dreams, low self-esteem, lack of desire, little pleasure, lack of difficulty in feeding due to stomach pain, etc. For example, a questionnaire on quality of life makes it possible to explore how the fear of announcing the disease to the partner (s) affects emotional and sexual life, the quality and density of the social and family network, stigma in employment, etc.
It is in this context that the first work on the quality of life of people living with HIV was carried out. Initially associated with research on adherence to treatments when triple therapies were released, quality of life studies have contributed to the transformation of care and the deployment of new research on the subject.
Thanks to them were able to be highlighted the impact of subjective experience undesirable effects on the quality of life, and the importance of go beyond biomedical vision) focused on the severity of symptoms or side effects.
This initial work took place in an environment conducive to understanding the psychosocial issues faced by people living with HIV.
Associations very early on associated with scientific research
First to mobilize and offer support actions (for some from the first half of the 1980s, at a time when responses from the State and the medical community were slow to emerge), associations fighting against HIV have developed real expertise of audiences and their needs and specificities, both globally and locally.
In 1992, they joined research structures such as the National Agency for AIDS and Viral Hepatitis Research, in the form of the inter-associative collective TRT-5 (“Treatment and Therapeutic Research”, 5 because initially founded by 5 associations), whose objective is to “Assert the needs and defend the rights of people infected with HIV”.
This place of collaborators made it possible to deploy adapted and relevant approaches to assess the living conditions beyond the mere taking of the treatment. The associations were able to shed concrete and pragmatic light on the issues facing research, for example by putting their expertise at the service of the creation of dedicated questionnaires, in particular on people’s sexuality.
In this way, relevant questions about the reality of life contexts could be integrated into solid scientific concepts. Their objectification and their integration into longitudinal studies have notably made it possible to scientifically highlight what was experienced in the field by HIV-positive people.
Secondly, the data collected during years of monitoring showed the major impact of psychosocial determinants, more specifically perceived discrimination or some complex relationships with the medical profession.
For example, they revealed that the fact that doctors do not consider the patient’s experience and the discomfort associated with the side effects of treatments has a direct, negative impact on the relationship of trust that is supposed to be established. However, a deterioration of this relationship is not trivial, because confidence is associated with adherence to treatment, that is to say, the ability to take treatment according to medical recommendations.
Take better account of the realities of patients’ lives
Lately, tools for assessing quality of life have started to be used within the framework of the observational research and in routine care. The objective is to better take into account the realities of life and the information reported by the patients themselves at the time of the consultation, which allows a better understanding of the overall health of people living with HIV.
Often, the data used to assess the effectiveness of a treatment focus on results in specific areas such as pain or side effects, for example. The use of the quality of life criterion has shown that the experience of discrimination or relationships with others affects both health and the adverse effects of treatment.
Collecting this data systematically and in a standardized way would allow problems such as depression or social isolation to be detected by caregivers and ideally addressed within the framework of care. Research conducted with other populations (such as the elderly, people suffering from depressive disorders, etc.) thus shows that integrating an assessment of the quality of life into monitoring can lead to improved communication between caregiver and patient).
Data on quality of life from large multidisciplinary studies (for the most recent, co-constructed with the people concerned), have also highlighted the existence of key populations, such as migrants or sex workers. , who are particularly vulnerable in various respects. Data fromRoute survey (a study on HIV, hepatitis B and health in the life courses of sub-Saharan migrants living in Île-de-France), for example, revealed that 58% of sub-Saharan migrants who contracted HIV after their migration were infected during the first 6 years in France.
It is on the basis of this field data, resulting from close partnerships between researchers and the populations concerned, that the expert reports offer clear guidelines on the care of people living with HIV.
Vulnerability factors that increase the degradation of the quality of life
All this knowledge shows that the accumulation of vulnerability factors makes the quality of life of certain sub-populations living with HIV particularly degraded. Certain vulnerability factors are not content to be cumulative, but are exponential, that is to say they interact with each other in order to produce particularly sensitive and complex situations, requiring specific support or support. .
An emblematic example is the case of a trans, migrant woman with no income, who fled her country to escape death, and arrived on French soil without speaking the language. HIV-positive, she was afraid to go to hospitals because she did not have a residence permit. An association of peers was able to meet her, thanks to the people she followed. Mediators speaking her language were then able to discuss with her, and bring her closer to the health system. At the same time, the association supported him in his efforts to obtain a residence permit, accommodation, and training. 5 years later, she has a job, a home, is on antiretroviral treatment and speaks French.
This example illustrates the value of adopting a “Intersectoral”, in other words of cross different characteristics of populations such as gender, socio-economic situation, administrative status, place of life, etc. to better understand how vulnerabilities interact with each other, and to provide appropriate care for people living with HIV.
This article was written in collaboration with Diane Leriche, coordinator of TRT5-CHV, and Hélène Meunier, health mediator within the ENVIE association in Montpellier and independent member of TRT5-CHV