Highly effective antiretroviral combination therapy (ART) has transformed HIV infection from a condition associated with a substantially shortened life expectancy into a manageable chronic disease. Simultaneously, the demographics of HIV infections have changed. Fewer individuals are acquiring HIV as awareness has increased, and effective prevention with HIV preexposure prophylaxis has become available. Meanwhile, individuals with HIV receiving ART are living to older ages despite age-related and HIV-associated comorbidities.

These advances in treatment are changing the need for targeted medical care in this population. This shift is already evident. Individuals with HIV aged 50 years or older are commonly described as “aging with HIV.” Highly developed countries account for 20%-50% of individuals with HIV, and estimates suggest that this proportion will exceed 70% by 2030.

The clinical management of HIV becomes more complex with advancing age. HIV increases the risk for age-related comorbidities, primarily because of chronic systemic inflammation associated with the infection, sometimes referred to as “inflammaging.” Common comorbidities include cardiovascular disease, chronic kidney disease, cancer, metabolic disorders, and mental and cognitive disorders. Simultaneously, advances in HIV treatment have opened new possibilities for individuals with HIV, including the prospect of a functional cure.

Health and Aging

How do individuals with HIV perceive the specific challenges of aging with chronic illness? What are their needs and concerns, and how can treating physicians best support them? Few studies have examined how individuals with HIV perceive their own aging and health, including their “mental models” of the process. Such knowledge can help inform shared decision-making.

Over the past 2 years, researchers in Sweden have explored these questions in two studies. A scoping review examined self-perceptions of quality of life and health-related needs among individuals with HIV greater than 60 years. To ensure comparability, the scoping review was limited to studies from the EU, Norway, Iceland, the UK, the US, Canada, Australia, and New Zealand. These regions have a particularly high proportion of older individuals with HIV, and almost all individuals with HIV receive ART.

The 110 studies included in the scoping review yielded several important results. More than half of the studied population reported physical and geriatric symptoms that affected their quality of life. Individuals with HIV had a greater burden of cognitive, neuropsychological, and psychiatric problems than healthy older individuals. Physical complaints included incontinence, pre-frailty, impaired vision and hearing, balance problems, and slow gait. With increasing age, the risk for cognitive and neuropsychological impairment also increased, including HIV associated with neurocognitive disorders.

The prevalence of age-related comorbidities also increased with age among individuals with HIV. Some findings related to mental health were less than expected. Depression and anxiety disorders were less common among individuals aged 60 years or older than among younger individuals with HIV. Although about half reported loneliness, this proportion was lower than that among younger adults with HIV.

Personalized Treatment

Another small qualitative study by the same researchers included 22 individuals with HIV in Sweden, including 14 men and 8 women, with a mean age of 75 years and duration of HIV infection ranging from 2 to 30 years. The researchers identified four main themes: access to healthcare, involvement in care and shared decision-making, trust and confidentiality, and experiences of stigma in interactions with healthcare facilities.

Participants described the Swedish healthcare system as providing good care, particularly in specialized facilities. However, they also reported difficulties resulting from a lack of coordination between primary care and specialized clinics. Managing care across multiple facilities could be challenging for older individuals and sometimes required a great deal of personal effort.

Participants generally felt well cared for in specialized treatment centers and received good personal attention. They particularly appreciated being involved in treatment decisions and felt relieved when the therapies proved successful. Participants wanted to be viewed and treated in other healthcare facilities, as they were in specialized centers, as individuals with a condition requiring personalized treatment. Key concerns during consultations with treating physicians included uncertainty about whether certain symptoms were related to HIV or aging and fear that cognitive decline could eventually make it difficult to manage their medications independently.

Trust and Confidentiality

Trust and confidentiality were particularly important. Many participants considered it difficult to avoid disclosing their HIV status when interacting with healthcare facilities. Others stated that they generally voluntarily disclosed their HIV status, particularly to protect others from the potential risk for transmission.

At the same time, participants feared that the healthcare staff might not maintain the confidentiality of the diagnosis. This concern could discourage some individuals from seeking important medical tests, particularly when they are aware of individuals working in the healthcare system in small rural communities.

Experiences of stigma from healthcare providers varied among participants. Individuals diagnosed with HIV many years earlier reported that the acceptance and perceptions of individuals with HIV had improved over time. However, previous experiences of stigma can shape the expectation that similar experiences might occur again. Prejudice and misconceptions regarding HIV have not been completely eliminated. Participants also perceived fears among healthcare professionals, which were reflected, for example, in particularly cautious approaches to treatment.

Biomedical Reality

Because the study included a small number of participants and focused specifically on the Swedish healthcare system, the findings cannot be generalized. However, the authors suggested that individuals with HIV in countries with well-developed healthcare systems may have similar experiences of aging, including a desire for autonomy, accurate information, involvement in treatment decisions, and freedom from stigma.

Similar findings emerged from another small study of 25 individuals with HIV aged 50 years or older in the US that also used semistructured interviews. The study authors found that specialized HIV treatment centers played an important role in fostering trust, optimism, and well-being, with participants describing these clinics as “safe places.” The participants also expressed concerns about how HIV might progress with age. HIV-associated signs of aging cannot always be attributed solely to HIV. One 82-year-old study participant stated, “HIV is the least of my problems.”

According to the authors, this discrepancy is partly attributable to the success of ART, which has led many individuals with HIV to feel that they have overcome their illness after achieving viral suppression.

Further Research

Although these initial studies provide valuable information about how older individuals with HIV perceive their health and aging, much remains unknown regarding their needs and preferences. Gender-specific differences among older individuals with HIV remain underrepresented in the literature. Most existing studies, which are limited in number, have focused on younger populations. Nevertheless, these studies have identified differences between men and women in satisfaction with care, stigma, and subjective experiences of HIV.

Research is also lacking in countries where timely HIV diagnosis and continuous treatment are not guaranteed and where HIV remains associated with severe stigma. A structured study of the experiences of migrants with HIV who were diagnosed in their countries of origin could provide additional insights.

Nevertheless, the existing evidence offers some potential guidance for clinical practice. The authors of a Swedish review suggested that clinicians could benefit from training on mental models of aging in the context of chronic diseases. They also suggested asking younger individuals with HIV whether they had access to social support if needed. Such discussions may help identify individuals who could require additional resources in the future to maintain an independent and self-determined life while aging with HIV infection.

US researchers emphasized the importance of providing individuals with HIV with a more precise and nuanced understanding of the long-term consequences and progression of HIV. Ideally, these discussions should be patient-centered and incorporate shared decision-making about preventive screening, proactive management of comorbidities, and future care planning.

Barbara Zenz is a physician and medical journalist based in Paris, France. She specializes in infectious diseases, epidemiology, vaccine development, and public health and covers scientific and medical advances.

This story was translated from Univadis Germany, part of the Medscape Professional Network.