A Dutch study presented at the 20^th European AIDS Conference (EACS 2025) in Paris compared the health-related quality of life (HRQoL) in around 500 older people with HIV with the same number of carefully matched people without HIV for the last decade.

It found that although the people with HIV reported consistently lower quality of life as measured by a 36-point questionnaire, the difference was very slight and unlikely to be of clinical significance. There was also no decline seen in HRQoL in participants, regardless of HIV status, between their first assessment and their last, eight years later. (On average, they aged from 52-53 to 60-61 during that time.)

However, study participants also completed a questionnaire that asked about symptoms of depression. This found significantly more experience of depression among the HIV-positive participants than the HIV-negative ones, to the extent that the positive ones significantly exceeded the threshold score that would suggest clinical depression (16 points out of a maximum of 60). The HIV-negative participants did not.

Kevin Moody of the University of Amsterdam Medical Centre reminded the conference that quality of life has been defined as ‘the fourth 95’ in terms of measuring the health of people with HIV, implying that achieving the other three – 95% of people knowing their HIV status, being on antiretroviral therapy (ART) and achieving viral suppression – were not enough to meet the World Health Organization’s broad definition of health. Health-related quality of life does not focus on diagnosable conditions or symptoms, but rather the degree to which they affect a person’s ability to lead a comfortable and fulfilling life.

The study’s primary aim was to measure changes in HRQoL over time in “well-treated, ageing people with HIV” compared to similar people without HIV.

Various questionnaires have been devised as instruments to measure HRQoL, with the SF-36 questionnaire one of the most widely used in HIV research, as it was in this study. This contains 36 questions that ask about the degree to which physical and emotional symptoms impair a person’s quality of life. A maximum score of 100 implies the best possible quality of life.

A secondary aim was to ask about symptoms of depression. To do this Moody used a different questionnaire called CES-D which asks 20 questions about physical and emotional symptoms suggestive of depression. In this case, zero implies no sign of depression while the maximum score, implying severe depression, is 60. A score of 16 or more is regarded as indicator of depression. (Note that CES-D is a screening tool, not a diagnostic one: further investigations are needed to establish a clinical diagnosis.)

The study

The AGEhIV cohort study recruited its HIV-positive participants between 2010 and 2012 from people then aged 45 or older attending HIV clinics. It did not compare them with the general population. Instead, it matched them with HIV-negative people also attending healthcare facilities, especially sexual health clinics, who had similar characteristics. For instance, 77% of the HIV-positive participants and 70% of the HIV-negative ones were gay or bisexual men. Ten per cent and 16%, respectively, were women, and 27% versus 19% were not born in the Netherlands.

Participants completed the SF-36 and CES-D questionnaires at baseline and two, four and eight years after baseline (with the CES-D also completed at year six). Participants had to complete at least one more of both surveys, in addition to the baseline ones, to be in the data set: 522 people with HIV and 532 HIV-negative people were included. The HIV-positive participants also needed to be on ART and have a viral load below 200 to be included.

At baseline, non-infectious co-morbidities (health conditions) were measured in all participants: these included diabetes, osteoporosis, obesity, chronic kidney disease and various indicators of cardiovascular health including high blood pressure. The CD4 count of the HIV-positive participants was also measured (average: 570). One-third of them had previously had an AIDS-defining condition. 

At baseline, fewer HIV-positive participants had zero co-morbidities, compared to the HIV-negative ones (47% versus 62%), and more had two or more co-morbidities (20.5% versus 8%). The SF-36 scores were adjusted for these conditions as well as for socio-economic status and lifestyle factors such as relationship status and drug use. This was to try to establish whether variance in HRQoL could be confidently related to HIV status, rather than to any other health factor.

Results

Over the eight years, the people with HIV had consistently lower HRQoL scores – two points lower for activities that were related to physical symptoms such as pain and tolerance of exercise, and one point lower for mental tasks such as concentration and mood.

These differences were statistically significant – but they were slight and, Moody said, “of questionable clinical relevance”.

One piece of good news is that the HRQoL scores hardly changed over the eight years of the study, despite participants getting older: the physical component scores dropped by one point only for participants, regardless of HIV status, and the mental component scores not at all.

There was a different story when it came to symptoms of depression. These did not change over the course of the study, but the average score for the HIV-positive participants (roughly 22.4) was significantly greater than for the HIV-negative ones (16.4). Given that the score regarded as indicative of depression is 16 out of a maximum of 60, this shows that while the average score for HIV-negative participants was only just over that threshold, the average for HIV-positive participants was significantly so, implying that the majority might be suffering from at least mild, but long-term, depression.

Kevin Moody commented: “Participants with HIV were consistently about 50% more likely to report clinically relevant depressive symptoms.”

Interpretation

How do we explain this discrepancy between symptoms that one might expect would negatively impact quality of life, and the fact that the quality of life experienced was only slightly impacted by having HIV, and did not get worse? 

One interpretation is that the SF-36 questionnaire is not well suited to measuring the quality of life of people with HIV when most, these days, have their HIV well controlled.

Kevin Moody comments: “SF-36 was devised [in the 1990s] at a time when fewer people with HIV were on ART and, if they were, might also be suffering from drug-related side effects. It lays a lot of emphasis on symptoms like pain, because a lot of people had neuropathy. 

“It’s also important to note that it was developed for research and cohort purposes and not clinical assessment. It’s widely used in HIV research and development for outcome measures but may be of limited clinical relevance in the consulting room.

“Rather than relying solely on general HRQoL measures, targeted screening for specific mental health conditions, such as depression, may be more important for addressing psychological distress.”

Another interpretation might be that while CES-D reports symptoms, SF-36 reports functioning, implying that people with HIV learn to soldier on through life despite experiencing a consistently greater burden of negative emotions. “In other word,” says Moody, “that there is some sort of adaptability or resilience happening in people with HIV.”

“The good news,” he adds, is that “there is no indication from this survey – at least in a largely White, urban population with good access to health care – that quality of life of people with HIV diminishes faster than that of people without it.”

Reference

Moody KG et al. Health-related quality of life in ageing people with HIV is not different to that of well-matched controls without HIV: an 8-year longitudinal analysis from the AGE_hIV cohort study on ageing and comorbidities. 20^th European AIDS Conference, Paris, abstract O1.7, 2025.