Times are a CHANGE-ing: Improving the lives of people aging with HIV

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Hannah Branch
An older person enjoying a cup of tea
Thanks to ART, people with HIV are living longer than ever before. CTN 314: CHANGE HIV prioritized research to support the happiness, health, and wellbeing of this population.

After five years, the CHANGE HIV study (CTN 314) has drawn to a close, producing a wealth of insightful results to help us better understand exactly what it’s like aging with HIV.
 
Led by CTN+ National Co-Director, Dr. Sharon Walmsley, CHANGE HIV took a deep dive into the physical, mental, cognitive, and social aspects of health and how they interact to affect the wellbeing of people aging with HIV in Canada; a cohort that is ever-growing thanks to the great successes of antiretroviral therapy (ART).
 
“We don’t want to just look at the infection or the clinical issues, such as cardiovascular risk or diabetes. We want to look at the whole person, so we are collecting data on quality of life, loneliness, contributions to society, food security, income… You name it, we’re collecting it,” explained CHANGE HIV project manager Rosie Clarke during the launch of the project.
 
CHANGE HIV was the first Canadian cohort study of people living with HIV aged 65 and older, and represented that largest cohort of HIV and aging in the country. A total of 551 people participated in the study, of whom 13 were aged 85 and over. Not only is this testament to the excellent clinical care and research ongoing in Canada, but also the inspirational resilience and advocacy displayed among members of the HIV community.

Early findings

In 2023, the CHANGE HIV study team presented preliminary results from the first 353 participants. Through self-reporting, questionnaires, objective measures, and biomarkers, the team evaluated health across seven domains: chronic disease, mental health, pain, social support, quality of life, cognitive function, and physical function.
 
Among the participants, most identified as male (91%) and white (79% men, 53% women). Compared to the participating women, the men reported a higher level of education and income, and were more commonly in a relationship. Participating women reported higher rates of divorce/separation, being widowed, and more commonly lived alone and experienced financial insecurities.

A definition of the Fried Frailty Phenotype is a clinical framework that assesses level of frailty based on several criteria

More than 90% of the cohort reported comorbidities, with the most common being high cholesterol and high blood pressure. Additional research revealed that 78% had multi-morbidity (two or more comorbidities), which was associated with lower health-related quality of life. Finally, using the Fried Frailty Phenotype, around 80% of men and 65% of women were classified as pre-frail or frail.
 
Speaking to Medpage Today, Co-Lead of the CTN+ Treatment and Management Think Tank, Dr. Alice Zhabokritsky, said “The preliminary results from the CHANGE HIV study identified important vulnerabilities among people aging with HIV in Canada, including fragile social structures, financial insecurity, and high prevalence of frailty and pre-frailty, which may have significant downstream effects on the healthcare system within the next decade, including long-term-care homes.”
 
Dr. Zhabokritsky completed a postdoctoral fellowship at the CTN+, where her project was embedded in the CHANGE HIV cohort study. She worked towards validating the Healthy Aging Score, a measurement tool that is used to distinguish who is and who is not aging well. The Healthy Aging Tool was used throughout CHANGE HIV to facilitate the evaluation of multiple study results.

A closer look at frailty

Definition of nadir CD4 count – someone’s lowest recorded CD4 count

Building on their research, in 2024, the CHANGE HIV team took a deeper dive into the prevalence and predictors of frailty among 439 participants. Frailty is a common issue among older generations and can increase the risk of falls, cognitive impairment, and mortality. It often affects people living with HIV at a younger age, so identifying ways to detect, measure, and prevent frailty could help improve their quality of life in the long term.

The researchers determined that 17% of participants were classified as frail, compared with roughly 10% of the general Canadian population of comparable age. It was expected that a lower nadir CD4 count may be associated with this increased likelihood of frailty; however, that was not observed. Instead, the researchers determined that frailty was more likely among those not in a relationship and who felt lonely.

“Among the HIV community, many long-term survivors lost loved ones during the early days of the epidemic, before ART was readily available,” said Dr. Walmsley. “This loss can have an impact on the rest of their lives, and how and where they age with HIV.”
 
With 65% of this study’s participants identifying as single, divorced, or widowed, providing appropriate support to help alleviate loneliness is crucial. “This would allow people to age safely in their own homes and create opportunities to make supportive housing and long-term care facilities available and inclusive for persons living with HIV,” wrote the study authors.

From social to medical

People aging with HIV often experience more comorbidities than the general population. This may be due to chronic inflammation, coinfections, and exposure to ARTs. These comorbidities typically need to be treated with multiple medications (polypharmacy), which may be prescribed, over the counter, or ‘natural’. In light of this, the CHANGE HIV team collaborated with 440 people living with HIV to determine if polypharmacy could also be associated with frailty and falls.

Definition of anticholinergic and sedative burden

Of the study participants, around 16% were classified as frail and over 20% had taken a fall in the previous six months. Notably, almost 54% of participants had polypharmacy, 49% used at least one potentially inappropriate medication (PIM), 16% had high anticholinergic burden, and 56% had high sedative burden. Anticholinergics are a class of medications that are used to treat respiratory conditions, bladder control, nausea and diarrhea and cramps; however, because they inhibit parts of the nervous system, they can also increase the risk of falls.
 
The study results suggested that the risk of frailty was around three times higher among those with high sedative or anticholinergic burden, as well as among those with severe polypharmacy. In addition, the risk of falls was increased almost two-fold among participants with a high sedative burden or with one or more PIMs.
 
Dr. Zhabokritsky will soon be embarking on CTNS 056: Co-Designing a Deprescribing Program to Manage Polypharmacy and PIMs in older adults living with HIV, which will dive deeper into this important topic.

Influencing positive change

The advances in HIV treatment, specifically ART, have transformed the HIV space. People living with HIV are now able to enjoy life well into old age. However, with aging comes new health issues and an increased chance of loneliness, with loved ones being lost along the way.
 
“The hard work of researchers, care providers, community, and pharmaceutical companies have brought us to this amazing time where people living with HIV can enjoy a long and happy life,” said Dr. Walmsley. “Now, it’s time to shift some of our focus to ensure that not only is their life long, but it’s healthy in every sense of the word.”
 
CHANGE HIV has been so important for highlighting how instrumental social and medical influences are in the long-term health and wellbeing of people aging with HIV. The results will guide decisions made by community organizations, health care providers, and other decision makers, and inform new interventional research to address the identified issues. How can we build meaningful social connections and combat loneliness among people living with HIV? How can we treat comorbidities without increasing the risk of other issues? How can we ensure people living with HIV are able to access affirming, holistic care at all stages of life?
 
To find out more about CHANGE HIV, visit https://www.changehivstudy.com/.

Ms. Hannah Branch joined the communications department in the fall of 2019. She holds a degree in Human Biology from the University of Birmingham and has over 14 years’ experience working in science and health. Starting her career as commissioning editor of two medical journals, Hannah has since worked in other medical communications and PR roles, developing training materials and campaigns across a variety of health care areas.

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