HIV: Treating 'Symptom Clusters' Could Help Improve QOL

Damian McNamara, MA

November 21, 2022

TAMPA, Florida — People living with HIV experience many symptoms that can be grouped into "clusters" to help guide therapy and ideally treat more than one symptom at a time in an effort to improve quality of life, according to a study presented here at the Association of Nurses in AIDS Care (ANAC) 2022 Annual Meeting.

Evidence suggests there are four main symptom clusters: pain, body psychological, gastrointestinal, and body image. Interestingly, these symptoms were more common among people living with HIV who are older than 45 years vs those who are younger, with one exception.

"In HIV, with exception of anxiety, we saw older people had more symptoms than younger ones," said Natalie Wilson, PhD, assistant professor of community health systems at the UCSF School of Nursing in San Francisco.

Wilson and colleagues performed a study that also suggests the older group experienced more distress from their symptoms than the younger cohort, again with the exception of anxiety.

Symptom clusters are two or more related symptoms that occur together with or without the same etiology. "Imagine you can't sleep and the next day you're tired and have no energy, you have trouble remembering someone's name...and then the next night you get so anxious about not getting sleep that it keeps you from sleeping." That's an example of a symptom cluster, Wilson said.

A High Burden

"Why should we even evaluate symptom clusters?" Wilson asked. "The symptom burden is still high in people living with HIV. The medications got better but the symptoms remain."

A high symptom burden also is linked to lower adherence to antiretrovirals. Also, considering groups of symptoms together could lead to targeted interventions that treat multiple symptoms, she said, "instead of treating one symptom at a time and increasing the pill burden for people living with HIV."

Accelerated Aging Concerns

In addition, people living with HIV can experience accelerated aging, which is one reason Wilson and colleagues chose the 45-year-old cutoff in the study. Living with inflammation from HIV and the toxicity of earlier treatments likely contribute, she said.

"Those over age 45 have higher rates of age-associated noncommunicable comorbidities developing at an earlier age than uninfected people with comparable lifestyles and demographics," Wilson said.

In the full study, previously published in The Journal of Pain and Symptom Management, a total 2000 people living with HIV completed the 20-item HIV Symptom Index. The participants reported their symptoms on their first visit to one of six national HIV Centers of Excellence. People were asked to report presence or absence of a particular symptom, and if they had it, how distressing it was on a scale of 1 "doesn't bother me" to 4 "bothers me a lot."

Younger people not only reported more anxiety but were also more distressed by it, Wilson said. The older group was more likely to be distressed by muscle aches and joint pain, trouble remembering things, and more.

The mean age in the younger group was 35 years, and it was 55 years in the older group. A total of 86% in the younger group and 87% in the older were men, and there were some differences by race, Wilson said.

More Research Needed

"These findings warrant further confirmation," Wilson added. Future work could evaluate whether symptom clusters share etiology and how symptom clusters change over time. "We need to look at outcomes over time. Can we predict poorer outcomes, such as cardiac events, over time based on symptom clusters?"

Also, as part of HIV treatment success in recent years, "Our guidelines are moving people out further — if you're undetectable sometimes you can come back at 6 months or 1 year." The question, she said, is then: "Do we need to watch people with certain symptom clusters more closely?"

Limitations of the study include a lack of information on symptom causes and severity and its cross-sectional design.

'Absolutely Useful'

The study is "absolutely useful," said session moderator Cheryl Netherly, an HIV nurse and clinical educator for CAN Community Health headquartered in Sarasota, Florida.

"One of the things that she mentioned was people with HIV, especially long-term HIV, they're aging faster than the population without HIV. So, that is really important to look at."

People living with HIV and dying from age-related comorbidities is something "we never thought would happen," Netherly said. "Unfortunately, we're now losing them to the different things like kidney issues, heart disease, and diabetes."

The study was funded by the National Institute of Allergy and Infectious Diseases (NIAID). Wilson and Netherly have disclosed no relevant financial relationships.

Association of Nurses in AIDS Care (ANAC) 2022 Annual Meeting: Abstract A-1. Presented November 18, 2022.

Damian McNamara is a staff journalist based in Miami, Florida. He covers a wide range of medical specialties, including infectious diseases, gastroenterology, and critical care. Follow Damian on Twitter: @MedReporter. For more news, follow Medscape on Facebook, Twitter, Instagram, and YouTube.

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