Fatigue is the most frequent symptom that people with HIV experience -- including those who are on antiretroviral therapy (ART) and virally suppressed.
Last week, nurses gathered in Portland, Oregon, at the Association of Nurses in AIDS Care (ANAC) conference to share new research, insights, and best practices for helping patients cope with this complex and often frustrating symptom.
People with HIV experience fatigue more often than those without because the virus zaps the body's energy, explained Joachim Voss, Ph.D., RN, ACRN, FAAN.
"Once the virus infects the immune system, you basically have a non-stop flu reaction," said Voss, who was honored as Researcher of the Year by the peer-reviewed Journal of the Association of Nurses in AIDS Care at ANAC 2019 because of his research on fatigue and HIV.
Voss explained that with a typical viral infection, the appropriate course of action would be to rest. But not so with HIV.
"The more you become inactive," he said, "the more the fatigue takes over."
This negative feedback loop was described as "deconditioning" by Joseph Perazzo, Ph.D., RN, ACRN, assistant professor of nursing at the University of Cincinnati.
At ANAC, Perazzo presented a poster on deconditioning titled, "Diminished Functional Capacity in People Living With HIV." As part of his research, Perazzo studied 100 patients, approximately half living with HIV and half without, matching their demographics.
He asked the patients to walk for six minutes to evaluate their VO2 levels -- a measure of how well oxygen is circulating through the blood, and a proxy for overall fitness.
Ultimately, he found "the VO2 peak in the HIV-negative population was higher, and therefore better, than the people who had HIV," meaning people without HIV had better "functional capacity."
Perazzo noted there are different ways to interpret his results.
It could be that "people with HIV -- in order to get the health benefits of exercise -- may need a greater level of engagement … they may need to engage a little bit more, with a little bit more regularity, or they may need to engage at a little higher intensity in order to gain the same benefit as someone who is a matched person without HIV."
Put simply, people with HIV may need to exercise more to achieve the same results. But asking people with HIV to exercise regularly is difficult, because fatigue manifests in a variety of different ways -- including mental health.
"Even though HIV itself does not go in and affect the brain, some of the inflammatory mediators create cerebral inflammation, and that could be creating depressive symptoms," Perazzo said.
Stress, anxiety, and depression can negatively impact the immune system, further accelerating the negative cycle of HIV and fatigue.
The challenge for nurses is to help their patients move past these biological barriers to stay active. At ANAC, a late-breaking abstract demonstrated a proof of concept for a mobile app that can help patients cope with fatigue by directly addressing the stress in their lives.
The abstract, called "A Feasibility Study to Develop and Test a Cognitive Behavioral Stress Management Mobile Health Application for HIV-Related Fatigue," was presented by ANAC board member Julie Barroso, Ph.D., RN, FAAN, associate dean for faculty at the Medical University of South Carolina.
Fatigue is an "etiological path that follows psychological routes," said Barroso. "Stressful life events predict increased fatigue and decreased adherence."
Though promising, Barroso's research is in its early stages. It could be that one day, clinicians can recommend app-based approaches that can help patients manage their fatigue.
But for now, nurses on the front lines say the best approach is to help patients get out of the house by finding a physical activity they actually enjoy.
Voss says he has had a lot of success recommending mall-walking clubs -- particularly for patients who live in unsafe neighborhoods where walking or jogging outdoors is not possible.
"Almost every mall allows this," Voss said. "They open up at 7 a.m. to the elderly and anyone else who wants to do four or five rounds through the mall. It's physical activity in a safer space."
When it comes to fatigue, Voss said that the most important question an HIV nurse can ask is, "How can we help people step out of their self-perpetuating cycles?"