Fatigue chief complaint? A surprising explanation
Fatigue is such a common complaint among HIV patients that it's often ignored or expected in clinical care.
Now an HIV researcher has found a correlation between fatigue and psychosocial problems, and she's working on an intervention to address this issue.
"I've been working with HIV patients for many years, and their number one complaint was being fatigued," says Julie Barroso, PhD, ANP, APRN, BC, FAAN, an associate professor and research development coordinator in the office of research affairs at Duke University School of Nursing in Durham, NC.
Barroso would suggest strategies to help reduce patients' fatigue, but made little progress, so she decided to conduct a series of pilot studies to get a sense of what their fatigue was about and how it impacted their daily lives.
"This work helped me develop an HIV-related fatigue scale so we could better measure fatigue," Barroso says.
The scale measures the intensity of fatigue, the circumstances surrounding fatigue, and the consequences of fatigue.
"There are people who are very fatigued and somehow get through their day," Barroso explains. "And then there are some people who are so fatigued they can't do anything."
For example, one woman told Barroso that she couldn't even stand in front of the dryer to fold clothing, and another man talked about not being able to take his grandchild to the park anymore.
"Fatigue is so much more than being tired," Barroso says. "We're all tired — it's a state of life for all of us these days, but this is profound fatigue, and it impacts the state of their lives."
It's a frustrating symptom from a clinician's perspective because its cause is elusive, and there are no proven effective treatments, she adds.
But there now are some answers, and there might be an intervention available once Barroso concludes her research.
"We've gotten a five-year grant through the National Institutes of Health (NIH) Institute of Nursing Research to look at a large number of variables to see what predicts fatigue," Barroso says.
Investigators followed patients to the Duke General Clinical Research Center (GCRC) and collected data about their fatigue and variables that could impact it.
"They were able to come here every six months for three years," Barroso says. "We finished data collection last April, and we're currently analyzing data."
An early look at the first year's results has some surprises, she notes.
HIV patients' CD4 cell counts, viral loads, and even whether or not they are taking antiretroviral therapy (ART) have not predicted fatigue, Barroso says.
"Fatigue is listed as a prominent side effect for nearly every ART," Barroso says. "You may think they're fatigued because they're on the drugs, and there are people who believe the medications are making them sick."
But investigators found no relationship between being on ART and experiencing fatigue. Both patients who are on ART and those who are not taking HIV medications experience fatigue at the same rate, Barroso says.
"We looked at all kinds of demographics, including employment rate, education level, who they lived with, HIV-related variables, any illnesses, and a huge number of physiological variables," she says. "With physiological, we looked at hepatic function, thyroid function, anemia, testosterone, everything."
Investigators also looked at psychosocial indicators, including depression, anxiety, social support, adult and childhood trauma, life stress events, and both daytime sleeping and night-time sleep quality.
"The only things that predict HIV fatigue are the psychosocial variables," Barroso says. "None of the physiological variables predicted it."
Even the researchers were surprised by the findings.
"When we had a first year of data, I said, 'Let's look at physiological first,' and our statistician said there was nothing there," Barroso recalls. "I said, 'Run the data again,' because for there to be nothing at all was really striking."
But the findings held up for the first two years of data, and the third year is still being analyzed, she adds.
Investigators analyzed the fatigue scores. The higher a person's fatigue score, from a zero to 10 scale, the more intensely they're experiencing fatigue. They compared these scores with the other measurements to determine correlations.
"So if you have a high score on the anxiety scale and the fatigue scale, then that's a strong correlation," Barroso says.
The HIV patients who had the highest fatigue scores specifically scored high on depression, anxiety, and stressful life events, she says.
"In our sample there was as an extraordinarily high amount of childhood trauma and adult trauma, as well," Barroso says. "We do a very intense stress of life interview, and they fill out a questionnaire before the visit, and our research coordinator interviews them about these answers."
Of all of the variables, the main predictor of increased fatigue was a person having had a stressful life event in the previous six months, and this also led to people being depressed and anxious, Barroso explains.
Investigators even looked at the use of antidepressants and found that fatigue scores were the same whether or not their depression was treated, she adds.
"You might get some reduction in the depressive symptoms, but you don't necessarily get a reduction in the fatigue, as well," Barroso says.
Starting in January, 2010, investigators will implement a cognitive behavioral stress management intervention that is directed at stress management and teaching HIV patients better coping skills.
"We hope that since stress is the primary predictor we can reduce fatigue with this intervention," Barroso says. "These people have such trauma in their lives they need counseling and not just an antidepressant."
The fatigue research suggests that clinicians should consider psychosocial issues, especially stressful live events, as causes of fatigue once they've ruled out physiological factors, Barroso says.
"You should check for anemia and low testosterone in men, which are the two most common causes of fatigue that are physiologically based," she says. "But if you don't see anything beyond those two, then you don't need to go on a search."
Also, Barroso suggests that clinicians avoid giving patients platitudes about how their CD4 cell counts are up, their viral loads are down, and so they should feel fine or, even worse, that they should just take a nap.
Instead, clinicians should ask patients about their fatigue and to try to determine when they feel better and when the fatigue is worse, Barroso says.
"Some people will feel better in the morning, but hit a wall in the afternoon," she says. "The other thing we know from looking at our data is the most fatigued 20% stayed the most fatigued with no variability, while the middle group bumped around a little."
This means a patient with severe fatigue won't spontaneously get better, and the literature suggests fatigue likely will impact their adherence to treatment, Barroso says.
HIV clinics that have social workers and other psychosocial support should make sure severely fatigued patients receive these services, particularly when patients report having had traumatic life events, including sexual abuse, she adds.
"Some of these patients have had horrible life situations, and many did not have the parenting they needed to teach them how to cope with stress," Barroso says.