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Spirituality, drug recovery led to improvement
Cincinnati researchers studying how HIV-infected people perceive their quality of life discovered a somewhat surprising fact: Nearly half of the people surveyed said their lives have improved since they contracted the virus.1
"Obviously, the news that you are HIV-infected comes as a shock to a lot of patients, and you’re not going to convince people on the day they first hear the news that their lives have gotten better, but over time they might come to that conclusion," explains Joel Tsevat, MD, MPH, an author of the quality-of-life study and the director of outcomes research in the Department of Internal Medicine at the University of Cincinnati Medical Center.
The study looked at possible correlations between those who rated their quality of life high and other factors. The researchers found that the patient’s stage of disease and the types of medications taken were not predictors of whether patients rated their life better than it was before infection. Overall, 49% of patients said their lives were better now than before they were infected with HIV. Another 18% said their lives were the same, and 29% said their lives were worse.
There did seem to be a positive correlation between self-report of improvement and the following three factors:
• being at peace with God and the universe;
• female gender;
• past use of injection drugs.
"We addressed spirituality in the study, and we found that patients who were at peace with God and the universe were much more likely to say that their life had improved," Tsevat says. "They were content and had found a meaning and purpose to their lives."
Women also were more likely to report being happier now with their lives. About 73% of the women surveyed said their lives were better now, compared with 39% of the men. And 71% of people who had used injection drugs but have since quit reported their lives were better, compared with 45% of patients who had never used injection drugs.
While the survey’s results might appear shocking to most people, it shouldn’t surprise clinicians who have been working intimately with HIV-infected patients, says Judith Feinberg, MD, an infectious disease specialist at the Infectious Disease Center at the University of Cincinnati. Feinberg currently is involved in other AIDS research, but was not a co-author of this study.
"It’s not astonishing," Feinberg says. "I’ve had patients, even back when HIV therapy wasn’t as effective, who said that AIDS gave them an opportunity to find out what’s really important in their lives."
HIV patients eliminate trivial problems
Feinberg recalls patients who had the attitude that having HIV was a way of eliminating unnecessary tasks from their lives.
"In a way, that’s a gift, because most of our lives are so crammed full of all these petty things, and we spend time on stuff that’s not really important," she says. "We might get irritated about it, but we don’t have the threat of a potentially fatal disease hanging over us to make us say, I don’t have to do this, it’s just stupid and it isn’t important to me.’"
People infected with HIV sometimes have a clarity about life that other people lack, Feinberg adds. "They also have a purpose, and if they can act on it, it’s enriching."
The survey included 85 HIV-infected people, but the main analysis was done on 51 people who participated in individual, in-depth cognitive interviews. The other 34 people were part of six focus groups that helped researchers develop a structured questionnaire.
Researchers reviewed subjects’ medical records to determine when their HIV infection was diagnosed, what stage of disease they were in, whether they had a history of injection drug use, their CD4 cell count, and whether they were receiving protease inhibitors.
The participants represented the full spectrum of the disease, from people who had no symptoms to people with full-blown AIDS. They also were diverse demographically, with 29% women and 55% minorities. The participants included people who had contracted HIV through injection drug use, homosexuals, and heterosexuals, Tsevat says.
"We tried to get a representative sample of where the HIV infection is now, but we may have oversampled women and minorities," he adds.
Patients were asked how they felt about their lives. Most (71%) of the patients said they were mostly satisfied, pleased, or delighted, and only 6% were mostly dissatisfied or unhappy, with no patient reporting that life was terrible.
Respondents valued quantity over quality
The survey attempted to assess whether quality of health was more important to HIV patients than quantity of life, so the questionnaire asked whether patients would be willing to trade off some years of their expected life span in return for better health. Patients were asked to say how much time they’d be willing to trade for better health. This was another surprising finding, Tsevat says.
"On average, patients were only willing to give up 5% of their current life expectancy in return for perfect health, and almost half were unwilling to trade any time at all," he adds. "They had a strong will for a quantity of life over quality." The study found that 47% of patients were unwilling to trade any time, and 14% were willing to trade up to nine days of life expectancy for excellent health.
The questionnaire also assessed patients’ willingness to gamble with their lives in exchange for a chance at perfect health. On average, patients were willing to take up to a 20% risk for death, but 41% of patients were unwilling to accept more than 0.5% chance of death.
The study’s findings should be viewed as good news by clinicians and others who work with HIV patients, because it shows that people with HIV can live happy, enriched lives.
However, more research is needed to identify ways that clinicians and others who work with HIV patients can help these patients improve their quality of life, Tsevat says.
"We need to find out what’s important to patients in their lives as a whole, and not just health-wise, because if half of the patients said their lives have gotten better, then perhaps there is something we could do for the other half," Tsevat says.
In the meantime, physicians and other clinicians might help patients find meaning in their illness by spending more time talking with them about their lives and what’s important to them, Feinberg says.
Unfortunately, with managed care pressures forcing doctors to see greater numbers of patients in a day, that’s often impossible, she adds.
"The concept of treating people like cattle and herding them in and out I think is insane," she says. "People with a chronic disease need someone to pay attention to them, and they need your time and attention, which is what they are coming for as much as they are for the technical part of it."
1. Tsevat J, Sherman SN, McElwee JA, et al. The will to live among HIV-infected patients. Ann Intern Med 1999; 131:194-198.