People with HIV/AIDS Now Considering Quality of Life

In the not-too-distant past, "palliative" care was given to HIV/AIDS patients because there was no other option. "Palliate" means "to reduce the violence of a disease." For patients who are not expected to live long, palliative care involves ways to kill pain and offer soothing comfort during the final stages of fatal illness.

More effective treatment in recent years has greatly increased the life span of people with HIV/AIDS in the US. As patients live longer, healthcare practitioners are placing more emphasis on enhancing the quality of their lives by treating HIV/AIDS as a long-term chronic condition. Reducing pain and providing comfort are still important, but no longer always in the same context as late-term palliative care when death is imminent.

"We tend to look at two different domains: physical quality of life and psychological quality of life," says Cheryl Gore-Felton, PhD, Medical College of Wisconsin Assistant Professor of Psychiatry and a faculty member at the Center for Aids Intervention Research (CAIR). "The physical things we look at in terms of functionality. Can you walk? Can you breathe? Does it hurt to lift things?"

"Bodily pain is a really big thing for people with HIV, particularly with peripheral neuropathy in the hands and feet that makes it difficult to walk or pick things up. Weakness, general fatigue, or just a feeling of malaise, are other factors we take into consideration."

"We ask people things like 'In the past week or so, how many days were pain-free?' and 'Were you able to do the things that you wanted to do?' We look at their attention to daily living activities, their ability to bathe and get dressed…those very basic areas that contribute to quality of life."

"Quality of Life" Based on Individual Perception
Regular communication is a critical element in creating a better quality of life for patients with any chronic condition, Dr. Gore-Felton said, and it is becoming more important to HIV patients as the prospects for changing the status quo improve.

"We always ask people if they feel that their quality of life is sufficient, or if they would like to do more," said Dr. Gore-Felton. "It's really not about our sense of quality of life. We may look at someone who has limited functionality and say 'Wow, their quality of life is really low,' but when we talk to them we hear 'No, it's great!' So it's really a perception. It's an individual thing. A lot of people who have diminished capacity (maybe they can't run a 10K race any more), may still be able to do other things but say that their quality of life is a lot lower."

In the psychological domain, what Dr. Gore-Felton described as "the usual suspects" are considered when assessing the well-being of HIV/AIDS patients. "We look at depression, anxiety, substance use and cognitive functioning, which is a particularly big area of concern for people living with HIV," said Dr. Gore-Felton. In general terms, society is still more judgmental about HIV/AIDS patients than it is about others with chronic illness, Dr. Gore-Felton noted, adding that those lingering societal views have a direct impact on the quality of life of individuals.

No Longer an Early Death Sentence
"The big thing with HIV is stigma," said Dr. Gore-Felton. "The only other disease that I can think of to compare it to was cancer 'back in the day.' Cancer used to be highly stigmatized. People didn't understand how you got it, thought it was contagious, that sort of thing."

"But the stigma around HIV, particularly because it can be transmitted via sex and via injection drug use, makes it a particularly volatile disease for people because they feel like they have to keep it secret. That imposes a lot of stress on people about who they can disclose to and who they can't disclose to. I've got people that I'm seeing whose parents don't even know."

Dr. Gore-Felton and other CAIR staffers regularly take part in HIV/AIDS studies and co-author papers on quality of life issues. Topics have included HIV-related factors that influence sleep, strategies of coping with stress as it relates to functional quality of life, and thoughts of suicide among persons living with HIV/AIDS. "When I first started working in the area of HIV in the early 90s, the disease was really a death sentence, said Dr. Gore-Felton. "We were doing more existential kinds of interventions, just helping people to cope with dying."

"There were a lot of people maxing out their credit cards and giving away things. They really thought that they weren't going to be here for longer than a year or so. With the combination therapies on the scene, people are getting back to health. People are saying 'I'm starting to feel like my old self again,' getting energy back, feeling less fatigue."

Those better outcomes by no means indicate easy lives of good health for HIV/AIDS patients. "As people started to stay on their medications longer, side effects begin to diminish their quality of life," said Dr. Gore-Felton. "And the longer people live with the disease, the more we begin to see this diminished quality of life because chronic disorders - such as diabetes, hypertension and other sorts of co-morbid illnesses - start to occur. All in all, though, the combination therapies have allowed people to live longer and have improved their quality of life."

Dan Ullrich
HealthLink Contributing Writer

For more information, visit the website of the Center for Aids Intervention Research

MCW Health News presents up-to-date information on patient care and medical research by the physicians of the Medical College of Wisconsin.