Patient Support Helps AIDS Treatment

Depression, low self-esteem keep some from taking AIDS medication

(Nov. 8, 2002) -- Thirty-nine-year-old Rick Otterbein owes his life to the ever-changing regimen of drugs he has taken in the 17 years since he learned he was HIV-positive. He watched a lover and several close friends die of AIDS, and is grateful to be alive. But he has also struggled with treatment and, at times, has even abandoned his HIV medications because taking them was just too difficult.

"At one point I was taking 24 pills a day, and I just couldn't do it," he says. "Psychologically, taking so many pills was making me sicker than I already was. It was a constant reminder that I had this illness that could kill me. You can't forget because your life revolves around taking medication."

More than 800,000 people in the United States are living with HIV, and many of them are on the new therapies that have transformed AIDS from a sure killer to a disease that can be managed. But there is growing evidence that adherence to these AIDS treatments is often compromised by treatment-related depression and other psychological issues.

In an effort to identify predictors of psychological well-being among HIV patients taking highly active antiretroviral therapy (HAART), researcher Steven Safren, PhD, and colleagues at Massachusetts General Hospital surveyed 84 such patients participating in a 12-week study of treatment adherence. Their findings are reported in the latest issue of the journal Psychosomatics.

The researchers first assessed levels of depression, quality of life, and self-esteem, using standardized questionnaires. They then asked the patients to complete surveys assessing particular life events, perceived social support and coping styles.

Patients with adequate social support and good coping skills were least likely to report depression, poor quality of life, and low self-esteem. But patients who perceived their HIV status as a punishment were more likely to report low self-esteem and depression.

According to Safren, the idea that HIV is a punishment is a common clinical response that is independently predictive of depression. Although the study did not specifically look at treatment adherence, he said other studies have shown that poor adherence is associated with depression and low self esteem.

"There are several types of issues related to well-being in people living with HIV who are on these medications," says Safren. "Many people struggle with negative beliefs about their own infection and their medication."

Like Otterbein, many patients on HAART also struggle with the life-altering restrictions and side effects of treatment. Adherence needs to be in the range of 95% for a patient to have the best chance of suppressing HIV. That means failure to take medications just once a week can compromise therapy.

"You feel like you can't do anything or go anywhere, because you have to plan your life around taking pills," says Otterbein, who now works with an AIDS task force in his home state of Michigan. "I hear from people all the time who are depressed because their treatment keeps them from doing what they want to do or there are too many side effects."

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Otterbein now takes just two pills a day, but he says most patients still take far more. He is frustrated by the perception that living with AIDS is now little different from living with chronic diseases like diabetes.

"This is not an easy life," he says. "There is no forgetting that you have this disease."

Next: Caring for someone with AIDS

Written in 2002. Last reviewed: 10/05

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