HIV/AIDS Research

Wasting dramatically reduces the quality of life of AIDS patients

Wasting syndrome—or sudden loss of more than 10 percent of body weight—was the cause of death for 14 percent of AIDS patients in 1995, and it affects half of AIDS patients in clinical trials. Wasting and eventual loss of lean body mass lead to weakness, organ failure, secondary immune dysfunction, exhaustion, and ultimately death. It has a profound negative effect on the quality of life of people with AIDS, concludes a study supported by the Agency for Health Care Policy and Research (HS07767). Discussions with 26 men and 8 women with a history of AIDS-associated wasting in four focus groups revealed that nearly all of them were limited in their ability to function, some quite severely, due to the lack of energy and/or muscle weakness that comes with AIDS-related wasting.

Many patients lacked the energy and stamina to perform at work, do household tasks, even dress and bathe themselves, which in turn damaged their self-esteem. Wasting also devastated the psyches of many individuals, who considered wasting the first tangible sign that death was approaching. They reported that wasting evoked feelings of hopelessness, loss of power, grief, depression, preoccupation with morbid thoughts, anxiety, fear, panic, and even anger. Also, the loss of one's usual appearance, to the point of becoming almost skeletal in many cases, resulted in alienation from one's self, a sense of seeing a stranger in the mirror.

For many, wasting syndrome caused the stigma of AIDS to become visible to others, note study authors Marcia A. Testa, Ph.D., of the Harvard School of Public Health, and William R. Lenderking, Ph.D., of Massachusetts General Hospital. Seemingly small improvements in appearance could potentially lead to large gains in self-esteem, which would likely decrease social isolation and feelings of embarrassment and shame. Similarly, relatively small gains in muscle strength might enable a person to open a jar, lift a bag of groceries, or take a subway. These improvements should be used as standards against which to measure the effectiveness of new therapeutic agents for AIDS-associated wasting, concluded the researchers.

For more details, see "The impact of AIDS-associated wasting on quality of life: Qualitative issues of measurement and evaluation," by Drs. Testa and Lenderking, in the Journal of Nutrition 129, pp. 282S-289S, 1999.

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