Lipodystrophy syndrome and self-assessment of wellbeing and physical appearance in HIV-positive patients

In the era of highly active antiretroviral therapy (HAART), the efficacy of treatment of HIV infection has improved dramatically. Since 1997, lipodystrophy syndrome (LDS) has become a growing problem in HIV-positive patients treated with HAART.

LDS consists of the elements of fat redistribution and metabolic disorders such as hyperlipidemia and reduced insulin sensitivity. Although the pathogenesis of LDS is not completely understood, there is sufficient evidence that it is a complication of HAART itself.

The prevalence of LDS varies between 18% and 70% after several years of HAART, depending on the population and method of classification. There are few therapeutic options for LDS, with doubtful efficacy.

LDS is an obstacle for successful therapy because of increasing morbidity and the possible necessity of switching the combination of antiretroviral compounds. Affected persons may complain about social problems because of the loss of their characteristic appearance. Reduction of facial fat is likely to carry the greatest stigma, one of the central problems in the lives of people with HIV/AIDS. The present study investigated attitudes toward health condition, wellbeing, and individual appearance in relation to LDS.

The case definition of LDS was as follows: lipoatrophy of the face was defined as loss of buccal fat and pronounced nasolabial fold; lipoatrophy of the extremities was defined as fat loss of arms and legs with prominent veins not caused by other venous disease; fat redistribution of the abdomen was defined as enlarged abdominal volume with reduced subcutaneous fat. Signs of LDS were divided into present and absent or unknown by appearance and examination.

Between July and October 2000, outpatients in an HIV-specialised unit at the University Hospital of Dusseldorf, Germany, underwent clinical evaluation and received a standardised written questionnaire. Of 389 patients eligible for analysis, 313 patients (80.5 percent response rate) returned completed questionnaires.

Participants did not differ significantly from nonresponding patients considering age, gender, transmission route, stage of disease, CD4 cell count, viral load and duration of HAART. The majority of patients were male homosexuals, mostly at stage CDC B and C with reduced CD4 cell count, and a median viral load of 51 copies per millilitre. More than 80 percent of patients stated that they had good or very good health and no or very little disturbance of wellbeing by their HIV infection.

The prevalence of LDS was 37.7 percent (118 patients), manifesting as follows: lipoatrophy of the face in 103 patients (32.9 percent), abdominal fat redistribution in 53 patients (16.9 percent), and lipoatrophy of the extremities in 70 patients (22.4 percent). The presence of LDS had no significant influence on the self-assessment of general quality of health condition and the amount of disturbance of wellbeing by HIV infection. Participants with LDS felt recognisable as HIV-positive by physical appearance in 30.1 percent of cases, compared to 18.3 percent in patients without LDS. This difference became more pronounced after adjustment for gender, age, stage of disease, CD4 cell count, and duration of HAART.

Study authors concluded the presence of LDS does not seem to influence the attitude toward individual health condition and the feeling of wellbeing. However, patients presenting with lipodystrophy are about twice as likely to feel recognisable as HIV-positive by their physical appearance. LDS may thus be perceived as a characteristic mark of being HIV-positive by affected persons. A stigmatising effect and social disadvantages may be the consequences, they wrote.