National estimates of HIV-related symptom prevalence from the HIV cost andservices utilization study

OBJECTIVES. The objectives of this study were (1) to estimate the prevalenc e, bothersomeness, and variation of HIV-related symptoms in a nationally re presentative sample of HIV-infected adults receiving medical care and (2) t o evaluate new aggregate measures of symptom frequency and bothersomeness. METHODS. Beginning in January 1996, 76% of a multistage national probabilit y sample of 4,042 HIV-infected adults receiving medical care were interview ed Participants endorsed the presence and degree of bothersomeness of 14 HI V-related symptoms during the preceding 6 months. Sex-standardized symptom number and bothersomeness indices were constructed. After sampling weights were incorporated, symptom distributions were compared according to selecte d characteristics by analysis of variance and multiple linear regression mo deling. RESULTS. Prevalence of specific symptoms in the reference population was as follows: fever/night sweats, 51.1%; diarrhea, 51%; nausea/anorexia, 49.8%; dysesthesias, 48.9%; severe headache, 39.3%; weight loss, 37.1%; vaginal s ymptoms, 35.6% of women; sinus symptoms, 34.8%; eye trouble, 32.4%; cough/d yspnea, 30.4%; thrush, 27.3%; rash, 24.3%; oral pain, 24.1%; and Kaposi's s arcoma, 4%. Aggregate measures were reliable (Cronbach's alpha greater than or equal to 0.75) and demonstrated construct validity when compared with o ther measures of disease severity. After adjustment for CD4 count, both sym ptom number and bothersomeness varied significantly (P < 0.05) by teaching status of care setting, exposure/risk group, educational achievement, sex, annual income, employment, and insurance category. However, the magnitude o f variation was small. Symptoms were greatest in women and injection drug u sers, as well as in persons with lower educational levels, lower income, an d Medicare enrollment or those who were followed up at teaching hospitals. CONCLUSIONS. The prevalence and bothersomeness of HIV-related symptoms are substantial and vary by setting of care and patient characteristics.