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National Estimates of HIV-Related Symptom Prevalence From the HIV Cost and Services Utilization Study

Mathews, Wm. Christopher MD, MSPH*; McCutchan, J. Allen MD*; Asch, Steven MD§; Turner, Barbara J. MD; Gifford, Allen L. MD; Kuromiya, Kiyoshi#; Brown, Julie BA; Shapiro, Martin F. MD, PhD‡∥; Bozzette, Samuel A. MD, PhD*†∥

Original Articles

Objectives. The objectives of this study were (1) to estimate the prevalence, bothersomeness, and variation of HIV-related symptoms in a nationally representative sample of HIV-infected adults receiving medical care and (2) to evaluate new aggregate measures of symptom frequency and bothersomeness.

Methods. Beginning in January 1996, 76% of a multistage national probability sample of 4,042 HIV-infected adults receiving medical care were interviewed. Participants endorsed the presence and degree of bothersomeness of 14 HIV-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 selected characteristics by analysis of variance and multiple linear regression modeling.

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 symptoms, 35.6% of women; sinus symptoms, 34.8%; eye trouble, 32.4%; cough/dyspnea, 30.4%; thrush, 27.3%; rash, 24.3%; oral pain, 24.1%; and Kaposi's sarcoma, 4%. Aggregate measures were reliable (Cronbach's alpha ≥0.75) and demonstrated construct validity when compared with other measures of disease severity. After adjustment for CD4 count, both symptom 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 of variation was small. Symptoms were greatest in women and injection drug users, as well as in persons with lower educational levels, lower income, and 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.

*From the University of California at San Diego.

From the Veterans Affairs San Diego Healthcare System, San Diego, California.

From the University of California at Los Angeles.

§From the University of Southern California, Los Angeles, California.

From RAND Health, Santa Monica, California.

From Jefferson Medical College of Thomas Jefferson University, Philadelphia, Pennsylvania. Dr. Turner is currently with the University of Pennsylvania, Philadelphia.

#From Critical Path AIDS Project, Philadelphia, Pennsylvania.

This research was presented in part at the Society of General Internal Medicine meeting, San Francisco, California, April 29-May 1, 1999.

Address correspondence to: Wm. Christopher Mathews, MD, UCSD Medical Center, 8681, 200 W Arbor Dr, San Diego, CA 92103. E-mail:

Received August 12, 1999; initial review completed December 3, 1999; accepted March 22, 2000.

© 2000 Lippincott Williams & Wilkins, Inc.