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  • Publication # 13-RA006

Retention in HIV care is a problem for many patients

Chronic Disease

With HIV now treated as a chronic disease like diabetes, patients’ engagement in their care is important to reduce mortality and improve outcomes. This includes initiating care early and then continuing care on a regular, consistent basis. However, one in five patients never establish HIV care after an initial visit. Even when patients do establish care, regularity and retention in care remain significant problems, according to a new study. John A. Fleishman, Ph.D., of the Agency for Healthcare Research and Quality (AHRQ), and colleagues examined the rates of HIV care establishment, retention, and loss to followup by reviewing the medical record data on 22,984 adults with HIV who were receiving care at 12 clinics located in various geographic regions of the United States.

During the 9-year study period, the study team determined how well patients met three care criteria: establishing care, having regular monitoring visits, and remaining in care indefinitely. Establishing care was defined as having outpatient visits to the HIV clinic for longer than a 6-month period. Regularity of care was defined as having two or more outpatient visits separated by at least 91 days during a 12-month period. Retention in care was defined as not being lost to followup, where loss to followup reflected having more than 12 months after the last outpatient visit and the end of the study period. Among the patients studied, 21.7 percent never established outpatient HIV care. Women were more likely than men to establish care, as were blacks and Hispanics. Other patient groups likely to establish HIV care were men who had sex with men, those with private insurance, and patients 40 years of age or older.

Among established patients, 57.4 percent did not fulfill the regularity criterion; 34.9 percent were lost to followup. Only 20.4 percent of patients met all three criteria. Those patients most likely to meet all three criteria were women, older patients, Hispanics, and those patients with CD4 levels of <50 cells/µL (indicating more advanced HIV disease). The researchers recommend that care providers boost their adoption of existing interventions to retain patients in care while developing new and effective approaches.

More details are in "Establishment, retention, and loss to follow-up in outpatient HIV care," by Dr. Fleishman, Baligh R. Yehia, M.D., Richard D. Moore, M.D., M.HSc., and others in the July 1, 2012 Journal of Acquired Immune Deficiency Syndrome 69(3), pp. 249-259. Reprints (AHRQ Publication No. 12-R083) are available from the AHRQ Publications Clearinghouse.


Page last reviewed March 2013
Internet Citation: Retention in HIV care is a problem for many patients: Chronic Disease. March 2013. Agency for Healthcare Research and Quality, Rockville, MD.


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