Retention and attendance of women enrolled in a large prospective study of HIV-1 in the United States


Our objective was to measure study retention (returning for follow-up visits) and attendance for two recruitment waves of participants in the Women’s Interagency HIV Study (WIHS), since recruiting strategies were modified between the two waves. After 10 study visits (five years), the overall retention rate in the new WIHS cohort (enrolled in 2001-2002) was 86 percent for both the HIV-uninfected and HIV-infected women. In the original cohort (enrolled in 1994-1995), after 24 study visits (12 years), the retention rate was 75 percent for the HIV-infected women and 62 percent for the HIV-uninfected women. In analysis of the HIV-infected women, risk factors for early (visits 2 and 3) non-attendance were temporary housing, moderate alcohol consumption, use of crack/cocaine/heroin, having a primary care provider, WIHS site of enrollment, lower CD4 cell count, and higher viral load. Among HIV-uninfected women, the risk factors for early non- attendance were recruitment into the original cohort, household income >=$12,000 per year, temporary housing, unemployment, use of crack/cocaine/heroin, and WIHS site of enrollment. In analysis of HIV-infected study participants, risk factors for non-attendance at later visits (7 through 10) were younger age, White race, not having a primary care provider, not having health insurance, WIHS site of enrollment, higher viral load, and non-attendance at a previous visit. In analysis of HIV-uninfected study participants, younger age, White race, WIHS site of enrollment, and non-attendance at a previous visit were significantly associated with non-attendance at later visits. Preventing early study dropout resulted in better study retention early on, but dropout at later study visits may require different prevention strategies.


Hessol NA, Weber K, Holman S, Alden C, Goparaju L, Kono N, Robison E, Watts H, and Ameli N. Retention and Attendance of Women Enrolled in a Large Prospective Study of HIV-1 in the United States. J Women’s Health 2009;18(10):1627-1637.