Taking antiretroviral therapy for HIV infection - Learning from patients' stories

OBJECTIVE: To describe how people with HIV understand and experience the pr oblem of adhering to antiretroviral medication regimens. DESIGN: We performed a qualitative study based on interviews with HIV-infec ted patients, including 46 clients of AIDS service organizations, who were sampled according to age, ethnicity, and injection drug use history, and a convenience sample of 15 patients. Interviews were conducted in English or Spanish and were audiotaped and transcribed. PARTICIPANTS: Of 52 respondents who had prescriptions for antiretroviral th erapy, 25 were randomly selected for indepth analysis. Of these, 5 reported having an AIDS diagnosis, 15 reported symptoms they attributed to HIV, and 5 reported having no symptoms of HIV disease. MEASUREMENTS AND MAIN RESULTS: Investigators prepared structured abstracts of interviews to extract adherence-related data. One investigator compared the abstracts with the original transcripts to confirm the interpretations, and used the abstracts to organize and classify the findings. Most subject s (84%) reported recent nonadherent behavior, including ceasing treatment, medication "holidays." sleeping through doses, forgetting doses, skipping d oses due to side effects, and following highly asymmetric schedules. Initia lly, most reported that they were not significantly nonadherent, and many d id not consider their behavior nonadherent. Only a minority clearly underst ood the possible consequences of missing doses. Most said they had not disc ussed their nonadherence with their physicians. CONCLUSIONS: Many people rationalize their difficulty in adhering to HIV tr eatment by deciding that the standard of adherence they can readily achieve is appropriate. Physicians should inquire about adherence-related behavior hn specific detail, and ensure that patients understand the consequences o f not meeting an appropriate standard.