The reasoning behind decisions not to take up antiretroviral therapy in Australians infected with HIV

A substantial minority of HIV-infected Australians are not taking antiretroviral drugs. This study investigated the reasons behind their decision not to do so. Anyone who was HIV-infected but not taking antiretroviral drugs could participate. A self-administered, anonymous questionnaire was used, the principal recruitment method being through insertion of the questionnaire into gay community newspapers in Sydney and Melbourne. All respondents were asked questions covering demographics, previous AIDS-defining illnesses, T-cell and viral load monitoring, and previous use of antiretroviral drugs. In addition, respondents who had considered going on antiretroviral treatment, but then decided not to do so, were given a list of possible reasons for their decision and asked to indicate how much each played a role in their thinking. Of the 270 respondents, the great majority were gay men. One-eighth had experienced AIDS-defining illnesses. Two-thirds had recently had T-cell and viral load tests. One-third had taken antiretroviral drugs previously. Over two-thirds had considered antiretroviral therapy, most having given the matter quite some thought. Reasons for not taking up therapy did not differ greatly at different stages of HIV disease. The most common individual reason was fear of side effects. Important themes that emerged from factor analysis of the reasons data included distrust of conventional medical approaches to treatment, practical problems associated with taking antiretroviral drugs, unpleasant thoughts that being on therapy would evoke, and acceptance of the idea of dying. The findings can be used by doctors and counsellors to help patients clarify and evaluate their concerns about antiretroviral therapy.