Receiving a positive HIV test result: the experience of patients in Europe.

OBJECTIVE To describe HIV-infected people's experience of the HIV test procedure in Europe. METHODS Between August 1996 and September 1997, anonymous self-administered questionnaires were distributed to HIV-infected people in 11 European countries. RESULTS A total of 1366 people completed the questionnaire (50% response rate). Of these, 194 (16%) had more than five negative HIV tests before being diagnosed as HIV positive, 179 (14%) were tested without consent and 192 (15%) were informed about the HIV positive test result by mail or by telephone. Of the 963 people who received a positive test result during a consultation, 247 (26%) reported that this visit lasted less than 10 min, 336 (35%) between 10 and 20 min, and 289 (30%) more than 20 min. Over half the total respondents (591, 54%) felt they did not receive adequate support when they were informed about being HIV positive, with 249 (19%) experiencing feelings of rejection. People who were diagnosed as HIV positive after 1994 reported more frequently receiving adequate support, information and understanding when the positive test result was revealed compared with those diagnosed before 1990. CONCLUSION A large number of our study participants did not endorse the way HIV tests were conducted and positive test results revealed. Although there was an improvement over time in the way HIV tests were conducted, they often did not conform to international guidelines.