11th International AIDS Conference Vancouver, British Columbia — July 7-12, 1996

Int Conf AIDS 1996 Jul 7-12; 11:35 (abstract no. LB.D.6067)
Maimon G, Giordano MF, Grimes-Gruczka T; NY Hospital-Cornell Medical Centre, Cornell Clinical Trials Unit, New York, NY. Fax: (212) 746-8415. E-mail: gm19@cornell.edu.

OBJECTIVE: As the population of AIDS clinical trial participants diversifies, it becomes important to understand the motivations and experiences of the various subgroups of patients. A survey study was conducted on patient sentiment towards clinical studies as well as the variability in these opinions that could be attributed to differing participant backgrounds.

METHODS: A sample of 49 patients attending a New York City based AIDS clinical trials unit completed a questionnaire that asked them about their backgrounds (age, sex, ethnicity, socio-economic level, sexual orientation, quality of life and length of time on studies) as well as their perceptions of clinical trials and their treatment in the unit.

RESULTS: Preliminary results have shown notable differences between subgroups. A disproportionately large number of minority participants (43%) did not know or were unsure about the meaning of "placebo treatment". Additionally, Black and Hispanic participants were more likely than whites to state that the studies provided them with their only access to health care (25% vs. 9%), indicating the greater tendency of minority patients to use the clinical trial unit as a proxy for primary care. As compared to the gay participants, many more heterosexuals attempted to find out whether they were on placebo or active drug (73% vs. 20%) and a larger percentage felt that they had learned more about their illness since joining the trials (71% vs. 41%), probably reflecting the high level of AIDS awareness in the gay community. Interestingly, women were more likely than men (91% vs. 62%) to have felt that the research team had discussed the positive and negative aspects of entering a clinical study with them. This may be influenced by the fact that all of the unit's research nurses were female. Furthermore, while a surprising 84% of all participants found the decision to join the trial an easy one to make, healthier patients (T-cells 100-500) were more likely than sicker patients(T-cells below 100) to find the decision difficult (25% vs. 6%). Despite these intergroup differences, it is clear that a vast majority of all individuals viewed the unit's staff and services in a very positive light. 96% of patients expressed that they were treated with respect, while 65% claimed that they would not drop out or would be unsure about dropping out of the studies even if they got sicker as the trials progressed. Most surprisingly, only 27% of all the participants stated that they would drop out of a trial if they learned they were receiving a placebo treatment, further emphasizing the high regard that patients have for the services being rendered at the clinic.

CONCLUSIONS: Important variances exist in the perceptions and experiences of clinical trial patients of differing backgrounds. These issues need to be identified and addressed even in clinical trial units that are apparently providing exceptional care.

960707
LBD6067

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