AEGiS-10IAC: An assessment of satisfaction of clinical research participants in a long term study.

10th International AIDS Conference


Yokohama, Japan — Aug 7-12, 1994

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An assessment of satisfaction of clinical research participants in a long term study.

Int Conf AIDS 1994 Aug 7-12; 10:393 (abstract no. PD0755)
Johnson LM; UCSF.

OBJECTIVES: Identify dependent and independent variables operating in research participant satisfaction which may impact retention, compliance and course of HIV infection. To initiate follow-up longitudinal data collection from participants for evaluation of choices of HIV therapy, personal and social factors and the course of HIV.

METHODS: Sample population-participants in ACTG protocols 116, 116A, 117 at a public hospital. From a potential population of 70 enrolled in the 2 year study, 40 were alive 6 months after the study ended. Questionnaires were mailed to 39 people. Responses were anonymous.

RESULTS: Physician's were main informants of and influencers in choice to participate in research. Awareness of risk and choice was high. Satisfiers are individual contribution acknowledgement, confidentiality, respect, staff sensitivity. Most frequent dissatisfier is blinded nature of trial.

DISCUSSION AND CONCLUSIONS: Actions and attitudes of personnel influence positively the participant's satisfaction. Importance of physicians in having research reflect demographics of epidemic. Follow-up in progress of 26 surviving participants to obtain data of ongoing variables and their relationship to quality and quantity of life.

Keywords: AEGIS, Longitudinal Studies, Biomedical Research, Questionnaires, Clinical Trials, Physicians, Confidentiality, HIV Infections, Choice Behavior, Evaluation Studies, ICA10KWDaegis,longitudinalstudies,biomedicalresearch,questionnaires,clinicaltrials,physicians,confidentiality,hivinfections,choicebehavior,evaluationstudies,ica10
940807
PD0755

Copyright © 1994 - International AIDS Society (IAS). Reproduction of this abstract (other than one copy for personal reference) must be cleared through the IAS.