Why participate in an Alzheimer’s disease clinical trial? Is it of benefit to carers and patients?

Mastwyk, Maree, Macfarlane, Stephen, LoGiudice, Dina, & Sullivan, Karen A. (2003) Why participate in an Alzheimer’s disease clinical trial? Is it of benefit to carers and patients? International Psychogeriatrics, 15(2), pp. 149-156.

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Background: We explored carer motivation for seeking participation for a relative in an Alzheimer’s disease (AD) clinical drug trial, to assess impressions of the value of trial participation. We also surveyed the carers of patients who did not meet study-entry screening criteria to see if our conduct of the screening visit was acceptable and ethical. Method: A retrospective questionnaire was sent to the carers of 36 randomised participants and 22 carers of patients who did not meet study entry screening criteria for an AD clinical treatment trial. Results: Twenty-nine (81%) of the trial participant carers and 15 (68%) of carers of the group who did not meet study entry criteria, returned their questionnaires, with sufficient information for analysis. The prime motivators in seeking trial participation were: to help their relative feel better and live longer, to contribute to medical science, to improve the health of others and the hope of a cure. Carers of both groups found research staff supportive and would recommend trial participation to others. Conclusions: Even though trial participation is onerous and patients were generally perceived by carers as not having improved, both the screening visit and participation in the trial itself were seen as positive experiences and the expectations of carers were met.

Impact and interest:

8 citations in Scopus
11 citations in Web of Science®
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ID Code: 5540
Item Type: Journal Article
Refereed: Yes
Keywords: Sullivan, Alzheimers disease, caregivers, clinical trials
DOI: 10.1017/S1041610203008834
ISSN: 1041-6102
Subjects: Australian and New Zealand Standard Research Classification > PSYCHOLOGY AND COGNITIVE SCIENCES (170000) > PSYCHOLOGY (170100) > Health Clinical and Counselling Psychology (170106)
Divisions: Current > QUT Faculties and Divisions > Faculty of Health
Current > Institutes > Institute of Health and Biomedical Innovation
Copyright Owner: Copyright 2003 Cambridge University Press
Copyright Statement: Reproduced in accordance with the copyright policy of the publisher.
Deposited On: 23 Nov 2006 00:00
Last Modified: 29 Feb 2012 12:58

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