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From the Departments of Medicine (Drs. Karlawish and Casarett), Molecular and Cellular Engineering (Dr. Sankar), and Sociology (J. Klocinski), The University of Pennsylvania; the Division of Geriatrics (Drs. Karlawish and Casarett); the Alzheimer’s Disease Center (Dr. Karlawish); the Center for Bioethics (Drs. Karlawish, Casarett, and Sankar); the Philadelphia Veteran’s Administration Medical Center (Dr. Casarett); and the Institute on Aging (Drs. Karlawish and Casarett), Philadelphia, PA.
Address correspondence and reprint requests to Dr. Karlawish, Institute on Aging, 3615 Chestnut Street, Philadelphia, PA 19104; e-mail: Jasonkar{at}mail.med.upenn.edu
To examine how patients and caregivers decide whether to enroll in a clinical trial, the authors conducted semi-structured interviews with 22 family caregivers of patients with mild to moderate AD who were recruited for a clinical trial. They found that a caregiver who enrolls a patient in research generally involves the patient in the decision-making process, reports that the patient shares in the decision, and regards the risks and benefits to the patient and to the caregiver as interdependent.
This article has been cited by other articles:
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  J. Karlawish, M. S. Cary, J. Rubright, and T. TenHave How redesigning AD clinical trials might increase study partners' willingness to participate Neurology, December 2, 2008; 71(23): 1883 - 1888. [Abstract] [Full Text] [PDF]
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M. P. McQuillen and P. Tariot Who can say yes (or no) to a physician--and how does the physician know they can? Neurology, May 10, 2005; 64(9): 1494 - 1495. [Full Text] [PDF]
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 L. B. Dunn and N. E. Gordon Improving Informed Consent and Enhancing Recruitment for Research by Understanding Economic Behavior JAMA, February 2, 2005; 293(5): 609 - 612. [Full Text] [PDF]
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J. H. Karlawish, R. J. Bonnie, P. S. Appelbaum, C. Lyketsos, B. James, D. Knopman, C. Patusky, R. A. Kane, and P. S. Karlan Addressing the Ethical, Legal, and Social Issues Raised by Voting by Persons With Dementia JAMA, September 15, 2004; 292(11): 1345 - 1350. [Abstract] [Full Text] [PDF]
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 J. H.T. Karlawish Research Involving Cognitively Impaired Adults N. Engl. J. Med., April 3, 2003; 348(14): 1389 - 1392. [Full Text] [PDF]
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S. D. Halpern, J. H. T. Karlawish, and J. A. Berlin The Continuing Unethical Conduct of Underpowered Clinical Trials JAMA, July 17, 2002; 288(3): 358 - 362. [Abstract] [Full Text] [PDF]
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 J. H. T. Karlawish, D. Casarett, K. J. Propert, B. D. James, M. Bioethics, and C. M. Clark Relationship between Alzheimer's Disease Severity and Patient Participation in Decisions about Their Medical Care J Geriatr Psychiatry Neurol, June 1, 2002; 15(2): 68 - 72. [Abstract] [PDF]
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 S. Y.H. Kim, C. Cox, and E. D. Caine Impaired Decision-Making Ability in Subjects With Alzheimer's Disease and Willingness to Participate in Research Am J Psychiatry, May 1, 2002; 159(5): 797 - 802. [Abstract] [Full Text] [PDF]
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J. H.T. Karlawish, D. A. Casarett, B. D. James, K. J. Propert, and D. A. Asch Do persons with dementia vote? Neurology, April 9, 2002; 58(7): 1100 - 1102. [Abstract] [Full Text] [PDF]
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J. H. T. Karlawish and D. Casarett Addressing the Ethical Challenges of Clinical Trials That Involve Patients with Dementia J Geriatr Psychiatry Neurol, December 1, 2001; 14(4): 222 - 228. [Abstract] [PDF]
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