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How proxies make decisions about research for patients with Alzheimer's disease.

Publication ,  Journal Article
Sugarman, J; Cain, C; Wallace, R; Welsh-Bohmer, KA
Published in: J Am Geriatr Soc
August 2001

We examined the proxy decision-making and informed consent processes for clinical research involving 49 patient-subjects with dementia in an outpatient setting by performing serial in-depth, structured, open-ended telephone interviews. Interviews were tape recorded and transcribed. Transcripts were then coded and analyzed. Although in all cases proxy consent was obtained for research from a legally authorized representative, proxies reported considerable ambiguity regarding who made the decision to participate in research, or to what degree the decision was that of the proxy or of the patient. Reasons proxies gave for participating in research included: hope of direct or indirect benefits to the patient, caregiver, or patient's descendents; desperation; trust in the investigator; belief in the goodness of research; and altruism. These reasons varied according to the type of research. For instance, in drug trials hope of direct benefit prevailed; in studies not evaluating a potential therapy more altruistic concerns predominated. Being a proxy decision maker for research can be burdensome. The degree of burden related to making a decision to participate in research seems influenced by a number of intersecting factors, most importantly, the risk and nature of the study, the extent to which patients were able to participate in the decision, and the duration and severity of dementia. Proxy decision-making concerning participation in research for patients with dementia can be a difficult task. The process might be improved by emphasizing that proxy consent is being sought because the nature of the patient's underlying medical condition can preclude the ability to make meaningful decisions. In addition, clinical researchers should recognize that giving proxy consent might place additional burdens on caregivers and discuss this explicitly when proxy consent is solicited.

Duke Scholars

Published In

J Am Geriatr Soc

DOI

ISSN

0002-8614

Publication Date

August 2001

Volume

49

Issue

8

Start / End Page

1110 / 1119

Location

United States

Related Subject Headings

  • Third-Party Consent
  • Severity of Illness Index
  • Proxy
  • Patient Selection
  • Patient Participation
  • North Carolina
  • Middle Aged
  • Male
  • Humans
  • Human Experimentation
 

Citation

APA
Chicago
ICMJE
MLA
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Sugarman, J., Cain, C., Wallace, R., & Welsh-Bohmer, K. A. (2001). How proxies make decisions about research for patients with Alzheimer's disease. J Am Geriatr Soc, 49(8), 1110–1119. https://doi.org/10.1046/j.1532-5415.2001.49218.x
Sugarman, J., C. Cain, R. Wallace, and K. A. Welsh-Bohmer. “How proxies make decisions about research for patients with Alzheimer's disease.J Am Geriatr Soc 49, no. 8 (August 2001): 1110–19. https://doi.org/10.1046/j.1532-5415.2001.49218.x.
Sugarman J, Cain C, Wallace R, Welsh-Bohmer KA. How proxies make decisions about research for patients with Alzheimer's disease. J Am Geriatr Soc. 2001 Aug;49(8):1110–9.
Sugarman, J., et al. “How proxies make decisions about research for patients with Alzheimer's disease.J Am Geriatr Soc, vol. 49, no. 8, Aug. 2001, pp. 1110–19. Pubmed, doi:10.1046/j.1532-5415.2001.49218.x.
Sugarman J, Cain C, Wallace R, Welsh-Bohmer KA. How proxies make decisions about research for patients with Alzheimer's disease. J Am Geriatr Soc. 2001 Aug;49(8):1110–1119.
Journal cover image

Published In

J Am Geriatr Soc

DOI

ISSN

0002-8614

Publication Date

August 2001

Volume

49

Issue

8

Start / End Page

1110 / 1119

Location

United States

Related Subject Headings

  • Third-Party Consent
  • Severity of Illness Index
  • Proxy
  • Patient Selection
  • Patient Participation
  • North Carolina
  • Middle Aged
  • Male
  • Humans
  • Human Experimentation