Literature DB >> 25574795

Patients' perspectives of enrollment in research without consent: the patients' experiences in emergency research-progesterone for the treatment of traumatic brain injury study.

Neal W Dickert1, Victoria M Scicluna, Jill M Baren, Michelle H Biros, Ross J Fleischman, Prasanthi R Govindarajan, Elizabeth B Jones, Arthur M Pancioli, David W Wright, Rebecca D Pentz.   

Abstract

OBJECTIVE: Research in acute illness often requires an exception from informed consent. Few studies have assessed the views of patients enrolled in exception from informed consent trials. This study was designed to assess the views of patients and their surrogates of exception from informed consent enrollment within the context of a randomized, placebo-controlled trial of an investigational agent for traumatic brain injury.
DESIGN: Interactive interview study.
SETTING: Nested within the Progesterone for the Treatment of Traumatic Brain Injury trial, a Phase III randomized controlled trial in acute traumatic brain injury.
SUBJECTS: Patients and surrogates (for patients incapable of being interviewed) enrolled in Progesterone for the Treatment of Traumatic Brain Injury under exception from informed consent at 12 sites.
INTERVENTIONS: None.
MEASUREMENTS AND MAIN RESULTS: Interviews focused on respondents' acceptance of exception from informed consent enrollment in Progesterone for the Treatment of Traumatic Brain Injury, use of placebo and randomization, understanding of major study elements, and views regarding regulatory protections. Descriptive statistical analysis was performed; textual data were analyzed thematically. Eighty-five individuals were interviewed. Eighty-four percent had positive attitudes toward Progesterone for the Treatment of Traumatic Brain Injury inclusion. Seventy-eight percent found their inclusion under exception from informed consent acceptable, and 72% found use of exception from informed consent in Progesterone for the Treatment of Traumatic Brain Injury acceptable in general. Only two respondents clearly disagreed with both personal and general exception from informed consent enrollment. The most common concerns (26%) related to absence of consent. Eighty percent and 92% were accepting of placebo use and randomization, respectively. Although there were few black respondents (n = 11), they were less accepting of personal exception from informed consent enrollment than white respondents (55% vs 83%; p = 0.0494).
CONCLUSIONS: Acceptance of exception from informed consent in this placebo-controlled trial of an investigational agent was high and exceeded acceptance among community consultation participants. Exception from informed consent enrollment appears generally consistent with patients' preferences.

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Year:  2015        PMID: 25574795      PMCID: PMC5094912          DOI: 10.1097/CCM.0000000000000747

Source DB:  PubMed          Journal:  Crit Care Med        ISSN: 0090-3493            Impact factor:   7.598


  26 in total

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4.  Strengthening community consultation in critical care and emergency research.

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5.  Research participants' "irrational" expectations: common or commonly mismeasured?

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6.  Emergency research: using exception from informed consent, evaluation of community consultations.

Authors:  Prasanthi Govindarajan; Neal W Dickert; Michele Meeker; Natalie De Souza; Deneil Harney; Claude J Hemphill; Rebecca Pentz
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8.  Research participants' opinions of delayed consent for a randomised controlled trial of glucose control in intensive care.

Authors:  J E Potter; S McKinley; A Delaney
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Authors:  Michelle H Biros; Corey Sargent; Kathleen Miller
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Review 10.  Clinical research without consent in adults in the emergency setting: a review of patient and public views.

Authors:  Jan Lecouturier; Helen Rodgers; Gary A Ford; Tim Rapley; Lynne Stobbart; Stephen J Louw; Madeleine J Murtagh
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2.  Impact of individual clinical outcomes on trial participants' perspectives on enrollment in emergency research without consent.

Authors:  Louisa W Whitesides; Jill M Baren; Michelle H Biros; Ross J Fleischman; Prasanthi R Govindarajan; Elizabeth B Jones; Arthur M Pancioli; Rebecca D Pentz; Victoria M Scicluna; David W Wright; Neal W Dickert
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4.  Understanding preferences regarding consent for pragmatic trials in acute care.

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Review 5.  Meeting unique requirements: Community consultation and public disclosure for research in emergency setting using exception from informed consent.

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8.  Patient and surrogate attitudes via an interviewer-administered survey on exception from informed consent enrollment in the Prehospital Air Medical Plasma (PAMPer) trial.

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10.  The acceptability of delayed consent for prehospital emergency care research in the Western Cape province of South Africa.

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