Literature DB >> 22782275

Improving the informed consent process for research subjects with low literacy: a systematic review.

Leonardo Tamariz1, Ana Palacio, Mauricio Robert, Erin N Marcus.   

Abstract

BACKGROUND: Inadequate health literacy may impair research subjects' ability to participate adequately in the informed consent (IC) process. Our aim is to evaluate the evidence supporting interventions, to improve comprehension of the IC process in low literacy subjects.
METHODS: We performed a MEDLINE database search (1966 to November 2011) supplemented by manual searches of bibliographies of key relevant articles. We selected all studies in which a modification of the IC was tested to improve comprehension in low literacy populations. Study design, quality criteria, population, interventions and outcomes for each trial were extracted. The main outcome evaluated was comprehension, measured using a written test or verbal comprehension.
RESULTS: Our search strategy yielded 281 studies, of which only six met our eligibility criteria. The six studies included 1620 research participants. The studies predominantly included populations that were older (median age 61, range 48-64), ethnic minority, and with literacy level of 8th grade or below. Only one study had a randomized design. The specific intervention differed in each study. Two of the studies included the teach-back method or teach to goal method and achieved the highest level of comprehension. Two studies changed the readability level of the IC and resulted in the lowest comprehension among study subjects.
CONCLUSIONS: The evidence supporting interventions to improve the informed consent process in low literacy populations is extremely limited. Among the interventions evaluated, having a study team member spend more time talking one-on-one to study participants was the most effective strategy for improving informed consent understanding; however, this finding is based on the results of a single study.

Entities:  

Mesh:

Year:  2012        PMID: 22782275      PMCID: PMC3539038          DOI: 10.1007/s11606-012-2133-2

Source DB:  PubMed          Journal:  J Gen Intern Med        ISSN: 0884-8734            Impact factor:   5.128


  22 in total

1.  Quantitative analysis of ethical issues in phase I trials: a survey interview of 144 advanced cancer patients.

Authors:  C K Daugherty; D M Banik; L Janish; M J Ratain
Journal:  IRB       Date:  2000 May-Jun

Review 2.  Literacy, comprehension, and informed consent in clinical research.

Authors:  P C Raich; K D Plomer; C A Coyne
Journal:  Cancer Invest       Date:  2001       Impact factor: 2.176

3.  Informed consent documents: increasing comprehension by reducing reading level.

Authors:  Daniel R Young; Donald T Hooker; Fred E Freeberg
Journal:  IRB       Date:  1990 May-Jun

4.  Readability standards for informed-consent forms as compared with actual readability.

Authors:  Michael K Paasche-Orlow; Holly A Taylor; Frederick L Brancati
Journal:  N Engl J Med       Date:  2003-02-20       Impact factor: 91.245

5.  Missing the informed in consent.

Authors:  Jeremy Sugarman
Journal:  Anesth Analg       Date:  2003-02       Impact factor: 5.108

Review 6.  Interventions to improve research participants' understanding in informed consent for research: a systematic review.

Authors:  James Flory; Ezekiel Emanuel
Journal:  JAMA       Date:  2004-10-06       Impact factor: 56.272

7.  How informed is informed consent? The BHAT experience.

Authors:  J M Howard; D DeMets
Journal:  Control Clin Trials       Date:  1981-12

8.  Quality of informed consent in cancer clinical trials: a cross-sectional survey.

Authors:  S Joffe; E F Cook; P D Cleary; J W Clark; J C Weeks
Journal:  Lancet       Date:  2001-11-24       Impact factor: 79.321

9.  Informed consent to biomedical research in Veterans Administration Hospitals.

Authors:  H W Riecken; R Ravich
Journal:  JAMA       Date:  1982-07-16       Impact factor: 56.272

10.  Health literacy and knowledge of chronic disease.

Authors:  Julie A Gazmararian; Mark V Williams; Jennifer Peel; David W Baker
Journal:  Patient Educ Couns       Date:  2003-11
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  52 in total

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Authors:  Sarah L Goff; Kathleen M Mazor; Henry H Ting; Reva Kleppel; Michael B Rothberg
Journal:  JAMA Intern Med       Date:  2014-10       Impact factor: 21.873

2.  Use of mobile devices and the internet for multimedia informed consent delivery and data entry in a pediatric asthma trial: Study design and rationale.

Authors:  Kathryn Blake; Janet T Holbrook; Holly Antal; David Shade; H Timothy Bunnell; Suzanne M McCahan; Robert A Wise; Chris Pennington; Paul Garfinkel; Tim Wysocki
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3.  A cognitive approach for design of a multimedia informed consent video and website in pediatric research.

Authors:  Holly Antal; H Timothy Bunnell; Suzanne M McCahan; Chris Pennington; Tim Wysocki; Kathryn V Blake
Journal:  J Biomed Inform       Date:  2017-01-19       Impact factor: 6.317

4.  Avoiding Exploitation in Phase I Clinical Trials: More than (Un)Just Compensation.

Authors:  Matt Lamkin; Carl Elliott
Journal:  J Law Med Ethics       Date:  2018-03-27       Impact factor: 1.718

5.  Health literacy and consent forms: librarians support research on human subjects.

Authors:  Paula G Raimondo; Ryan L Harris; Michele Nance; Everly D Brown
Journal:  J Med Libr Assoc       Date:  2014-01

6.  Health literacy, numeracy, and other characteristics associated with hospitalized patients' preferences for involvement in decision making.

Authors:  Kathryn M Goggins; Kenneth A Wallston; Samuel Nwosu; Jonathan S Schildcrout; Liana Castel; Sunil Kripalani
Journal:  J Health Commun       Date:  2014

7.  The Development of a Communication Tool to Facilitate the Cancer Trial Recruitment Process and Increase Research Literacy among Underrepresented Populations.

Authors:  Samantha Torres; Erika E de la Riva; Laura S Tom; Marla L Clayman; Chirisse Taylor; Xinqi Dong; Melissa A Simon
Journal:  J Cancer Educ       Date:  2015-12       Impact factor: 2.037

8.  The Optimistic Bias and Illusions of Control in Clinical Research.

Authors:  Lynn A Jansen
Journal:  IRB       Date:  2016 Mar-Apr

9.  Improving informed consent: Stakeholder views.

Authors:  Emily E Anderson; Susan B Newman; Alicia K Matthews
Journal:  AJOB Empir Bioeth       Date:  2017-08-02

10.  "Teach-to-Goal" to Better Assess Informed Consent Comprehension among Incarcerated Clinical Research Participants.

Authors:  Cyrus Ahalt; Rebecca Sudore; Marielle Bolano; Lia Metzger; Anna M Darby; Brie Williams
Journal:  AMA J Ethics       Date:  2017-09-01
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