Literature DB >> 23700028

Informing the uninformed: optimizing the consent message using a fractional factorial design.

Alan R Tait1, Terri Voepel-Lewis, Vijayan N Nair, Naveen N Narisetty, Angela Fagerlin.   

Abstract

IMPORTANCE: Research information should be presented in a manner that promotes understanding. However, many parents and research subjects have difficulty understanding and making informed decisions.
OBJECTIVE: To examine the effect of different communication strategies on parental understanding of research information.
DESIGN: Observational study from January 2010 to June 2012 using a fractional factorial design.
SETTING: Large tertiary care children's hospital. PARTICIPANTS: Six hundred forty parents of children scheduled for elective surgery.
INTERVENTIONS: Parents were randomized to receive information about a hypothetical pain trial presented in 1 of 16 consent documents containing different combinations of 5 selected communication strategies (ie, length, readability, processability [formatting], graphical display, and supplemental verbal disclosure). MAIN OUTCOME AND MEASURES: Parents were interviewed to determine their understanding of the study elements (eg, protocol and alternatives) and their gist (main point) and verbatim (actual) understanding of the risks and benefits.
RESULTS: Main effects for understanding were found for processability, readability, message length, use of graphics, and verbal discussion. Consent documents with high processability, eighth-grade reading level, and graphics resulted in significantly greater gist and verbatim understanding compared with forms without these attributes (mean difference, 0.57; 95% CI, 0.26-0.88, number of correct responses of 7 and mean difference, 0.54; 95% CI,0.20-0.88, number of correct responses of 4 for gist and verbatim, respectively). CONCLUSIONS AND RELEVANCE: Results identified several communication strategy combinations that improved parents' understanding of research information. Adoption of these active strategies by investigators, clinicians, institutional review boards, and study sponsors represents a simple, practical, and inexpensive means to optimize the consent message and enhance parental, participant, and patient understanding.

Entities:  

Mesh:

Year:  2013        PMID: 23700028      PMCID: PMC3700595          DOI: 10.1001/jamapediatrics.2013.1385

Source DB:  PubMed          Journal:  JAMA Pediatr        ISSN: 2168-6203            Impact factor:   16.193


  37 in total

1.  Comprehension during informed consent in a less-developed country.

Authors:  Daniel W Fitzgerald; Cécile Marotte; Rose Irene Verdier; Warren D Johnson; Jean William Pape
Journal:  Lancet       Date:  2002-10-26       Impact factor: 79.321

2.  Improving informed consent: the medium is not the message.

Authors:  Patricia Agre; Frances A Campbell; Barbara D Goldman; Maria L Boccia; Nancy Kass; Laurence B McCullough; Jon F Merz; Suzanne M Miller; Jim Mintz; Bruce Rapkin; Jeremy Sugarman; James Sorenson; Donna Wirshing
Journal:  IRB       Date:  2003 Sep-Oct

3.  Is informed consent to clinical trials an "upside selective" process in acute coronary syndromes?

Authors:  A M Kucia; J D Horowitz
Journal:  Am Heart J       Date:  2000-07       Impact factor: 4.749

4.  Quality of informed consent: a new measure of understanding among research subjects.

Authors:  S Joffe; E F Cook; P D Cleary; J W Clark; J C Weeks
Journal:  J Natl Cancer Inst       Date:  2001-01-17       Impact factor: 13.506

5.  Modifying a standard industry clinical trial consent form improves patient information retention as part of the informed consent process.

Authors:  G M Dresden; M A Levitt
Journal:  Acad Emerg Med       Date:  2001-03       Impact factor: 3.451

6.  The recruitment triangle: reasons why African Americans enroll, refuse to enroll, or voluntarily withdraw from a clinical trial. An interim report from the African-American Antiplatelet Stroke Prevention Study (AAASPS).

Authors:  P B Gorelick; Y Harris; B Burnett; F J Bonecutter
Journal:  J Natl Med Assoc       Date:  1998-03       Impact factor: 1.798

7.  Using pictographs to enhance recall of spoken medical instructions II.

Authors:  P S Houts; J T Witmer; H E Egeth; M J Loscalzo; J R Zabora
Journal:  Patient Educ Couns       Date:  2001-06

8.  Do they understand? (part I): parental consent for children participating in clinical anesthesia and surgery research.

Authors:  Alan R Tait; Terri Voepel-Lewis; Shobha Malviya
Journal:  Anesthesiology       Date:  2003-03       Impact factor: 7.892

9.  Do they understand? (part II): assent of children participating in clinical anesthesia and surgery research.

Authors:  Alan R Tait; Terri Voepel-Lewis; Shobha Malviya
Journal:  Anesthesiology       Date:  2003-03       Impact factor: 7.892

10.  Factors that influence parents' assessments of the risks and benefits of research involving their children.

Authors:  Alan R Tait; Terri Voepel-Lewis; Shobha Malviya
Journal:  Pediatrics       Date:  2004-04       Impact factor: 7.124

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  7 in total

1.  Improved participants' understanding of research information in real settings using the SIDCER informed consent form: a randomized-controlled informed consent study nested with eight clinical trials.

Authors:  Nut Koonrungsesomboon; Thipaporn Tharavanij; Kittichet Phiphatpatthamaamphan; Ratha-Korn Vilaichone; Sudsayam Manuwong; Parichat Curry; Sith Siramolpiwat; Thanachai Punchaipornpon; Supakit Kanitnate; Nattapol Tammachote; Rodsarin Yamprasert; Waipoj Chanvimalueng; Ruchirat Kaewkumpai; Soiphet Netanong; Peerapong Kitipawong; Paskorn Sritipsukho; Juntra Karbwang
Journal:  Eur J Clin Pharmacol       Date:  2016-11-12       Impact factor: 2.953

2.  Can we make informed consent forms more informative?

Authors:  Elizabeth E Foglia
Journal:  Arch Dis Child Fetal Neonatal Ed       Date:  2017-12-08       Impact factor: 5.747

3.  Development of Plain Language Supplemental Materials for the Biobank Informed Consent Process.

Authors:  Bettina F Drake; Katherine M Brown; Sarah Gehlert; Leslie E Wolf; Joann Seo; Hannah Perkins; Melody S Goodman; Kimberly A Kaphingst
Journal:  J Cancer Educ       Date:  2017-12       Impact factor: 2.037

4.  Informed consent conversations and documents: A quantitative comparison.

Authors:  Shlomo A Koyfman; Chandana A Reddy; Sabahat Hizlan; Angela C Leek; And Eric D Kodish
Journal:  Cancer       Date:  2015-10-27       Impact factor: 6.860

5.  Permission form synopses to improve parents' understanding of research: a randomized trial.

Authors:  C T D'Angio; H Wang; J E Hunn; G S Pryhuber; P R Chess; S Lakshminrusimha
Journal:  J Perinatol       Date:  2017-03-30       Impact factor: 2.521

6.  Creating concise and readable patient information sheets for interventional studies in Australia: are we there yet?

Authors:  Tanya Symons; Joshua S Davis
Journal:  Trials       Date:  2022-09-21       Impact factor: 2.728

7.  Ensuring that informed consent is really an informed consent: Role of videography.

Authors:  Ravindra B Ghooi
Journal:  Perspect Clin Res       Date:  2014-01
  7 in total

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