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

JAMA Pediatr. 2013 Jul;167(7):640-6. doi: 10.1001/jamapediatrics.2013.1385.

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.

Publication types

  • Randomized Controlled Trial
  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Biomedical Research / ethics
  • Communication*
  • Comprehension*
  • Consent Forms / standards*
  • Female
  • Health Knowledge, Attitudes, Practice
  • Humans
  • Male
  • Parents / psychology*
  • Surveys and Questionnaires