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Monday, 18 October 2004 - 8:30 AM

This presentation is part of: Opening Plenary Session (6)

REACHING CONSENSUS ON INTERNATIONAL PATIENT DECISION AID STANDARDS (IPDAS) FOR THEIR DEVELOPMENT AND EVALUATION

Annette M. O'Connor, PhD1, Glyn Elwyn, MD, PhD2, Dawn Stacey, PhD(c)3, Alexandra Barratt, MD, PhD4, Michael Barry, MD5, Angela Coulter, PhD6, Margaret Holmes-Rovner, PhD7, Hilary A. Llewellyn-Thomas, PhD8, Nora Moumjid, PhD9, Richard Thomson, MD10, Tim Whelan, MD11, and IPDAS Collaboration1. (1) University of Ottawa, Faculty of Health Sciences & Faculty of Medicine, Ottawa, ON, Canada, (2) University of Wales Swansea, Primary Care Group, Swansea, United Kingdom, (3) Ottawa Health Research Institute, Clinical Epidemiology Program, Ottawa, ON, Canada, (4) University of Sydney, School of Public Health, Sydney, Australia, (5) Harvard University, Harvard Medical School, Boston, MA, (6) Picker Institute Europe, Chief Executive, Oxford, United Kingdom, (7) Michigan State University, Medicine, East Lansing, MI, (8) Dartmouth Medical School, Center for Evaluative Clinical Sciences, Hanover, NH, (9) GRESAC - UMR 5823 CNRS, Centre Léon Bérard, Lyon, France, (10) University of Newcastle upon Tyne, School of Population and Health Sciences, Newcastle upon Tyne, United Kingdom, (11) Hamilton Regional Cancer Centre, Supportive Cancer Care Research Unit, Hamilton, ON, Canada

Purpose: The number of decision aids is expanding exponentially from 16 identified in 1999 to over 500 in 2004. However, there is considerable variability in their elements and quality. Our objective was to establish an internationally approved set of quality criteria for their development and evaluation.

Methods: In September 2003, a group of 56 patient decision aid researchers, representing nine countries (CA, FR, US, UK, NL, AU, FI, DE, NO), identified an initial set of criteria and established a steering committee and sub-committees focused on evidence, methods, and stakeholder identification. The Evidence subcommittee summarized the theoretical and empirical links between each criterion and its potential effects on decision quality and drafted voting items. A key evidence source was a Cochrane systematic review of 35 randomized trials and an inventory of 500+ decision aids. Members of a Shared Decision Making list-serve (N=170) were presented with the broad classes of quality criteria and asked to provide additional suggestions. The methods sub-committee established the final set of voting items after testing their clarity with potential voters. The stakeholder sub-committee identified potential voters (e.g. patients, practitioners, researchers, policy makers) to review the quality criteria summaries and vote on the importance and feasibility of each quality criterion using a modified Delphi process.

Results: There were 12 broad classes of quality criteria focused on: using a systematic development process; providing information on options; presenting probabilities; clarifying and communicating values; guiding/coaching in deliberation and communication; describing others’ experiences with decision making; disclosing conflicts of interest; delivering decision aids on the Internet; balancing the presentation of options; using plain language; basing information on scientific evidence; and establishing its effectiveness. The evidence supporting some criteria (e.g. providing information, presenting probabilities, clarifying values) was stronger than for others (e.g. guiding/coaching, describing others’ experiences, Internet-based). The Delphi voting process is expected to be complete by September 2004.

Conclusions: The standards derived from this process will assist developers in improving their patient decision aids and assist users (patients, practitioners) and payers in judging the quality of patient decision aids. The evidence summaries provide the basis for developing an agenda to address gaps in research.


See more of Opening Plenary Session (6)
See more of The 26th Annual Meeting of the Society for Medical Decision Making (October 17-20, 2004)