Developing a quality criteria framework for patient decision aids: online international Delphi consensus process

doi:10.1136/bmj.38926.629329.AE

BMJ, doi: 10.1136/bmj.38926.629329.AE, (Published 14 August 2006)

RESEARCH

Developing a quality criteria framework for patient decision aids: online international Delphi consensus process

Glyn Elwyn ¹^*, Annette O'Connor ², Dawn Stacey ³, Robert Volk ⁴, Adrian Edwards ¹, Angela Coulter ⁵, Richard Thomson ⁶, Alexandra Barratt ⁷, Michael Barry ⁸, Steven Bernstein ⁹, Phyllis Butow ¹⁰, Aileen Clarke ¹¹, Vikki Entwistle ¹², Deb Feldman-Stewart ¹³, Margaret Holmes-Rovner ¹⁴, Hilary Llewellyn-Thomas ¹⁵, Nora Moumjid ¹⁶, Albert G Mulley ⁸, Cornelia Ruland ¹⁷, Karen Sepucha ⁸, Alan Sykes ¹⁸, Tim Whelan ¹⁹, on behalf of the International Patient Decision Aids Standards (IPDAS) Collaboration

¹ Department of General Practice, Centre for Health Sciences Research, Cardiff University, Cardiff CF14 4YS
² University of Ottawa and Ottawa Health Research Institute, Clinical Epidemiology Program, Ottawa, ON, Canada K1Y 4E9
³ School of Nursing, University of Ottawa, Ottawa, ON, Canada K1H 8M5
⁴ Department of Family and Community Medicine, Baylor College of Medicine, Houston, TX 77098-3915, USA
⁵ Picker Institute Europe, King's Mead House, Oxford OX1 1RX
⁶ Newcastle upon Tyne Medical School, School of Population and Health Sciences, Newcastle upon Tyne NE2 4HH
⁷ Screening and Test Evaluation Program, School of Public Health, University of Sydney, NSW 2006, Australia
⁸ Massachusetts General Hospital, Harvard Medical School, Boston, MA 02114, USA
⁹ HSR&D Center of Excellence, VA Ann Arbor Healthcare System, USA
¹⁰ Medical Psychology Research Unit, School of Psychology, University of Sydney
¹¹ Public Health Resource Unit, Oxford OX4 2GX
¹² Social Dimensions of Health Institute, University of Dundee, Dundee DD1 4HJ
¹³ Division of Cancer Care and Epidemiology, Cancer Research Institute, Queen's University, Kingston, ON, Canada
¹⁴ Center for Ethics, Michigan State University, East Lansing, MI 48824, USA
¹⁵ Center for the Evaluative Clinical Sciences, Department of Community and Family Medicine, Dartmouth Medical School, Hanover, NH, USA
¹⁶ GRESAC, Centre Léon Bérard, 69008 Lyon, France
¹⁷ Rikshospitalet Radiumhospitalet, Oslo, Norway
¹⁸ Acadvent Ltd, 171 Gower Road, Swansea
¹⁹ Department of Medicine, McMaster University and Juravinski Cancer Centre, Hamilton, ON, Canada

^* Correspondence to: elwyng{at}cardiff.ac.uk.

Objective To develop a set of quality criteria for patient decisionsupport technologies (decision aids).

Design and setting Twostage web based Delphi process using online rating process toenable international collaboration.

Participants Individualsfrom four stakeholder groups (researchers, practitioners, patients,policy makers) representing 14 countries reviewed evidence summariesand rated the importance of 80 criteria in 12 quality domainson a 1 to 9 scale. Second round participants received feedbackfrom the first round and repeated their assessment of the 80criteria plus three new ones.

Main outcome measure Aggregateratings for each criterion calculated using medians weightedto compensate for different numbers in stakeholder groups; criteriarated between 7 and 9 were retained.

Results 212 nominated peoplewere invited to participate. Of those invited, 122 participatedin the first round (77 researchers, 21 patients, 10 practitioners,14 policy makers); 104/122 (85%) participated in the secondround. 74 of 83 criteria were retained in the following domains:systematic development process (9/9 criteria); providing informationabout options (13/13); presenting probabilities (11/13); clarifyingand expressing values (3/3); using patient stories (2/5); guiding/coaching(3/5); disclosing conflicts of interest (5/5); providing internetaccess (6/6); balanced presentation of options (3/3); usingplain language (4/6); basing information on up to date evidence(7/7); and establishing effectiveness (8/8).

Conclusions Criteriawere given the highest ratings where evidence existed, and thesewere retained. Gaps in research were highlighted. Developers,users, and purchasers of patient decision aids now have a checklistfor appraising quality. An instrument for measuring qualityof decision aids is being developed.

(Accepted 13 July 2006)

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