Article type
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Abstract
Background: While systematic summaries of the available evidence on benefits and harms are essential for the development of clinical practice guidelines, evidence alone is insufficient. Treatment recommendations involving a trade-off of desirable and undesirable consequences of alternative course of actions require value and preference judgments. Previous studies have identified a wide range of possible strategies for integrating patient values and preferences into guideline development.
Objectives: To assess how clinical practice guidelines incorporate patient values and preferences into the processes of developing recommendations and stating them.
Methods: We selected guidelines published between 2007 and 2009 which addressed five conditions for which incorporation of values and preferences would be important: breast cancer, prostate cancer, colorectal cancer, end of life care, and childbirth. We searched the National Guideline Clearinghouse, the Guidelines International Network, the Scottish Intercollegiate Guidelines Network, and the National Institute for Health and Clinical Excellence, using a combination of subject or condition headings, and keywords. One reviewer carried out the initial search, and two reviewers independently adjudicated the final inclusion.
Results: In the sample of 60 eligible guidelines, we identified 1357 recommendation statements. Less than 5% of all recommendation statements were explicitly informed by evidence that pertained to patient values and preferences (.58%), or included recommendations in support of involving patients in clinical decision-making (4.9%). Of the 60 guidelines, 24 (40%) reported that patients were involved in guideline development and/or review. Twelve guidelines (20%) reported that patient advocacy group members, or members of patient charity organizations, were invited to participate, and 15 (25%) guidelines involved community members in the development and/or review of guidelines.
Conclusion: Patient values and preferences are under-represented in guideline development.
Objectives: To assess how clinical practice guidelines incorporate patient values and preferences into the processes of developing recommendations and stating them.
Methods: We selected guidelines published between 2007 and 2009 which addressed five conditions for which incorporation of values and preferences would be important: breast cancer, prostate cancer, colorectal cancer, end of life care, and childbirth. We searched the National Guideline Clearinghouse, the Guidelines International Network, the Scottish Intercollegiate Guidelines Network, and the National Institute for Health and Clinical Excellence, using a combination of subject or condition headings, and keywords. One reviewer carried out the initial search, and two reviewers independently adjudicated the final inclusion.
Results: In the sample of 60 eligible guidelines, we identified 1357 recommendation statements. Less than 5% of all recommendation statements were explicitly informed by evidence that pertained to patient values and preferences (.58%), or included recommendations in support of involving patients in clinical decision-making (4.9%). Of the 60 guidelines, 24 (40%) reported that patients were involved in guideline development and/or review. Twelve guidelines (20%) reported that patient advocacy group members, or members of patient charity organizations, were invited to participate, and 15 (25%) guidelines involved community members in the development and/or review of guidelines.
Conclusion: Patient values and preferences are under-represented in guideline development.