How to identify, incorporate and report patient preferences in clinical guidelines: A scoping review

BACKGROUND: Clinical guidelines optimize care delivery and outcomes. Guidelines support patient engagement and adherence if they reflect patient preferences for treatment options, risks and benefits. Many guidelines do not address patient preferences. Developers require insight on how to develop such guidelines. OBJECTIVE: To conduct a scoping review on how to identify, incorporate and report patient preferences in guidelines. SEARCH: We searched MEDLINE, EMBASE, Scopus, CINAHL, OpenGrey and GreyLit from 2010 to November 2019. ELIGIBILITY: We included English language studies describing patient preferences and guidelines. DATA EXTRACTION AND SYNTHESIS: We reported approaches for and determinants and impacts of identifying patient preferences using summary statistics and text, and interpreted findings using a conceptual framework of patient engagement in guideline development. RESULTS: Sixteen studies were included: 2 consulted patients and providers about patient engagement approaches, and 14 identified patient preferences (42.9%) or methods for doing so (71.4%). Studies employed single (57.1%) or multiple (42.9%) methods for identifying preferences. Eight (57.1%) incorporated preferences in one aspect of guideline development, while 6 (42.9%) incorporated preferences in multiple ways, most commonly to identify questions, benefits or harms, and generate recommendations. Studies did not address patient engagement in many guideline development steps. Included studies were too few to establish the best approaches for identifying or incorporating preferences. Fewer than half of the studies (7, 43.8%) explored barriers. None examined reporting preferences in guidelines. CONCLUSIONS: Research is needed to establish the single or multiple approaches that result in incorporating and reporting preferences in all guideline development steps.