The burden of shared decision-making: A scoping review of burden assessments in SDM research

The aim of this scoping review was to investigate how often and in what manner studies that assess SDM also capture the burden of this process. We searched Web of Science and Scopus for articles citing any one of the SDM measurements identified in a previous review. We included all original studies examining real-life patients and clinicians making health decisions, that reported scores of an SDM measure, and quantitatively or qualitatively captured the burden of SDM. We extracted descriptive characteristics and information on how SDM and the burden of SDM were captured. We categorized assessments of burden into cognitive, emotional, social, temporal, logistical/financial, and/or expectations. We included 218 studies in the final analysis. A plurality of included studies was conducted in the United States (N=90, 41.2%), and in oncology settings (N=54, 24.8%). Included studies used 14 different SDM measures, most frequently the SDM-Q-9 (N=77, 28.6%). None of the included studies aimed to identify burden of SDM, and we found no specific instruments to measure the burden of SDM nor are we aware of any available for this purpose. 193 Studies (88.5%) used measures that contained items related to the burden of SDM, most frequently the Decisional Conflict Scale (N=154, 71%). Qualitative assessments of burden were conducted in 35 (16.1%) studies, mostly by using interviews and open-ended surveys. Included studies most frequently assessed the cognitive (N=215, 98.6%), emotional (N=209, 95.8%), and social (N=202, 92.6%) burdens of SDM. While we found many studies that captured aspects of the burden of SDM obliquely, we found none that explicitly aimed to assess the burden of SDM. In future studies, the burden of SDM should be assessed to better understand the degree to which burden prevents or inhibits the practice of SDM. Future work should consider this aspect of SDM when designing interventions or policies to increase the clinical uptake of SDM. • This review found no studies aiming to measure the burden of shared decision making. • We found 218 studies that qualitatively or quantitatively captured a type of burden. • Cognitive, emotional, and social types of burden were most frequently captured. • Logistical/Financial, Expectations, and temporal burdens were rarely captured. • Mixed-methods studies identified a greater range of burden types.