Providing Balanced Information about Options in Patient Decision Aids: An Update from the International Patient Decision Aid Standards

Abstract

Background The objective of this International Patient Decision Aids Standard (IPDAS) review is to update and synthesize theoretical and empirical evidence on how balanced information can be presented and measured in patient decision aids (PtDAs). Methods A multidisciplinary team conducted a scoping review using 2 search strategies in multiple electronic databases evaluating the ways investigators defined and measured the balance of information provided about options in PtDAs. The first strategy combined a search informed by the Cochrane Review of the Effectiveness of Decision Aids with a search on balanced information. The second strategy repeated the search published in the 2013 IPDAS update on balanced presentation. Results Of 2450 unique citations reviewed, the full text of 168 articles was screened for eligibility. Sixty-four articles were included in the review, of which 13 provided definitions of balanced presentation, 8 evaluated mechanisms that may introduce bias, and 42 quantitatively measured balanced with methods consistent with the IPDAS criteria in PtDAs. The revised definition of balanced information is, “Objective, complete, salient, transparent, evidence-informed, and unbiased presentation of text and visual information about the condition and all relevant options (with important elements including the features, benefits, harms and procedures of those options) in a way that does not favor one option over another and enables individuals to focus attention on important elements and process this information.” Conclusions Developers can increase the balance of information in PtDAs by informing their structure and design elements using the IPDAS checklist. We suggest that new PtDA components pertaining to balance be evaluated for cognitive bias with experimental methods as well by objectively evaluating patients’ and content experts’ beliefs from multiple perspectives.

Patients’ perspectives on the benefits of feedback on patient-reported outcome measures in a web-based personalized decision report for hip and knee osteoarthritis

“…One current challenge is the limited availability of PROM data on non-surgical outcomes, restricting personalized predictions to surgery alone, as in other THA/TKA feedback reports [9,12]. This may result in decision report imbalance toward surgery, biasing treatment decisions [51]. An interesting finding was patients' perceived value in using the data to affirm a decision they had already made.…”

Implementing shared decision-making in Australia

“…More broadly, SDM was explicitly included in a Department of Health ''issues paper" for consultation about clinical decision support in primary care, reflecting awareness of the concept at Primary Health Network and Federal government levels [36]. Australian SDM researchers have been involved in several international expert reviews to update the International Patient Decision Aids Standards, leading to new guidance on risk communication [37,38], conflicts of interest [39], providing balanced information about options [40] and health literacy [41]. To evaluate the health literacy environment, they reviewed patient DAs for cardiovascular disease, diabetes, musculoskeletal conditions and prenatal genetic testing to inform the development of new Australian tools [42].…”

Shared decision-making in patients with multiple sclerosis

“…These tools may also improve satisfaction related to the decision (22). For patients, PtDAs provide reliable, balanced, and evidence-based information about the options and the benefits and harms of those options, including uncertainties (23,24). PtDAs also typically provide so-called value clarification methods (VCMs) that help patients think about the desirability of options or attributes of options within a specific decision context, to identify the preferred option (25,26).…”