A review of decision support, risk communication and patient information tools for thrombolytic treatment in acute stroke: lessons for tool developers

Abstract

BackgroundTools to support clinical or patient decision-making in the treatment/management of a health condition are used in a range of clinical settings for numerous preference-sensitive healthcare decisions. Their impact in clinical practice is largely dependent on their quality across a range of domains. We critically analysed currently available tools to support decision making or patient understanding in the treatment of acute ischaemic stroke with intravenous thrombolysis, as an exemplar to provide clinicians/researchers with practical guidance on development, evaluation and implementation of such tools for other preference-sensitive treatment options/decisions in different clinical contexts.MethodsTools were identified from bibliographic databases, Internet searches and a survey of UK and North American stroke networks. Two reviewers critically analysed tools to establish: information on benefits/risks of thrombolysis included in tools, and the methods used to convey probabilistic information (verbal descriptors, numerical and graphical); adherence to guidance on presenting outcome probabilities (IPDASi probabilities items) and information content (Picker Institute Checklist); readability (Fog Index); and the extent that tools had comprehensive development processes.ResultsNine tools of 26 identified included information on a full range of benefits/risks of thrombolysis. Verbal descriptors, frequencies and percentages were used to convey probabilistic information in 20, 19 and 18 tools respectively, whilst nine used graphical methods. Shortcomings in presentation of outcome probabilities (e.g. omitting outcomes without treatment) were identified. Patient information tools had an aggregate median Fog index score of 10. None of the tools had comprehensive development processes.ConclusionsTools to support decision making or patient understanding in the treatment of acute stroke with thrombolysis have been sub-optimally developed. Development of tools should utilise mixed methods and strategies to meaningfully involve clinicians, patients and their relatives in an iterative design process; include evidence-based methods to augment interpretability of textual and probabilistic information (e.g. graphical displays showing natural frequencies) on the full range of outcome states associated with available options; and address patients with different levels of health literacy. Implementation of tools will be enhanced when mechanisms are in place to periodically assess the relevance of tools and where necessary, update the mode of delivery, form and information content.

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“…7–25 However, most research on clinical decision support has focused upon patient management after initial assessment and diagnosis or through mandatory alerts for providers, such as reminders for intraoperative antibiotic prophylaxis, postoperative nausea and vomiting prophylaxis, or proper use of alarms for separate from cardiopulmonary bypass. 26–34 In contrast, the use of DSTs for patient assessment/diagnosis and the subsequent application of evidence-based protocols has yet to be rigorously tested.…”

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“…95 Graphic risk communication tools such as person icon arrays have been developed for IV thrombolysis decisions in acute ischemic stroke. 99,100 Although these tools rely on group-level data from clinical trials rather than providing dynamic individualized estimates of risk, they may provide a starting point for shared decisionmaking.…”

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“…The last two of these dimensions were also discussed most frequently in relation to current medications and medications used in the past, suggesting that the rheumatologists viewed this type of information as especially important for risk management. Yet, in contrast with the extensive literature that exists concerning the communication of probabilistic information (), very little research has focused on how to communicate information concerning the importance of monitoring or precautions to take while using specific medications. Similarly, little research has examined how patients interpret and use this type of information.…”