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      Web-Based Interactive Tool to Support Shared Decision-Making in the Choice of Treatment for Advanced Pancreatic Cancer

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      Proceedings of the 32nd International BCS Human Computer Interaction Conference (HCI)

      Human Computer Interaction Conference

      4 - 6 July 2018

      Pancreatic cancer, decision aid, mixed methods research, web-based interactive tool, shared decision-making, human-centred design

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          Abstract

          Pancreatic cancer currently has no cure in its advanced stage and often, systemic chemotherapy is used to improve survival and quality of life of patients. Chemotherapy treatments are available with varying degrees of benefits, harms, and uncertainties, and patients need to be aware of these characteristics and make informed choices or decide whether to avoid chemotherapy altogether. Web-based tools may help patients in making this informed choice with the help of their clinicians and relatives. Therefore, the aim of the study is to investigate the potential of a web-based interactive tool to support shared decision-making in the choice of treatment for people with advanced pancreatic cancer. A four-phase mixed methods paradigm has been adopted for the study. Participants will be clinicians (oncologists, clinical nurse specialists), people diagnosed with advanced (inoperable) pancreatic cancer, and relatives who support these patients. The first phase of the study identified 60 relevant citations on advanced pancreatic cancer treatment from four electronic databases from 1997 to 2018.

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          Most cited references 27

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          Shared decision making: really putting patients at the centre of healthcare

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            Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers

            Background Making evidence-based decisions often requires comparison of two or more options. Research-based evidence may exist which quantifies how likely the outcomes are for each option. Understanding these numeric estimates improves patients’ risk perception and leads to better informed decision making. This paper summarises current “best practices” in communication of evidence-based numeric outcomes for developers of patient decision aids (PtDAs) and other health communication tools. Method An expert consensus group of fourteen researchers from North America, Europe, and Australasia identified eleven main issues in risk communication. Two experts for each issue wrote a “state of the art” summary of best evidence, drawing on the PtDA, health, psychological, and broader scientific literature. In addition, commonly used terms were defined and a set of guiding principles and key messages derived from the results. Results The eleven key components of risk communication were: 1) Presenting the chance an event will occur; 2) Presenting changes in numeric outcomes; 3) Outcome estimates for test and screening decisions; 4) Numeric estimates in context and with evaluative labels; 5) Conveying uncertainty; 6) Visual formats; 7) Tailoring estimates; 8) Formats for understanding outcomes over time; 9) Narrative methods for conveying the chance of an event; 10) Important skills for understanding numerical estimates; and 11) Interactive web-based formats. Guiding principles from the evidence summaries advise that risk communication formats should reflect the task required of the user, should always define a relevant reference class (i.e., denominator) over time, should aim to use a consistent format throughout documents, should avoid “1 in x” formats and variable denominators, consider the magnitude of numbers used and the possibility of format bias, and should take into account the numeracy and graph literacy of the audience. Conclusion A substantial and rapidly expanding evidence base exists for risk communication. Developers of tools to facilitate evidence-based decision making should apply these principles to improve the quality of risk communication in practice.
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              A systematic development process for patient decision aids

              Background The original version of the International Patient Decision Aid Standards (IPDAS) recommended that patient decision aids (PtDAs) should be carefully developed, user-tested and open to scrutiny, with a well-documented and systematically applied development process. We carried out a review to check the relevance and scope of this quality dimension and, if necessary, to update it. Methods Our review drew on three sources: a) published papers describing PtDAs evaluated in randomised controlled trials and included in the most recent Cochrane Collaboration review; b) linked papers cited in the trial reports that described how the PtDAs had been developed; and c) papers and web reports outlining the development process used by organisations experienced in developing multiple PtDAs. We then developed an extended model of the development process indicating the various steps on which documentation is required, as well as a checklist to assess the frequency with which each of the elements was publicly reported. Results Key features common to all patient decision aid (PtDA) development processes include: scoping and design; development of a prototype; ‘alpha’ testing with patients and clinicians in an iterative process; ‘beta’ testing in ‘real life’ conditions (field tests); and production of a final version for use and/or further evaluation. Only about half of the published reports on the development of PtDAs that we reviewed appear to have been field tested with patients, and even fewer had been reviewed or tested by clinicians not involved in the development process. Very few described a distribution strategy, and surprisingly few (17%) described a method for reviewing and synthesizing the clinical evidence. We describe a model development process that includes all the original elements of the original IPDAS criterion, expanded to include consideration of format and distribution plans as well as prototype development. Conclusions The case for including each of the elements outlined in our model development process is pragmatic rather than evidence-based. Optimal methods for ensuring that each stage of the process is carried out effectively require further development and testing.
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                Author and article information

                Contributors
                Conference
                July 2018
                July 2018
                : 1-7
                Affiliations
                Bournemouth University Bournemouth, United Kingdom
                Article
                10.14236/ewic/HCI2018.206
                © Ezeh. Published by BCS Learning and Development Ltd. Proceedings of British HCI 2018. Belfast, UK.

                This work is licensed under a Creative Commons Attribution 4.0 Unported License. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/

                Proceedings of the 32nd International BCS Human Computer Interaction Conference
                HCI
                32
                Belfast, UK
                4 - 6 July 2018
                Electronic Workshops in Computing (eWiC)
                Human Computer Interaction Conference
                Product
                Product Information: 1477-9358BCS Learning & Development
                Self URI (journal page): https://ewic.bcs.org/
                Categories
                Electronic Workshops in Computing

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