Development and application of patient decision aids.
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ABSTRACT:
SUBMITTER: Bae JM
PROVIDER: S-EPMC4430759 | biostudies-literature | 2015
REPOSITORIES: biostudies-literature
Publications
Development and application of patient decision aids.
Epidemiology and health 20150408
With the current overdiagnosis of thyroid cancer resulting from routine screening in Korea, it is necessary to educate the public that not all cancers are malignant. The exposure to patient decision aids (PtDAs) compared to usual care reduced the number of people choosing to undergo prostate-specific antigen screening. This article introduces the definition, usefulness, and developmental processes of PtDAs and suggests the urgent need for a Korean PtDA related to thyroid cancer screening. ...[more]
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Project description:BackgroundThe 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.MethodsOur 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.ResultsKey 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.ConclusionsThe 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.
| S-EPMC4044159 | biostudies-literature
Project description:BackgroundA 2017 systematic review suggested patient engagement in clinical trials has been limited, with little active engagement in trial design or data analysis, interpretation or dissemination. Additionally, there remains limited sex/gender reporting in clinical trial research.ObjectivesThe overall goal of this project was to disseminate sex/gender knowledge and build capacity for patient engagement in clinical trials. Specific objectives were to (1) create capacity and identify opportunities for patient engagement in clinical trials and sponsor- or investigator-led activities (e.g. clinical trial design and conduct); and (2) enhance new/early investigator sex/gender knowledge and skills related to patient-oriented research (POR).MethodsWe used the Canadian Institutes of Health Research Strategy for Patient-Oriented Research (SPOR) Capacity Development Framework and the SPOR Patient Engagement Framework to guide three phases of this project: (1) conduct a scoping review using methods described by the Evidence for Policy and Practice Information (EPPI) and the Coordinating Centre at the Institute of Education (Phase 1); (2) host a 1-day POR consultation workshop (Phase 2); and (3) deliver a new/early investigator POR training day (Phase 3). Six electronic databases (CINAHL, MEDLINE, EMBASE, PsychInfo, the Cochrane Library, and AMED) were searched from 1996 using keywords and Medical Subject Heading (MeSH) terms in accordance with the International Association for Public Participation (IAP2) and the search criteria in the bibliographic databases. Standard approaches were used to search the grey literature.ResultsA total of 79 studies and over 150 websites were subject to data abstraction by team members, capturing information on sex/gender and SPOR's patient engagement guiding principles of inclusiveness, support, mutual respect, and co-building. Results were presented to 32 key stakeholders at the consultation workshop and input was sought on next steps using nominal group techniques. Based on the plethora of existing POR resources, relevant POR information from the scoping review was collated into two decision aids (patient and investigator) to determine readiness to engage with/as a patient partner in a clinical trial. The decision aids were presented at a POR training day with 88 new/early investigators, clinicians, patient partners and decision makers. The decision aids showed 'good' usability, assessed using the System Usability Scale (SUS). Attendees thought the decision aids were engaging, they increased their understanding of sex/gender, patient engagement and POR, and they would recommend them to others. POR principles and practices were integrated across all phases of the project. Patient partners (1) identified research priorities/search terms; (2) collected/analyzed data; (3) designed the patient partner decision aid; and (4) disseminated the results through presentation.ConclusionOur digital patient partner and investigator decision aids are the first to provide information technology to deliver sex/gender, POR knowledge, and decision support beyond the traditional decision aids used for health screening and/or treatment decisions. The decision aids have the potential to make a significant contribution to Canada's Strategy for POR and support the collaborative efforts of patients and investigators to build a sustainable, accessible and equitable health care system.
| S-EPMC7655585 | biostudies-literature
Project description:BackgroundThe purpose of the study was to examine patients' understanding of the revised screening mammogram guidelines released by the United States Preventive Services Task Force (USPSTF) in 2009 addressing age at initiation and frequency of screening mammography.MethodsPatients from the Departments of Family Medicine, Internal Medicine, and Obstetrics and Gynecology (n = 150) at a tertiary care medical center in the United States completed a survey regarding their understanding of the revised USPSTF guidelines following their release, within four to six months of their scheduled mammogram (March 2010 to May 2010).ResultsOf the patients surveyed, 97/147 (67%) indicated increased confusion regarding the age and frequency of screening mammography, 61/148 (41%) reported increased anxiety about mammograms, and 58/146 (40%) reported anxiety about their own health status following the release of the revised screening guidelines. Most of the patients surveyed, 111/148 (75%), did not expect to change their timing or frequency of screening mammograms in the future.ConclusionResults from this survey suggested increased confusion and possibly an increase in patients' anxiety related to screening mammography and their own health status following the release of the revised USPSTF screening mammogram guidelines to the public and subsequent media portrayal of the revised guidelines. Although the study did not specifically address causality for these findings, the results highlight the need for improvements in the communication of guidelines to patients and the public. Development of shared decision-making tools and outcomes should be considered to address the communication challenge.
| S-EPMC3517367 | biostudies-literature
Project description:BackgroundEffective use of a patient decision aid (PtDA) can be affected by the user's health literacy and the PtDA's characteristics. Systematic reviews of the relevant literature can guide PtDA developers to attend to the health literacy needs of patients. The reviews reported here aimed to assess:MethodsWe reviewed literature for evidence relevant to these two aims. When high-quality systematic reviews existed, we summarized their evidence. When reviews were unavailable, we conducted our own systematic reviews.ResultsAim 1: In an existing systematic review of PtDA trials, lower health literacy was associated with lower patient health knowledge (14 of 16 eligible studies). Fourteen studies reported practical design strategies to improve knowledge for lower health literacy patients. In our own systematic review, no studies reported on values clarity per se, but in 2 lower health literacy was related to higher decisional uncertainty and regret. Lower health literacy was associated with less desire for involvement in 3 studies, less question-asking in 2, and less patient-centered communication in 4 studies; its effects on other measures of patient involvement were mixed. Only one study assessed the effects of a health literacy intervention on outcomes; it showed that using video to improve the salience of health states reduced decisional uncertainty. Aim 2: In our review of 97 trials, only 3 PtDAs overtly addressed the needs of lower health literacy users. In 90% of trials, user health literacy and readability of the PtDA were not reported. However, increases in knowledge and informed choice were reported in those studies in which health literacy needs were addressed.ConclusionLower health literacy affects key decision-making outcomes, but few existing PtDAs have addressed the needs of lower health literacy users. The specific effects of PtDAs designed to mitigate the influence of low health literacy are unknown. More attention to the needs of patients with lower health literacy is indicated, to ensure that PtDAs are appropriate for lower as well as higher health literacy patients.
| S-EPMC4042520 | biostudies-literature
Project description:IntroductionDecision aids (DAs) are helpful instruments used to support shared decision making (SDM). Patients with atrial fibrillation (AF) face complex decisions regarding stroke prevention strategies. While a few DAs have been made for AF stroke prevention, an encounter DA (EDA) and patient DA (PDA) have not been created to be used in conjunction with each other before.DesignUsing iterative user-centered design, we developed 2 DAs for anticoagulation choice and stroke prevention in AF. Prototypes were created, and we elicited feedback from patients and experts via observations of encounters, usability testing, and semistructured interviews.ResultsUser testing was done with 33 experts (in AF and SDM) and 51 patients from 6 institutions. The EDA and PDA underwent 1 and 4 major iterations, respectively. Major differences between the DAs included AF pathophysiology and a preparation to meet with the clinician in the PDA as well as different language throughout. Content areas included personalized stroke risk, differences between anticoagulants, and risks of bleeding. Based on user feedback, developers 1) addressed feelings of isolation with AF, 2) improved navigation options, 3) modified content and flow for users new to AF and those experienced with AF, 4) updated stroke risk pictographs, and 5) added structure to the preparation for decision making in the PDA.LimitationsThese DAs focus only on anticoagulation for stroke prevention and are online, which may limit participation for those less comfortable with technology.ConclusionsDesigning complementary DAs for use in tandem or separately is a new method to support SDM between patients and clinicians. Extensive user testing is essential to creating high-quality tools that best meet the needs of those using them.HighlightsFirst-time complementary encounter and patient decision aids have been designed to work together or separately.User feedback led to greater structure and different experiences for patients naïve or experienced with anticoagulants in patient decision aids.Online tools allow for easier dissemination, use in telehealth visits, and updating as new evidence comes out.
| S-EPMC10765759 | biostudies-literature
Project description:Decision aids (DAs) are interventions designed to help people make specific and deliberative choices among options by providing information about the options and outcomes that is relevant to a person's health status.There is an ongoing discussion about the quality of DAs. The present article provides an overview on systematic approaches using various quality criteria. However, these evaluation guides are not yet implemented. Up to now quality assessment of DAs is often limited to the evidence on efficacy through controlled trials using single-outcome measures. Since DAs are multi-component interventions, single-outcome trials are not sufficient for complete quality assessment. Consideration of theoretical founding and the development process is required. In an earlier paper we proposed a novel concept of quality to meet this challenge. We introduced MATRIX a guide for quality assessment of DAs aimed at disclosing the rationale behind underpinning theories, methods, and goals of a DA. The present paper reports how the development of MATRIX progressed including results of pre-testing and a feasibility study. We present the revised version of MATRIX, explain its basic concept, and describe the way to use it.
| S-EPMC2736522 | biostudies-literature
Project description:BackgroundProviding patient-centered care requires that patients partner in their personal health-care decisions to the full extent desired. Patient decision aids facilitate processes of shared decision-making between patients and their clinicians by presenting relevant scientific information in balanced, understandable ways, helping clarify patients' goals, and guiding decision-making processes. Although international standards stipulate that patients and clinicians should be involved in decision aid development, little is known about how such involvement currently occurs, let alone best practices. This systematic review consisting of three interlinked subreviews seeks to describe current practices of user involvement in the development of patient decision aids, compare these to practices of user-centered design, and identify promising strategies.Methods/designA research team that includes patient and clinician representatives, decision aid developers, and systematic review method experts will guide this review according to the Cochrane Handbook and PRISMA reporting guidelines. A medical librarian will hand search key references and use a peer-reviewed search strategy to search MEDLINE, EMBASE, PubMed, Web of Science, the Cochrane Library, the ACM library, IEEE Xplore, and Google Scholar. We will identify articles across all languages and years describing the development or evaluation of a patient decision aid, or the application of user-centered design or human-centered design to tools intended for patient use. Two independent reviewers will assess article eligibility and extract data into a matrix using a structured pilot-tested form based on a conceptual framework of user-centered design. We will synthesize evidence to describe how research teams have included users in their development process and compare these practices to user-centered design methods. If data permit, we will develop a measure of the user-centeredness of development processes and identify practices that are likely to be optimal.DiscussionThis systematic review will provide evidence of current practices to inform approaches for involving patients and other stakeholders in the development of patient decision aids. We anticipate that the results will help move towards the establishment of best practices for the development of patient-centered tools and, in turn, help improve the experiences of people who face difficult health decisions.Systematic review registrationPROSPERO CRD42014013241.
| S-EPMC4328638 | biostudies-literature
Project description:IntroductionThis paper presents the preliminary results of a decision-tree analysis of Patient Decision Aids (PDA). PDAs are online or offline tools used to structure health information, elicit relevant values and emphasize the decision as a process, in ways that help patients make more informed health decisions individually or with relevant others.MethodTwenty PDAs are randomly selected from the International Patient Decision Aids Standards (IPDAS) ( https://decisionaid.ohri.ca/AZlist.html ) approved list. An evaluation tool is built bottom-up and top-down and results are described in terms of communicating uncertainty, completeness of the decision tree, ambiguous or misleading phrasing, overall strategies suggested within personal stories.ResultsTwelve of the analyzed PDAs had branches of the decision tree which were not discussed in the tool and 6 had logically ambiguous phrasing. Many tools included dichotomous options, when the option range was wider. Several options were clustered within the "Do not take/Do not do" option and thus the PDA failed to provide all comparisons necessary to make a decision. Some tools employ expressions that do not differentiate between lack of information and known negative effects. Other tools provide unequal amounts or non-comparable bits of information about the options.ConclusionThese results indicate a very loose range of interpretations of what constitutes an option, a treatment, and a treatment option. It thus emphasizes a gap between theory and practice in the evaluation of PDAs. Future developments of PDA evaluation tools should keep track of missing decision tree branches, accurate communication of uncertainty, ambiguity, and lack of knowledge and consider using measures for evaluating the completeness of the option spectrum at an agreed period in time.
| S-EPMC6642566 | biostudies-literature
Project description:BackgroundPatient decision aids (PtDAs) are structured clinical tools that facilitate shared decision-making. Two important treatment decisions for patients with differentiated thyroid cancer (DTC), which could benefit from PtDAs, are as follows (1): the extent of surgery decision in patients with low-risk DTC and (2) the decision to start or delay starting the treatment with tyrosine kinase inhibitors (TKIs) in patients with advanced tumors.Material and methodsPtDAs for these two decisions were developed using the International Patient Decision Aids Standards (IPDAS) quality criteria in an iterative process of prototype development via alpha and beta testing by patients and physicians. The information content of the PtDAs was based on the available literature, current guidelines, and patient's needs, preferences, and values.ResultsThe web-based PtDAs underwent two rounds of alpha testing, revisions, and beta testing. The PtDAs have the same structure, consisting of six steps: a general introduction, information about the treatment options, comparing the treatment options, knowledge questions, a values clarification exercise, and saving the information. The alpha testing (n = 8 patients, n = 10 physicians) showed that the PtDAs were highly acceptable and usable for decision-making. Results of the beta testing in 20 patients showed that two patients did not use the PtDA; the other 18 patients found that the PtDAs were readable (n = 17) and helpful (n = 14) for decision-making. All patients recommend using the PtDAs.ConclusionsEvidence-based PtDAs were created for patients with DTC for two different treatment decisions. Our final version was judged to be clear, balanced, and helpful in decision-making.
| S-EPMC10264809 | biostudies-literature
Project description:BackgroundPatient decision aids are increasingly regarded as important components of clinical practice that enable shared decision making (SDM) and evidence based patient choice. Despite broad acceptance of their value, there remains little evidence of their successful implementation in primary care settings.MethodsHealth care practitioners from five general practice surgeries in northern England participated in focus group sessions around the themes of patient decision aids, patient and practitioner preferences and SDM. Participants included general practitioners (n = 19), practice nurses (n = 5) and auxiliary staff (n = 3). Transcripts were analysed using a framework approach.ResultsWe report a) practitioners' discussion of the current impetus towards sharing decisions and their perspectives on barriers to SDM, and b) the implementation of patient decision aids in practice and impediments such as lack of an evidence base and time available in consultations.ConclusionWe demonstrate two orientations to sharing decisions: practitioner-centred and patient-centred with the former predominating. We argue that it is necessary to rethink the changes required in practice for the implementation of SDM.
| S-EPMC2248564 | biostudies-literature