Dataset Information

Addressing health literacy in patient decision aids.

ABSTRACT:

Background

Effective 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:

Methods

We 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.

Results

Aim 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.

Conclusion

Lower 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.

SUBMITTER: McCaffery KJ

PROVIDER: S-EPMC4042520 | biostudies-literature | 2013

REPOSITORIES: biostudies-literature

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Publications

Addressing health literacy in patient decision aids.

McCaffery Kirsten J KJ Holmes-Rovner Margaret M Smith Sian K SK Rovner David D Nutbeam Don D Clayman Marla L ML Kelly-Blake Karen K Wolf Michael S MS Sheridan Stacey L SL

BMC medical informatics and decision making 20131129

<h4>Background</h4>Effective 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:<h4>Methods</h4>We reviewed literature for evidence relevant to these two aims. When high-quality systematic reviews existed, we summarized their evidence. When reviews were unavailable, we ...[more]

PMID: 24624970

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Project description:BackgroundRecent surveys have revealed many adults have basic or below basic health literacy, which is linked to medical errors, increased illness, and compromised public health. Health literacy as a concept is multi-faceted extending beyond the individual to include social structures and the context in which health information is being accessed. Delivering health information via mobile devices (mHealth) expands the amount of information available while presenting challenges to ensuring these materials are suitable for a variety of literacy needs. The aims of this study are to discover how health literacy is addressed and evaluated in mHealth app development.MethodsA scoping review of 5 peer-reviewed databases was conducted. Eligible articles were written in English, addressed general literacy or mHealth/digital/eHealth literacy, and collected literacy information in order to incorporate literacy into the design and/or modification of an app or collected literacy information to describe the population being studied. The "Health Literacy Online" (HLO) United States (U.S.) government guide was used as a framework.ResultsThirty-two articles were reviewed. Articles included health literacy recommendations for all HLO categories and some recommendations not aligned with these categories. Most articles addressed health literacy using specific HLO categories though none incorporated every HLO category. The most common categories addressed engagement and testing of mHealth content. Though several studies addressed health literacy through a formal assessment tool, most did not. Evaluation of health literacy in mHealth was end-user focused and did not extensively evaluate content for fit to a variety of individuals with limited health literacy.ConclusionsThe recommendations seen consistently in our results in conjunction with formal HLO categories can act as beginning steps towards development of a health literacy evaluation tool for mHealth apps themselves. It is clear efforts are being made to reduce barriers to using mHealth for those with literacy deficits, however, it was also clear that this space has room to be more pragmatic in evaluation of mHealth tools for literacy. End user engagement in design and testing is necessary in future mHealth literacy tool development.

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.

Project description:ObjectivesRecent guideline changes for cardiovascular disease (CVD) prevention medication have resulted in calls to implement shared decision-making rather than arbitrary treatment thresholds. Less attention has been paid to existing tools that could facilitate this. Decision aids are well-established tools that enable shared decision-making and have been shown to improve CVD prevention adherence. However, it is unknown how many CVD decision aids are publicly available for patients online, what their quality is like and whether they are suitable for patients with lower health literacy, for whom the burden of CVD is greatest. This study aimed to identify and evaluate all English language, publicly available online CVD prevention decision aids.DesignSystematic review of public websites in August to November 2016 using an environmental scan methodology, with updated evaluation in April 2018. The decision aids were evaluated based on: (1) suitability for low health literacy populations (understandability, actionability and readability); and (2) International Patient Decision Aids Standards (IPDAS).Primary outcome measuresUnderstandability and actionability using the validated Patient Education Materials Assessment Tool for Printed Materials (PEMAT-P scale), readability using Gunning-Fog and Flesch-Kincaid indices and quality using IPDAS V.3 and V.4.ResultsA total of 25 unique decision aids were identified. On the PEMAT-P scale, the decision aids scored well on understandability (mean 87%) but not on actionability (mean 61%). Readability was also higher than recommended levels (mean Gunning-Fog index=10.1; suitable for grade 10 students). Four decision aids met criteria to be considered a decision aid (ie, met IPDAS qualifying criteria) and one sufficiently minimised major bias (ie, met IPDAS certification criteria).ConclusionsPublicly available CVD prevention decision aids are not suitable for low literacy populations and only one met international standards for certification. Given that patients with lower health literacy are at increased risk of CVD, this urgently needs to be addressed.

Project description:BackgroundSome researchers argue that the successful implementation of patient decision aids (PDAs) into clinical workflows depends on their integration into electronic health records (EHRs). Anecdotally, we know that EHR integration is a complex and time-consuming task; yet, the process has not been examined in detail. As part of an implementation project, we examined the work involved in integrating an encounter PDA for symptomatic uterine fibroids into Epic EHR systems.ObjectiveThis study aims to identify the steps and time required to integrate a PDA into the Epic EHR system and examine facilitators and barriers to the integration effort.MethodsWe conducted a case study at 5 academic medical centers in the United States. A clinical champion at each institution liaised with their Epic EHR team to initiate the integration of the uterine fibroid Option Grid PDAs into clinician-facing menus. We scheduled regular meetings with the Epic software analysts and an expert Epic technologist to discuss how best to integrate the tools into Epic for use by clinicians with patients. The meetings were then recorded and transcribed. Two researchers independently coded the transcripts and field notes before categorizing the codes and conducting a thematic analysis to identify the facilitators and barriers to EHR integration. The steps were reviewed and edited by an Epic technologist to ensure their accuracy.ResultsIntegrating the uterine fibroid Option Grid PDA into clinician-facing menus required an 18-month timeline and a 6-step process, as follows: task priority negotiation with Epic software teams, security risk assessment, technical review, Epic configuration; troubleshooting, and launch. The key facilitators of the process were the clinical champions who advocated for integration at the institutional level and the presence of an experienced technologist who guided Epic software analysts during the build. Another facilitator was the use of an emerging industry standard app platform (Health Level 7 Substitutable Medical Applications and Reusable Technologies on Fast Healthcare Interoperability Resources) as a means of integrating the Option Grid into existing systems. This standard platform enabled clinicians to access the tools by using single sign-on credentials and prevented protected health information from leaving the EHR. Key barriers were the lack of control over the Option Grid product developed by EBSCO (Elton B Stephens Company) Health; the periodic Epic upgrades that can result in a pause on new software configurations; and the unforeseen software problems with Option Grid (ie, inability to print the PDA), which delayed the launch of the PDA.ConclusionsThe integration of PDAs into the Epic EHR system requires a 6-step process and an 18-month timeline. The process required support and prioritization from a clinical champion, guidance from an experienced technologist, and a willing EHR software developer team.

Dataset Information

Addressing health literacy in patient decision aids.

Background

Methods

Results

Conclusion

Publications

Addressing health literacy in patient decision aids.

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