Dataset Information

Reducing complexity of patient decision aids for community-based older adults with dementia and their caregivers: multiple case study of Decision Boxes.

ABSTRACT:

Objectives

To identify patient decision aids' features to limit their complexity for older adults with dementia and their family caregivers.

Design

Mixed method, multiple case study within a user-centred design (UCD) approach.

Setting

Community-based healthcare in the province of Quebec in Canada.

Participants

23 older persons (aged 65+ years) with dementia and their 27 family caregivers.

Results

During three UCD evaluation-modification rounds, participants identified strengths and weaknesses of the patient decision aids' content and visual design that influenced their complexity. Weaknesses of content included a lack of understanding of the decision aids' purpose and target audience, missing information, irrelevant content and issues with terminology and sentence structure. Weaknesses of visual design included critics about the decision aids' general layout (density, length, navigation) and their lack of pictures. In response, the design team implemented a series of practical features and design strategies, comprising: a clear expression of the patient decision aids' purpose through simple text, picture and personal stories; systematic and frequent use of pictograms illustrating key points and helping structure patient decision aids' general layout; a glossary; removal of scientific references from the main document; personal stories to clarify more difficult concepts; a contact section to facilitate implementation of the selected option; GRADE ratings to convey the quality of the evidence; a values clarification exercise formatted as a checklist and presented at the beginning of the document to streamline navigation; involvement of a panel of patient/caregiver partners to guide expression of patient priorities; editing of the text to a sixth grade reading level; UCD process to optimise comprehensiveness and relevance of content and training of patients/caregivers in shared decision-making.

Conclusions

The revised template for patient decision aids is designed to meet the needs of adults living with dementia and their caregivers better, which may translate into fewer evaluation-modification rounds.

SUBMITTER: Bilodeau G

PROVIDER: S-EPMC6528048 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Reducing complexity of patient decision aids for community-based older adults with dementia and their caregivers: multiple case study of Decision Boxes.

Bilodeau Gabriel G Witteman Holly H Légaré France F Lafontaine-Bruneau Juliette J Voyer Philippe P Kröger Edeltraut E Tremblay Marie-Claude MC Giguere Anik M C AMC

BMJ open 20190509 5

<h4>Objectives</h4>To identify patient decision aids' features to limit their complexity for older adults with dementia and their family caregivers.<h4>Design</h4>Mixed method, multiple case study within a user-centred design (UCD) approach.<h4>Setting</h4>Community-based healthcare in the province of Quebec in Canada.<h4>Participants</h4>23 older persons (aged 65+ years) with dementia and their 27 family caregivers.<h4>Results</h4>During three UCD evaluation-modification rounds, participants id ...[more]

PMID: 31072861

Similar Datasets

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.

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:Objectives Decision aids (DAs) for clients in home and community care can support shared decision-making (SDM) with patients, healthcare teams and informal caregivers. We aimed to identify DAs developed for home and community care, verify their adherence to international DA criteria and explore the involvement of interprofessional teams in their development and use. Design Systematic review reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Data sources Six electronic bibliographic databases (MEDLINE, Embase, CINAHL Plus, Web of Science, PsycINFO and the Cochrane Library) from inception to November 2019, social media and grey literature websites up to January 2021. Eligibility criteria DAs designed for home and community care settings or including home care or community services as options. Data extraction and synthesis Two reviewers independently reviewed citations. Analysis consisted of a narrative synthesis of outcomes and a thematic analysis. DAs were appraised using the International Patient Decision Aid Standards (IPDAS). We collected information on the involvement of interprofessional teams, including nurses, in their development and use. Results After reviewing 10 337 database citations and 924 grey literature citations, we extracted characteristics of 33 included DAs. DAs addressed a variety of decision points. Nearly half (42%) were relevant to older adults. Several DAs did not meet IPDAS criteria. Involvement of nurses and interprofessional teams in the development and use of DAs was minimal (33.3% of DAs). Conclusion DAs concerned a variety of decisions, especially those related to older people. This reflects the complexity of decisions and need for better support in this sector. There is little evidence about the involvement of interprofessional teams in the development and use of DAs in home and community care settings. An interprofessional approach to designing DAs for home care could facilitate SDM with people being cared for by teams. PROSPERO registration number CRD42020169450.

Dataset Information

Reducing complexity of patient decision aids for community-based older adults with dementia and their caregivers: multiple case study of Decision Boxes.

Objectives

Design

Setting

Participants

Results

Conclusions

Publications

Reducing complexity of patient decision aids for community-based older adults with dementia and their caregivers: multiple case study of Decision Boxes.

Similar Datasets

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