scholarly journals Developing a web-based patient decision aid for gastrostomy in motor neuron disease: a study protocol

BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e032364
Author(s):  
Rose Maunsell ◽  
Suzanne Bloomfield ◽  
Clare Erridge ◽  
Claire Foster ◽  
Maggi Hardcastle ◽  
...  
Keyword(s):  
Motor Neuron ◽  
Motor Neuron Disease ◽  
Decision Aid ◽  
Decision Aids ◽  
Phase 1 ◽  
Second Phase ◽  
Patient Decision Aid ◽  
Two Phase ◽  
Patient Decision ◽  
Academic Publications

IntroductionMotor neuron disease (MND) is a progressive, incurable disease, characterised by degeneration of the nerves in the brain and spinal cord. Due to the multisystem effects of the disease, patients are faced with many complex, time-sensitive decisions, one of which is the decision on gastrostomy feeding. There are currently no published decision aids (DAs) to support patients making this decision in the UK. This study will develop and pilot a patient DA to provide evidence-based information on gastrostomy placement and feeding that is relevant to people with MND; communicate the risks and benefits associated with each option; check understanding and clarify personal values and preferences, enabling patients to make a decision congruent with their values and appropriate for them.Methods and analysisA two-phase process, observing the International Patient Decision Aid Standards, will be used to develop the DA, over 24 months starting January 2019. Phase 1 will use literature reviews and stakeholder interviews and surveys to identify essential content for the DA, and explore the best way to present this. In the second phase, a prototype DA will be developed and revised using stakeholder feedback in an iterative process. Stakeholders will include individuals with MND, their carers and the healthcare professionals working with them.Ethics and disseminationEthical approval for the study has been granted by West of Scotland Research Ethics Service, reference 19/WS/0078. Study findings will be disseminated through academic and non-academic publications, conference presentations, stakeholder websites and social media. A feasibility study will follow to explore the acceptability and practicality of the DA for patients, carers and HCPs in practice and to assess whether the DA shows promise of being beneficial for the intended population.

scholarly journals Systematic Development of Patient Decision Aids: An Update from the IPDAS Collaboration

2021 ◽  
pp. 0272989X2110141
Author(s):  
Holly O. Witteman ◽  
Kristin G. Maki ◽  
Gratianne Vaisson ◽  
Jeanette Finderup ◽  
Krystina B. Lewis ◽  
...  
Keyword(s):  
Decision Aid ◽  
Decision Aids ◽  
Rapid Development ◽  
User Involvement ◽  
User Centered Design ◽  
Patient Decision Aid ◽  
Patient Decision Aids ◽  
Patient Decision ◽  
Development Processes ◽  
Systematic Development

Background The 2013 update of the evidence informing the quality dimensions behind the International Patient Decision Aid Standards (IPDAS) offered a model process for developers of patient decision aids. Objective To summarize and update the evidence used to inform the systematic development of patient decision aids from the IPDAS Collaboration. Methods To provide further details about design and development methods, we summarized findings from a subgroup ( n = 283 patient decision aid projects) in a recent systematic review of user involvement by Vaisson et al. Using a new measure of user-centeredness (UCD-11), we then rated the degree of user-centeredness reported in 66 articles describing patient decision aid development and citing the 2013 IPDAS update on systematic development. We contacted the 66 articles’ authors to request their self-reports of UCD-11 items. Results The 283 development processes varied substantially from minimal iteration cycles to more complex processes, with multiple iterations, needs assessments, and extensive involvement of end users. We summarized minimal, medium, and maximal processes from the data. Authors of 54 of 66 articles (82%) provided self-reported UCD-11 ratings. Self-reported scores were significantly higher than reviewer ratings (reviewers: mean [SD] = 6.45 [3.10]; authors: mean [SD] = 9.62 [1.16], P < 0.001). Conclusions Decision aid developers have embraced principles of user-centered design in the development of patient decision aids while also underreporting aspects of user involvement in publications about their tools. Templates may reduce the need for extensive development, and new approaches for rapid development of aids have been proposed when a more detailed approach is not feasible. We provide empirically derived benchmark processes and a reporting checklist to support developers in more fully describing their development processes. [Box: see text]

scholarly journals Basing Information on Comprehensive, Critically Appraised, and Up-to-Date Syntheses of the Scientific Evidence: An Update from the International Patient Decision Aid Standards

2021 ◽  
pp. 0272989X2199662
Author(s):  
Tammy C. Hoffmann ◽  
Mina Bakhit ◽  
Marie-Anne Durand ◽  
Lilisbeth Perestelo-Pérez ◽  
Catherine Saunders ◽  
...  
Keyword(s):  
Decision Aid ◽  
Scientific Evidence ◽  
Decision Aids ◽  
Future Research ◽  
Patient Decision Aid ◽  
Patient Decision Aids ◽  
Research Areas ◽  
Patient Decision ◽  
Evidence Quality ◽  
Emerging Issues

Background Patients and clinicians expect the information in patient decision aids to be based on the best available research evidence. The objectives of this International Patient Decision Aid Standards (IPDAS) review were to 1) check the currency of, and where needed, update evidence for the domain of “basing the information in decision aids on comprehensive, critically appraised, and up-to-date syntheses of the evidence”; 2) analyze the evidence characteristics of decision aids; and 3) propose updates to relevant IPDAS criteria. Methods We searched MEDLINE and PubMed to inform updates of this domain’s definitions, justifications, and components. We also searched 5 sources to identify all publicly available decision aids ( N = 471). Two assessors independently extracted each aid’s evidence characteristics. Results Minor updates to the definitions and theoretical justifications of this IPDAS domain are provided and changes to relevant IPDAS criteria proposed. Nearly all aids (97%) provided a year of creation/update, but most (81%) did not report an explicit update or expiration policy. No scientific references were cited in 33% of aids. Of the 314 that cited at least 1 reference, 39% cited at least 1 guideline, 44% cited at least 1 systematic review, and 23% cited at least 1 randomized trial. In 35%, it was unclear what statement in the aid the citations referred to. Only 14% reported any of the processes used to find and decide on evidence inclusion. Only 14% reported the evidence quality. Many emerging issues and future research areas were identified. Conclusions Although many emerging issues need to be addressed, this IPDAS domain is validated and criteria refined. High-quality patient decision aids should be based on comprehensive and up-to-date syntheses of critically appraised evidence.

Do Patient Decision Aids Meet Effectiveness Criteria of the International Patient Decision Aid Standards Collaboration? A Systematic Review and Meta-analysis

2007 ◽  
Vol 27 (5) ◽  
pp. 554-574 ◽  
Author(s):  
Annette M. O'Connor ◽  
Dawn Stacey ◽  
Michael J. Barry ◽  
Nananda F. Col ◽  
Karen B. Eden ◽  
...  
Keyword(s):  
Systematic Review ◽  
Decision Aid ◽  
Meta Analysis ◽  
Decision Aids ◽  
Patient Decision Aid ◽  
Patient Decision Aids ◽  
Patient Decision

What Is the Effectiveness of Patient Decision Aids for Cancer-Related Decisions? A Systematic Review Subanalysis

2018 ◽  
pp. 1-13 ◽  
Author(s):  
Kristen McAlpine ◽  
Krystina B. Lewis ◽  
Lyndal J. Trevena ◽  
Dawn Stacey
Keyword(s):  
Decision Making ◽  
Cancer Screening ◽  
Decision Aid ◽  
Weighted Mean Difference ◽  
Decision Aids ◽  
Decision Making Process ◽  
Patient Decision Aid ◽  
Weighted Mean ◽  
Patient Decision Aids ◽  
Patient Decision

Purpose To determine the effectiveness of patient decision aids when used with patients who face cancer-related decisions. Patients and Methods Two reviewers independently screened the 105 trials in the original 2017 Cochrane review to identify eligible trials of patient decision aids across the cancer continuum. Primary outcomes were attributes of the choice and decision-making process. Secondary outcomes were patient behavior and health system effects. A meta-analysis was conducted for similar outcome measures. Results Forty-six trials evaluated patient decision aids for cancer care, including 27 on screening decisions (59%), 12 on treatments (26%), four on genetic testing (9%), and three on prevention (6%). Common decisions were aboutprostate cancer screening (30%), colorectal cancer screening (22%), breast cancer treatment (13%), and prostate cancer treatment (9%). Compared with the control groups (usual care or alternative interventions), the patient decision aid group improved the match between the chosen option and the features that mattered most to the patient as demonstrated by improved knowledge (weighted mean difference, 12.88 of 100; 95% CI, 9.87 to 15.89; 24 trials), accurate risk perception (risk ratio [RR], 1.77; 95% CI, 1.22 to 2.56; six trials), and value-choice agreement (RR, 2.76; 95% CI, 1.57 to 4.84; nine trials). Compared with controls, the patient decision aid group improved the decision-making process with decreased decisional conflict (weighted mean difference, −9.56 of 100; 95% CI, −13.90 to −5.23; 12 trials), reduced clinician-controlled decision making (RR, 0.57; 95% CI, 0.41 to 0.79; eight trials), and fewer patients being indecisive (RR, 0.59; 95% CI, 0.45 to 0.78; nine trials). Conclusion Patient decision aids improve the attributes of the choice made and decision-making process for patients who face cancer-related decisions.

scholarly journals Measures of Decision Aid Quality Are Preference-Sensitive and Interest-Conflicted – 1: Normative Measures

2020 ◽  
Author(s):  
Jack Dowie ◽  
Mette Kjer Kaltoft ◽  
Vije Kumar Rajput
Keyword(s):  
Gold Standard ◽  
Decision Aid ◽  
Decision Aids ◽  
Quality Measures ◽  
Healthcare Research ◽  
Patient Decision Aid ◽  
High Quality ◽  
Patient Decision ◽  
Wide Definition ◽  
Definition Of

The belief that following rigorous inclusive methods will eliminate bias from ‘quality’ measures ignores the preferences necessarily embedded in any formative instrument. These preferences almost always reflect the interests of its developers when one uses the wide definition of ‘interest’ appropriate in healthcare research and provision. We focus on the International Patient Decision Aid Standards instrument, a popular normative measure of decision aid quality. Drawing on its application to a set of 23 breast cancer screening decision aids, we show the effects of modifications that reflect our own different interest-conflicted preferences. It is emphasised that the only objection is to the implication that any formative instrument should be promoted or treated as the ‘the gold standard’, without a conflict of interests disclaimer, and to the implication that other instruments cannot provide equally valid, high-quality measures.

Study protocols for the development and randomized controlled pilot trial of a patient decision aid to facilitate women's choice between oral and LAI ART for HIV (Preprint)

2021 ◽  
Author(s):  
Morgan M. Philbin ◽  
Tara McCrimmon ◽  
Victoria Shaffer ◽  
Deanna Kerrigan ◽  
Margaret Pereyra ◽  
...  
Keyword(s):  
Decision Making ◽  
Mixed Methods ◽  
Decision Aid ◽  
Phase 1 ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Phase 3 ◽  
Web Based ◽  
Randomized Controlled ◽  
Patient Decision

BACKGROUND Many women with HIV (WWH) have suboptimal adherence to oral antiretroviral therapy (ART) due to multilevel barriers to HIV care access and retention. A long-acting injectable (LAI) version of ART was approved by the Food and Drug Administration in January 2021 and has the potential to overcome many of these barriers by eliminating the need for daily pill-taking. However, it may not be optimal for all WWH. It is critical to develop tools that facilitate patient-provider shared decision making about oral versus LAI ART modalities to promote women’s adherence and long-term HIV outcomes. OBJECTIVE This study will develop and pilot test a web-based patient decision aid, called i.ART+support (iARTs). This decision aid aims to support shared decision-making between WWH and their providers, and help women choose between oral and LAI HIV treatment. METHODS The study will occur in three phases. In Phase 1, we will utilize a mixed-methods approach to collect data from WWH and medical and social service providers to inform i.ARTs content. During Phase 2, we will conduct focus groups with WWH and providers to refine i.ARTs content and develop the web-based decision aid. In Phase 3, i.ARTs will be tested in a randomized controlled trial (RCT) with n=180 women in Miami, FL and assessed for feasibility, usability and acceptability, as well as to evaluate the associations between receiving i.ARTs and viral suppression, ART refills, and clinic attendance. RESULTS Phase 1 participant recruitment began in September 2021. CONCLUSIONS This study is the first to develop a web-based patient decision aid to support WWH choices between oral and LAI ART. Its strengths include the incorporation of both patient and provider perspectives, a mixed-methods design, and implementation in a real-world clinical setting. CLINICALTRIAL We will apply for Clinicaltrials.gov registration prior to Phase 3 when we enroll our first participant in the RCT. This is anticipated to occur in April 2023.

scholarly journals Standards for UNiversal reporting of patient Decision Aid Evaluation studies: the development of SUNDAE Checklist

2017 ◽  
Vol 27 (5) ◽  
pp. 380-388 ◽  
Author(s):  
Karen R Sepucha ◽  
Purva Abhyankar ◽  
Aubri S Hoffman ◽  
Hilary L Bekker ◽  
Annie LeBlanc ◽  
...  
Keyword(s):  
Decision Aid ◽  
Evaluation Studies ◽  
Decision Aids ◽  
Delphi Process ◽  
Reporting Guidelines ◽  
Patient Decision Aid ◽  
Conference Calls ◽  
Two Stage ◽  
Patient Decision ◽  
High Level

BackgroundPatient decision aids (PDAs) are evidence-based tools designed to help patients make specific and deliberated choices among healthcare options. The International Patient Decision Aid Standards (IPDAS) Collaboration review papers and Cochrane systematic review of PDAs have found significant gaps in the reporting of evaluations of PDAs, including poor or limited reporting of PDA content, development methods and delivery. This study sought to develop and reach consensus on reporting guidelines to improve the quality of publications evaluating PDAs.MethodsAn international workgroup, consisting of members from IPDAS Collaboration, followed established methods to develop reporting guidelines for PDA evaluation studies. This paper describes the results from three completed phases: (1) planning, (2) drafting and (3) consensus, which included a modified, two-stage, online international Delphi process. The work was conducted over 2 years with bimonthly conference calls and three in-person meetings. The workgroup used input from these phases to produce a final set of recommended items in the form of a checklist.ResultsThe SUNDAE Checklist (Standards for UNiversal reporting of patient Decision Aid Evaluations) includes 26 items recommended for studies reporting evaluations of PDAs. In the two-stage Delphi process, 117/143 (82%) experts from 14 countries completed round 1 and 96/117 (82%) completed round 2. Respondents reached a high level of consensus on the importance of the items and indicated strong willingness to use the items when reporting PDA studies.ConclusionThe SUNDAE Checklist will help ensure that reports of PDA evaluation studies are understandable, transparent and of high quality. A separate Explanation and Elaboration publication provides additional details to support use of the checklist.

scholarly journals Explanation and elaboration of the Standards for UNiversal reporting of patient Decision Aid Evaluations (SUNDAE) guidelines: examples of reporting SUNDAE items from patient decision aid evaluation literature

2018 ◽  
Vol 27 (5) ◽  
pp. 389-412 ◽  
Author(s):  
Aubri S Hoffman ◽  
Karen R Sepucha ◽  
Purva Abhyankar ◽  
Stacey Sheridan ◽  
Hilary Bekker ◽  
...  
Keyword(s):  
Decision Aid ◽  
Decision Aids ◽  
Patient Decision Aid ◽  
Patient Decision Aids ◽  
Patient Decision

This Explanation and Elaboration (E&E) article expands on the 26 items in the Standards for UNiversal reporting of Decision Aid Evaluations guidelines. The E&E provides a rationale for each item and includes examples for how each item has been reported in published papers evaluating patient decision aids. The E&E focuses on items key to reporting studies evaluating patient decision aids and is intended to be illustrative rather than restrictive. Authors and reviewers may wish to use the E&E broadly to inform structuring of patient decision aid evaluation reports, or use it as a reference to obtain details about how to report individual checklist items.

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