Experts' views on the implementation of the prenatal screening decision aid in Iran: A qualitative study

Background & Aim: Patient decision aids are detailed and personalized health education materials that assist patients in decision making. According to expert viewpoints, this study aimed to determine important factors in implementing the prenatal screening decision aid in Iran. Methods & Materials: In this qualitative study, 24 experts, including seven obstetricians, four information scientists, five managers or policymakers, and eight midwives, were selected using purposive and snowball sampling approaches. Semi-structured interviews were conducted to collect the data between January 2020 and June 2020 in Tehran, Iran. A prenatal screening decision aid was presented to the participants, and we asked them to raise their concerns and thoughts regarding the factors influencing the implementation of patient decision aids. We used MAXQDA 10 and applied conventional content analysis for data analysis. Results: Two organizational and personal factors themes were identified to implement Iran's prenatal screening decision aids. Conclusion: We identified the viewpoints of experts regarding major factors in patient decision aids implementation for prenatal screening. Before implementing prenatal screening decision aids in Iran, it would be helpful to consider these organizational and personal factors. Prenatal screening decision aids can provide better information for pregnant women and strengthen their decision-making ability.

Clarifying Values: An Updated and Expanded Systematic Review and Meta-Analysis

Background Patient decision aids should help people make evidence-informed decisions aligned with their values. There is limited guidance about how to achieve such alignment. Purpose To describe the range of values clarification methods available to patient decision aid developers, synthesize evidence regarding their relative merits, and foster collection of evidence by offering researchers a proposed set of outcomes to report when evaluating the effects of values clarification methods. Data Sources MEDLINE, EMBASE, PubMed, Web of Science, the Cochrane Library, and CINAHL. Study Selection We included articles that described randomized trials of 1 or more explicit values clarification methods. From 30,648 records screened, we identified 33 articles describing trials of 43 values clarification methods. Data Extraction Two independent reviewers extracted details about each values clarification method and its evaluation. Data Synthesis Compared to control conditions or to implicit values clarification methods, explicit values clarification methods decreased the frequency of values-incongruent choices (risk difference, –0.04; 95% confidence interval [CI], –0.06 to –0.02; P < 0.001) and decisional conflict (standardized mean difference, –0.20; 95% CI, –0.29 to –0.11; P < 0.001). Multicriteria decision analysis led to more values-congruent decisions than other values clarification methods (χ2 = 9.25, P = 0.01). There were no differences between different values clarification methods regarding decisional conflict (χ2 = 6.08, P = 0.05). Limitations Some meta-analyses had high heterogeneity. We grouped values clarification methods into broad categories. Conclusions Current evidence suggests patient decision aids should include an explicit values clarification method. Developers may wish to specifically consider multicriteria decision analysis. Future evaluations of values clarification methods should report their effects on decisional conflict, decisions made, values congruence, and decisional regret.

Informed Consent for Organ Transplantation in Older Adults: Are Patient Decision Aids the Solution for Successful Implementation of Shared Decision-Making in Transplant Clinical Practice?

"Informed consent (IC) in older adults (≥ 70 years of age) is often complex. This holds even truer in the setting of organ transplantation (OTx), requiring patients to be informed of the risks and benefits associated with multiple options: whether or not to pursue a transplant, to opt for a living – where appropriate – or deceased donor, to consider a variety of choices concerning the potential for poorer organ quality or increased risk of disease transmission and others. IC overlaps with shared decision-making (SDM) in the presence of high-risk procedures, with low levels of certainty, and when two or more treatment alternatives exist. Patient decision aids (PDAs) (i.e. paper-based/electronic evidence-based tools) have been developed to complement and enhance SDM in clinical practice. Studies have proven PDAs to be an effective means to improve transplant knowledge, to foster patient participation, and to diminish decisional conflict across different settings in OTx. However, research is lacking on the effectiveness and appropriateness of these tools in older adults, which are increasingly entitled to receive OTx. The objective of our work is 1) to present the challenges posed by the use of PDAs in this group of patients and 2) to identify gaps so as to inform the agenda for research on this emergent issue. Our findings suggest that future studies should aim to the development, implementation and evaluation of PDAs for the oldest, more vulnerable segments of this specific patient population. "

Providing Balanced Information about Options in Patient Decision Aids: An Update from the International Patient Decision Aid Standards

Background The objective of this International Patient Decision Aids Standard (IPDAS) review is to update and synthesize theoretical and empirical evidence on how balanced information can be presented and measured in patient decision aids (PtDAs). Methods A multidisciplinary team conducted a scoping review using 2 search strategies in multiple electronic databases evaluating the ways investigators defined and measured the balance of information provided about options in PtDAs. The first strategy combined a search informed by the Cochrane Review of the Effectiveness of Decision Aids with a search on balanced information. The second strategy repeated the search published in the 2013 IPDAS update on balanced presentation. Results Of 2450 unique citations reviewed, the full text of 168 articles was screened for eligibility. Sixty-four articles were included in the review, of which 13 provided definitions of balanced presentation, 8 evaluated mechanisms that may introduce bias, and 42 quantitatively measured balanced with methods consistent with the IPDAS criteria in PtDAs. The revised definition of balanced information is, “Objective, complete, salient, transparent, evidence-informed, and unbiased presentation of text and visual information about the condition and all relevant options (with important elements including the features, benefits, harms and procedures of those options) in a way that does not favor one option over another and enables individuals to focus attention on important elements and process this information.” Conclusions Developers can increase the balance of information in PtDAs by informing their structure and design elements using the IPDAS checklist. We suggest that new PtDA components pertaining to balance be evaluated for cognitive bias with experimental methods as well by objectively evaluating patients’ and content experts’ beliefs from multiple perspectives.

A Systematic Review and Meta-Analysis of Patient Decision Aids for Socially Disadvantaged Populations: Update from the International Patient Decision Aid Standards (IDPAS)

Background The effectiveness of patient decision aids (PtDAs) and other shared decision-making (SDM) interventions for socially disadvantaged populations has not been well studied. Purpose To assess whether PtDAs and other SDM interventions improve outcomes or decrease health inequalities among socially disadvantaged populations and determine the critical features of successful interventions. Data Sources MEDLINE, CINAHL, Cochrane, PsycINFO, and Web of Science from inception to October 2019. Cochrane systematic reviews on PtDAs. Study Selection Randomized controlled trials of PtDAs and SDM interventions that included socially disadvantaged populations. Data Extraction Independent double data extraction using a standardized form and the Template for Intervention Description and Replication checklist. Data Synthesis Twenty-five PtDA and 13 other SDM intervention trials met our inclusion criteria. Compared with usual care, PtDAs improved knowledge (mean difference = 13.91, 95% confidence interval [CI] 9.01, 18.82 [I2 = 96%]) and patient-clinician communication (relative risk = 1.62, 95% CI 1.42, 1.84 [I2 = 0%]). PtDAs reduced decisional conflict (mean difference = −9.59; 95% CI −18.94, −0.24 [I2 = 84%]) and the proportion undecided (relative risk = 0.39; 95% CI 0.28, 0.53 [I2 = 75%]). PtDAs did not affect anxiety (standardized mean difference = 0.02, 95% CI −0.22, 0.26 [I2 = 70%]). Only 1 trial looked at clinical outcomes (hemoglobin A1C). Five of the 12 PtDA studies that compared outcomes by disadvantaged standing found that outcomes improved more for socially disadvantaged participants. No evidence indicated which intervention characteristics were most effective. Results were similar for SDM intervention trials. Limitations Sixteen PtDA studies had an overall unclear risk of bias. Heterogeneity was high for most outcomes. Most studies only had short-term follow-up. Conclusions PtDAs led to better outcomes among socially disadvantaged populations but did not reduce health inequalities. We could not determine which intervention features were most effective. [Box: see text]

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

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]

Do Personal Stories Make Patient Decision Aids More Effective? An Update from the International Patient Decision Aids Standards

Background This article evaluates the evidence for the inclusion of patient narratives in patient decision aids (PtDAs). We define patient narratives as stories, testimonials, or anecdotes that provide illustrative examples of the experiences of others that are relevant to the decision at hand. Method To evaluate the evidence for the effectiveness of narratives in PtDAs, we conducted a narrative scoping review of the literature from January 2013 through June 2019 to identify relevant literature published since the last International Patient Decision Aid Standards (IPDAS) update in 2013. We considered research articles that examined the impact of narratives on relevant outcomes or described relevant theoretical mechanisms. Results The majority of the empirical work on narratives did not measure concepts that are typically found in the PtDA literature (e.g., decisional conflict). Yet, a few themes emerged from our review that can be applied to the PtDA context, including the impact of narratives on relevant outcomes (knowledge, behavior change, and psychological constructs), as well as several theoretical mechanisms about how and why narratives work that can be applied to the PtDA context. Conclusion Based on this evidence update, we suggest that there may be situations when narratives could enhance the effectiveness of PtDAs. The recent theoretical work on narratives has underscored the fact that narratives are a multifaceted construct and should no longer be considered a binary option (include narratives or not). However, the bottom line is that the evidence does not support a recommendation for narratives to be a necessary component of PtDAs.