scholarly journals Do published patient decision aids for end-of-life care address patients’ decision-making needs? A systematic review and critical appraisal

2019 ◽  
Vol 33 (8) ◽  
pp. 985-1002 ◽  
Author(s):  
Georgina Phillips ◽  
Kate Lifford ◽  
Adrian Edwards ◽  
Marlise Poolman ◽  
Natalie Joseph-Williams
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Decision Aid ◽  
Decision Aids ◽  
Patient Needs ◽  
Patient Decision Making ◽  
Patient Decision Aids ◽  
Patient Decision ◽  
End Of Life Decision ◽  
Life Decision

Background: Many decisions are made by patients in their last months of life, creating complex decision-making needs for these individuals. Identifying whether currently existing patient decision aids address the full range of these patient decision-making needs will better inform end-of-life decision support in clinical practice. Aims and design: This systematic review aimed to (a) identify the range of patients’ decision-making needs and (b) assess the extent to which patient decision aids address these needs. Data sources: MEDLINE, PsycINFO and CINAHL electronic literature databases were searched (January 1990–January 2017), supplemented by hand-searching strategies. Eligible literature reported patient decision-making needs throughout end-of-life decision-making or were evaluations of patient decision aids. Identified decision aid content was mapped onto and assessed against all patient decision-making needs that were deemed ‘addressable’. Results: Twenty-two studies described patient needs, and seven end-of-life patient decision aids were identified. Patient needs were categorised, resulting in 48 ‘addressable’ needs. Mapping needs to patient decision aid content showed that 17 patient needs were insufficiently addressed by current patient decision aids. The most substantial gaps included inconsistent acknowledgement, elicitation and documentation of how patient needs varied individually for the level of information provided, the extent patients wanted to participate in decision-making, and the extent they wanted their families and associated healthcare professionals to participate. Conclusion: Patient decision-making needs are broad and varied. Currently developed patient decision aids are insufficiently addressing patient decision-making needs. Improving future end-of-life patient decision aid content through five key suggestions could improve patient-focused decision-making support at the end of life.

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

2021 ◽  
Author(s):  
Razieh Zahedi ◽  
Leila Nemati-Anaraki ◽  
Shahram Sedghi ◽  
Mamak Shariat
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Decision Aid ◽  
Prenatal Screening ◽  
Decision Aids ◽  
Personal Factors ◽  
Snowball Sampling ◽  
Structured Interviews ◽  
Patient Decision Aids ◽  
Patient Decision

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.

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 Do Decision Aids Benefit Patients with Chronic Musculoskeletal Pain? A Systematic Review

Pain Medicine ◽  
2019 ◽  
Vol 21 (5) ◽  
pp. 951-969 ◽  
Author(s):  
Emily Bowen ◽  
Rabih Nayfe ◽  
Nathaniel Milburn ◽  
Helen Mayo ◽  
M C Reid ◽  
...  
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Musculoskeletal Pain ◽  
Decision Aid ◽  
Decision Aids ◽  
Treatment Options ◽  
Chronic Musculoskeletal Pain ◽  
Patient Decision Aids ◽  
Nonsurgical Management ◽  
Patient Decision

Abstract Objective To review the effect of patient decision aids for adults making treatment decisions regarding the management of chronic musculoskeletal pain. Methods We performed a systematic review of randomized controlled trials of adults using patient decision aids to make treatment decisions for chronic musculoskeletal pain in the outpatient setting. Results Of 477 records screened, 17 met the inclusion criteria. Chronic musculoskeletal pain conditions included osteoarthritis of the hip, knee, or trapeziometacarpal joint and back pain. Thirteen studies evaluated the use of a decision aid for deciding between surgical and nonsurgical management. The remaining four studies evaluated decision aids for nonsurgical treatment options. Outcomes included decision quality, pain, function, and surgery utilization. The effects of decision aids on decision-making outcomes were mixed. Comparing decision aids with usual care, all five studies that examined knowledge scores found improvement in patient knowledge. None of the four studies that evaluated satisfaction with the decision-making process found a difference with use of a decision aid. There was limited and inconsistent data on other decision-related outcomes. Of the eight studies that evaluated surgery utilization, seven found no difference in surgery rates with use of a decision aid. Five studies made comparisons between different types of decision aids, and there was no clearly superior format. Conclusions Decision aids may improve patients’ knowledge about treatment options for chronic musculoskeletal pain but largely did not impact other outcomes. Future efforts should focus on improving the effectiveness of decision aids and incorporating nonpharmacologic and nonsurgical management options.

scholarly journals Value Awareness: A New Goal for End-of-life Decision Making

2019 ◽  
Vol 4 (1) ◽  
pp. 238146831881752 ◽  
Author(s):  
Baruch Fischhoff ◽  
Amber E. Barnato
Keyword(s):  
Health Care ◽  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Decision Aids ◽  
Relevant Information ◽  
Life Care ◽  
Policy Tool ◽  
End Of Life Decision ◽  
Life Decision

The principal policy tool for respecting the preferences of patients facing serious illnesses that can prompt decisions regarding end-of-life care is the advance directive (AD) for health care. AD policies, decision aids for facilitating ADs, and clinical processes for interpreting ADs all treat patients as rational actors who will make appropriate choices, if provided relevant information. We review barriers to following this model, leading us to propose replacing the goal of rational choice with that of value awareness, enabling patients (and, where appropriate, their surrogates) to be as rational as they can and want to be when making these fateful choices. We propose approaches, and supporting research, suited to individuals’ cognitive, affective, and social circumstances, resources, and desires.

scholarly journals End-of-life decision making by family caregivers of persons with advanced dementia: A literature review of decision aids

2018 ◽  
Vol 6 ◽  
pp. 205031211877751 ◽  
Author(s):  
Bo Xie ◽  
Amy S Berkley ◽  
Jung Kwak ◽  
Kenneth R Fleischmann ◽  
Jane Dimmitt Champion ◽  
...  
Keyword(s):  
Decision Making ◽  
Literature Review ◽  
End Of Life ◽  
Family Caregivers ◽  
Full Text ◽  
Decision Aids ◽  
Future Research ◽  
Advanced Dementia ◽  
End Of Life Decision ◽  
Life Decision

Objectives: To investigate existing knowledge in the literature about end-of-life decision making by family caregivers of persons with dementia, focusing on decision aids for caregivers of persons with advanced dementia, and to identify gaps in the literature that can guide future research. Methods: A literature review through systematic searches in PubMed, CINAHL Plus with Full Text, and PsycINFO was conducted in February 2018; publications with full text in English and published in the past 10 years were selected in multiple steps. Results: The final sample included five decision aids with predominantly Caucasian participants; three of them had control groups, and three used audiovisual technology in presenting the intervention materials. No other technology was used in any intervention. Existing interventions lacked tailoring of information to caregivers’ preferences for different types and amounts of information necessary to make decisions consistent with patients’ values. Conclusion: Research is needed in exploring the use of technology in decision aids that could provide tailored information to facilitate caregivers’ decision making. More diverse samples are needed.

End-of-Life Decision-Making in Canada: The Report by the Royal Society of Canada Expert Panel on End-of-Life Decision-Making

2011 ◽  
Author(s):  
Udo Schuklenk ◽  
Johannes J. M. van Delden ◽  
Jocelyn Downie ◽  
Sheila McLean ◽  
Ross Upshur ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Royal Society ◽  
Expert Panel ◽  
End Of Life Decision ◽  
Life Decision

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.

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