scholarly journals P563 Shared decision-making in pregnancy in inflammatory bowel disease: Design of a pregnancy in IBD decision aid (PIDA)

2020 ◽  
Vol 14 (Supplement_1) ◽  
pp. S474-S475
Author(s):  
A J Williams ◽  
Y Leung ◽  
K O’Connor ◽  
V Huang
Keyword(s):  
Decision Making ◽  
Focus Groups ◽  
Disease Activity ◽  
Decision Aid ◽  
Negative Impact ◽  
Decision Aids ◽  
Mode Of Delivery ◽  
Surgical History ◽  
The Impact ◽  
In Pregnancy

Abstract Background A lack of IBD-specific reproductive knowledge has been associated with increased ‘voluntary childlessness’.Furthermore, a lack of patient and clinician knowledge may contribute to inappropriate medication changes during or after pregnancy that may lead to a flare of disease. Evidence exists for the benefit of decision aids to support decision-making in pregnancy in general, as well as in multiple other chronic disease; however, such a resource for pregnancy in IBD has not been identified. Methods Using International Patient Decision Aids Standards, we have commenced design of our Pregnancy in IBD Decision Aid (PIDA). A steering committee consisting of Canadian and Australian Healthcare professionals with an interest in IBD management in pregnancy, in addition to a patient representative was established. Initial patient and clinician focus groups were conducted. Themes prospectively chosen for discussion included inheritance, fertility, nutrition, medications, mode of delivery, breastfeeding, infant infections and vaccinations. We designed an electronic PIDA draft that incorporates individualised information (for example, type of IBD, pre-conception or pregnant, surgical history and current medications) in personalised decision-making. Further patient focus groups and interviews were conducted to obtain user opinion of the PIDA draft. Results In July 2017, patient and clinician focus groups were conducted at a Canadian site. Patient concerns regarding pregnancy included the impact of disease, previous surgical history on fertility, preterm delivery; the potential impact of current and past drug therapies on the fetus/ infant; and the negative impact of active disease on both maternal and fetal/infant health. Clinician concerns included the absence of pre-conception counselling and potential for lack of patient understanding about the impact of disease activity and IBD medication use in pregnancy. Patient feedback (n = 15) obtained through interviews at two Canadian and one Australian site regarding the current electronic PIDA draft was predominantly positive, with comments pertaining to the adequacy of content coverage, personalisation, readability and unbiased information presentation. Suggestions were made for inclusion of further content such as the impact of IBD on sexual function, expected laboratory changes and the timing of recommencement of medications post-partum. Conclusion The completion of pre and post-PIDA design focus groups and interviews affirmed the role for PIDA. Main decisions that were considered necessary to address included ideal timing of conception pending disease activity, management of medications and delivery methods. Ongoing user feedback is being obtained at Australian and Canadian sites currently.

scholarly journals A237 SHARED DECISION MAKING: DESIGN OF A PREGNANCY IN IBD DECISION AID (PIDA)

2020 ◽  
Vol 3 (Supplement_1) ◽  
pp. 113-115
Author(s):  
A Williams ◽  
Y Leung ◽  
V Huang
Keyword(s):  
Decision Making ◽  
Focus Group ◽  
Focus Groups ◽  
Disease Activity ◽  
Decision Aid ◽  
Infant Health ◽  
Decision Aids ◽  
Additional Patient ◽  
The Impact ◽  
In Pregnancy

Abstract Background Given a significant proportion of women with inflammatory bowel disease (IBD) are of child-bearing age, the development of a pregnancy IBD decision aid would benefit patients and clinicians. Lack of IBD-specific reproductive knowledge has been associated with increased “voluntary childlessness” and may contribute to inappropriate medication changes during or after pregnancy. Decision aids support decision making in pregnancy in general, as well as in multiple other chronic diseases. However existing literature has not identified such a resource for women with IBD. Aims To develop a decision aid to improve decision making regarding preconception and pregnancy in IBD among women with IBD. Methods We followed the International Patient Decision Aids Standards (IPDAS). A steering committee of Canadian and Australian health care professionals with an interest in IBD management in pregnancy, in addition to patient representatives, was established. Themes chosen for discussion included inheritance, fertility, nutrition, medications, mode of delivery, breastfeeding, infant health. Initial patient and clinician focus groups were conducted and responses recorded with written/audio mediums. We developed an electronic PIDA draft that incorporates individualised information (type of IBD, pre-conception or pregnant, surgical history, medications) in personalized decision making. Further patient focus groups and interviews were conducted to obtain user opinion of the PIDA draft. Results In July 2017, patient and clinician focus groups were conducted at a Canadian site. Three patients (pre-conception) attended the focus group. Patient concerns - impact of disease and surgery on fertility and preterm delivery; impact of drug therapies on the fetus/ infant; impact of active disease on maternal and fetal/infant health. The clinician focus group included 3 IBD specialists, 2 IBD fellows, 2 IBD nurses, an obstetrician and a neonatal intensivist. Clinician concerns - absence of pre-conception counselling and lack of patient understanding about the impact of disease activity and IBD medication use in pregnancy. Additional patient feedback obtained through interviews (n=15) at two Canadian sites since March 2019 regarding the current electronic PIDA was positive, with comments about content, personalization, readability and unbiased presentation. Suggestions were made for inclusion of additional content such as impact of IBD on sexual function, laboratory changes during pregnancy, and timing of medications post-partum. Conclusions The pre and post PIDA design patient and clinician focus groups and interviews affirmed the role for PIDA. Main decisions considered necessary to address included ideal timing of conception pending disease activity, management of medications, and delivery methods. Ongoing user feedback will be obtained at Australian and Canadian sites during planned alpha testing. Funding Agencies WCHRI, Sinai Health System, UBC

Abstract 27: Patients' Perspectives on a Decision Aid to Facilitate Cost-sensitive Decisions for Sacubitril-Valsartan

2020 ◽  
Vol 13 (Suppl_1) ◽  
Author(s):  
Andrea R Mitchell ◽  
Grace Venechuk ◽  
Larry A Allen ◽  
Dan D Matlock ◽  
Miranda Moore ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Decision Aid ◽  
Decision Aids ◽  
Descriptive Analysis ◽  
Patient Specific ◽  
Shared Decision ◽  
Cost Information ◽  
Reduced Ejection Fraction ◽  
The Impact

Background: Decision aids frequently focus on decisions that are preference-sensitive due to an absence of superior medical option or qualitative differences in treatments. Out of pocket cost can also make decisions preference-sensitive. However, cost is infrequently discussed with patients, and cost has not typically been considered in developing approaches to shared decision-making or decision aids. Determining a therapy’s value to a patient requires an individualized assessment of both benefits and cost. A decision aid addressing cost for sacubitril-valsartan in heart failure with reduced ejection fraction (HFrEF) was developed because this medication has clear medical benefits but can entail appreciable out-of-pocket cost. Objective: To explore patients’ perspectives on a decision aid for sacubitril-valsartan in HFrEF. Methods: Twenty adults, ages 32-73, with HFrEF who met general eligibility for sacubitril-valsartan were recruited from outpatient HF clinics and inpatient services at 2 geographically-distinct academic health systems. In-depth interviews were conducted by trained interviewers using a semi-structured guide after patients reviewed the decision aid. Interviews were audio-recorded and transcribed; qualitative descriptive analysis was conducted using a template analytic method. Results: Participants confirmed that cost was relevant to this decision and that cost discussions with clinicians are infrequent but welcomed. Participants cited multiple ways that this decision aid could be helpful beyond informing a choice; these included serving as a conversation starter, helping inform questions, and serving as a reference later. The decision aid seemed balanced; several participants felt that it was promotional, while others wanted a more “positive” presentation. Participants valued the display of benefits of sacubitril-valsartan but had variable views about how to apply data to themselves and heterogenous interpretations of a 3% absolute reduction in mortality over 2 years. None felt this benefit was overwhelming; about half felt it was very small. The decision aid incorporated a novel “gist statement” to contextualize benefits and counter tendencies to dismiss this mortality reduction as trivial. Several participants liked this statement; few had strong impressions. Conclusion: Out of pocket cost should be part of shared decision-making. These data suggest patients are receptive to inclusion of cost in decision aids and that a “middle ground” between being promotional and negative may exist. The data, however, raise concerns regarding potential dismissal of clinically meaningful benefits and illustrate challenges identifying appropriate contextualizing language. The impact of various framings warrants further study, as does integration of decision aids with patient-specific out-of-pocket cost information during clinical encounters.

scholarly journals Shared Decision Making in Pregnancy in Inflammatory Bowel Disease: Design of a Patient Orientated Decision Aid

2020 ◽  
Author(s):  
Astrid-Jane Williams ◽  
Neda Karimi ◽  
Radha Chari ◽  
Susan Connor ◽  
Mary A De Vera ◽  
...  
Keyword(s):  
Decision Making ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Decision Aid ◽  
Post Partum ◽  
Decision Aids ◽  
Inappropriate Medication ◽  
Support Tool ◽  
Inflammatory Bowel ◽  
In Pregnancy

Abstract Objective: Research has indicated a lack of disease-specific reproductive knowledge among patients with Inflammatory Bowel Disease (IBD) and this has been associated with increased “voluntary childlessness”. Furthermore, a lack of knowledge may contribute to inappropriate medication changes during or after pregnancy. Decision aids have been shown to support decision making in pregnancy as well as in multiple other chronic diseases. A published decision aid for pregnancy in IBD has not been identified, despite the benefit of pre-conception counselling and patient desire for a decision support tool. Development and feasibility testing of a decision aid encompassing reproductive decisions in the setting of IBDMethods:The International Patient Decision Aid Standards were implemented in the development of the Pregnancy in IBD Decision Aid (PIDA). A multi-disciplinary steering committee was formed. Patient and clinician focus groups were conducted to explore themes of importance in the reproductive decision-making processes in IBD. A PIDA prototype was designed and tested for feasibility.Results:Issues considered of importance to patients and clinicians encountering decisions regarding pregnancy in the setting of IBD included fertility, conception timing, inheritance, medications, infant health, impact of surgery, contraception, nutrition and breastfeeding. Decisions relating to conception and medications were chosen as the current focus of PIDA, however content inclusion was broad to support use across preconception, pregnancy and post-partum phases. Favourable and constructive user feedback was received. Conclusions:The novel development of a decision aid for use in pregnancy and IBD was supported by initial user testing.

scholarly journals Decision aids to support decision-making in dementia care: a systematic review

2019 ◽  
Vol 31 (10) ◽  
pp. 1403-1419 ◽  
Author(s):  
Nathan Davies ◽  
Brooke Schiowitz ◽  
Greta Rait ◽  
Victoria Vickerstaff ◽  
Elizabeth L. Sampson
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Decision Aid ◽  
Meta Analysis ◽  
Decision Aids ◽  
Mode Of Delivery ◽  
Decisional Conflict ◽  
Dementia Care ◽  
Cochrane Library ◽  
People With Dementia

ABSTRACTObjectives:We aimed to critically evaluate decision aids developed for practitioners and caregivers when providing care for someone with dementia or for use by people with dementia themselves. Decision aids may be videos, booklets, or web-based tools that explicitly state the decision, provide information about the decision, and summarize options along with associated benefits and harms. This helps guide the decision maker through clarifying the values they place on the benefits or harms of the options.Design:We conducted a systematic review of peer-reviewed literature in electronic databases (CINAHL, The Cochrane Library, EMBASE, MEDLINE, and PsychINFO) in March 2018. Reference lists were searched for relevant papers and citations tracked. Data were synthesized with meta-analysis and narrative synthesis. Papers were included if they met the following criteria: 1) the focus of the paper was on the evaluation of a decision aid; 2) the decision aid was used in dementia care; and 3) the decision aid was aimed at professionals, people with dementia, or caregivers.Results:We identified 3618 studies, and 10 studies were included, covering three topics across six decision aids: 1) support with eating/feeding options, 2) place of care, and 3) goals of care. The mode of delivery and format of the decision aids varied and included paper-based, video-based, and audio-based decision aids. The decision aids were shown to be effective, increasing knowledge and the quality of communication. The meta-analysis demonstrated that decisions are effective in reducing decisional conflict among caregivers (standardized mean difference = −0.50, 95% confidence interval [ − 0.97, − 0.02]).Conclusion:Decision aids offer a promising approach for providing support for decision-making in dementia care. People are often faced with more than one decision, and decisions are often interrelated. The decision aids identified in this review focus on single topics. There is a need for decision aids that cover multiple topics in one aid to reflect this complexity and better support caregivers.

scholarly journals Impact of decision aids used during clinical encounters on clinician outcomes and consultation length: a systematic review

2018 ◽  
Vol 28 (6) ◽  
pp. 499-510 ◽  
Author(s):  
Claudia Caroline Dobler ◽  
Manuel Sanchez ◽  
Michael R Gionfriddo ◽  
Neri A Alvarez-Villalobos ◽  
Naykky Singh Ospina ◽  
...  
Keyword(s):  
Decision Making ◽  
Decision Aid ◽  
Evidence Synthesis ◽  
Decision Aids ◽  
Medical Decision ◽  
Control Group ◽  
Clinical Encounters ◽  
Prevention And Treatment ◽  
The Future ◽  
The Impact

BackgroundClinicians’ satisfaction with encounter decision aids is an important component in facilitating implementation of these tools. We aimed to determine the impact of decision aids supporting shared decision making (SDM) during the clinical encounter on clinician outcomes.MethodsWe searched nine databases from inception to June 2017. Randomised clinical trials (RCTs) of decision aids used during clinical encounters with an unaided control group were eligible for inclusion. Due to heterogeneity among included studies, we used a narrative evidence synthesis approach.ResultsTwenty-five papers met inclusion criteria including 22 RCTs and 3 qualitative or mixed-methods studies nested in an RCT, together representing 23 unique trials. These trials evaluated healthcare decisions for cardiovascular prevention and treatment (n=8), treatment of diabetes mellitus (n=3), treatment of osteoporosis (n=2), treatment of depression (n=2), antibiotics to treat acute respiratory infections (n=3), cancer prevention and treatment (n=4) and prenatal diagnosis (n=1). Clinician outcomes were measured in only a minority of studies. Clinicians’ satisfaction with decision making was assessed in only 8 (and only 2 of them showed statistically significantly greater satisfaction with the decision aid); only three trials asked if clinicians would recommend the decision aid to colleagues and only five asked if clinicians would use decision aids in the future. Outpatient consultations were not prolonged when a decision aid was used in 9 out of 13 trials. The overall strength of the evidence was low, with the major risk of bias related to lack of blinding of participants and/or outcome assessors.ConclusionDecision aids can improve clinicians’ satisfaction with medical decision making and provide helpful information without affecting length of consultation time. Most SDM trials, however, omit outcomes related to clinicians’ perspective on the decision making process or the likelihood of using a decision aid in the future.

scholarly journals Shared decision making in pregnancy in inflammatory bowel disease: design of a patient orientated decision aid

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Astrid-Jane Williams ◽  
Neda Karimi ◽  
Radha Chari ◽  
Susan Connor ◽  
Mary A. De Vera ◽  
...  
Keyword(s):  
Decision Making ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Decision Aid ◽  
Post Partum ◽  
Decision Aids ◽  
Inappropriate Medication ◽  
Support Tool ◽  
Inflammatory Bowel ◽  
In Pregnancy

Abstract Background Research has indicated a lack of disease-specific reproductive knowledge among patients with Inflammatory Bowel Disease (IBD) and this has been associated with increased “voluntary childlessness”. Furthermore, a lack of knowledge may contribute to inappropriate medication changes during or after pregnancy. Decision aids have been shown to support decision making in pregnancy as well as in multiple other chronic diseases. A published decision aid for pregnancy in IBD has not been identified, despite the benefit of pre-conception counselling and patient desire for a decision support tool. This study aimed to develop and test the feasibility of a decision aid encompassing reproductive decisions in the setting of IBD. Methods The International Patient Decision Aid Standards were implemented in the development of the Pregnancy in IBD Decision Aid (PIDA). A multi-disciplinary steering committee was formed. Patient and clinician focus groups were conducted to explore themes of importance in the reproductive decision-making processes in IBD. A PIDA prototype was designed; patient interviews were conducted to obtain further insight into patient perspectives and to test the prototype for feasibility. Results Issues considered of importance to patients and clinicians encountering decisions regarding pregnancy in the setting of IBD included fertility, conception timing, inheritance, medications, infant health, impact of surgery, contraception, nutrition and breastfeeding. Emphasis was placed on the provision of preconception counselling early in the disease course. Decisions relating to conception and medications were chosen as the current focus of PIDA, however content inclusion was broad to support use across preconception, pregnancy and post-partum phases. Favourable and constructive user feedback was received. Conclusions The novel development of a decision aid for use in pregnancy and IBD was supported by initial user testing.

How good is good enough? Quantifying the impact of benefits, accuracy, and privacy on willingness to adopt COVID-19 decision aids

2021 ◽  
Author(s):  
Gabriel Kaptchuk ◽  
Daniel Goldstein ◽  
Eszter Hargittai ◽  
Jake M Hofman ◽  
Elissa M Redmiles
Keyword(s):  
Decision Making ◽  
Decision Aid ◽  
Decision Aids ◽  
Data Driven ◽  
Personal Health ◽  
Privacy Concerns ◽  
Decision Context ◽  
Willingness To Adopt ◽  
Human Decision ◽  
The Impact

An increasing number of data-driven decision aids are being developed to provide humans with advice to improve decision-making around important issues such as personal health and criminal justice. For algorithmic systems to support human decision-making effectively, people must be willing to use them. We expand upon prior research by empirically modeling how accuracy and privacy influence intent to adopt algorithmic systems, focusing on an globally-relevant decision context with tangible consequences: the COVID-19 pandemic. We analyze surveys of 4,615 Americans to (1) evaluate the effect of both accuracy and privacy concerns on reported willingness to install COVID-19 apps; (2) examine how different groups of users weigh accuracy relative to privacy; and (3) we empirically develop the first statistical models, to our knowledge, of how the amount of benefit (e.g., error rate) and degree of privacy risk in a data-driven decision aid may influence willingness to adopt.

scholarly journals The Advancing Understanding of Transportation Options (AUTO) study: design and methods of a multi-center study of decision aid for older drivers

2021 ◽  
Vol 8 (1) ◽  
Author(s):  
Marian E. Betz ◽  
◽  
Faris Omeragic ◽  
Lauren Meador ◽  
Carolyn G. DiGuiseppi ◽  
...  
Keyword(s):  
Older Adults ◽  
Decision Making ◽  
Decision Aid ◽  
Decision Aids ◽  
Decision Quality ◽  
Driving Cessation ◽  
Driving Behaviors ◽  
Risks And Benefits ◽  
Link Type ◽  
The Impact

Abstract Background Decision-making about when to stop driving for older adults involves assessment of driving risk, availability of support or resources, and strong emotions about loss of independence. Although the risk of being involved in a fatal crash increases with age, driving cessation can negatively impact an older adult’s health and well-being. Decision aids can enhance the decision-making process by increasing knowledge of the risks and benefits of driving cessation and improve decision quality. The impact of decision aids regarding driving cessation for older adults is unknown. Methods The Advancing Understanding of Transportation Options (AUTO) study is a multi-site, two-armed randomized controlled trial that will test the impact of a decision aid on older adults’ decisions about changes in driving behaviors and cessation. AUTO will enroll 300 drivers age ≥ 70 years with a study partner (identified by each driver); the dyads will be randomized into two groups (n = 150/group). The decision aid group will view the web-based decision aid created by Healthwise at baseline and the control group will review information about driving that does not include evidence-based elements on risks and benefits and values clarification about driving decisions. The AUTO trial will compare the effect of the decision aid, versus control, on a) immediate decision quality (measured by the Decisional Conflict Scale; primary outcome); b) longitudinal psychosocial outcomes at 12 and 24 months (secondary outcomes); and c) longitudinal driving behaviors (including reduction or cessation) at 12 and 24 months (secondary outcomes). Planned stratified analyses will examine the effects in subgroups defined by cognitive function, decisional capacity, and readiness to stop driving. Discussion The AUTO study is the first large-scale randomized trial of a driving decision aid for older adults. Results from this study will directly inform clinical practice about how best to support older adults in decision-making about driving. Trial registration ClinicalTrials.gov: NCT04141891. Registered on October 28, 2019. Located at https://clinicaltrials.gov/ct2/show/NCT04141891

Decision Aids for Generating Analytical Review Alternatives: The Impact of Goal Framing and Audit-Risk Level

2002 ◽  
Vol 14 (1) ◽  
pp. 157-177 ◽  
Author(s):  
Jennifer M. Mueller ◽  
John C. Anderson
Keyword(s):  
High Risk ◽  
Cognitive Load ◽  
Information Search ◽  
Decision Aid ◽  
Decision Aids ◽  
Risk Level ◽  
Audit Risk ◽  
Goal Framing ◽  
Analytical Review ◽  
The Impact

An auditor generating potential explanations for an unusual variance in analytical review may utilize a decision aid, which provides many explanations. However, circumstances of budgetary constraints and limited cognitive load deter an auditor from using a lengthy list of explanations in an information search. A two-way between-subjects design was created to investigate the effects of two complementary approaches to trimming down the lengthy list on the number of remaining explanations carried forward into an information search. These two approaches, which represent the same goal (reducing the list) but framed differently, are found to result in a significantly different number of remaining explanations, in both low- and high-risk audit environments. The results of the study suggest that the extent to which an auditor narrows the lengthy list of explanations is important to the implementation of decision aids in analytical review.

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