scholarly journals Digital decision aid for prenatal counseling in imminent extreme premature labor: development and pilot testing

2022 ◽  
Vol 22 (1) ◽  
Author(s):  
Josephus F. M. van den Heuvel ◽  
Marije Hogeveen ◽  
Margo Lutke Holzik ◽  
Arno F. J. van Heijst ◽  
Mireille N. Bekker ◽  
...  

Abstract Background In case of extreme premature delivery at 24 weeks of gestation, both early intensive care and palliative comfort care for the neonate are considered treatment options. Prenatal counseling, preferably using shared decision making, is needed to agree on the treatment option in case labor progresses. This article described the development of a digital decision aid (DA) to support pregnant women, partners and clinicians in prenatal counseling for imminent extreme premature labor. Methods This DA is developed following the International Patient Decision Aid Standards. The Dutch treatment guideline and the Dutch recommendations for prenatal counseling in extreme prematurity were used as basis. Development of the first prototype was done by expert clinicians and patients, further improvements were done after alpha testing with involved clinicians, patients and other experts (n = 12), and beta testing with non-involved clinicians and patients (n = 15). Results The final version includes information, probabilities and figures depending on users’ preferences. Furthermore, it elicits patient values and provides guidance to aid parents and professionals in making a decision for either early intensive care or palliative comfort care in threatening extreme premature delivery. Conclusion A decision aid was developed to support prenatal counseling regarding the decision on early intensive care versus palliative comfort care in case of extreme premature delivery at 24 weeks gestation. It was well accepted by parents and healthcare professionals. Our multimedia, digital DA is openly available online to support prenatal counseling and personalized, shared decision-making in imminent extreme premature labor.

2018 ◽  
Author(s):  
Molly Beinfeld ◽  
Suzanne Brodney ◽  
Michael Barry ◽  
Erika Poole ◽  
Adam Kunin

BACKGROUND A rural community-based Cardiology practice implemented shared decision making supported by an evidence-based decision aid booklet to improve the quality of anticoagulant therapy decisions in patients with atrial fibrillation. OBJECTIVE To develop a practical workflow for implementation of an anticoagulant therapy decision aid and to assess the impact on patients’ knowledge and process for anticoagulant medication decision making. METHODS The organization surveyed all patients with atrial fibrillation being seen at Copley Hospital to establish a baseline level of knowledge, certainty about the decision and process for decision making. The intervention surveys included the same knowledge, certainty, process and demographic questions as the baseline surveys, but also included questions asking for feedback on the decision aid booklet. Stroke risk scores (CHA2DS2-VASc score) were calculated by Copley staff for both groups using EMR data. RESULTS We received 46 completed surveys in the baseline group (64% response rate) and 50 surveys in the intervention group (72% response rate). The intervention group had higher knowledge score than the baseline group (3.6 out of 4 correct answers vs 3.1, p=0.036) and Decision Process Score (2.89 out of 4 vs 2.09, p=0.0023) but similar scores on the SURE scale (3.12 out of 4 vs 3.17, p=0.79). Knowledge and Process score differences were sustained even after adjusting for co-variates in stepwise linear regression analyses. Patients with high school or lower education appeared to benefit the most from shared decision making, as demonstrated by their knowledge scores. CONCLUSIONS It is feasible and practical to implement shared decision making supported by decision aids in a community-based Cardiology practice. Shared decision making can improve knowledge and process for decision making for patients with atrial fibrillation. CLINICALTRIAL None


2018 ◽  
Author(s):  
Meliss Basile ◽  
Johanna Andrews ◽  
Sonia Jacome ◽  
Meng Zhang ◽  
Andrzej Kozikowski ◽  
...  

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
I. E. H. Kremer ◽  
P. J. Jongen ◽  
S. M. A. A. Evers ◽  
E. L. J. Hoogervorst ◽  
W. I. M. Verhagen ◽  
...  

Abstract Background Since decision making about treatment with disease-modifying drugs (DMDs) for multiple sclerosis (MS) is preference sensitive, shared decision making between patient and healthcare professional should take place. Patient decision aids could support this shared decision making process by providing information about the disease and the treatment options, to elicit the patient’s preference and to support patients and healthcare professionals in discussing these preferences and matching them with a treatment. Therefore, a prototype of a patient decision aid for MS patients in the Netherlands—based on the principles of multi-criteria decision analysis (MCDA) —was developed, following the recommendations of the International Patient Decision Aid Standards. MCDA was chosen as it might reduce cognitive burden of considering treatment options and matching patient preferences with the treatment options. Results After determining the scope to include DMDs labelled for relapsing-remitting MS and clinically isolated syndrome, users’ informational needs were assessed using focus groups (N = 19 patients) and best-worst scaling surveys with patients (N = 185), neurologists and nurses (N = 60) to determine which information about DMDs should be included in the patient decision aid. Next, an online format and computer-based delivery of the patient decision aid was chosen to enable embedding of MCDA. A literature review was conducting to collect evidence on the effectiveness and burden of use of the DMDs. A prototype was developed next, and alpha testing to evaluate its comprehensibility and usability with in total thirteen patients and four healthcare professionals identified several issues regarding content and framing, methods for weighting importance of criteria in the MCDA structure, and the presentation of the conclusions of the patient decision aid ranking the treatment options according to the patient’s preferences. Adaptations were made accordingly, but verification of the rankings provided, validation of the patient decision aid, evaluation of the feasibility of implementation and assessing its value for supporting shared decision making should be addressed in further development of the patient decision aid. Conclusion This paper aimed to provide more transparency regarding the developmental process of an MCDA-based patient decision aid for treatment decisions for MS and the challenges faced during this process. Issues identified in the prototype were resolved as much as possible, though some issues remain. Further development is needed to overcome these issues before beta pilot testing with patients and healthcare professionals at the point of clinical decision-making can take place to ultimately enable making conclusions about the value of the MCDA-based patient decision aid for MS patients, healthcare professionals and the quality of care.


2020 ◽  
Vol 13 (Suppl_1) ◽  
Author(s):  
Andrea R Mitchell ◽  
Grace Venechuk ◽  
Larry A Allen ◽  
Dan D Matlock ◽  
Miranda Moore ◽  
...  

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.


2017 ◽  
pp. 351-368
Author(s):  
Geri Lynn Baumblatt

In this chapter the author describes the challenges of engaging and communicating with patients and how technology can improve communication, elicit honest patient disclosure, and create more productive conversation and help patients engage and partner in their care. The author will also discuss how research with multimedia programs reveals it can help reduce anxiety, improve knowledge, help low health literacy audiences, and contribute to improved outcomes. This chapter will also examine how multimedia decision aid programs can help patients understand their options and complex risk information, while helping them consider their values and preferences so they can truly engage in shared decision making.


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