scholarly journals Facilitating shared decision making with a patient decision aid for choosing a treatment for multiple sclerosis

2020 ◽  
Author(s):  
Kremer Ingrid (Elise Hubertine)
Keyword(s):  
Multiple Sclerosis ◽  
Decision Making ◽  
Shared Decision Making ◽  
Decision Aid ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Patient Decision

scholarly journals Patient decision aid based on multi-criteria decision analysis for disease-modifying drugs for multiple sclerosis: prototype development

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 ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Decision Aid ◽  
Healthcare Professionals ◽  
Treatment Options ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Disease Modifying Drugs ◽  
Patient Decision ◽  
Further Development

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.

scholarly journals Decision Making when Cancer Becomes Chronic: A Decisional Needs Assessment of Medullary Thyroid Cancer Patients’, Families’, and Providers’ Needs for a Web-based Patient Decision Aid (Preprint)

2021 ◽  
Author(s):  
Danielle Shojaie ◽  
Aubri S Hoffman ◽  
Ruth Amaku ◽  
Maria E Cabanillas ◽  
Julie Ann Sosa ◽  
...  
Keyword(s):  
Decision Making ◽  
Decision Support ◽  
Needs Assessment ◽  
Shared Decision Making ◽  
Decision Aid ◽  
Chronic Phase ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Web Based ◽  
Patient Decision

BACKGROUND In cancers with a chronic phase, patients and family caregivers may face difficult decisions such as whether to start a novel therapy, whether to enroll in a clinical trial, and when to stop treatment. These decisions are complex, require an understanding of uncertainty, and necessitate consideration of patients’ informed preferences. For some cancers, such as medullary thyroid carcinoma, these decisions may also involve significant out-of-pocket costs and effects on family members. Providers expressed a need for web-based interventions that can be delivered between consultations to provide education and prepare patients and families for discussing these decisions. To ensure these tools are effective, usable, and understandable, studies are needed to identify patients’, families’, and providers’ primary decision-making needs and optimal design strategies for a web-based patient decision aid. OBJECTIVE Following international guidelines for development of a web-based patient decision aid, the objectives of this study were to: 1) engage potential users to guide development; 2) review the existing literature and available tools; 3) assess users’ decision-making experiences, needs, and design recommendations; and 4) identify shared decision-making approaches to address each need. METHODS This study used the Decisional Needs Assessment approach, including creating a Stakeholder Advisory Panel, mapping decision pathways, conducting an environmental scan of existing materials, and administering a decisional needs assessment questionnaire. Thematic analyses identified the current decision-making pathways, unmet decision-making needs, and decision support strategies to meet each need. RESULTS Stakeholders reported wide heterogeneity in decision timing and pathways. Relevant existing materials included two systematic reviews, 9 additional papers, and multiple educational websites, but nothing that met the criteria of a patient decision aid. Patients and family members emphasized needing plain language (46 of 54, 85%), shared decision making (45 of 54, 83%), and help with family discussions (39 of 54, 72%). Additional needs included information about uncertainty, lived experience, and costs. Providers (n = 10) reported needing interventions that address misinformation (9 of 10, 90%), foster realistic expectations (9 of 10, 90%), and address mistrust in clinical trials (5 of 10, 50%). Additional needs included provider tools to support shared decision making. Both groups recommended designing a web-based patient decision aid that can be tailored (64 of 64, 100%) and delivered on a hospital website (53 of 64, 83%), and that focuses on quality of life (45 of 64, 70%) and provides step-by-step guidance (43 of 64, 67%). The study team identified best practices to meet each need, which are presented in the proposed Decision Support Design Guide. CONCLUSIONS Patients, families, and providers report multifaceted decision support needs during the chronic phase of cancer. Web-based patient decision aids are needed that provide tailored support over time, and explicitly address uncertainty, quality of life, realistic expectations, and effects on families.

scholarly journals A prospective cohort study of shared decision making in lung cancer diagnostics: Impact of using a patient decision aid

2019 ◽  
Vol 102 (11) ◽  
pp. 1961-1968 ◽  
Author(s):  
Stine R. Søndergaard ◽  
Poul Henning Madsen ◽  
Ole Hilberg ◽  
Karina M. Jensen ◽  
Karina Olling ◽  
...  
Keyword(s):  
Lung Cancer ◽  
Decision Making ◽  
Cohort Study ◽  
Shared Decision Making ◽  
Prospective Cohort ◽  
Decision Aid ◽  
Cancer Diagnostics ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Patient Decision

Patient Decision Aid Selection for Shared Decision Making: A Multicase Qualitative Study

2021 ◽  
pp. 107755872110129
Author(s):  
Cynthia LeRouge ◽  
Ann M. Nguyen ◽  
Deborah J. Bowen
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Patient Engagement ◽  
Decision Aid ◽  
Selection Criteria ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Health Organizations ◽  
Patient Decision ◽  
Health Decision

The patient decision aid (PDA) is a promising patient engagement tool for use in shared decision making (SDM). Selecting a PDA is an essential precursor to successful SDM implementation. Little is known regarding the organizational stakeholder process for assessing and selecting a PDA. We conducted a qualitative, multicase study within the context of a maternal health decision to identify the criteria used by stakeholders to select a PDA. We further explored the perceived value of PDA certification on PDA selection. We reported the PDA selection criteria within the domains of (1) Design and Functionality, (2) User Fit, (3) Context and Climate, (4) Support, and (5) Strategic Vision and found that certification was perceived to be a valuable screening mechanism for smaller health organizations. Health organizations and researchers may use our PDA selection criteria and conceptual model to plan future deployments of PDAs and patient engagement tools.

18277 Development of a patient decision aid for hidradenitis suppurativa: Facilitating informed shared decision making

2020 ◽  
Vol 83 (6) ◽  
pp. AB208
Author(s):  
Jerry Tan ◽  
Olivia McBride ◽  
Donna McLean ◽  
Tanja Samardzic ◽  
Christine A. Yannuzzi ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Decision Aid ◽  
Hidradenitis Suppurativa ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Patient Decision

scholarly journals Shared decision-making for the management of small renal masses — development and acceptability testing of a novel patient decision aid

2020 ◽  
Vol 14 (12) ◽  
Author(s):  
Kristen McAlpine ◽  
Rodney H. Breau ◽  
Dawn Stacey ◽  
Christopher Knee ◽  
Michael A.S. Jewett ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Decision Aid ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Management Options ◽  
Small Renal Masses ◽  
Renal Masses ◽  
Patient Decision ◽  
Patient Advocates

Introduction: Shared decision-making incorporates patient’s values and preferences to achieve high-quality decisions. The objective of this study was to develop an acceptable patient decision aid to facilitate shared decision-making for the management of small renal masses (SRMs). Methods: The International Patient Decision Aids Standards were used to guide an evidence-based development process. Management options included active surveillance, thermal ablation, partial nephrectomy, and radical nephrectomy. A literature review was performed to provide incidence rates for outcomes of each option. Once a prototype was complete, alpha-testing was performed using a 10-question survey to assess acceptability with patients, patient advocates, urologists, and methodological experts. The primary outcome was acceptability of the decision aid. Results: A novel patient decision aid was created to facilitate shared decision-making for the management of SRMs. Acceptability testing was performed with 20 patients, 10 urologists, two patient advocates, and one methodological expert. Responders indicated the decision aid was appropriate in length (82%, 27 of 33), well-balanced (82%, 27 of 33), and had language that was easy to follow (94%, 31 of 33). All patient responders felt the decision aid would have been helpful during their consultation and would recommend the decision aid for future patients (100%, 20 of 20). Most urologists reported they intend to use the decision aid (90%, 9 of 10). Conclusions: A novel patient decision aid was created to facilitate shared decision-making for management of SRMs. This clinical tool was acceptable with patients, patient advocates, and urologists and is freely available at: https://decisionaid.ohri.ca/decaids.html.

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