Development of Complementary Encounter and Patient Decision Aids for Shared Decision Making about Stroke Prevention in Atrial Fibrillation

Aubrey E Jones; Madeleine M McCarty; Kenzie A Cameron; Kerri L Cavanaugh; Benjamin A Steinberg; Rod Passman; Preeti Kansal; Adriana Guzman; Emily Chen; Lingzi Zhong; Angela Fagerlin; Ian Hargraves; Victor M Montori; Juan P Brito; Peter A Noseworthy; Elissa M Ozanne

doi:10.1177/23814683231178033

Development of Complementary Encounter and Patient Decision Aids for Shared Decision Making about Stroke Prevention in Atrial Fibrillation

MDM Policy Pract. 2023 Jun 21;8(1):23814683231178033. doi: 10.1177/23814683231178033. eCollection 2023 Jan-Jun.

Authors

Aubrey E Jones¹, Madeleine M McCarty², Kenzie A Cameron³, Kerri L Cavanaugh⁴, Benjamin A Steinberg⁵, Rod Passman⁶, Preeti Kansal⁶, Adriana Guzman³, Emily Chen⁷, Lingzi Zhong², Angela Fagerlin^{2

8}, Ian Hargraves⁹, Victor M Montori⁹, Juan P Brito⁹, Peter A Noseworthy⁹, Elissa M Ozanne²

Affiliations

¹ College of Pharmacy, Department of Pharmacotherapy, University of Utah, Salt Lake City, UT, USA.
² School of Medicine, Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA.
³ Feinberg School of Medicine, Department of Medicine, Division of General Internal Medicine and Geriatrics, Northwestern University, Chicago, IL, USA.
⁴ Department of Medicine, Division of Nephrology and Hypertension, Vanderbilt University Medical Center, Nashville, TN, USA.
⁵ School of Medicine, Division of Cardiovascular Medicine, University of Utah, Salt Lake City, UT, USA.
⁶ Feinberg School of Medicine, Department of Medicine, Division of Cardiology, Northwestern University, Chicago, IL, USA.
⁷ Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA.
⁸ Salt Lake City VA Informatics Decision-Enhancement and Analytic Sciences (IDEAS) Center for Innovation, Salt Lake City, UT, USA.
⁹ Department of Cardiovascular Diseases, Mayo Clinic, Rochester, MN, USA.

Abstract

Introduction: Decision aids (DAs) are helpful instruments used to support shared decision making (SDM). Patients with atrial fibrillation (AF) face complex decisions regarding stroke prevention strategies. While a few DAs have been made for AF stroke prevention, an encounter DA (EDA) and patient DA (PDA) have not been created to be used in conjunction with each other before.

Design: Using iterative user-centered design, we developed 2 DAs for anticoagulation choice and stroke prevention in AF. Prototypes were created, and we elicited feedback from patients and experts via observations of encounters, usability testing, and semistructured interviews.

Results: User testing was done with 33 experts (in AF and SDM) and 51 patients from 6 institutions. The EDA and PDA underwent 1 and 4 major iterations, respectively. Major differences between the DAs included AF pathophysiology and a preparation to meet with the clinician in the PDA as well as different language throughout. Content areas included personalized stroke risk, differences between anticoagulants, and risks of bleeding. Based on user feedback, developers 1) addressed feelings of isolation with AF, 2) improved navigation options, 3) modified content and flow for users new to AF and those experienced with AF, 4) updated stroke risk pictographs, and 5) added structure to the preparation for decision making in the PDA.

Limitations: These DAs focus only on anticoagulation for stroke prevention and are online, which may limit participation for those less comfortable with technology.

Conclusions: Designing complementary DAs for use in tandem or separately is a new method to support SDM between patients and clinicians. Extensive user testing is essential to creating high-quality tools that best meet the needs of those using them.

Highlights: First-time complementary encounter and patient decision aids have been designed to work together or separately.User feedback led to greater structure and different experiences for patients naïve or experienced with anticoagulants in patient decision aids.Online tools allow for easier dissemination, use in telehealth visits, and updating as new evidence comes out.

Keywords: atrial fibrillation; encounter decision aid; patient decision aid; shared decision making; stroke prevention.

Grants and funding

K23 HL143156/HL/NHLBI NIH HHS/United States