A Novel Tool to Improve Shared Decision Making and Adherence in Multiple Sclerosis: Development and Preliminary Testing

Nananda Col; Enrique Alvarez; Vicky Springmann; Carolina Ionete; Idanis Berrios Morales; Andrew Solomon; Christen Kutz; Carolyn Griffin; Brenda Tierman; Terrie Livingston; Michelle Patel; Danny van Leeuwen; Long Ngo; Lori Pbert

doi:10.1177/2381468319879134

A Novel Tool to Improve Shared Decision Making and Adherence in Multiple Sclerosis: Development and Preliminary Testing

MDM Policy Pract. 2019 Oct 16;4(2):2381468319879134. doi: 10.1177/2381468319879134. eCollection 2019 Jul-Dec.

Authors

Affiliations

¹ Shared Decision Making Resources, Georgetown, Maine.
² University of Colorado, Denver, Colorado.
³ University of Massachusetts Memorial Health Care, Worchester, Massachusetts.
⁴ University of Vermont, Burlington, Vermont.
⁵ Colorado Springs Neurological Associates, Colorado Springs, Colorado.
⁶ EMD Serono, Rockland, Massachusetts.
⁷ Beth Israel Deaconess Medical Center, Boston, Massachusetts.
⁸ University of Massachusetts Medical School, Worchester, Massachusetts.

Abstract

Background. Most people with multiple sclerosis (MS) want to be involved in medical decision making about disease-modifying therapies (DMTs), but new approaches are needed to overcome barriers to participation. Objectives. We sought to develop a shared decision-making (SDM) tool for MS DMTs, evaluate patient and provider responses to the tool, and address challenges encountered during development to guide a future trial. Methods. We created a patient-centered design process informed by image theory to develop the MS-SUPPORT SDM tool. Development included semistructured interviews and alpha and beta testing with MS patients and providers. Beta testing assessed dissemination and clinical integration strategies, decision-making processes, communication, and adherence. Patients evaluated the tool before and after a clinic visit. Results. MS-SUPPORT combines self-assessment with tailored feedback to help patients identify their treatment goals and preferences, correct misperceptions, frame decisions, and promote adherence. MS-SUPPORT generates a personal summary of their responses that patients can share with their provider to facilitate communication. Alpha testing (14 patients) identified areas needing improvement, resulting in reorganization and shortening of the tool. MS-SUPPORT was highly rated in beta testing (15 patients, 4 providers) on patient-provider communication, patient preparation, adherence, and other endpoints. Dissemination through both patient and provider networks appeared feasible. All patient testers wanted to share the summary report with their provider, but only 60% did. Limitations. Small sample size, no comparison group. Conclusions. The development process resulted in a patient-centered SDM tool for MS that may facilitate patient involvement in decision making, help providers understand their patients' preferences, and improve adherence, though further testing is needed. Beta testing in real-world conditions was critical to prepare the tool for future testing and inform the design of future studies.

Keywords: adherence; chronic disease; communication; image theory; multiple sclerosis; patient preferences; shared decision making; values clarification.