Conceptual Model of Shared Decision Making and Patient Engagement in Neurology (P1.358)

Objective: To develop a conceptual model of patient and family engagement in neurological clinical care and shared decision making (SDM) in this context. Background: There is an increasing emphasis on patient engagement in clinical care, research, and clinical practice guidelines and also on SDM within clinical encounters. Evidence suggests that the degree to which patients are engaged in care decisions varies by subject. SDM is particularly important in neurologic care given that many neurologic diseases have multiple treatment options without one clear best approach. Methods: Based on literature, patient engagement experience, and neurology clinical practice, authors drafted a conceptual model of patient engagement and SDM within clinical encounters. This was revised iteratively based on discussion and after presentation to a patient advocacy group. Results: The final model illustrates the importance of understanding patients’ values and goals to inform SDM discussions. Family members also play a role in clarifying and representing patients’ values and goals, particularly in neurological diseases with associated cognitive impairment. Having first identified values and goals, clinicians can then better engage patients and families in SDM, presenting pros and cons of different approaches tailored to the patient’s stated values and goals. Clinical practice guidelines, SDM tools, and decision aides can assist in discussions. Examples of the model within neurologic practice are presented. Conclusions: The developed model highlights the importance of understanding patients’ individual values and goals in order to successfully engage them in neurologic care decisions. Disclosure: Dr. Armstrong has received personal compensation from the American Academy of Neurology as a consultant. Dr. Armstrong has received research support from Abbvie, the Parkinson Study Group (PSG), the Huntington Study Group (HSG), and CHDI Foundation, Inc. Dr. Vandigo has nothing to disclose. Dr. Mullins has received personal compensation for activities with Bayer and Pfizer as a consultant. Dr. Shulman has received research support from Kyowa Pharmaceuticals.