Developing and testing an interactive online patient decision aid to assist those newly diagnosed with relapsing remitting multiple sclerosis
SUMMARY: With a number of approved disease modifying therapies (DMTs) available for people with relapsing-remitting multiple sclerosis (RRMS), a team of researchers from the University of British Columbia sought to develop and evaluate a prototype for an interactive online patient decision aid that informs patients of their options for first-line DMTs. This decision aid also considers individual preferences and goals and helps patients have informed conversations with their physicians for shared decision-making.
BACKGROUND: Newly diagnosed RRMS patients often struggle with treatment decisions given the number of DMTs, the lack of useful markers to predict disease trajectory in individual patients, in addition to the different factors that must be considered, including DMT side-effect profiles, routes of administration, monitoring, availability, and cost. Given the choices, it can delay decision-making and ultimately treatment initiation. Improving informed decision-making can help accelerate treatment initiation and adherence to treatment to gain maximal benefit from DMTs.
STUDY: Building on previous studies and international patient decision aid standards, a prototype was developed for use by people in British Columbia with RRMS considering a first-line DMT. People with MS participated in the study in either an online survey or focus group to evaluate the prototype and provide feedback on acceptability, usability and preparedness for decision-making.
RESULTS: From this study, the researchers found the patient decision aid highly usable and acceptable. The specific feedback provided by people affected by MS will be used to further refine the prototype. Importantly, participants found that a patient decision aid addressed a need for consistent, accessible information in a single location. More work is needed to expand the patient decision aid for use with other patient groups and tailored to each clinic/region where different treatments may be available, different clinical pathways are in place and patients may have difference preferences for attributes of treatment in MS. The patient decision aid prototype is accessible at www.msdecisionaid.com.
IMPACT: This research lays the foundation for and promotes shared decision-making between the patient and physician by assessing patient values and preferences and by providing people affected by MS with a credible source of information on available first-line DMTs. Further research will assess the decision aid to determine its feasibility of implementation and the impact on both timely treatment and longer-term adherence.
Research study is published in the journal BMC Neurology – link.
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