Development and usability testing of a patient decision aid for newly diagnosed relapsing multiple sclerosis patients.

BACKGROUND: Multiple sclerosis (MS) patients often struggle with treatment decisions, in part due to the increasing number of approved disease modifying therapies, each with different characteristics, and also since physicians can struggle to identify which of these characteristics matter most to each individual patient. Decision uncertainty can contribute to late treatment initiation and treatment non-adherence-causes of 'undertreatment' in MS. An interactive online patient decision aid that informs patients of their options, considers their individual preferences and goals, and facilitates conversations with their physicians, could improve how patients with relapsing forms of MS make evidence-based treatment decisions. OBJECTIVE: To develop and evaluate a prototype patient decision aid (PtDA) for first-line disease modifying therapies for relapsing-remitting multiple sclerosis. METHODS: Informed by previous studies and International Patient Decision Aid Standards guidelines, a prototype PtDA was developed for patients with relapsing multiple sclerosis considering first line treatment. Patients with relapsing multiple sclerosis were recruited from the University of British Columbia's Multiple Sclerosis Clinic to participate in either an online survey or a focus group. Online survey participants completed the PtDA, followed by measures of acceptability, usability, and preparedness for decision-making, and provided general feedback. Focus group participants assessed usability of the revised PtDA. The analysis of qualitative and quantitative data led to improvements of the PtDA prototype. RESULTS: The prototype PtDA received high ratings for acceptability and usability, and after its use, participants reported high-levels of preparedness for decision-making. Analysis of all qualitative data identified three key themes: the need for credible information; the usefulness of the PtDA; and the importance of normalizing and sharing experiences. Nine content areas were identified for revision. Overall, participants found the PtDA to be a valuable tool for facilitating treatment decisions. CONCLUSIONS: This mixed methods study has led to the development of a PtDA that can support patients with RRMS as they make treatment decisions. Future studies will assess the feasibility of implementation and the impact of the PtDA on both the timely treatment initiation and longer-term adherence.

Preliminary testing of a patient decision aid for patients with relapsing-remitting multiple sclerosis.

BACKGROUND: Multiple first-line disease modifying therapies (DMTs) are available for relapsing-remitting multiple sclerosis (RRMS), each with different characteristics. We developed an interactive patient decision aid (PtDA) to promote informed shared decision-making (SDM). OBJECTIVE: To test the preliminary effectiveness of the PtDA in participants with RRMS. METHODS: Knowledge, and decisional conflict were measured pre- and post- implementation of the PtDA, SDM after the consultation, and 6-month treatment patterns were observed. Differences in scores were analyzed using descriptive statistics and paired t-tests. Qualitative interviews with patients and neurologists were analyzed using thematic analysis. RESULTS: 52 participants were recruited: most were female (81%), 40 years of age or younger (62%), and had experienced MS for less than 5 years (56%). After participants used the PtDA, there was a significant improvement in decisional conflict (change = 1.00; p < 0.001) and knowledge (change = 2.15, p < 0.001). Nearly all patients wanted SDM, and 25 (56%) reported this occurred in their consult. Qualitative results suggested the PtDA supported both patients and neurologists in making decisions. CONCLUSION: This pilot study suggests that PtDA use helps RRMS patients and their clinician select a DMT. Future studies will assess the feasibility of implementation and the impact of the PtDA on timely DMT initiation and longer-term adherence.