The Need for a Patient Decision Aid in Multiple Sclerosis

November 1, 2019
Laura Joszt, MA
Laura Joszt, MA
Laura Joszt, MA

Laura is the editorial director of The American Journal of Managed Care® (AJMC®) and all its brands, including The American Journal of Accountable Care®, Evidence-Based Oncology™, and The Center for Biosimilars®. She has been working on AJMC® since 2014 and has been with AJMC®'s parent company, MJH Life Sciences, since 2011. She has an MA in business and economic reporting from New York University.

As the number of disease-modifying therapies available for multiple sclerosis increases, patients and physicians can struggle to identify the right one for the right patient, highlighting the need for a patient decision aid.

As the number of disease-modifying therapies (DMTs) available for multiple sclerosis (MS) increases, patients and physicians can struggle to identify the right one for the right patient, highlighting the need for a patient decision aid (PtDA).

A prototype PtDA has been shown to prepare patients to make treatment decisions and have conversations with their physicians regarding their preferences and goals, according to a study published in BMC Neurology.

“Shared decision making using PtDAs can help patients feel better informed and have a better understanding of their own values, and may improve assessment of treatment risk and quality of treatment decisions,” the authors noted.

To develop the prototype aid, a multidisciplinary steering committee made up of MS specialists, patients, software developers, and researchers with expertise in decision making was formed. The initial PtDA included a module that collected a brief medical history; a module that presented effectiveness and side effect profiles of the DMTs available to patients in British Columbia; a module guiding patients to consider the attributes of treatment that matter the most to them; a module that compares treatment options and identifies the best treatment based on information in the first 2 modules; and a summary screen.

The authors then implemented a web survey to assess the acceptability, usability, and usefulness of the prototype. A total of 18 patients with MS participated in the survey and another 7 participated in a focus group.

They assessed usability with the System Usability Scale (SUS), which uses a 5-point Likert scale. The SUS yielded a mean score of 80.6—a score above 68 indicates above average usability. All patients said the PtDA was “easy to use,” “well integrated,” and consistent.

Nearly three-fourths (72%) of patients said the PtDA presented the right amount of information and 67% said the information was presented in a balanced manner. However, only half of patients said the information presented aligned with the information they received from health professionals.

In the focus group, 3 themes were identified: the need for information that the PtDA providers, the usefulness of the decision aid, and the importance of normalizing and sharing experiences. Focus group members noted that the aid would have made them feel less overwhelmed in their initial neurological consultations.

“The PtDA lays the foundation for and promotes SDM [shared decision-making] by both assessing patient preferences for SDM and by providing clear, credible information on treatments,” the authors concluded. “Thus, the PtDA allows physician consultations to focus on patient priorities, preferences, and questions rather than information provision.”

Reference

Bansback N, Chiu JA, Carruthers R, et al. Development and usability testing of a patient decision aid for newly diagnosed relapsing multiple sclerosis patients BMC Neurol. 2019;19:173. doi: 10.1186/s12883-019-1382-7.