The effort to individualize MS care to optimal effect for each patient has been greatly enhanced in recent years by the identification of distinct phenotypes, or forms, of multiple sclerosis that have different clinical courses and responses to disease-modifying therapies (DMTs).
Of course, for people with MS to be full partners in formulating treatment plans that draw on this knowledge, they need to know which phenotype they have and understand how that form of MS tends to present over the years. A recent research initiative found that one in five people with MS lack this critical information. [Rudell CMSC 2020]
The finding emerged from an analysis of data entered by more than 3,700 people with MS into My MS Manager™, a HIPAA-compliant patient app developed in a collaboration between the Multiple Sclerosis Association of America (MSAA) and @Point of Care. (@Point of Care also created a complementary app for clinicians, Multiple Sclerosis@Point of Care; the two apps facilitate information sharing between patients and their clinicians.)
The analysis of patient-entered data found that 20% of people with MS using the app did not know what phenotype – such as relapsing-remitting MS (RRMS), secondary-progressive MS SPMS), or primary-progressive MS (PPMS) – they had. This lack of information tended to be most pronounced in patients between 20 and 39 years of age. While the finding speaks to an ongoing educational need, other results to emerge from the analysis underscored the benefits of the app and revealed how information interests varied by participant phenotype. For example, people with RRMS most often watched the apps’ videos on wellness tips and MS symptoms, while the most popular videos for people with SPMS focused on types of MS and the importance of long-term treatment. Among people with primary-progressive MS, the videos of greatest interest addressed who gets MS and the assistance available from MSAA.
The data analysis also yielded important insights into the demographics of people with MS. The ratios of females to males with various MS phenotypes accorded with those identified in other studies and databases, such as the MSBase Registry. Specifically, there were three times as many females as males for most phenotypes, although that sex differential declined to 1.5 female-to-male for SPMS. The study’s authors noted that males with PPMS are twice as likely as females to experience clinical deterioration over a 10-year period, making it important for clinicians to identify PPMS promptly in those patients and initiate an approved therapy for them. Considering the totality of their findings, the authors of the analysis concluded, “The My MS Manager™ patient app facilitates MS patients’ ability to record their clinical phenotype, access educational videos—including those addressing phenotype, and empower them to better understand MS phenotypes and implications for treatment choices for discussion with their clinicians. This will ensure optimal treatment choices.”