There are few disease-modifying therapy (DMT) options for patients with progressive forms of multiple sclerosis (MS), and HCPs may feel limited in their ability to treat this subset of MS patients. However, these patients may continue to seek treatment alternatives to slow disease progression and reduce symptom severity.
To examine progressive MS patients’ interests in treatment and clinical trials as well as their perceptions of HCP interactions, for helping HCPs to better meet patient needs.
The Multiple Sclerosis In America survey (MSIA) was fielded by Health Union, LLC in 2019 to patients with MS via online sources including MultipleSclerosis.net. Survey questions included symptoms, relapse experience, HCP interaction, DMT usage, and quality of life measures. Descriptive statistics and comparison tests were used to examine patient reported outcomes.
The 845 patients with a progressive form of MS currently using a DMT were included in the analysis (73.4% female, 92.5% Caucasian, mean age 56.3 years); 69.1% diagnosed within past 20 years, with 76.3% initially diagnosed RRMS. 41.3% currently PPMS, 58.7% SPMS, 51.0% on disability, 99.5% had some form of health insurance, and 73.7% seeing a MS specialist. 211 reported that their MS was controlled on current treatment plan and 634 indicated their MS was not controlled, also reporting more symptoms and relapses. Compared to those controlled on DMT, those not controlled report not having regular MRIs to track progression and feel their HCP does not do as well explaining treatment options, reviewing MRI results, discussing quality of life on treatment, or understanding their questions. Despite differences in perceived level of control, more than half actively seek out information about latest MS medications. Those not controlled on their DMT are more interested in MS clinical trial participation (68.8%), as well as apt to visit prescription medication websites (32.3%) and more likely to seek other patients’ opinions of a medication online (41.5%), than their counterparts.
Our study illustrates how progressive MS patients are hopeful and engaged in finding a treatment for controlling their symptoms and progression, however some, feel like they have been overlooked by their HCP. Given the positive outcomes of using a DMT among progressive MS patients, HCPs should continue to work with patients to search for effective treatment options for them, as well as provide needed support and validation.