A new study shows that 40% of patients in Italy and Germany who have secondary progressive multiple sclerosis (SPMS) are not aware of their diagnosis, indicating a need for significant improvement in patient-physician communication.
The study, “Conversion to Secondary Progressive Multiple Sclerosis: Patient Awareness and Needs. Results From an Online Survey in Italy and Germany,” was published in the journal Frontiers in Neurology.
Approximately 15 years after the clinical onset of relapsing-remitting multiple sclerosis (RRMS), more than 50% of patients develop SPMS. SPMS is characterized by irreversible progression of disability that is independent of a relapse, although patients with SPMS can still experience relapses (active SPMS).
Conversion of a patient from RRMS to SPMS is considered a key determinant of long-term disease prognosis.
The RRMS–SPMS transition also is important from the psychosocial point of view. Patients with SPMS and their families face not only new-found uncertainty, but also have to adjust to a new reality of symptoms, limitations to their daily activities, and the scarcity of effective disease-modifying treatments (DMTs).
Managing the Transition to SPMS (ManTra) is a project being conducted in Italy and Germany to develop and evaluate complex interventions for newly-diagnosed SPMS patients. The project goals are to assess the experiences and needs of people who have recently converted to SPMS, and to set up a user-led resource to improve the quality of life and autonomy of patients with newly diagnosed SPMS.
In previous ManTra project actions, researchers identified the needs of patients transitioning to SPMS via a literature review and a qualitative study, which was composed of semi-structured interviews with recently diagnosed SPMS patients, patients’ significant others, neurologists, and other health professionals.
In this study, researchers document the results of an online patient survey conducted in Italy and Germany to assess the experiences of people recently diagnosed with SPMS (within five years or less), and to verify whether the needs identified in the qualitative ManTra study are applicable to a larger sample of SPMS patients.
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