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.
Additionally, researchers explored the characteristics associated with patient awareness of RRMS–SPMS transition.
Among the 215 participants in the study, 57% of patients in Italy were aware of their SPMS diagnosis, compared to 77% of patients in Germany.
In both countries, more than 80% of participants who were aware of their condition received a SPMS diagnosis from a neurologist. The satisfaction with the manner in which their diagnosis was disclosed to them was moderate to high. Nevertheless, 28%–35% of patients obtained second opinions, and 48%–56% reported they did not receive any information about that form of the disease.
Furthermore, 63% of participants in Germany were actively seeking further information regarding their diagnosis, compared to only 31% in Italy.
Geographic area was found to be an independent variable associated with patient awareness, as patients in central and southern Italy were less likely to be aware of their condition, compared to patients in Germany.
Additionally, activity limitations were another independent variable associated with patient awareness, as patients with activity limitations were 7.8-times more likely to be aware of their diagnosis compared to autonomous patients.
“The logistic model found that patients fully dependent in activities of daily living were at higher odds of being aware of their conversion to SPMS, indicating that they probably realized that they had achieved irreversible disability progression,” researchers wrote.
Regarding the previously pre-specified needs identified in the ManTra project, “patients scored all the 33 pre-specified needs as a lot to extremely important, without any differences between those aware and not aware/unsure of their conversion to SPMS, and across countries,” researchers wrote.
Of note, two prioritized needs — “physiotherapy” and “active patient care involvement” — were shared by both Italian and German patients.
Two others differed across countries, with “individualized healthcare plan,” and “information on social rights and policies” being more important in Italy, while “psychological support” and “cognitive rehabilitation” were more of a priority in Germany.
Overall, the team concluded that “around 40% of these patients were not aware of their disease form, indicating a need to improve patient-physician communication. Physiotherapy and active patient care involvement were prioritized in both countries.”
According to the study, the formulation of a SPMS diagnosis is not straightforward; however, it is a key prognostic factor that affects decisions and planning at the healthcare and personal level. As a result, the researchers emphasized that “a clear and effective communication to the patient is an ethical imperative.”
And if you are a person with MS in the United States, it’s best if SPMS doesn’t appear in your health records as insurance will likely deny you DM medication. Which of course puts you at risk for more progression. Brilliant!
True worldwide!!
How can they not know? I told my doctor I was changing! I read a lot and know how I feel.
I had to tell my neuro that I was SPMS, after being RRMS for around 15 years. My walking abilities had really started to decline, but I didn’t have any new “symptoms” and my MRI was showing no activity. I wish we could have had “the talk” before time. It would have helped prepare me for what was to come.
Same here in the States. Nobody told me I progressed to the next stage. I figured it out on my own. Walking, numbness, balance issues in a steady decline, yet no new MRI lesions for years.
If a pwMS is diagnosed with SPMS what changes? The first thing is access to DMT, there are less treatments approved to treat SPMS!!
I trust my neurologist, even without diagnosis he knows the best for me, RRMS gives more to “pick” !!