Conversion to Secondary Progressive Multiple Sclerosis: Patient Awareness and Needs. Results From an Online Survey in Italy and Germany

Abstract

Background: Few studies have investigated the experiences of patients around the conversion to secondary progressive multiple sclerosis (SPMS). ManTra is a mixed-method, co-production research project conducted in Italy and Germany to develop an intervention for newly-diagnosed SPMS patients. In previous project actions, we identified the needs and experiences of patients converting to SPMS via literature review and qualitative research which involved key stakeholders. Aims: The online patient survey aimed to assess, on a larger and independent sample of recently-diagnosed SPMS patients: (a) the characteristics associated to patient awareness of SPMS conversion; (b) the experience of conversion; (c) importance and prioritization of the needs previously identified. Methods: Participants were consenting adults with SPMS since ≤5 years. The survey consisted of three sections: on general and clinical characteristics; on experience of SPMS diagnosis disclosure (aware participants only); and on importance and prioritization of 33 pre-specified needs. Results: Of 215 participants, those aware of their SPMS diagnosis were 57% in Italy vs. 77% in Germany ( p = 0.004). In both countries, over 80% of aware participants received a SPMS diagnosis from the neurologist; satisfaction with SPMS disclosure was moderate to high. Nevertheless, 28–35% obtained second opinions, and 48–56% reported they did not receive any information on SPMS. Participants actively seeking further information were 63% in Germany vs. 31% in Italy ( p < 0.001). Variables independently associated to patient awareness were geographic area (odds ratio, OR 0.32, 95% CI 0.13–0.78 for Central Italy; OR 0.21, 95% CI 0.08–0.58 for Southern Italy [vs. Germany]) and activity limitations (OR 7.80, 95% CI 1.47–41.37 for dependent vs. autonomous patients). All pre-specified needs were scored a lot or extremely important, and two prioritized needs were shared by Italian and German patients: “physiotherapy” and “active patient care involvement.” The other two differed across countries: “an individualized health care plan” and “information on social rights and policies” in Italy, and “psychological support” and “cognitive rehabilitation” in Germany. Conclusions: Around 40% of SPMS 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.

Conversion to secondary progressive multiple sclerosis: Multistakeholder experiences and needs in Italy

“…Lack of awareness about the transition to SPMS was surprisingly recurring among the patients who participated in the interviews. This result was also confirmed by the online survey that followed, reporting an unawareness rate of 43% within the Italian participants [21]. The qualitative study suggests some explanations for this lack of awareness.…”

“…The complexity of this dynamic can also explain the mismatch observed by Solari et al in the online survey. While patient-neurologist agreement on age at MS diagnosis was very high, patients reported age at SPMS conversion 2.7 years lower on average than neurologists [21], suggesting that there is a certain amount of time in which the patient is alone in dealing with the signs of the transition and her/his own worries and thoughts. All these aspects may amplify the risk of feelings of helplessness, a lack of directions for symptom management, and lack of support from the healthcare system already detected in a recent longitudinal study on the transition to SPMS [10].…”

Construction of a User-Led Resource for People Transitioning to Secondary Progressive Multiple Sclerosis: Results of an International Nominal Group Study

“…In a previous round of the ManTra project (round 1; Figure 1), we identified 33 needs of people converting to SPMS via literature review and a qualitative study [personal semi-structured interviews with recently diagnosed pwSPMS; focus group meetings with pwSPMS' significant others (SOs), neurologists, and other healthcare professionals (HPs)] (10). An online survey with 215 recently diagnosed pwSPMS followed, assessing the characteristics associated with people's awareness of SPMS conversion, the experience of conversion, and the importance and prioritization of the 33 identified needs (11). Around 40% of survey participants were not aware of having SPMS (43% in Italy vs. 33% in Germany; p = 0.004).…”

“…Activity limitations and geographic area were variables independently associated with pwSPMS awareness. Participants judged all the 33 needs identified as a lot to extremely important (11). The top four prioritized needs in Italy were "physiotherapy and exercise programs" (prioritized by 43% of survey participants), followed by "personalized care plan" (33%), "patient active involvement in care" (21%), and "information on social rights and policies" (17%).…”

“…The top four prioritized needs in Italy were "physiotherapy and exercise programs" (prioritized by 43% of survey participants), followed by "personalized care plan" (33%), "patient active involvement in care" (21%), and "information on social rights and policies" (17%). The top prioritized needs in Germany were "physiotherapy and exercise programs" (40%), "patient active involvement in care" (22%), "psychological support for patients" (22%), and "cognitive rehabilitation" (21%) (11).…”