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Conversion to secondary progressive multiple sclerosis: Multistakeholder experiences and needs in Italy
Ambra Mara Giovannetti1,2, Erika Pietrolongo3, Claudia Borreani4
1Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.
Patients transitioning to secondary progressive multiple sclerosis (SPMS) often lack awareness and require better support. Improving care pathways and empowering patients are crucial for managing SPMS effectively.
Area of Science:
- Neurology
- Patient Support
- Healthcare Management
Background:
- Secondary progressive multiple sclerosis (SPMS) presents a poor prognosis and significant socioeconomic burden.
- The Managing the Transition to SPMS (ManTra) project aimed to create user-led resources for SPMS patients.
Purpose of the Study:
- Assess the experiences and needs of Italian SPMS patients, their significant others (SOs), and healthcare professionals (HPs).
Main Methods:
- Conducted 15 semi-structured interviews with SPMS patients and 3 focus groups (SOs, neurologists, HPs).
- Utilized framework analysis on transcribed audio recordings of interviews and focus groups.
Main Results:
- Identified 100 sub-categories grouped into 4 themes: awareness, communication, symptom management, and needs.
- Major unmet needs identified in organization, empowerment training, information, and policies.
Conclusions:
- Highlighted a widespread lack of awareness regarding the transition to SPMS.
- Emphasized the need for improved care pathways, holistic multidisciplinary approaches, and enhanced patient information and support.
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