Table of Contents
- 0.1 A fragmented takeover
- 0.2 The challenge of SM centers in Italy: excellence and critical issues
- 0.3 Concrete solutions: the “Humanization” project and the PDTAs
- 0.4 A person-centered model of care
- 1 , these initiatives aim to enhance the overall experience and outcomes for individuals living with MS.
The conference organized by the Italian Multiple Sclerosis Association (Aism) concluded in Rome, at the Lifestyle Hotel, entitled “Planning, taking charge, humanization. Implementing PDTAs in the SM network”. The event, organized with the non-conditional support of Roche, brought together experts, people with MS and representatives of institutions and service networks to discuss the challenges of managing multiple sclerosis (MS) and neuromyelitis optica (NMOSD), bringing In the foreground are innovative solutions for increasingly coordinated and person-centred care.
Through the data of the Aism 2024 barometer and the testimonies collected, Aism illustrated the results of the “Humanization” project and the diagnostic-therapeutic care pathways (PDTA), aimed at improving the effectiveness and accessibility of services for people with MS .
“The barometer data confirm the urgency of greater coordination and integration between services for people with multiple sclerosis and related pathologies. Over half of people complain of difficulties in obtaining timely and adequate responses to their health and social needs. This is why Aism has set the goal of creating a care and assistance network that is not only effective, but also humane, and where citizens are an active part of the care path. The ‘Humanization’ project and the PDTAs represent the pillars of this vision.” declared Francesco Vacca, national president of Aism.
A fragmented takeover
The Aism 2024 barometer highlighted that over half of patients complain of a lack of coordination between health and social services and that in four out of ten cases it is not clear how these services are connected. Among the main critical issues encountered:
- 36.2% of patients wait too long for an MRI;
- 24.7% suffer delays in check-ups;
- 46.9% are dissatisfied with access to rehabilitation;
- 45.2% report a lack of psychological support;
- 19.6% consider home care inadequate.
The challenge of SM centers in Italy: excellence and critical issues
The survey of 180 of the 237 clinical centers for MS in Italy highlighted the importance of MS centers for over 90% of patients, with 70% receiving drugs to modify the course of the disease. However, significant obstacles remain: 80% of the Centers report staff shortages, 60% report weaknesses in social and local services, and 57% difficulties in managing clinical data.
Concrete solutions: the “Humanization” project and the PDTAs
To respond to these challenges, Aism has launched the “Humanization” project to build coordinated and person-centered care paths. “From our scientific observatory it clearly emerges how corporate and inter-company PDTAs manage to involve more professionals and guarantee interdisciplinary assistance, with positive impacts for the person and the healthcare system – underlined Mario Alberto Battaglia, president of the Italian Multiple Sclerosis Foundation (Fism ) – Through ‘Humanization’, we aim to make the best experiences replicable and guarantee increasingly personalized and inclusive treatment paths.”
Since 2020, the project has involved 16 company PDTAs, with a progressive expansion that has reached over 80 clinical centers throughout the national territory. These PDTAs have already benefited more than 4,000 patients, significantly improving their care experience and access to personalized pathways.
Paolo Bandiera, director of general affairs and institutional relations at Aism, explained: “The diagnostic-therapeutic care pathways (PDTA) constitute a fundamental tool for ensuring continuity and integration in the pathways of care, assistance and inclusion. Our objective is that each Region and network context of local services, starting from the reference MS centre, adopts organizational models that fully respond to the needs of people with MS, adapting to the characteristics of local systems. This project underlines the importance of co-programming and co-planning that involves decision-makers, professionals and patients, to orient and qualify priorities and systems, and improve services through an increasingly person-centred system”.
A person-centered model of care
The conference highlighted how the consolidated collaboration between Aism and Roche has given rise to shared strategies, today a point of reference for the discussion on care models and quality protocols. In recent years, innovative operational protocols have been developed that respond to the real needs of patients and which can be integrated into company Pdtas, thus improving the overall effectiveness of treatment paths. Aism’s experience, with its commitment to building a support network between patients, clinicians and professionals, is an added value in the design of an increasingly personalized and person-centred healthcare system.
The proposed models can be considered best practices to be applied in other healthcare facilities, contributing to greater uniformity and quality in care. Co-programming between patients, clinicians and decision-makers is essential to build truly integrated and effective treatment paths, responsive to the needs of those living with multiple sclerosis. Only through a shared and structured vision of care will it be possible to guarantee quality, fair and person-centred care.
, these initiatives aim to enhance the overall experience and outcomes for individuals living with MS.
[Interviewer] Good day, thank you for accepting my invitation to talk about the Aism conference which concluded yesterday in Rome. My first question is about the barometer data mentioned in the article, which indicates that over half of patients with MS complain about a lack of coordination between health and social services. Can you provide more insights on this issue?
[Guest 1] Certainly, the barometer data show a clear need for improved coordination and integration between different health and social services provided to people with MS. We found that many patients have to navigate a fragmented system, with long wait times for MRI scans, delayed check-ups, inadequate access to rehabilitation services, and insufficient psychological support. This fragmentation can lead to a significant burden on patients who often have to manage their care independently, and it can negatively impact their overall wellbeing and quality of life.
[Interviewer] That’s very informative, thank you. My next question is about the importance of MS centers for patients and the challenges they face. Can you tell us more about this?
[Guest 2] Absolutely, MS centers play a crucial role in the care and management of people with MS. They provide a centralized location where patients can access a range of services, including medication and rehabilitation. However, we found that there are significant challenges, such as staff shortages, weaknesses in social and local services, and difficulties in managing clinical data. These issues can hamper the effectiveness of care delivery and negatively impact patient outcomes.
[Interviewer] Interesting, I noticed that the article also mentions the “Humanization” project and diagnostic-therapeutic care pathways as potential solutions. Can you explain how these initiatives could help address the challenges faced by people with MS?
[Guest 1] The “Humanization” project seeks to build coordinated and person-centered care paths for people with MS. By involving different healthcare professionals and service providers, patients can receive more comprehensive and integrated care. The diagnostic-therapeutic care pathways (PDTA) are a key component of this project, as they ensure continuity and integration throughout the care journey. By standardizing treatment protocols and involving patients in decision-making
