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. 2025 Jan 7;272(1):96.
doi: 10.1007/s00415-024-12749-8.

Implementing proximity care for people with multiple sclerosis in Italy: the bottom-up approach of the StayHome project

M Filippi  1   2   3 , P Gallo  4   5 , C Gasperini  6 , G A Marfia  7 , C Avolio  8   9 , R Bergamaschi  10 , M Capobianco  11 , M Dotta  12 , L Grimaldi  13 , G Lus  14 , F Patti  15 , E Pucci  16 , R Quatrale  17 , P Solla  18 , P Bandiera  19 , C Angioletti  20 , M C Gallottini  20 , S Parretti  20 , L Pinto  20 , F Pavone  21 , S Sanzone  21 ; StayHome Project Working Group
Affiliations

Implementing proximity care for people with multiple sclerosis in Italy: the bottom-up approach of the StayHome project

M Filippi et al. J Neurol. .

Abstract

Objective: In Italy, around 137,000 people live with multiple sclerosis, facing organizational complexities due to the current model's limited focus on proximity care. This project aims to define a proximity model, in accordance with recent developments in the Italian healthcare landscape, engaging over 150 healthcare stakeholders and potentially impacting approximately 14,000 patients.

Methods: An analysis was pursued to map the multiple sclerosis pathway, followed by interviews to capture the actual implementation in Italian Multiple Sclerosis Centers. Through the experts' insights, an optimal proximity care pathway and a Maturity Model framework were defined. This model was piloted in 14 centers, and a preliminary pre-post analysis was performed to evaluate initial improvements. Finally, a two-round Delphi method validated the Maturity Model dimensions and a set of key performance indicators. A scientific board including neurologists, patient associations and scientific associations, supervised project progresses and methodologies.

Results: The Pilot study results show an overall increase in the centers' positioning within the Maturity Model levels after adopting center-specific action plans. To generalize the model, the Delphi panel validated a subset of process, volume, outcome and patient experience indicators (9 of 26 proposed) along with qualitative dimensions defining the Maturity Model (13 of 20 proposed), therefore, outlining a comprehensive monitoring framework for the multiple sclerosis patient pathway.

Conclusion: This study shows, for the first time in Italy, the efficacy of a bottom-up approach in addressing organizational challenges within the current multiple sclerosis scenario. This integrated model offers future opportunity for replication across various care pathways and settings.

Keywords: Multiple sclerosis care pathway; Organizational improvement; Proximity care.

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Conflict of interest statement

Declarations. Competing interests: Massimo Filippi is Editor-in-Chief of the Journal of Neurology, Associate Editor of Human Brain Mapping, Associate Editor of Radiology, and Associate Editor of Neurological Sciences; received compensation for consulting services from Alexion, Almirall, Biogen, Merck, Novartis, Roche, Sanofi; speaking activities from Bayer, Biogen, Celgene, Chiesi Italia SpA, Eli Lilly, Genzyme, Janssen, Merck-Serono, Neopharmed Gentili, Novartis, Novo Nordisk, Roche, Sanofi, Takeda, and Teva; participation in Advisory Boards for Alexion, Biogen, Bristol-Myers Squibb, Merck, Novartis, Roche, Sanofi, Sanofi-Aventis, Sanofi-Genzyme, Takeda; scientific direction of educational events for Biogen, Merck, Roche, Celgene, Bristol-Myers Squibb, Lilly, Novartis, Sanofi-Genzyme; he receives research support from Biogen Idec, Merck-Serono, Novartis, Roche, Italian Ministry of Health, Fondazione Italiana Sclerosi Multipla, and Fondazione Italiana di Ricerca per la SLA; Paolo Gallo has been a consultant and member of Advisory Board for Bayer Schering, Biogen Italy, Genzyme, Merck-Serono, Almirall, Roche and Novartis Farma; has received funding for travel and speaker honoraria from Merck-Serono, Biogen Idec, Sanofi-Aventis, Novartis-Pharma, Teva, Roche, Sandoz, Almirall and Bayer-Schering Pharma; has received research support from Bayer, Biogen Italy, Merk-Serono, Genzyme, Roche, Novartis and Teva. Claudio Gasperini received fee as speaker and advisory board by Almirall, Biogen, Merck, Sanofi, Novartis, Astra Zeneca, Sandoz, Roche. Girolama Alessandra Marfia has served as an advisory board member and received speaker honoraria, congress, travel and accommodation expense compensations from Alexion, Almirall, Merck Serono, Amgen, Bayer, Janssen Cilag, Bristol Myers-Squibb, Novartis, Roche, Biogen and Sanofi Genzyme. Carlo Avolio received honoraria for speaking, consultation fees and research grants from Biogen, Merck, Novartis, Roche, Sanofi, BMS, Alexion, Amgen. He is an Advisory Board member of Biogen, Merck, Novartis, Roche, Sanofi, BMS, Alexion, Amgen. Roberto Bergamaschi has served on scientific advisory boards, received funding for travel, speaker honoraria, research support from Biogen, Bristol Myers Squibb/Celgene, Janssen, Merck-Serono, Novartis, Roche, Sanofi-Genzyme. Marco Capobianco received personal compensation for consulting from Alexion, Biogen, Roche, Novartis, Sanofi, and Merck; research grant from Roche, Novartis and FISM. Michele Dotta has served on scientific advisory boards and received funding for travel and meeting participation, speaker honoraria, research support from Abbvie, Biogen, Merck-Serono, Novartis, Roche, Sanofi-Genzyme. Luigi M.E. Grimaldi in the last two years has served on scientific advisory boards, received funding for travel, speaker honoraria, research support from Biogen, Novartis, Merck, Roche, Bristol Myers Squibb, Janssen, Sanofi-Genzyme, Alexion. Giacomo Lus has served on scientific advisory boards, received funding for travel, speaker honoraria, research support from Alexion, Horizon, Biogen, Bristol Myers Squibb/Celgene, Janssen, Merck-Serono, Novartis, Roche, Sanofi-Genzyme. Eugenio Pucci during the 36 months prior to the submission, has received research support from "Associazione Marchigiana Sclerosi Multipla e altre malattie neurologiche—ODV-ETS. Rocco Quatrale has nothing to disclose. Carmen Angioletti, Maria Cristina Gallottini, Simone Parretti, Luca Pinto: IQVIA employment; IQVIA received professional service fees from Biogen. Sveva Sanzone and Francesco Pavone: are employees of and may hold stock/stock options in Biogen.

Figures

Fig. 1
Fig. 1
Representation of the methodological steps from the model definition to its validation
Fig. 2
Fig. 2
Schematic representation of the MS care delivery value chain, showing the different phases of the ICP and the relative actors and settings involved in the health services delivery
Fig. 3
Fig. 3
Representation of the dimensions of the Maturity Model framework. In the upper section, items related to specific phases of the ICP are reported. The lower section items are relevant for the whole pathway
See this image and copyright information in PMC

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