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

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.