Public health and multiple sclerosis in Italy

Abstract

Abstract Background Multiple Sclerosis (MS) is a complex and progressive disease of the central nervous system. In Italy, prevalence of MS ranges from 198 (continental Regions) to 370 (Sardinia) per 100,000. Despite a National Health System, differences among Regions cause inequalities in access to and quality of care, also involving chronic diseases and disabilities, including MS. Methods Interviews and focus groups involving persons with MS, caregivers, institutions, patients association and other stakeholders were conducted in 2019, to evaluate MS policy landscape, existing services, guidelines and care pathways regarding diagnosis, therapy, follow up, strenghts and weaknesses. Results 600 MS specialized neurologists and 350 MS nurses operate in 240 MS Centers located in hospital neurology departments providing clinical care, disease modifying drugs (DMDs), interdisciplinary care. 13 Regions on 20 approved a PDTA (Diagnosis, Therapy, Care Pathway), other are due by 2020. A reference national PDTA has been already discussed by Regional Health Authorities Conference and Ministry of Health. Regional multistakeholder observatories will be organized. A national MS registry started in 2017, at present involving over 140 Centers and including data of 50% (60.000 patients) of estimated prevalence. Discussion MS specialized centers are recognized as the key component of MS care in Italy and the main refererral for 80% of patients, also taking in account that over 60% of patients receive a DMD. Access to rehabilitation is lacking and hospital, community and primary care linkage is needed, also considering transition from early stages to severe disability. Access to psycological support is variable and cost containment strategies restrict drug access and symptomatic care in some areas along with lacking of interdisciplinary management. It is mandatory to integrate health and social care pathways accordingly with the National Plan for Chronicity in which MS has to be included. Key messages MS specialized centers are the backbone care network in Italy. Integrated care pathways (PDTA) stated as National Health System rules define the right for the patients to receive the proper care.