Pandemia in the life of persons with MS in Italy

ABSTRACT

Inroduction Persons with MS (PwMS) need regular access to healthcare and social inclusion services to maintain their wellbeing and quality of life. The Covid-19 pandemic caused discontinuities to a broad range of services, because much of the health system's efforts were diverted towards the response to Covid patients, and because social distancing reduced the capacity of care providers overall. Some providers implemented various forms of telemedicine and remote monitoring to minimize discontinuities. Aim: To investigate on the reported impact of the pandemic on availability of services, on the perceived health status and psychological wellbeing of PwMS. Methods: 1,797 PwMS living in Italy participated to an online survey carried out by the Italian MS Society (AISM) between March 18, 2020 and April 8, 2021. Participants were recruited through AISM's website and social network pages, and via email to PwMS who had provided their address and agreed to be invited to regular surveys. Results: The sample is consistent with the known characteristics of the Italian population with MS, based on age, gender and area of residence (albeit with a slight underrepresentation of those living in the southern and insular regions). 64% of PwMS needed health care during the year of the pandemic, but 42% of them could not receive all the care they needed, 27% needed psychological support and 50% could not receive all of it. 32% needed rehabilitation, and 65% of them could not receive all of it. 26% needed personal care and support, and 68% of them could not receive all of it. 22% felt that their MS got worse because of the pandemic, especially those with self-reported EDSS >=6 (37%). 62% reported feeling isolated, 51% felt anxious, 40% felt depressed and 28% felt abandoned because of the pandemic. 45% reported that they could receive some form of remote monitoring, while 10% could receive some remote therapy. Conclusions: Despite the availability of some remote services, the pandemic had a negative impact on the accessibility of a broad range of services needed by PwMS in Italy. Many Italian PwMS attribute to the pandemic the negative evolution of their MS and their current psychological discomfort.