Understanding the Impact of Multiple Sclerosis on Quality of Life: An Italian Pilot Study

Abstract

Backgorund. Multiple sclerosis (MS) profoundly affects the lives of patients and their families. The experience of the disease is shaped not only by its progression and specific characteristics but also by the quality of medical and caregiving support received. The diagnosis of MS represents a transformative event that may lead to job loss, the need for continuous care, and a significant reorganization of family roles. In Italy, more than 140,000 people are affected by MS (AISM data, 2024). The impact of the disease is multifaceted and complex, involving various aspects of the patient’s life. Dependence on external assistance often becomes an unavoidable necessity, highlighting the importance of exploring the quality of life of people with MS in the Italian context. The main objective is to assess the quality of life of individuals affected by MS, both before diagnosis and during the course of the disease. A secondary aim is to identify related psycho-physical consequences, including care-related needs. Methods: An online survey was conducted through various associations operating across Italy, involving a sample of 99 individuals diagnosed with MS. Results: The results show a predominance of female participants, with a mean age of 41 years. The disease was reported to be at an early stage in 66.7% of cases and advanced in 33.3%, with none of the respondents being in a terminal phase. The most frequent clinical form was relapsing–remitting MS (RRMS), which accounted for 78.8% of the cases. In terms of employment and daily activities, more than half of the participants reported underperforming (59.6%) or limiting specific tasks (51.5%) due to disability caused by the disease. Emotional distress had even more pronounced effects, with 63.6% reporting a decline in performance and 62.6% experiencing concentration difficulties. Quality of life was significantly affected, particularly in the physical and emotional domains. Vitality, physical pain, perceived health, and psychological well-being emerged as compromised dimensions, pointing to the need for a multidimensional care model that integrates therapeutic, rehabilitative, and psychosocial interventions. Individuals in the early stages of MS tended to maintain better work relationships and demonstrated higher levels of professional engagement. Conclusions: The findings underscore the importance of a continuous and personalized care approach, addressing not only clinical treatment but also psychological and social support. These aspects are crucial for monitoring patients’ needs, promoting quality of life, facilitating disease acceptance, and mitigating psychological distress.