During ECTRIMS 2025, MS Nurse Pro organised two dedicated nursing sessions. The first featured invited speakers Francesco Pastore, Miguel Angel Robles Sanchez and Emilio Cortegoso Lobato, who addressed the role of health literacy and patient activation in strengthening patient engagement and improving care for people living with MS.
You can access their presentation slides in our catalogue.
Living with multiple sclerosis (MS) requires people to navigate complex information, make ongoing treatment decisions, and adapt to changing symptoms over time. In this context, health literacy—the ability to access, understand, appraise, and use health information and services—is not a “nice to have,” but a fundamental determinant of health outcomes and equity.
Closely linked to health literacy is patient activation: the knowledge, skills, and confidence people need to manage their own health. Together, these two concepts shape how people with MS engage with care, adhere to treatment, and maintain quality of life. Increasingly, evidence shows that MS nurses play a pivotal role in strengthening both.
Health literacy is not a fixed individual trait. It follows a social gradient, is influenced by education, digital access, cognitive function, health system complexity, and can change over time. For people with MS, these challenges may be amplified by fatigue, cognitive difficulties, emotional burden, and fluctuating disability.
Recent research programmes have addressed a long-standing gap: the limited evidence on health literacy in MS populations and the role of nurses in promoting it. Since 2021, a structured research agenda has explored multiple dimensions of health literacy in MS, including:
Cross-sectional studies conducted between 2021 and 2025 show that people with MS often experience uneven levels of health literacy, as lower scores are associated with higher unmet needs, lower satisfaction, and increased vulnerability. Similar challenges have been observed globally in related conditions such as NMOSD, particularly in digital, navigational, and communication literacy.
Why does health literacy matter so much? Because it directly influences patient activation.
Evidence from nurse-led interventions demonstrates that when people with MS better understand their condition, treatments, and healthcare system, they are more likely to:
One example is the Expert Patient Program developed and evaluated in Catalonia. This nurse-facilitated programme brought together small groups of people with MS to share knowledge, experiences, and practical strategies for self-management. Results showed:
These findings illustrate a crucial point: patient activation is not about shifting responsibility onto patients, but about enabling them—through structured support—to engage meaningfully with care.
MS nurses are uniquely positioned to strengthen both health literacy and patient activation. Through ongoing relationships with patients, they act as:
For this role to be effective, nurses also need health-literate systems—including clear communication tools, supportive digital solutions, integrated care pathways, and recognition of nursing expertise.
