OBJECTIVES: Quantify patient satisfaction and main unmet needs, and to characterize the Multiple Sclerosis (MS) patient journey in Portugal, through patient-reported experiences, in order to propose areas of intervention to meet those needs.

METHODS: An exploratory sequential mixed-methods design was implemented. The initial phase consisted of quantitative data collection through an online questionnaire, followed by five focus groups. Descriptive data analysis on patient satisfaction was complemented with content analysis for the identification of the main unmet needs alongside the patient journey, within five pre-defined steps: onset of symptoms, first appointment, diagnosis, treatment, and follow-up. Subsequently, patients were asked to suggest recommendations that could lead to improvements in their experience. The recruitment of participants was made by the Portuguese MS Society.

RESULTS: A total of 555 patients answered the questionnaire (in 2021), and 21 participated in the focus groups (in 2022). 80% and 58% of patients are satisfied with their follow-up in neurology and general medicine, respectively. 35% expressed the need of a multidisciplinary follow-up, mostly by psychologists (41%). 48% are accompanied by a nurse specialized in MS. In content analysis, 19 unmet needs were identified throughout the five-step journey, such as: lack of awareness of health professionals for initial symptoms; difficult access to specialist appointment within the public sector; lack of psychological support after diagnosis; low involvement in treatment choice and absence of a follow-up multidisciplinary team (psychologists, physiotherapists, nurses, social workers). 12 recommendations were proposed, including: more and improved information at diagnosis, home-based treatment by a multidisciplinary team, communication training for health professionals and increased health literacy of the general population.

CONCLUSIONS: In Portugal, patients with MS face many challenges alongside their journey, especially during medical and social follow-up, which are fundamental throughout life. This exploratory study can set the starting point for the development of future initiatives to address patients’ unmet needs.