MeDeMSA care study protocol: developing personalized best medical care with integrated mobile palliative and...

Multiple system atrophy (MSA) represents a management challenge due to its variable clinical presentation, and lack of established multidisciplinary care protocols. In advanced stages, physical barriers often prevent access to specialized care, leaving patients and caregivers to face complications and fear alone. This 18-month, monocentric, open-label study evaluates the impact of a personalized, multidisciplinary treatment, integrating mobile palliative care, on the quality of life (QoL, measured by EQ-5D-5L indices) of MSA individuals compared to a matched historical European MSA cohort. Forty-six participants will undergo baseline clinical, psychological, and neuro-rehabilitation assessments, along with an online interview to identify individual healthcare preferences. These assessments will guide personalized therapeutic plans, including palliative care, self-directed physio-, speech, and occupational exercises, based on operational protocols informed by evidence and good clinical practice. Six-, 12-, and 18-month follow-ups will reassess needs and adapt plans to address disease progression and changing preferences, ensuring continuous personalization. Repeated interviews at month-12, phone-calls and satisfaction surveys at month-1, 7, 13, and 18 will monitor compliance, identify barriers, and gather feedback. A subgroup of 23 participants will be block-wise randomized to additionally receive monthly and on-demand telemedicine visits for tailored support. Informal caregivers will join an 18-month observational study assessing their QoL and burden through repeated evaluations, offering insights into evolving challenges. We expect that multidisciplinary, patient-centered care with integrated mobile palliative and telemedicine support helps to warrant continuity of care and improve the QoL of MSA individuals throughout the disease course. Its acceptance, safety, and cost-effectiveness will be also assessed.