What are the Key Challenges Faced by Spinocerebellar Degeneration and Multiple System Atrophy Patients in Daily Life?: Insights from a Comprehensive Questionnaire Survey in Japan.

Background: Patients with spinocerebellar degeneration (SCD) and multiple system atrophy (MSA) encounter various challenges in daily life due to ataxia and other symptoms. A comprehensive understanding of their diverse needs can improve the effectiveness of rehabilitation interventions.

Objective: This study aims to identify the daily challenges faced by patients with SCD and MSA in Japan, focusing on differences between ambulatory and non-ambulatory patients.

Methods: A postal survey was conducted from March to May 2023, targeting members of the Japanese Society of Ataxia Patients diagnosed with SCD and MSA. The questionnaire assessed respondent demographics and symptoms impacting daily life.

Results: From the 283 responses received, 152 were deemed valid for analysis. Non-ambulatory patients reported significantly more difficulties across multiple items in the activities domain. Furthermore, subjective unsteadiness, difficulty speaking, and increased fall risk were identified as having the most significant impact on daily life, regardless of walking ability.

Conclusion: These findings highlight the need to adapt rehabilitation approaches for patients with SCD and MSA as their disease progresses, emphasizing comprehensive assessment methods and multidisciplinary care to enhance their quality of life.