To evaluate differences in validated distress symptom scores in patients with multiple system atrophy (MSA), focusing on differences by patient sex, disease subtype, and stage.
MSA is a neurodegenerative disorder characterized by autonomic failure with motor impairment of predominantly parkinsonism (MSA-P) or cerebellar ataxia (MSA-C). As a “prime of life” disease, patients often have significant difficulties not only with neurologic symptoms, but distress indirectly related to the disease. Identifying distinct variations in distress patterns (sex, subtype, stage) could present an opportunity to provide individualized interventions and support mechanisms for patients with MSA.
We performed a single-center, retrospective analysis of patients in a multidisciplinary MSA clinic between 2018 and 2024, followed serially every 4-6 months. Patients underwent palliative care assessments with the Edmonton Symptom Assessment System (ESAS) and National Comprehensive Cancer Network (NCCN) Distress Thermometer. Unified Multiple System Atrophy Rating Scale (UMSARS) evaluated for patient-reported symptoms (part I) and motor examination (part II).
The cohort consisted of 80 patients (48.8% male) with a total of 209 recorded visits. Median NCCN Distress Thermometer score differed between males (3/10) and females (5/10); (p=0.023). Emotional concerns were reported by both sexes most frequently (NCCN), most prominently in the female MSA-P group (92% compared to 53% of males), and more females reported concerns in all categories. Females with MSA-P reported heightened pain and diminished well-being (ESAS) compared to all other groups. UMSARS motor examination was similar between sexes (p=0.267) and subtype (p=0.147). Time from onset was similar between sexes (p=0.101) and subtype (p=0.105).
Females with MSA report distress symptoms more frequently in most categories, with marked differences in the MSA-P group, including heightened pain and diminished well-being. Emotional concerns were most frequently reported in all groups, but were greatest for females with MSA-P. No major differences were seen when comparing disease severity or disease duration.