Objective: To evaluate the impact of MSA disease on QoL and caregiver burden and identify influencing factors of QoL in a large UK-based cohort

Background: The management of Multiple System Atrophy (MSA) is challenging due to its complex nature, which affects the quality of life (QoL) for both patients and caregivers

Method: Cross-sectional baseline data from the PROSPECT-M-UK MSA cohort was analysed, including MSA-QoL Questionnaire for patient-perceived QoL, Unified MSA Rating Scale (UMSARS) for disease severity, Zarit Burden Interview (ZBI) for caregiver burden. QoL was categorised into motor, non-motor, emotional, and oropharyngeal domains. Demographic/clinical characteristics were summarised with descriptive statistics. Spearman’s rank correlation with Benjamini-Hochberg correction was used for correlations. Linear regression models examined associations between MSA-QoL and key demographic/clinical variables.

Results: 164 MSA cases included (44% female, 52% MSA-P), with 66 providing matched MSA-QoL and UMSARS. 151 caregivers responded. There were significant associations between MSA-QoL and UMSARS total scores (ρ=0.49, p<0.001), ZBI (ρ=0.41, p=0), and correspondent questions between UMSARS and MSA-QoL. While dividing QoL into domains, we found that total UMSARS significantly correlated with motor (ρ=0.59, p=0.01), oropharyngeal (ρ=0.42, p=0.001), emotional (ρ=0.34, p=0.008), and weakly with non-motor domains (ρ=0.24, p=0.005). However, no UMSARS sections were significantly correlated with the non-motor domain. UMSARS total significantly correlated with some QoL emotion/non-motor items including feeling incapable (ρ=0.43, p=0.001), social role change (ρ=0.39, p=0.002), stopping social activities (ρ=0.37, p=0.004). Caregivers’ ZBI correlated with all MSA-QoL domains (motor: ρ=0.35, p=0.002; non-motor: ρ=0.21, p=0.01; oropharyngeal: ρ=0.26, p=0.002; emotional: ρ=0.21, p=0.001) and were positively correlated to UMSARS-1(ρ=0.33, p=0.007), but not total, part 2 or GDS. Linear regression analysis did not identify any predictor demographics (sex, age of onset, baseline disease duration and onset-to-death duration) associated with QoL.

Conclusion: Screening QoL and caregiver burden may improve MSA care, as they are not fully captured by UMSARS. Early intervention through screening and counselling for emotional burden and non-motor symptoms may enhance patient-centred care.

References: Goh, Y.Y., Saunders, E., Pavey, S., Rushton, E., Quinn, N., Houlden, H. and Chelban, V., 2023. Multiple system atrophy. Practical Neurology, 23(3), pp.208-221.

Meissner, W.G., Foubert‐Samier, A., Dupouy, S., Gerdelat‐Mas, A., Debs, R., Marquant, F., De Cock, V.C., Rascol, O., Tison, F. and Pavy‐Le Traon, A., 2012. Assessment of quality of life with the multiple system atrophy health‐related quality of life scale. Movement disorders, 27(12), pp.1574-1577.

Saulnier, T., Fabbri, M., Le Goff, M., Helmer, C., Pavy-Le Traon, A., Meissner, W.G., Rascol, O., Proust-Lima, C. and Foubert-Samier, A., 2024. Patient-perceived progression in multiple system atrophy: natural history of quality of life. Journal of Neurology, Neurosurgery & Psychiatry, 95(9), pp.804-811.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/a-comprehensive-exploration-of-the-quality-of-life-and-caregiver-burden-in-multiple-system-atrophy/