Category: MSA, PSP, CBS (Other)
Objective: To assess clinical deficits, quality of life and caregiver burden across progressive supranuclear palsy (PSP) phenotypes considering also other variables such as age, sex disease duration and comorbidities.
Background: Since the phenotypic spectrum of PSP was widened with the 2017 MDS PSP diagnostic criteria several studies have assessed different clinical and biomarker aspects. However, differences in quality of life and caregiver burden relative to phenotypes is still limited
Method: We included 40 participants consisting of 20 patients and their main caregivers as part of the PSP therapeutic education program at our center. This cohort included PSP-Richardson’s syndrome (PSP-RS; n=9), PSP-parkinsonism (PSP-P; n=7), PSP-progressive gait freezing (PSP-PGF; n=3) and PSP-speech/language (PSP-SL; n=1). We administered scales of clinical deficits (PSP-CDS), quality of life (EQ5D-VAS) and caregiver burden (ZBI) to participants as applicable. Data were analyzed using non-parametric statistical tests (all analyses two-tailed with significance set at p-value<0.05).
Results: Age, sex and disease duration were comparable across phenotypes. Median of PSP-CDS was 12 in PSP-RS, 8 in PSP-P, and 6 in PSP-PGF and PSP-SL (p>0.05). EQ5D-VAS was 70% in PSP-P and 60% in PSP-SL but 50% in PSP-RS and PSP-PGF (again p>0.05). Disease duration was shorter in PSP-RS (median=4 years) than in non-RS (median=8 years; p=0.04) and PSP-CDS scores were higher in PSP-RS (median=12) than in non-RS (median=7; p=0.05). When assessing caregivers according to phenotypes, they only differed in ZBI (median=56 PSP-RS, 25 PSP-P, 5 PSP-PGF, 19 PSP-SL; p=0.005). There was a trend to significantly greater burden in cases with Hoehn & Yahr stage<3 than stage 4-5 (p=0.056), but not when comparing those without vs. with severe comorbidities (p=0.73).
Conclusion: There is a trend to milder clinical deficits and better quality of life in PSP non-RS variants than in PSP-RS. Caregivers’ burden is significantly worse in PSP-RS than in other variants relating to motor severity rather than comorbidities. These findings are consistent with literature and can be considered when designing therapeutic education programs and assessing patients and caregivers about complications and prognosis.
To cite this abstract in AMA style:
A. Cámara, I. Zaro, C. Painous, Y. Compta. Clinical Deficits, Quality of Life and Caregiver Burden across PSP Phenotypes [abstract]. Mov Disord. 2025; 40 (suppl 1). https://www.mdsabstracts.org/abstract/clinical-deficits-quality-of-life-and-caregiver-burden-across-psp-phenotypes/. Accessed October 5, 2025.« Back to 2025 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/clinical-deficits-quality-of-life-and-caregiver-burden-across-psp-phenotypes/