Cross-sectional and longitudinal validation of short and long versions of the progressive supranuclear palsy quality of life scale.

Progressive supranuclear palsy (PSP) is an atypical parkinsonian disorder characterized by supranuclear gaze palsy, postural instability, parkinsonism, and frontal lobe disturbances. Severely impaired health-related quality of life (HRQoL) has been reported in patients with PSP. However, longitudinal studies of HRQoL are limited. This retrospective study recruited 90 patients from the Progressive Supranuclear Palsy Neuroimage Initiative (PSPNI) from 2018 to 2024. Motor and non-motor symptoms were evaluated at baseline and follow-up. HRQoL was assessed by short and long versions of the Progressive Supranuclear Palsy Quality of Life Scale (PSP-QoL). The baseline determinants of HRQoL and predictors of its subsequent decline were explored by linear regression. At baseline, motor and non-motor symptoms showed significant correlations with HRQoL. Linear regression analyses identified PSP Rating Scale (PSPRS), Geriatric Depression Scale, and disease duration as the most critical determinants of baseline HRQoL. All patients showed HRQoL deterioration after a median of 13.0 months of follow-up, and patients with PSP-Richardson's syndrome (PSP-Richardson) tended to worsen faster in the mental domain compared with other subtypes. Longitudinal changes in HRQoL were associated with changes in PSPRS, Mini-Mental State Examination, and Frontal Behavioral Inventory, while baseline Non-motor Symptoms Scale predicted the subsequent HRQoL decline rate. Disease severity, depression, and disease duration determined baseline HRQoL in PSP patients, while non-motor symptoms predicted HRQoL worsening rate. Patients with PSP-Richardson suffered more severe HRQoL impairment than other subtypes. The short and long versions of PSP-QoL demonstrated comparable statistical performance at baseline and during follow-up.