A Short Version of Carers' Quality of Life Questionnaire for Parkinsonism: Data from Progressive Supranuclear Palsy Network

Background and objectives: Caregivers of progressive supranuclear palsy (PSP) patients frequently show significant distress. The Parkinsonism Carers quality of life (QoL) (PQoL Carer) is a valid tool evaluating the effect of PSP on caregivers' QoL. Main aim of the present study was to develop a short version of the PQoL Carer, named PSP-ShoQoL Carer. Methods: PQoL Carer was administered within the PSP-NET. Participants underwent clinical, motor, cognitive, and behavioral evaluations. Results: Data from 344 participants were included. The final PSP-ShoQoL Carer included eight items. The internal consistency was high (Cronbach's α = 0.867) and PSP-ShoQoL Carer showed also good acceptability, reliability, and validity. The PSP-ShoQoL Carer showed a significant correlation with caregivers' standard measures of QoL and with patients' motor, cognitive, and behavioral characteristics, such as neuropsychiatric symptoms. Finally, PSP-ShoQoL Carer showed an appropriate sensitivity to change over 6-month follow up. Conclusions: PSP-ShoQoL Carer is a reliable and valid time-saving tool for the assessment of caregivers' QoL in PSP.