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

Cappiello A, Calandra-Buonaura G, Ceravolo R, Coralli S, Cuoco S, Del Prete E, di Biasio F, Frosini D, Gualtieri V, Mascioli D, Sambati L, Schirinzi T, Stefani A, Umbertini E, Aiello M, Aiello M, Costanzo M, de Micco R, Fabbrini G, Failla G, Longo C, Malaguti MC, Modugno N, Olivola E, Russo NMC, Tessitore A, Ciammola A, Colosimo C, de Rosa A, de Togni L, di Fonzo A, Moschella V, Pilotto A, Spagnolo F, Zangaglia R, Barone P, Picillo M, PSP‐NET study group.

Mov Disord Clin Pract · 2025-10-16

Research overview

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Background and objectivesCaregivers 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.MethodsPQoL Carer was administered within the PSP-NET. Participants underwent clinical, motor, cognitive, and behavioral evaluations.ResultsData 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.ConclusionsPSP-ShoQoL Carer is a reliable and valid time-saving tool for the assessment of caregivers' QoL in PSP.

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