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.
A Short Version of Carers' Quality of Life Questionnaire for Parkinsonism: Data from Progressive Supranuclear Palsy Network / Cappiello, Arianna; Calandra‐buonaura, Giovanna; Ceravolo, Roberto; Coralli, Saverio; Cuoco, Sofia; Del Prete, Eleonora; Di Biasio, Francesca; Frosini, Daniela; Gualtieri, Vittorio; Mascioli, Davide; Sambati, Luisa; Schirinzi, Tommaso; Stefani, Alessandro; Umbertini, Elisa; Aiello, Marco; Costanzo, Matteo; De Micco, Rosa; Fabbrini, Giovanni; Failla, Gaetano; Longo, Chiara; Malaguti, Maria Chiara; Modugno, Nicola; Olivola, Enrica; Russo, Noemi Maria Carola; Tessitore, Alessandro; Ciammola, Andrea; Colosimo, Carlo; De Rosa, Anna; De Togni, Laura; Di Fonzo, Alessio; Moschella, Vincenzo; Pilotto, Andrea; Spagnolo, Francesca; Zangaglia, Roberta; Barone, Paolo; Picillo, Marina; Ceravolo, Maria Gabriella. - In: MOVEMENT DISORDERS CLINICAL PRACTICE. - ISSN 2330-1619. - ELETTRONICO. - (2025). [10.1002/mdc3.70389]
A Short Version of Carers' Quality of Life Questionnaire for Parkinsonism: Data from Progressive Supranuclear Palsy Network
de Rosa, Anna;Spagnolo, Francesca;Ceravolo, Maria GabriellaMembro del Collaboration Group
2025-01-01
Abstract
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.I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
