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; 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. - In: MOVEMENT DISORDERS CLINICAL PRACTICE. - ISSN 2330-1619. - Online ahead of print:(2025), pp. 1-6. [10.1002/mdc3.70389]
A Short Version of Carers' Quality of Life Questionnaire for Parkinsonism: Data from Progressive Supranuclear Palsy Network
di Biasio, Francesca;Mascioli, Davide;Aiello, Marco;de Micco, Rosa;Fabbrini, Giovanni;Modugno, Nicola;Colosimo, Carlo;Spagnolo, Francesca;Barone, Paolo;di Biasio, Francesca;Mascioli, Davide;Aiello, Marco;de Micco, Rosa;Fabbrini, Giovanni;Modugno, Nicola;Colosimo, Carlo;Spagnolo, Francesca;Barone, Paolo;
2025
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.| File | Dimensione | Formato | |
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