Validation of the Italian version of carers’ quality-of-life questionnaire for parkinsonism (PQoL Carer) in progressive supranuclear palsy

Marina Picillo, Sofia Cuoco, Marianna Amboni, Francesco Paolo Bonifacio, Antonino Bruno, Fabio Bruschi, Arianna Cappiello, Rosa De Micco, Anna De Rosa, Francesca Di Biasio, Francesca Elifani, Roberto Erro, Margherita Fabbri, Marika Falla, Giulia Franco, Daniela Frosini, Sebastiano Galantucci, Giulia Lazzeri, Luca Magistrelli, Maria Chiara Malaguti & 23 others Anna Vera Milner, Brigida Minafra, Enrica Olivola, Andrea Pilotto, Cristina Rascunà, Maria Cristina Rizzetti, Tommaso Schirinzi, Barbara Borroni, Roberto Ceravolo, Alessio Di Fonzo, Leonardo Lopiano, Roberta Marchese, Nicola B. Mercuri, Nicola Modugno, Alessandra Nicoletti, Alessandro Padovani, Gabriella Santangelo, Alessandro Stefani, Alessandro Tessitore, Maria Antonietta Volontè, Roberta Zangaglia, Mario Zappia, Paolo Barone

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

Progressive supranuclear palsy (PSP) is a rare, rapidly progressive, neurodegenerative disease characterized by falls and ocular movement disturbances. Caring for a partner or relative who suffers from PSP entails a strenuous and demanding task, usually lasting for years that affects carers’ everyday life routines and emotional and social well-being. The 26-item Parkinsonism Carers QoL (PQoL Carer) is a self-administered, concise instrument evaluating the quality of life of caregivers of patients with atypical parkinsonism (both PSP and multiple system atrophy). Here, the PQoL Carer was translated into Italian and validated in 162 carers of PSP patients (54.3% women; mean age (standard deviation), 62.4 (15.4)) diagnosed according to the Movement Disorder Society criteria and recruited in 16 third-level movement disorders centers participating in the Neurecanet project. The mean PQoL total score was 40.66 ± 19.46. The internal consistency was excellent (Cronbach’s alpha = 0.941); corrected item-total correlation was > 0.40 for all the items. A correlation with other health-related quality of life measures as well as with behavioral assessments was shown suggesting adequate convergent validity of the scale. PQoL also correlated with patients’ severity of disease. The discriminant validity of the scale was evidenced by its capacity to differentiate between carers with varying levels of self-reported health (p < 0.001). In conclusion, the Italian version of the PQoL Carer is an easy, consistent, and valid tool for the assessment of the quality of life in carers of PSP patients.

Original languageEnglish
JournalNeurological Sciences
DOIs
Publication statusPublished - Jan 1 2019

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Progressive Supranuclear Palsy
Parkinsonian Disorders
Caregivers
Quality of Life
Multiple System Atrophy
Surveys and Questionnaires
Movement Disorders
Eye Movements
Neurodegenerative Diseases

Keywords

  • Caregiver
  • Carer
  • Clinical trials
  • Progressive supranuclear palsy
  • Quality of life

ASJC Scopus subject areas

  • Dermatology
  • Clinical Neurology
  • Psychiatry and Mental health

Cite this

Validation of the Italian version of carers’ quality-of-life questionnaire for parkinsonism (PQoL Carer) in progressive supranuclear palsy. / Picillo, Marina; Cuoco, Sofia; Amboni, Marianna; Bonifacio, Francesco Paolo; Bruno, Antonino; Bruschi, Fabio; Cappiello, Arianna; De Micco, Rosa; De Rosa, Anna; Di Biasio, Francesca; Elifani, Francesca; Erro, Roberto; Fabbri, Margherita; Falla, Marika; Franco, Giulia; Frosini, Daniela; Galantucci, Sebastiano; Lazzeri, Giulia; Magistrelli, Luca; Malaguti, Maria Chiara; Milner, Anna Vera; Minafra, Brigida; Olivola, Enrica; Pilotto, Andrea; Rascunà, Cristina; Rizzetti, Maria Cristina; Schirinzi, Tommaso; Borroni, Barbara; Ceravolo, Roberto; Di Fonzo, Alessio; Lopiano, Leonardo; Marchese, Roberta; Mercuri, Nicola B.; Modugno, Nicola; Nicoletti, Alessandra; Padovani, Alessandro; Santangelo, Gabriella; Stefani, Alessandro; Tessitore, Alessandro; Volontè, Maria Antonietta; Zangaglia, Roberta; Zappia, Mario; Barone, Paolo.

In: Neurological Sciences, 01.01.2019.

Research output: Contribution to journalArticle

Picillo, M, Cuoco, S, Amboni, M, Bonifacio, FP, Bruno, A, Bruschi, F, Cappiello, A, De Micco, R, De Rosa, A, Di Biasio, F, Elifani, F, Erro, R, Fabbri, M, Falla, M, Franco, G, Frosini, D, Galantucci, S, Lazzeri, G, Magistrelli, L, Malaguti, MC, Milner, AV, Minafra, B, Olivola, E, Pilotto, A, Rascunà, C, Rizzetti, MC, Schirinzi, T, Borroni, B, Ceravolo, R, Di Fonzo, A, Lopiano, L, Marchese, R, Mercuri, NB, Modugno, N, Nicoletti, A, Padovani, A, Santangelo, G, Stefani, A, Tessitore, A, Volontè, MA, Zangaglia, R, Zappia, M & Barone, P 2019, 'Validation of the Italian version of carers’ quality-of-life questionnaire for parkinsonism (PQoL Carer) in progressive supranuclear palsy', Neurological Sciences. https://doi.org/10.1007/s10072-019-03944-x
Picillo, Marina ; Cuoco, Sofia ; Amboni, Marianna ; Bonifacio, Francesco Paolo ; Bruno, Antonino ; Bruschi, Fabio ; Cappiello, Arianna ; De Micco, Rosa ; De Rosa, Anna ; Di Biasio, Francesca ; Elifani, Francesca ; Erro, Roberto ; Fabbri, Margherita ; Falla, Marika ; Franco, Giulia ; Frosini, Daniela ; Galantucci, Sebastiano ; Lazzeri, Giulia ; Magistrelli, Luca ; Malaguti, Maria Chiara ; Milner, Anna Vera ; Minafra, Brigida ; Olivola, Enrica ; Pilotto, Andrea ; Rascunà, Cristina ; Rizzetti, Maria Cristina ; Schirinzi, Tommaso ; Borroni, Barbara ; Ceravolo, Roberto ; Di Fonzo, Alessio ; Lopiano, Leonardo ; Marchese, Roberta ; Mercuri, Nicola B. ; Modugno, Nicola ; Nicoletti, Alessandra ; Padovani, Alessandro ; Santangelo, Gabriella ; Stefani, Alessandro ; Tessitore, Alessandro ; Volontè, Maria Antonietta ; Zangaglia, Roberta ; Zappia, Mario ; Barone, Paolo. / Validation of the Italian version of carers’ quality-of-life questionnaire for parkinsonism (PQoL Carer) in progressive supranuclear palsy. In: Neurological Sciences. 2019.
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abstract = "Progressive supranuclear palsy (PSP) is a rare, rapidly progressive, neurodegenerative disease characterized by falls and ocular movement disturbances. Caring for a partner or relative who suffers from PSP entails a strenuous and demanding task, usually lasting for years that affects carers’ everyday life routines and emotional and social well-being. The 26-item Parkinsonism Carers QoL (PQoL Carer) is a self-administered, concise instrument evaluating the quality of life of caregivers of patients with atypical parkinsonism (both PSP and multiple system atrophy). Here, the PQoL Carer was translated into Italian and validated in 162 carers of PSP patients (54.3{\%} women; mean age (standard deviation), 62.4 (15.4)) diagnosed according to the Movement Disorder Society criteria and recruited in 16 third-level movement disorders centers participating in the Neurecanet project. The mean PQoL total score was 40.66 ± 19.46. The internal consistency was excellent (Cronbach’s alpha = 0.941); corrected item-total correlation was > 0.40 for all the items. A correlation with other health-related quality of life measures as well as with behavioral assessments was shown suggesting adequate convergent validity of the scale. PQoL also correlated with patients’ severity of disease. The discriminant validity of the scale was evidenced by its capacity to differentiate between carers with varying levels of self-reported health (p < 0.001). In conclusion, the Italian version of the PQoL Carer is an easy, consistent, and valid tool for the assessment of the quality of life in carers of PSP patients.",
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AU - Picillo, Marina

AU - Cuoco, Sofia

AU - Amboni, Marianna

AU - Bonifacio, Francesco Paolo

AU - Bruno, Antonino

AU - Bruschi, Fabio

AU - Cappiello, Arianna

AU - De Micco, Rosa

AU - De Rosa, Anna

AU - Di Biasio, Francesca

AU - Elifani, Francesca

AU - Erro, Roberto

AU - Fabbri, Margherita

AU - Falla, Marika

AU - Franco, Giulia

AU - Frosini, Daniela

AU - Galantucci, Sebastiano

AU - Lazzeri, Giulia

AU - Magistrelli, Luca

AU - Malaguti, Maria Chiara

AU - Milner, Anna Vera

AU - Minafra, Brigida

AU - Olivola, Enrica

AU - Pilotto, Andrea

AU - Rascunà, Cristina

AU - Rizzetti, Maria Cristina

AU - Schirinzi, Tommaso

AU - Borroni, Barbara

AU - Ceravolo, Roberto

AU - Di Fonzo, Alessio

AU - Lopiano, Leonardo

AU - Marchese, Roberta

AU - Mercuri, Nicola B.

AU - Modugno, Nicola

AU - Nicoletti, Alessandra

AU - Padovani, Alessandro

AU - Santangelo, Gabriella

AU - Stefani, Alessandro

AU - Tessitore, Alessandro

AU - Volontè, Maria Antonietta

AU - Zangaglia, Roberta

AU - Zappia, Mario

AU - Barone, Paolo

PY - 2019/1/1

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KW - Caregiver

KW - Carer

KW - Clinical trials

KW - Progressive supranuclear palsy

KW - Quality of life

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