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Validation of the Italian version of the PSP Quality of Life questionnaire

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Abstract

Background

Progressive supranuclear palsy (PSP) is a rare rapidly progressive, neurodegenerative disease characterized by falls and ocular movement disturbances. The use of health-related quality of life (HR-QoL) measures allows assessing changes in health status induced by therapeutic interventions or disease progress in neurodegenerative diseases. The PSP-QoL is a 45-item, self-administered questionnaire designed to evaluate HR-QoL in PSP.

Methods and Results

Here, the PSP-QoL was translated into Italian and validated in 190 PSP (96 women and 94 men; mean age ± standard deviation, 72 ± 6.5; mean disease duration, 4.2 ± 2.3) patients diagnosed according to the Movement Disorder Society criteria and recruited in 16 third level movement disorders centers participating in the Neurecanet project. The mean PSP-QoL total score was 77.8 ± 37 (physical subscore, 46.5 ± 18.7; mental subscore, 33.6 ± 19.2). The internal consistency was high (Cronbach’s alpha = 0.954); corrected item-total correlation was > 0.40 for the majority of items. The significant and moderate correlation of the PSP-QoL with other HR-QoL measures as well as with motor and disability assessments indicated adequate convergent validity of the scale. Gender and geographic location presented a significant impact on the PSP-QoL in our sample with women and patients from the South of Italy scoring higher than their counterparts.

Conclusion

In conclusion, the Italian version of the PSP-QoL is an easy, reliable and valid tool for assessment of HR-QoL in PSP.

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Abbreviations

EQ-5D:

The EuroQoL questionnaire

EQ-VAS:

The EuroQoL Visual Analogue Scale

HADS:

The Hospital Anxiety and Depression Scale

HR-QoL:

Health-related Quality of Life

MDS:

Movement Disorder Society

MoCA:

Montreal Cognitive Assessment

PSP:

Progressive supranuclear palsy

PSP-QoL:

Progressive Supranuclear Palsy Quality of Life Questionnaire

PSP-RS:

Progressive Supranuclear Palsy Rating Scale

S&E:

The Schwab and England Scale

VAS:

Visual Analogue Scale

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Acknowledgments

Neurecanet project is an Italian Movement Disorders Network including 16 third level movement disorders centers coordinated by the CEMAND, University of Salerno (https://www.neurecanet.net), and supported by TEVA and Zambon.

We are grateful to the patients who participated in the study and to Susan Ainscough for the back translation of the PSP-QoL.

Author information

Authors and Affiliations

  1. Center for Neurodegenerative Diseases (CEMAND), Department of Medicine, Surgery and Odontoiatry, University of Salerno, 84131, Salerno, Italy

    Marina Picillo, Sofia Cuoco, Marianna Amboni, Immacolata Carotenuto, Roberto Erro & Paolo Barone

  2. Department of Advanced Medical and Surgical Sciences, University of Campania “Luigi Vanvitelli”, Naples, Italy

    Francesco Paolo Bonifacio, Rosa De Micco & Alessandro Tessitore

  3. Parkinson’s Disease and Movement Disorders Unit, IRCCS Mondino Foundation, Pavia, Italy

    Fabio Bruschi, Brigida Minafra & Roberta Zangaglia

  4. Department of Neurosciences and Reproductive and Odontostomatological Sciences, Federico II University, Naples, Italy

    Anna De Rosa

  5. Dipartimento di Medicina Clinica e Sperimentale, Università di Pisa, Pisa, Italy

    Eleonora Del Prete, Daniela Frosini & Roberto Ceravolo

  6. IRCCS Policlinico San Martino, Genoa, Italy

    Francesca Di Biasio & Roberta Marchese

  7. IRCCS Neuromed, Pozzilli, Italy

    Francesca Elifani, Enrica Olivola & Nicola Modugno

  8. Department of Neuroscience “Rita Levi Montalcini”, University of Turin, via Cherasco 15, 10124, Torino, Italy

    Margherita Fabbri & Maurizio Zibetti

  9. Department of Neurology, General Hospital of Bolzano, Bolzano, Italy

    Marika Falla

  10. CIMec and CeRIN, University of Trento, Rovereto, Italy

    Marika Falla

  11. IRCCS Foundation Ca’ Granda Ospedale Maggiore Policlinico, Dino Ferrari Center, Neuroscience Section, Department of Pathophysiology and Transplantation, University of Milan, 20122, Milan, Italy

    Giulia Franco, Giulia Lazzeri & Alessio Di Fonzo

  12. Dipartimento Neurologico, IRCCS Ospedale San Raffaele, Milan, Italy

    Sebastiano Galantucci & Maria Antonietta Volontè

  13. Movement Disorders Centre, Neurology Unit, Department of Translational Medicine, University of Piemonte Orientale, Novara, Italy

    Luca Magistrelli & Anna Vera Milner

  14. PhD Program in Clinical and Experimental Medicine and Medical Humanities, University of Insubria, Varese, Italy

    Luca Magistrelli

  15. UO Neurologia, Ospedale Santa Chiara Trento, Azienda provinciale per i servizi sanitari provincia autonoma di Trento, Trento, Italy

    Maria Chiara Malaguti

  16. Centre for Neurodegenerative Disorders, Neurology Unit, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy

    Andrea Pilotto, Barbara Borroni & Alessandro Padovani

  17. Department G.F. Ingrassia, Section of Neurosciences, University of Catania, Catania, Italy

    Cristina Rascunà, Alessandra Nicoletti & Mario Zappia

  18. S. Isidoro Hospital - FERB Onlus, Trescore Balneario, Bergamo, Italy

    Maria Cristina Rizzetti

  19. Centro Parkinson, Dip. Medicina dei Sistemi, Policlinico Tor Vergata, Rome, Italy

    Tommaso Schirinzi, Nicola B. Mercuri & Alessandro Stefani

  20. Department of Psychology, University of Campania “Luigi Vanvitelli”, Viale Ellittico 31, 81100, Caserta, Italy

    Gabriella Santangelo

Authors
  1. Marina Picillo
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  2. Sofia Cuoco
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  3. Marianna Amboni
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  4. Francesco Paolo Bonifacio
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  5. Fabio Bruschi
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  6. Immacolata Carotenuto
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  7. Rosa De Micco
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  8. Anna De Rosa
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  9. Eleonora Del Prete
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  10. Francesca Di Biasio
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  11. Francesca Elifani
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  12. Roberto Erro
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  13. Margherita Fabbri
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  14. Marika Falla
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  15. Giulia Franco
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  16. Daniela Frosini
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  17. Sebastiano Galantucci
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  18. Giulia Lazzeri
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  19. Luca Magistrelli
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  20. Maria Chiara Malaguti
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  21. Anna Vera Milner
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  22. Brigida Minafra
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  23. Enrica Olivola
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  24. Andrea Pilotto
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  25. Cristina Rascunà
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  26. Maria Cristina Rizzetti
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  27. Tommaso Schirinzi
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  28. Barbara Borroni
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  29. Roberto Ceravolo
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  30. Alessio Di Fonzo
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  31. Roberta Marchese
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  32. Nicola B. Mercuri
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  33. Nicola Modugno
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  34. Alessandra Nicoletti
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  35. Alessandro Padovani
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  36. Gabriella Santangelo
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  37. Alessandro Stefani
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  38. Alessandro Tessitore
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  39. Maria Antonietta Volontè
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  40. Roberta Zangaglia
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  41. Mario Zappia
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  42. Maurizio Zibetti
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  43. Paolo Barone
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Corresponding author

Correspondence to Paolo Barone.

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The authors declare that they have no conflict of interest.

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The project was approved by the local Ethics committee.

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Picillo, M., Cuoco, S., Amboni, M. et al. Validation of the Italian version of the PSP Quality of Life questionnaire. Neurol Sci 40, 2587–2594 (2019). https://doi.org/10.1007/s10072-019-04010-2

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  • DOI: https://doi.org/10.1007/s10072-019-04010-2

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