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Neurological Sciences

, Volume 40, Issue 12, pp 2587–2594 | Cite as

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

  • Marina Picillo
  • Sofia Cuoco
  • Marianna Amboni
  • Francesco Paolo Bonifacio
  • Fabio Bruschi
  • Immacolata Carotenuto
  • Rosa De Micco
  • Anna De Rosa
  • Eleonora Del Prete
  • Francesca Di Biasio
  • Francesca Elifani
  • Roberto Erro
  • Margherita Fabbri
  • Marika Falla
  • Giulia Franco
  • Daniela Frosini
  • Sebastiano Galantucci
  • Giulia Lazzeri
  • Luca Magistrelli
  • Maria Chiara Malaguti
  • Anna Vera Milner
  • Brigida Minafra
  • Enrica Olivola
  • Andrea Pilotto
  • Cristina Rascunà
  • Maria Cristina Rizzetti
  • Tommaso Schirinzi
  • Barbara Borroni
  • Roberto Ceravolo
  • Alessio Di Fonzo
  • Roberta Marchese
  • Nicola B. Mercuri
  • Nicola Modugno
  • Alessandra Nicoletti
  • Alessandro Padovani
  • Gabriella Santangelo
  • Alessandro Stefani
  • Alessandro Tessitore
  • Maria Antonietta Volontè
  • Roberta Zangaglia
  • Mario Zappia
  • Maurizio Zibetti
  • Paolo BaroneEmail author
Original Article

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.

Keywords

Parkinsonism Progressive supranuclear palsy Quality of life Clinical trials 

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

Notes

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.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

The project was approved by the local Ethics committee.

Supplementary material

10072_2019_4010_MOESM1_ESM.docx (502 kb)
ESM 1 (DOCX 501 kb)

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Copyright information

© Fondazione Società Italiana di Neurologia 2019

Authors and Affiliations

  • Marina Picillo
    • 1
  • Sofia Cuoco
    • 1
  • Marianna Amboni
    • 1
  • Francesco Paolo Bonifacio
    • 2
  • Fabio Bruschi
    • 3
  • Immacolata Carotenuto
    • 1
  • Rosa De Micco
    • 2
  • Anna De Rosa
    • 4
  • Eleonora Del Prete
    • 5
  • Francesca Di Biasio
    • 6
  • Francesca Elifani
    • 7
  • Roberto Erro
    • 1
  • Margherita Fabbri
    • 8
  • Marika Falla
    • 9
    • 10
  • Giulia Franco
    • 11
  • Daniela Frosini
    • 5
  • Sebastiano Galantucci
    • 12
  • Giulia Lazzeri
    • 11
  • Luca Magistrelli
    • 13
    • 14
  • Maria Chiara Malaguti
    • 15
  • Anna Vera Milner
    • 13
  • Brigida Minafra
    • 3
  • Enrica Olivola
    • 7
  • Andrea Pilotto
    • 16
  • Cristina Rascunà
    • 17
  • Maria Cristina Rizzetti
    • 18
  • Tommaso Schirinzi
    • 19
  • Barbara Borroni
    • 16
  • Roberto Ceravolo
    • 5
  • Alessio Di Fonzo
    • 11
  • Roberta Marchese
    • 6
  • Nicola B. Mercuri
    • 19
  • Nicola Modugno
    • 7
  • Alessandra Nicoletti
    • 17
  • Alessandro Padovani
    • 16
  • Gabriella Santangelo
    • 20
  • Alessandro Stefani
    • 19
  • Alessandro Tessitore
    • 2
  • Maria Antonietta Volontè
    • 12
  • Roberta Zangaglia
    • 3
  • Mario Zappia
    • 17
  • Maurizio Zibetti
    • 8
  • Paolo Barone
    • 1
    Email author
  1. 1.Center for Neurodegenerative Diseases (CEMAND), Department of Medicine, Surgery and OdontoiatryUniversity of SalernoSalernoItaly
  2. 2.Department of Advanced Medical and Surgical SciencesUniversity of Campania “Luigi Vanvitelli”NaplesItaly
  3. 3.Parkinson’s Disease and Movement Disorders UnitIRCCS Mondino FoundationPaviaItaly
  4. 4.Department of Neurosciences and Reproductive and Odontostomatological SciencesFederico II UniversityNaplesItaly
  5. 5.Dipartimento di Medicina Clinica e SperimentaleUniversità di PisaPisaItaly
  6. 6.IRCCS Policlinico San MartinoGenoaItaly
  7. 7.IRCCS NeuromedPozzilliItaly
  8. 8.Department of Neuroscience “Rita Levi Montalcini”University of TurinTorinoItaly
  9. 9.Department of NeurologyGeneral Hospital of BolzanoBolzanoItaly
  10. 10.CIMec and CeRINUniversity of TrentoRoveretoItaly
  11. 11.IRCCS Foundation Ca’ Granda Ospedale Maggiore Policlinico, Dino Ferrari Center, Neuroscience Section, Department of Pathophysiology and TransplantationUniversity of MilanMilanItaly
  12. 12.Dipartimento NeurologicoIRCCS Ospedale San RaffaeleMilanItaly
  13. 13.Movement Disorders Centre, Neurology Unit, Department of Translational MedicineUniversity of Piemonte OrientaleNovaraItaly
  14. 14.PhD Program in Clinical and Experimental Medicine and Medical HumanitiesUniversity of InsubriaVareseItaly
  15. 15.UO Neurologia, Ospedale Santa Chiara TrentoAzienda provinciale per i servizi sanitari provincia autonoma di TrentoTrentoItaly
  16. 16.Centre for Neurodegenerative Disorders, Neurology Unit, Department of Clinical and Experimental SciencesUniversity of BresciaBresciaItaly
  17. 17.Department G.F. Ingrassia, Section of NeurosciencesUniversity of CataniaCataniaItaly
  18. 18.S. Isidoro Hospital - FERB OnlusBergamoItaly
  19. 19.Centro Parkinson, Dip. Medicina dei Sistemi, Policlinico Tor VergataRomeItaly
  20. 20.Department of PsychologyUniversity of Campania “Luigi Vanvitelli”CasertaItaly

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