Marina Picillo1, Sofia Cuoco1, Marianna Amboni1, Francesco Paolo Bonifacio2, Fabio Bruschi3, Immacolata Carotenuto1, Rosa De Micco2, Anna De Rosa4, Eleonora Del Prete5, Francesca Di Biasio6, Francesca Elifani7, Roberto Erro1, Margherita Fabbri8, Marika Falla9,10, Giulia Franco11, Daniela Frosini5, Sebastiano Galantucci12, Giulia Lazzeri11, Luca Magistrelli13,14, Maria Chiara Malaguti15, Anna Vera Milner13, Brigida Minafra3, Enrica Olivola7, Andrea Pilotto16, Cristina Rascunà17, Maria Cristina Rizzetti18, Tommaso Schirinzi19, Barbara Borroni16, Roberto Ceravolo5, Alessio Di Fonzo11, Roberta Marchese6, Nicola B Mercuri19, Nicola Modugno7, Alessandra Nicoletti17, Alessandro Padovani16, Gabriella Santangelo20, Alessandro Stefani19, Alessandro Tessitore2, Maria Antonietta Volontè12, Roberta Zangaglia3, Mario Zappia17, Maurizio Zibetti8, Paolo Barone21. 1. Center for Neurodegenerative Diseases (CEMAND), Department of Medicine, Surgery and Odontoiatry, University of Salerno, 84131, Salerno, Italy. 2. Department of Advanced Medical and Surgical Sciences, University of Campania "Luigi Vanvitelli", Naples, Italy. 3. Parkinson's Disease and Movement Disorders Unit, IRCCS Mondino Foundation, Pavia, Italy. 4. Department of Neurosciences and Reproductive and Odontostomatological Sciences, Federico II University, Naples, Italy. 5. Dipartimento di Medicina Clinica e Sperimentale, Università di Pisa, Pisa, Italy. 6. IRCCS Policlinico San Martino, Genoa, Italy. 7. IRCCS Neuromed, Pozzilli, Italy. 8. Department of Neuroscience "Rita Levi Montalcini", University of Turin, via Cherasco 15, 10124, Torino, Italy. 9. Department of Neurology, General Hospital of Bolzano, Bolzano, Italy. 10. CIMec and CeRIN, University of Trento, Rovereto, Italy. 11. IRCCS Foundation Ca' Granda Ospedale Maggiore Policlinico, Dino Ferrari Center, Neuroscience Section, Department of Pathophysiology and Transplantation, University of Milan, 20122, Milan, Italy. 12. Dipartimento Neurologico, IRCCS Ospedale San Raffaele, Milan, Italy. 13. Movement Disorders Centre, Neurology Unit, Department of Translational Medicine, University of Piemonte Orientale, Novara, Italy. 14. PhD Program in Clinical and Experimental Medicine and Medical Humanities, University of Insubria, Varese, Italy. 15. UO Neurologia, Ospedale Santa Chiara Trento, Azienda provinciale per i servizi sanitari provincia autonoma di Trento, Trento, Italy. 16. Centre for Neurodegenerative Disorders, Neurology Unit, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy. 17. Department G.F. Ingrassia, Section of Neurosciences, University of Catania, Catania, Italy. 18. S. Isidoro Hospital - FERB Onlus, Trescore Balneario, Bergamo, Italy. 19. Centro Parkinson, Dip. Medicina dei Sistemi, Policlinico Tor Vergata, Rome, Italy. 20. Department of Psychology, University of Campania "Luigi Vanvitelli", Viale Ellittico 31, 81100, Caserta, Italy. 21. Center for Neurodegenerative Diseases (CEMAND), Department of Medicine, Surgery and Odontoiatry, University of Salerno, 84131, Salerno, Italy. pbarone@unisa.it.
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.
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.
Entities:
Keywords:
Clinical trials; Parkinsonism; Progressive supranuclear palsy; Quality of life
Authors: Neil Aaronson; Jordi Alonso; Audrey Burnam; Kathleen N Lohr; Donald L Patrick; Edward Perrin; Ruth E Stein Journal: Qual Life Res Date: 2002-05 Impact factor: 4.147
Authors: Adam L Boxer; Jin-Tai Yu; Lawrence I Golbe; Irene Litvan; Anthony E Lang; Günter U Höglinger Journal: Lancet Neurol Date: 2017-06-13 Impact factor: 44.182
Authors: A Schrag; C Selai; N Quinn; A Lees; I Litvan; A Lang; Y Poon; J Bower; D Burn; J Hobart Journal: Neurology Date: 2006-07-11 Impact factor: 9.910
Authors: 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; 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 Journal: Neurol Sci Date: 2019-06-12 Impact factor: 3.307
Authors: Günter U Höglinger; Gesine Respondek; Maria Stamelou; Carolin Kurz; Keith A Josephs; Anthony E Lang; Brit Mollenhauer; Ulrich Müller; Christer Nilsson; Jennifer L Whitwell; Thomas Arzberger; Elisabet Englund; Ellen Gelpi; Armin Giese; David J Irwin; Wassilios G Meissner; Alexander Pantelyat; Alex Rajput; John C van Swieten; Claire Troakes; Angelo Antonini; Kailash P Bhatia; Yvette Bordelon; Yaroslau Compta; Jean-Christophe Corvol; Carlo Colosimo; Dennis W Dickson; Richard Dodel; Leslie Ferguson; Murray Grossman; Jan Kassubek; Florian Krismer; Johannes Levin; Stefan Lorenzl; Huw R Morris; Peter Nestor; Wolfgang H Oertel; Werner Poewe; Gil Rabinovici; James B Rowe; Gerard D Schellenberg; Klaus Seppi; Thilo van Eimeren; Gregor K Wenning; Adam L Boxer; Lawrence I Golbe; Irene Litvan Journal: Mov Disord Date: 2017-05-03 Impact factor: 10.338