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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
  • 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 BaroneEmail author
Original Article

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.

Keywords

Progressive supranuclear palsy Quality of life Caregiver Carer Clinical trials 

Abbreviations

EQ-5D

Euroqol 5D

EQ-VAS

Euroqol visual analogue scale

HADS

Hospital Anxiety Depression Scale

HADS-A

Hospital Anxiety Depression Scale – anxiety

HADS-D

Hospital Anxiety Depression scale – depression

HR-QoL

Health-related quality of life

MDS

Movement Disorders Society

PSP

Progressive supranuclear palsy

PSP-RS

Progressive Supranuclear Palsy rating scale

PQoL Carers

Carers’ quality-of-life questionnaire for parkinsonism

Notes

Acknowledgments

We are grateful to the carers of PSP patients who accepted to participate in the study and to Susan Ainscough for the back translation of the PQoL Carer.

Funding

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.

Compliance with ethical standards

The project was approved by the local Ethics committee.

Conflict of interest

The authors declare that they have no conflict of interest.

References

  1. 1.
    Boxer AL, Yu JT, Golbe LI, Litvan I, Lang AE, Höglinger GU (2017) Advances in progressive supranuclear palsy: new diagnostic criteria, biomarkers, and therapeutic approaches. Lancet Neurol 16(7):552–563CrossRefGoogle Scholar
  2. 2.
    Uttl B, Santacruz P, Litvan I, Grafman J (1998) Caregiving in progressive supranuclear palsy. Neurology 51:1303–1309CrossRefGoogle Scholar
  3. 3.
    Wiblin L, Lee M, Burn D (2017) Palliative care and its emerging role in multiple system atrophy and progressive Supranuclear palsy. Parkinsonism Relat Disord 34:7–14CrossRefGoogle Scholar
  4. 4.
    Pillas M, Selai C, Quinn NP, Lees A, Litvan I, Lang A, Bower J, Burn D, Low P, Schrag A (2016) Development and validation of a carers quality-of life questionnaire for parkinsonism (PQoL Carers). Qual Life Res 25(1):81–88CrossRefGoogle Scholar
  5. 5.
    Pillas M, Selai C, Schrag A (2017) Rasch analysis of the carers quality of life questionnaire for parkinsonism. Mov Disord 32(3):463–466CrossRefGoogle Scholar
  6. 6.
    Acquadro C, Joyce CRB, Patrick DL, Ware JE, Wu AW, Scientific Advisory Committee (2004) Linguistic validation manual for patient reported outcomes (PRO) instruments. MAPI Research InstituteGoogle Scholar
  7. 7.
    Höglinger GU, Respondek G, Stamelou M, Kurz C, Josephs KA, Lang AE, Mollenhauer B, Müller U, Nilsson C, JWhitwell JL, Arzberger T, Englund E, Gelpi E, Giese A, Irwin DJ, Meissner WG, Pantelyat A, Rajput A, van Swieten JC, Troakes C, Antonini A, Bhatia KP, Bordelon Y, Compta Y, Corvol JC, Colosimo C, Dickson DW, Dodel R, Ferguson L, Grossman M, Kassubek J, Krismer F, Levin J, Lorenzl S, Morris HR, Nestor P, Oertel WH, Poewe W, Rabinovici G, Rowe JB, Schellenberg GD, Seppi K, van Eimeren T, Wenning GK, Boxer AL, Golbe LI, Litvan I (2017) Clinical diagnosis of progressive supranuclear palsy: the Movement Disorder Society criteria. Mov Disord 32(6):853–864CrossRefGoogle Scholar
  8. 8.
    The EuroQol Group (1990) EuroQol–a new facility for the measurement of health-related quality of life. Health Policy 16:199–208CrossRefGoogle Scholar
  9. 9.
    Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67:361–370CrossRefGoogle Scholar
  10. 10.
    Golbe LI, Ohman-Strickland PA (2007) A clinical rating scale for progressive supranuclear palsy. Brain. 130(Pt 6):1552–1565CrossRefGoogle Scholar
  11. 11.
    Cronbach LJ (1951) Coefficient alpha and the internal structure of tests. Psychometrika 16:297–334CrossRefGoogle Scholar
  12. 12.
    Scientific Advisory Committee of the Medical Outcomes Trust (2002) Assessing health status and quality-of-life instruments: attributes and review criteria. Qual Life Res 11:193–205CrossRefGoogle Scholar
  13. 13.
    Nunnally JC, Bernstein IH (1994) Psychometric theory. McGraw-Hill, New YorkGoogle Scholar
  14. 14.
    Picillo M, Erro R, Cuoco S, Tepedino MF, Manara R, Pellecchia MT, Barone P, PSP Salerno Study Group (2018) MDS PSP criteria in real-life clinical setting: motor and cognitive characterization of subtypes. Mov Disord 33(8):1361–1365CrossRefGoogle Scholar

Copyright information

© Fondazione Società Italiana di Neurologia 2019

Authors and Affiliations

  • Marina Picillo
    • 1
  • Sofia Cuoco
    • 1
  • Marianna Amboni
    • 1
  • Francesco Paolo Bonifacio
    • 2
  • Antonino Bruno
    • 3
  • Fabio Bruschi
    • 4
  • Arianna Cappiello
    • 1
  • Rosa De Micco
    • 2
  • Anna De Rosa
    • 5
  • Francesca Di Biasio
    • 6
  • Francesca Elifani
    • 7
  • Roberto Erro
    • 1
  • Margherita Fabbri
    • 8
  • Marika Falla
    • 9
    • 10
  • Giulia Franco
    • 11
  • Daniela Frosini
    • 3
  • Sebastiano Galantucci
    • 12
  • Giulia Lazzeri
    • 11
  • Luca Magistrelli
    • 13
    • 14
  • Maria Chiara Malaguti
    • 15
  • Anna Vera Milner
    • 13
  • Brigida Minafra
    • 4
  • Enrica Olivola
    • 7
  • Andrea Pilotto
    • 16
  • Cristina Rascunà
    • 17
  • Maria Cristina Rizzetti
    • 18
  • Tommaso Schirinzi
    • 19
  • Barbara Borroni
    • 16
  • Roberto Ceravolo
    • 3
  • Alessio Di Fonzo
    • 11
  • Leonardo Lopiano
    • 8
  • 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
    • 4
  • Mario Zappia
    • 17
  • 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.Dipartimento di Medicina Clinica e SperimentaleUniversità di PisaPisaItaly
  4. 4.Parkinson’s Disease and Movement Disorders UnitIRCCS Mondino FoundationPaviaItaly
  5. 5.Department of Neurosciences and Reproductive and Odontostomatological SciencesFederico II UniversityNaplesItaly
  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 Raffaele – MilanoMilanItaly
  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 SistemiPoliclinico Tor VergataRomeItaly
  20. 20.Department of PsychologyUniversity of Campania “Luigi Vanvitelli”CasertaItaly

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