Validation of the Italian version of carers’ quality-of-life questionnaire for parkinsonism (PQoL Carer) in progressive supranuclear palsy
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.
KeywordsProgressive supranuclear palsy Quality of life Caregiver Carer Clinical trials
Euroqol visual analogue scale
Hospital Anxiety Depression Scale
Hospital Anxiety Depression Scale – anxiety
Hospital Anxiety Depression scale – depression
Health-related quality of life
Movement Disorders Society
Progressive supranuclear palsy
Progressive Supranuclear Palsy rating scale
- PQoL Carers
Carers’ quality-of-life questionnaire for parkinsonism
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.
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.
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