Development and validation of a carers quality-of-life questionnaire for parkinsonism (PQoL Carers).
OBJECTIVE
Atypical parkinsonism (AP) has a considerable impact on the lives not only of patients but also of their carers. The aim of this study was to develop an instrument for assessing the quality of life (QoL) of carers of patients with AP.


METHODS
A 40-item pool was generated from in-depth interviews with carers of patients with AP, a thorough review of the existing literature and consultation with movement disorder experts. Item refinement and reduction was performed using the results of pilot testing and a survey in 282 carers of multiple system atrophy (MSA) patients and 226 carers of progressive supranuclear palsy (PSP) patients. A validation study, with responses of 243 carers of MSA and 187 carers of PSP patients, was undertaken to evaluate the psychometric properties of the final 26-item scale.


RESULTS
The validation study results suggest that the scale is unidimensional and has high internal consistency (Cronbach's α = 0.96). The correlations of scale scores with patients' health status and QoL measures, such as PDQ-39 summary score and EQ-5D index (Spearman's ρ = 0.56 and -0.31, respectively, P < 0.001), as well as carers' measures, such as Caregiver Burden Inventory (CBI) total and EQ-5D index (Spearman's ρ = 0.85 and -0.39, respectively, P < 0.001), document the convergent and concurrent validity of the scale. ANOVA results support the discriminant validity of the scale, as evidenced by its capacity to differentiate between carers with varying levels of self-reported health.


CONCLUSIONS
The 26-item Parkinsonism Carers QoL (PQoL Carer) is a concise instrument with adequate psychometric qualities that can be used for clinical and research purposes.
Faculty of Social and Human Sciences, University of Southampton, Southampton, UK.
Marios
M
Pillas
Department of Clinical Neurosciences, UCL Institute of Neurology, University College London, London, UK.
Caroline
C
Selai
Department of Clinical Neurosciences, UCL Institute of Neurology, University College London, London, UK.
Niall P
NP
Quinn
Department of Clinical Neurosciences, UCL Institute of Neurology, University College London, London, UK.
Andrew
A
Lees
Movement Disorder Program, Department of Neurology, University of Louisville, Louisville, KY, USA.
Irene
I
Litvan
Toronto Western Hospital and the University of Toronto, Toronto, ON, Canada.
Anthony
A
Lang
Department of Neurology, Mayo Clinic College of Medicine, Rochester, MN, USA.
James
J
Bower
Institute for Ageing and Health, Newcastle University, Newcastle upon Tyne, UK.
David
D
Burn
Department of Neurology, Mayo Clinic College of Medicine, Rochester, MN, USA.
Philip
P
Low
Department of Clinical Neurosciences, UCL Institute of Neurology, University College London, London, UK. a.schrag@ucl.ac.uk.
Anette
A
Schrag
D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D020734:Parkinsonian Disorders / Q000473:pathology*; D011594:Psychometrics / Q000295:instrumentation / Q000379:methods*; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires
Atypical parkinsonism; Instrument validation; Patient carers; Quality of life