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12-08-2015

Development and validation of a carers quality-of-life questionnaire for parkinsonism (PQoL Carers)

Auteurs: Marios Pillas, Caroline Selai, Niall P. Quinn, Andrew Lees, Irene Litvan, Anthony Lang, James Bower, David Burn, Philip Low, Anette Schrag

Gepubliceerd in: Quality of Life Research | Uitgave 1/2016

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Abstract

Purpose

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.
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Metagegevens
Titel
Development and validation of a carers quality-of-life questionnaire for parkinsonism (PQoL Carers)
Auteurs
Marios Pillas
Caroline Selai
Niall P. Quinn
Andrew Lees
Irene Litvan
Anthony Lang
James Bower
David Burn
Philip Low
Anette Schrag
Publicatiedatum
12-08-2015
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 1/2016
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-015-1071-y

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