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

Marios Pillas, Caroline Selai, Niall P. Quinn, Andrew Lees, Irene Litvan, Anthony Lang, James Howard Bower, David Burn, Phillip Anson Low, Anette Schrag

Research output: Contribution to journalArticle

7 Citations (Scopus)

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 

Original languageEnglish (US)
Pages (from-to)81-88
Number of pages8
JournalQuality of Life Research
Volume25
Issue number1
DOIs
StatePublished - Jan 1 2016

Fingerprint

Parkinsonian Disorders
Caregivers
Quality of Life
Progressive Supranuclear Palsy
Multiple System Atrophy
Validation Studies
Movement Disorders
Surveys and Questionnaires
Psychometrics
Health Status
Referral and Consultation
Interviews

Keywords

  • Atypical parkinsonism
  • Instrument validation
  • Patient carers
  • Quality of life

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

Pillas, M., Selai, C., Quinn, N. P., Lees, A., Litvan, I., Lang, A., ... Schrag, A. (2016). Development and validation of a carers quality-of-life questionnaire for parkinsonism (PQoL Carers). Quality of Life Research, 25(1), 81-88. https://doi.org/10.1007/s11136-015-1071-y

Development and validation of a carers quality-of-life questionnaire for parkinsonism (PQoL Carers). / Pillas, Marios; Selai, Caroline; Quinn, Niall P.; Lees, Andrew; Litvan, Irene; Lang, Anthony; Bower, James Howard; Burn, David; Low, Phillip Anson; Schrag, Anette.

In: Quality of Life Research, Vol. 25, No. 1, 01.01.2016, p. 81-88.

Research output: Contribution to journalArticle

Pillas, Marios ; Selai, Caroline ; Quinn, Niall P. ; Lees, Andrew ; Litvan, Irene ; Lang, Anthony ; Bower, James Howard ; Burn, David ; Low, Phillip Anson ; Schrag, Anette. / Development and validation of a carers quality-of-life questionnaire for parkinsonism (PQoL Carers). In: Quality of Life Research. 2016 ; Vol. 25, No. 1. pp. 81-88.
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