The development and validation of a quality of life measure for the carers of people with Parkinson's disease (the PDQ-Carer).
BACKGROUND
Parkinson's disease (PD) can have substantial effects not only on the quality of life of those diagnosed with the condition but also upon the informal carers who provide support and assistance to them. However, to date no well-validated carer specific quality of life measure has been developed for carers of people with PD.


OBJECTIVE
This paper documents the development and validation of a PD specific carer quality of life scale.


METHODS
In depth interviews were undertaken with carers of people with PD. The interviews were transcribed and analysed thematically to derive a pool of potential items for the questionnaire. A pilot survey was used to refine the initial version of the questionnaire. A developmental survey was undertaken and the results analysed to produce the final 29-item measure. A validation survey was then undertaken to assess the construct validity and reliability of the measure.


RESULTS
Survey results suggest a 29-item questionnaire tapping four dimensions of quality of life (Social and Personal Activities, Anxiety and Depression, Self care, and Strain). Internal consistency reliability was found to be high for all domains. Data completeness was high. Construct validity (assessed by correlations with a generic measure of quality of life) confirmed prior hypotheses.


CONCLUSIONS
The 29-item Parkinson Disease Questionnaire for Carers (PDQ-Carer) is a short, meaningful quality of life instrument, which taps areas of specific salience and concern to PD carers.
University of Oxford, Department of Public Health, Old Road Campus, Headington, Oxford OX3 7LF, United Kingdom. crispin.jenkinson@dph.ox.ac.uk
Crispin
C
Jenkinson
Sarah
S
Dummett
Laura
L
Kelly
Michele
M
Peters
Jill
J
Dawson
David
D
Morley
Ray
R
Fitzpatrick
D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001007:Anxiety / Q000209:etiology; D017028:Caregivers / Q000523:psychology*; D003863:Depression / Q000209:etiology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease / Q000150:complications / Q000175:diagnosis* / Q000523:psychology*; D011788:Quality of Life; D015203:Reproducibility of Results; D012648:Self Care; D011795:Surveys and Questionnaires