Skip to main content
Top
Published in: Health and Quality of Life Outcomes 1/2015

Open Access 01-12-2015 | Short report

Evaluating the psychometric properties of an e-based version of the 39-item Parkinson’s Disease Questionnaire

Authors: David Morley, Sarah Dummett, Laura Kelly, Jill Dawson, Crispin Jenkinson

Published in: Health and Quality of Life Outcomes | Issue 1/2015

Login to get access

Abstract

Background

The 39-item Parkinson’s Disease Questionnaire (PDQ-39) is the most thoroughly validated and extensively used self-report measure for the assessment of health-related quality of life in people with Parkinson’s (PwP). Given the extent of its use and increasing emphasis on electronic data capture, an e-based version of the PDQ-39, the ePDQ, has recently been developed. The aim of this short report is to present some key reliability and validity data that confirm the psychometric quality of the ePDQ.

Findings

Participants were emailed a unique link to an online survey incorporating the ePDQ and demographic questions. A total of 118 PwP fully completed the survey. Floor and ceiling effects were calculated to ensure responses were not biased to extreme values. Consequently, score reliability was assessed by item-total correlations with a range from 0.34 to 0.90. Cronbach’s alpha was calculated at between 0.64 and 0.95 for the eight domains of the ePDQ. Construct validity was assessed by comparing domain scores in relation to disease duration and gender, with hypothesised differences being largely confirmed. Construct validity was further assessed following a higher order factor analysis which confirmed the appropriateness of calculating a summary index score. Subsequently, significant, but moderate correlations were calculated between the ePDQ summary index score and disease duration and age at diagnosis.

Conclusions

Results indicate that the ePDQ largely mirrors the properties of its parent instrument, the PDQ-39, in terms of reliability and validity. Potential users can therefore incorporate the ePDQ into computer-based data capture systems with confidence.
Literature
1.
go back to reference Peto V, Jenkinson C, Fitzpatrick R, Greenhall R. The development of a short measure of functioning and well being for individuals with Parkinson’s disease. Qual Life Res. 1995;4:241–8.PubMedCrossRef Peto V, Jenkinson C, Fitzpatrick R, Greenhall R. The development of a short measure of functioning and well being for individuals with Parkinson’s disease. Qual Life Res. 1995;4:241–8.PubMedCrossRef
2.
go back to reference Martinez-Martin P, Jeukens-Visser M, Lyons K, Rodriguez-Blazquez C, Selai C, Siderowf A, et al. Health-related quality-of-life scales in Parkinson’s disease: critique and recommendations. Mov Disord. 2011;26:2371–80.PubMedCrossRef Martinez-Martin P, Jeukens-Visser M, Lyons K, Rodriguez-Blazquez C, Selai C, Siderowf A, et al. Health-related quality-of-life scales in Parkinson’s disease: critique and recommendations. Mov Disord. 2011;26:2371–80.PubMedCrossRef
3.
go back to reference Peto V, Jenkinson C, Fitzpatrick R. PDQ-39: a review of the development, validation and application of a Parkinson’s disease quality of life questionnaire and its associated measures. J Neurol. 1998;245 Suppl 1:10–4.CrossRef Peto V, Jenkinson C, Fitzpatrick R. PDQ-39: a review of the development, validation and application of a Parkinson’s disease quality of life questionnaire and its associated measures. J Neurol. 1998;245 Suppl 1:10–4.CrossRef
4.
go back to reference Fitzpatrick R, Jenkinson C, Peto V, Hyman N, Greenhall R. Desirable properties for instruments assessing quality of life: evidence from the PDQ-39. J Neurol Neurosurg Psychiatry. 1997;62:104.PubMedCentralPubMedCrossRef Fitzpatrick R, Jenkinson C, Peto V, Hyman N, Greenhall R. Desirable properties for instruments assessing quality of life: evidence from the PDQ-39. J Neurol Neurosurg Psychiatry. 1997;62:104.PubMedCentralPubMedCrossRef
5.
go back to reference Peto V, Jenkinson C, Fitzpatrick R. Determining minimally important differences for the Parkinson’s disease questionnaire (PDQ-39). Age Ageing. 2001;30:299–302.PubMedCrossRef Peto V, Jenkinson C, Fitzpatrick R. Determining minimally important differences for the Parkinson’s disease questionnaire (PDQ-39). Age Ageing. 2001;30:299–302.PubMedCrossRef
6.
go back to reference Jenkinson C, Fitzpatrick R, Peto V, Dummett S, Morley D, Saunders P. The Parkinson’s Disease Questionnaire: User Manual. 3rd ed. Oxford: Isis Outcomes; 2012. Jenkinson C, Fitzpatrick R, Peto V, Dummett S, Morley D, Saunders P. The Parkinson’s Disease Questionnaire: User Manual. 3rd ed. Oxford: Isis Outcomes; 2012.
7.
go back to reference McGhee D, Parker A, Fielding S, Counsell C. Which clinical measures are most appropriate for measuring disease progression in Parkinson’s disease? J Neurol Neurosurg Psychiatry. 2013;84:e2. McGhee D, Parker A, Fielding S, Counsell C. Which clinical measures are most appropriate for measuring disease progression in Parkinson’s disease? J Neurol Neurosurg Psychiatry. 2013;84:e2.
8.
go back to reference Marinus J, Ramaker C, van-Hilten JJ, Stiggelbout AM. Health related quality of life in Parkinson’s disease: a systematic review of disease specific instruments. J Neurol Neurosurg Psychiatry. 2002;72:241–8.PubMedCentralPubMedCrossRef Marinus J, Ramaker C, van-Hilten JJ, Stiggelbout AM. Health related quality of life in Parkinson’s disease: a systematic review of disease specific instruments. J Neurol Neurosurg Psychiatry. 2002;72:241–8.PubMedCentralPubMedCrossRef
9.
go back to reference Shah J, Rajgor D, Pradhan S, McCready M, Zaveri A, Pietrobon R. Electronic data capture for registries and clinical trials in orthopaedic surgery: open source versus commercial systems. Clin Orthop Relat Res. 2010;468:2664–71.PubMedCentralPubMedCrossRef Shah J, Rajgor D, Pradhan S, McCready M, Zaveri A, Pietrobon R. Electronic data capture for registries and clinical trials in orthopaedic surgery: open source versus commercial systems. Clin Orthop Relat Res. 2010;468:2664–71.PubMedCentralPubMedCrossRef
10.
go back to reference Bennett AV, Jensen RE, Basch E. Electronic patient-reported outcome systems in oncology clinical practice. CA Cancer J Clin. 2012;62:337–47.PubMedCrossRef Bennett AV, Jensen RE, Basch E. Electronic patient-reported outcome systems in oncology clinical practice. CA Cancer J Clin. 2012;62:337–47.PubMedCrossRef
11.
go back to reference Holzner B, Giesinger JM, Pinggera J, Zugal S, Schöpf F, Oberguggenberger AS, et al. The Computer-based Health Evaluation Software (CHES): a software for electronic patient-reported outcome monitoring. BMC Med Inform Decis Mak. 2012;12:126.PubMedCentralPubMedCrossRef Holzner B, Giesinger JM, Pinggera J, Zugal S, Schöpf F, Oberguggenberger AS, et al. The Computer-based Health Evaluation Software (CHES): a software for electronic patient-reported outcome monitoring. BMC Med Inform Decis Mak. 2012;12:126.PubMedCentralPubMedCrossRef
12.
go back to reference Zbrozek A, Hebert J, Gogates G, Thorell R, Dell C, Molsen E, et al. Validation of electronic systems to collect patient-reported outcome (PRO) data-recommendations for clinical trial teams: report of the ISPOR ePRO systems validation good research practices task force. Value Health. 2013;16:480–9.PubMedCrossRef Zbrozek A, Hebert J, Gogates G, Thorell R, Dell C, Molsen E, et al. Validation of electronic systems to collect patient-reported outcome (PRO) data-recommendations for clinical trial teams: report of the ISPOR ePRO systems validation good research practices task force. Value Health. 2013;16:480–9.PubMedCrossRef
13.
go back to reference Morley D, Dummett S, Kelly L, Dawson J, Jenkinson C. An electronic version of the PDQ-39: acceptability to respondents and assessment of alternative response formats. J Parkinsons Dis. 2014;4:467–72.PubMed Morley D, Dummett S, Kelly L, Dawson J, Jenkinson C. An electronic version of the PDQ-39: acceptability to respondents and assessment of alternative response formats. J Parkinsons Dis. 2014;4:467–72.PubMed
14.
go back to reference Coons SJ, Gwaltney CJ, Hays RD, Lundy JJ, Sloan JA, Revicki DA, et al. Recommendations on evidence needed to support measurement equivalence between electronic and paper-based patient-reported outcome (PRO) measures: ISPOR ePRO good research practices task force report. Value Health. 2009;12:419–29.PubMedCrossRef Coons SJ, Gwaltney CJ, Hays RD, Lundy JJ, Sloan JA, Revicki DA, et al. Recommendations on evidence needed to support measurement equivalence between electronic and paper-based patient-reported outcome (PRO) measures: ISPOR ePRO good research practices task force report. Value Health. 2009;12:419–29.PubMedCrossRef
15.
go back to reference Qualtrics (2005) Qualtrics. 37,892 ed. Provo, Utah, USA: Qualtrics Research Suite. Qualtrics (2005) Qualtrics. 37,892 ed. Provo, Utah, USA: Qualtrics Research Suite.
16.
go back to reference Jenkinson C, Fitzpatrick R, Peto V, Greenhall R, Hyman N. The Parkinson’s disease questionnaire (PDQ-39): development and validation of a Parkinson’s disease summary index score. Age Ageing. 1997;26:353–7.PubMedCrossRef Jenkinson C, Fitzpatrick R, Peto V, Greenhall R, Hyman N. The Parkinson’s disease questionnaire (PDQ-39): development and validation of a Parkinson’s disease summary index score. Age Ageing. 1997;26:353–7.PubMedCrossRef
17.
go back to reference Hobart JC, Riazi A, Lamping DL, Fitzpatrick R, Thompson AJ. Improving the evaluation of therapeutic interventions in multiple sclerosis: development of a patient-based measure of outcome. Health Technol Assess. 2004;8(9):iii. 1-48.PubMedCrossRef Hobart JC, Riazi A, Lamping DL, Fitzpatrick R, Thompson AJ. Improving the evaluation of therapeutic interventions in multiple sclerosis: development of a patient-based measure of outcome. Health Technol Assess. 2004;8(9):iii. 1-48.PubMedCrossRef
18.
go back to reference Estabrooks CA, Squires JE, Hayduk LA, Cummings GG, Norton PG. Advancing the argument for validity of the Alberta Context Tool with healthcare aides in residential long-term care. BMC Med Res Methodol. 2011;11:107.PubMedCentralPubMedCrossRef Estabrooks CA, Squires JE, Hayduk LA, Cummings GG, Norton PG. Advancing the argument for validity of the Alberta Context Tool with healthcare aides in residential long-term care. BMC Med Res Methodol. 2011;11:107.PubMedCentralPubMedCrossRef
19.
go back to reference Scientific Advisory Committee of the Medical Outcomes Trust. Assessing health status and quality of life instruments: attributes and review criteria. Qual Life Res. 2002;11:193–205.CrossRef Scientific Advisory Committee of the Medical Outcomes Trust. Assessing health status and quality of life instruments: attributes and review criteria. Qual Life Res. 2002;11:193–205.CrossRef
20.
go back to reference Helmstater G. Principles of Psychological Measurement. New York: Appleton; 1964. Helmstater G. Principles of Psychological Measurement. New York: Appleton; 1964.
21.
go back to reference Brazier J, Deverill M. A checklist for judging preference-based measures of health related quality of life: learning from psychometrics. Health Econ. 1999;8:41–51.PubMedCrossRef Brazier J, Deverill M. A checklist for judging preference-based measures of health related quality of life: learning from psychometrics. Health Econ. 1999;8:41–51.PubMedCrossRef
22.
go back to reference Morley D, Selai C, Schrag A, Thompson A, Jahanshahi M. Refinement and validation of the parental illness impact scale. Parkinsonism Relat Disord. 2010;16:181–5.PubMedCrossRef Morley D, Selai C, Schrag A, Thompson A, Jahanshahi M. Refinement and validation of the parental illness impact scale. Parkinsonism Relat Disord. 2010;16:181–5.PubMedCrossRef
23.
go back to reference Papaioannou D, Brazier J, Parry G. How valid and responsive are generic health status measures, such as EQ-5D and SF-36, in schizophrenia? A systematic review. Value Health. 2011;14:907–20.PubMedCentralPubMedCrossRef Papaioannou D, Brazier J, Parry G. How valid and responsive are generic health status measures, such as EQ-5D and SF-36, in schizophrenia? A systematic review. Value Health. 2011;14:907–20.PubMedCentralPubMedCrossRef
24.
go back to reference Ware JE, Kosinski M, Keller SD. SF-36 Physical & Mental Summary Scores: A User’s Manual. Boston: The Health Institute, New England Medical Center; 1994. Ware JE, Kosinski M, Keller SD. SF-36 Physical & Mental Summary Scores: A User’s Manual. Boston: The Health Institute, New England Medical Center; 1994.
25.
go back to reference Ware JE, Kosinski M, Bayliss MS, McHorney C, Rogers WH, Raczek A. Comparison of methods for scoring and statistical analysis of SF-36 health profile and summary measures: summary of results from the medical outcomes study. Med Care. 1995;33:AS264–79.PubMedCrossRef Ware JE, Kosinski M, Bayliss MS, McHorney C, Rogers WH, Raczek A. Comparison of methods for scoring and statistical analysis of SF-36 health profile and summary measures: summary of results from the medical outcomes study. Med Care. 1995;33:AS264–79.PubMedCrossRef
26.
go back to reference Morley D, Jenkinson C, Doll H, Lavis G, Sharp R, Cooke P, et al. The Manchester-Oxford Foot Questionnaire (MOXFQ): development and validation of a summary index score. Bone Joint Res. 2013;2:66–9.PubMedCentralPubMedCrossRef Morley D, Jenkinson C, Doll H, Lavis G, Sharp R, Cooke P, et al. The Manchester-Oxford Foot Questionnaire (MOXFQ): development and validation of a summary index score. Bone Joint Res. 2013;2:66–9.PubMedCentralPubMedCrossRef
27.
go back to reference Morley D, Dummett S, Kelly L, Peters M, Dawson J, Fitzpatrick R, et al. The PDQ-Carer: development and validation of a summary index score. Parkinsonism Relat Disord. 2013;19:448–9.PubMedCrossRef Morley D, Dummett S, Kelly L, Peters M, Dawson J, Fitzpatrick R, et al. The PDQ-Carer: development and validation of a summary index score. Parkinsonism Relat Disord. 2013;19:448–9.PubMedCrossRef
Metadata
Title
Evaluating the psychometric properties of an e-based version of the 39-item Parkinson’s Disease Questionnaire
Authors
David Morley
Sarah Dummett
Laura Kelly
Jill Dawson
Crispin Jenkinson
Publication date
01-12-2015
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2015
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-014-0193-1

Other articles of this Issue 1/2015

Health and Quality of Life Outcomes 1/2015 Go to the issue