Development and testing of the Parkinson's disease quality of life scale

We report on the development and results of preliminary psychometric testing of a disease specific health‐related quality of life (HRQoL) scale intended for use in individuals diagnosed with idiopathic Parkinson's disease (PD). Results from an initial qualitative study provided content for item development and scale construction of the Parkinson's disease quality of life scale (PDQUALIF). The 33‐item instrument includes seven domains: social/role function, self‐image/sexuality, sleep, outlook, physical function, independence, and urinary function, plus one item of Global HRQoL. Initial psychometric testing of the instrument was conducted in 233 outpatient clinic attendees with physician‐confirmed idiopathic PD. Factor structure, reliability and validity of the scale have been established in this cross‐sectional study. Continuing development of the PDQUALIF will be directed at enhancing the psychometric properties, establishing responsiveness and determining appropriateness in culturally diverse samples. © 2003 Movement Disorder Society

[1]  G. Guyatt,et al.  Measuring disease-specific quality of life in clinical trials. , 1986, CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne.

[2]  N. Reynolds,et al.  Qualitative Assessment of Parkinson's Disease: Study of Reliability and Data Reduction with an Abbreviated Columbia Scale , 1985, Clinical neuropharmacology.

[3]  A. Zenzola,et al.  Fatigue in Parkinson’s disease , 2003, Neurological Sciences.

[4]  J. Fleiss The design and analysis of clinical experiments , 1987 .

[5]  B. Spilker,et al.  Quality of life and pharmacoeconomics in clinical trials , 1996 .

[6]  J. Larsen,et al.  Health related quality of life in Parkinson's disease: a prospective longitudinal study , 2000, Journal of neurology, neurosurgery, and psychiatry.

[7]  Klaus Krippendorff,et al.  Content Analysis: An Introduction to Its Methodology , 1980 .

[8]  W. Weiner,et al.  Comorbidity of the nonmotor symptoms of Parkinson's disease , 2001, Movement disorders : official journal of the Movement Disorder Society.

[9]  D. Calne,et al.  Assessment of Parkinson's Disease , 1984, Clinical neuropharmacology.

[10]  M. Hoehn,et al.  Parkinsonism , 1967, Neurology.

[11]  J. Ware SF-36 health survey: Manual and interpretation guide , 2003 .

[12]  J. Speelman,et al.  Quality of life in patients with Parkinson's disease: development of a questionnaire. , 1996, Journal of neurology, neurosurgery, and psychiatry.

[13]  A. H. Zwinderman,et al.  Rating impairment and disability in Parkinson's disease: Evaluation of the unified Parkinson's disease rating scale , 1994, Movement disorders : official journal of the Movement Disorder Society.

[14]  C. Waltz,et al.  Measurement in nursing research , 1984 .

[15]  A. Stiggelbout,et al.  Health related quality of life in Parkinson's disease: a systematic review of disease specific instruments , 2002, Journal of neurology, neurosurgery, and psychiatry.

[16]  J. H. Friedman,et al.  Fatigue in Parkinson's disease: a nine‐year follow‐up , 2001, Movement disorders : official journal of the Movement Disorder Society.

[17]  Ron D. Hays,et al.  Beyond internal consistency reliability: Rationale and user’s guide for Multitrait Analysis Program on the microcomputer , 1990 .

[18]  O. Dehlin,et al.  Insomnia and depressive symptoms in patients with Parkinson's disease. Relationship to health-related quality of life. An interview study of patients living at home. , 2001, Archives of gerontology and geriatrics.

[19]  L A Beckett,et al.  Prevalence of parkinsonian signs and associated mortality in a community population of older people. , 1996, The New England journal of medicine.

[20]  P. Martínez-Martín,et al.  Unified Parkinson's disease rating scale characteristics and structure , 1994, Movement disorders : official journal of the Movement Disorder Society.

[21]  R. Fitzpatrick,et al.  Self-reported functioning and well-being in patients with Parkinson's disease: comparison of the short-form health survey (SF-36) and the Parkinson's Disease Questionnaire (PDQ-39) , 1995, Age and ageing.

[22]  J. Pater Quality of life and pharmacoeconomics in clinical trials , 1996 .

[23]  A. Damiano,et al.  A review of health-related quality-of-life concepts and measures for Parkinson's disease , 1999, Quality of Life Research.

[24]  Matthew B.Stern Beyond The Decade of the Brain , 1994 .

[25]  L. Cronbach Internal consistency of tests: Analyses old and new , 1988 .

[26]  M. Bergner,et al.  The Sickness Impact Profile: Development and Final Revision of a Health Status Measure , 1981, Medical care.

[27]  R. Hays,et al.  Comparison of a generic to disease-targeted health-related quality-of-life measures for multiple sclerosis. , 1997, Journal of clinical epidemiology.

[28]  A Schrag,et al.  How does Parkinson's disease affect quality of life? A comparison with quality of life in the general population , 2000, Movement disorders : official journal of the Movement Disorder Society.

[29]  B. Everitt,et al.  Statistical methods for rates and proportions , 1973 .

[30]  S Fahn,et al.  Falling asleep at the wheel: Motor vehicle mishaps in persons taking pramipexole and ropinirole , 1999, Neurology.

[31]  R. Fitzpatrick,et al.  The development and validation of a short measure of functioning and well being for individuals with Parkinson's disease , 1995, Quality of Life Research.

[32]  J. Ware Conceptualizing Disease Impact and Treatment Outcomes , 1984, Cancer.

[33]  C. Wiles Quantification of neurologic deficit , 1990 .

[34]  D. Murphy,et al.  Validating a quality of life rating scale for idiopathic parkinsonism: Parkinson's Impact Scale (PIMS). , 1996, Parkinsonism & related disorders.