Abstract
Objective: To compare and contrast disease-specific quality of life instruments in Parkinson's disease and assess their clinimetric properties.
Methods: Two reviewers independently evaluated both thoroughness and results of studies regarding clinimetric characteristics of identified scales.
Results: Twenty studies were found reporting on the clinimetric properties of four scales. The content validity of the Parkinson's disease questionnaire-39 item version (PDQ-39), the Parkinson's disease quality of life questionnaire (PDQL), and the "Fragebogen Parkinson LebensQualität" (Parkinson Quality of Life questionnaire; PLQ) was adequate to good, but for the Parkinson's impact scale (PIMS) it was insufficient. Construct validity of both the PDQ-39 and the PDQL was good, but for the PLQ and the PIMS this was insufficiently evaluated. Internal consistency of all scale totals and of subscale totals of the PDQL were good, whereas for the social support subscale of the PDQ-39 and four subscales of the PLQ this was inadequate. Test-retest reliability was not evaluated for the PDQL and was adequate in the other scales. Responsiveness was partially established for the PDQ-39, and not assessed for the other scales. The number of available translations, as well as the number of studies in which these instruments were used, differed considerably.
Conclusions: The selection of an instrument partially depends on the goal of the study. In many situations however, the PDQ-39 will probably be the most appropriate HRQoL instrument. The PDQL may be considered as an alternative, whereas the PLQ may be considered in studies involving German speaking patients with Parkinson's disease. Use of the PIMS should be considered only as a means of identifying areas of potential problems.
Full Text
The Full Text of this article is available as a PDF (124.0 KB).
Selected References
These references are in PubMed. This may not be the complete list of references from this article.
- Bland J. M., Altman D. G. Cronbach's alpha. BMJ. 1997 Feb 22;314(7080):572–572. doi: 10.1136/bmj.314.7080.572. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Bowling A. What things are important in people's lives? A survey of the public's judgements to inform scales of health related quality of life. Soc Sci Med. 1995 Nov;41(10):1447–1462. doi: 10.1016/0277-9536(95)00113-l. [DOI] [PubMed] [Google Scholar]
- Bushnell D. M., Martin M. L. Quality of life and Parkinson's disease: translation and validation of the US Parkinson's Disease Questionnaire (PDQ-39). Qual Life Res. 1999 Jun;8(4):345–350. doi: 10.1023/a:1008979705027. [DOI] [PubMed] [Google Scholar]
- Damiano A. M., McGrath M. M., Willian M. K., Snyder C. F., LeWitt P. A., Reyes P. F., Richter R. R., Means E. D. Evaluation of a measurement strategy for Parkinson's disease: assessing patient health-related quality of life. Qual Life Res. 2000 Feb;9(1):87–100. doi: 10.1023/a:1008928321652. [DOI] [PubMed] [Google Scholar]
- Damiano A. M., Snyder C., Strausser B., Willian M. K. A review of health-related quality-of-life concepts and measures for Parkinson's disease. Qual Life Res. 1999 May;8(3):235–243. doi: 10.1023/a:1008823222574. [DOI] [PubMed] [Google Scholar]
- Fitzpatrick R., Peto V., Jenkinson C., Greenhall R., Hyman N. Health-related quality of life in Parkinson's disease: a study of outpatient clinic attenders. Mov Disord. 1997 Nov;12(6):916–922. doi: 10.1002/mds.870120613. [DOI] [PubMed] [Google Scholar]
- Guyatt G. H., Bombardier C., Tugwell P. X. Measuring disease-specific quality of life in clinical trials. CMAJ. 1986 Apr 15;134(8):889–895. [PMC free article] [PubMed] [Google Scholar]
- Harrison J. E., Preston S., Blunt S. B. Measuring symptom change in patients with Parkinson's disease. Age Ageing. 2000 Jan;29(1):41–45. doi: 10.1093/ageing/29.1.41. [DOI] [PubMed] [Google Scholar]
- Hobson P., Holden A., Meara J. Measuring the impact of Parkinson's disease with the Parkinson's Disease Quality of Life questionnaire. Age Ageing. 1999 Jul;28(4):341–346. doi: 10.1093/ageing/28.4.341. [DOI] [PubMed] [Google Scholar]
- 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 Sep;26(5):353–357. doi: 10.1093/ageing/26.5.353. [DOI] [PubMed] [Google Scholar]
- Jenkinson C., Peto V., Fitzpatrick R., Greenhall R., Hyman N. 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) Age Ageing. 1995 Nov;24(6):505–509. doi: 10.1093/ageing/24.6.505. [DOI] [PubMed] [Google Scholar]
- Kirshner B., Guyatt G. A methodological framework for assessing health indices. J Chronic Dis. 1985;38(1):27–36. doi: 10.1016/0021-9681(85)90005-0. [DOI] [PubMed] [Google Scholar]
- Martínez Martín P., Frades B., Jiménez Jiménez F. J., Pondal M., López Lozano J. J., Vela L., Vázquez A., del Val Fernández J., Diví M., Fabregat N. The PDQ-39 Spanish version: reliability and correlation with the short-form health survey (SF-36). Neurologia. 1999 Apr;14(4):159–163. [PubMed] [Google Scholar]
- Mauduit N., Schück S., Allain H., Chaperon J. Echelles et questionnaires dans la maladie de Parkinson. Rev Neurol (Paris) 2000;156 (Suppl 2 Pt 2):63–69. [PubMed] [Google Scholar]
- Peto V., Jenkinson C., Fitzpatrick R., Greenhall R. The development and validation of a short measure of functioning and well being for individuals with Parkinson's disease. Qual Life Res. 1995 Jun;4(3):241–248. doi: 10.1007/BF02260863. [DOI] [PubMed] [Google Scholar]
- Schrag A., Jahanshahi M., Quinn N. How does Parkinson's disease affect quality of life? A comparison with quality of life in the general population. Mov Disord. 2000 Nov;15(6):1112–1118. doi: 10.1002/1531-8257(200011)15:6<1112::aid-mds1008>3.0.co;2-a. [DOI] [PubMed] [Google Scholar]
- Schrag A., Jahanshahi M., Quinn N. What contributes to quality of life in patients with Parkinson's disease? J Neurol Neurosurg Psychiatry. 2000 Sep;69(3):308–312. doi: 10.1136/jnnp.69.3.308. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Schrag A., Selai C., Jahanshahi M., Quinn N. P. The EQ-5D--a generic quality of life measure-is a useful instrument to measure quality of life in patients with Parkinson's disease. J Neurol Neurosurg Psychiatry. 2000 Jul;69(1):67–73. doi: 10.1136/jnnp.69.1.67. [DOI] [PMC free article] [PubMed] [Google Scholar]
- de Boer A. G., Wijker W., Speelman J. D., de Haes J. C. Quality of life in patients with Parkinson's disease: development of a questionnaire. J Neurol Neurosurg Psychiatry. 1996 Jul;61(1):70–74. doi: 10.1136/jnnp.61.1.70. [DOI] [PMC free article] [PubMed] [Google Scholar]