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J Neurol Neurosurg Psychiatry. Feb 2002; 72(2): 241–248.
PMCID: PMC1737742

Health related quality of life in Parkinson's disease: a systematic review of disease specific instruments


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.

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Selected References

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  • 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. [PubMed]
  • Guyatt GH, Bombardier C, Tugwell PX. Measuring disease-specific quality of life in clinical trials. CMAJ. 1986 Apr 15;134(8):889–895. [PMC free article] [PubMed]
  • Kirshner B, Guyatt G. A methodological framework for assessing health indices. J Chronic Dis. 1985;38(1):27–36. [PubMed]
  • Bland JM, Altman DG. Cronbach's alpha. BMJ. 1997 Feb 22;314(7080):572–572. [PMC free article] [PubMed]
  • 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. [PubMed]
  • de Boer AG, Wijker W, Speelman JD, de Haes JC. Quality of life in patients with Parkinson's disease: development of a questionnaire. J Neurol Neurosurg Psychiatry. 1996 Jul;61(1):70–74. [PMC free article] [PubMed]
  • 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. [PubMed]
  • Bushnell DM, Martin ML. 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. [PubMed]
  • Martínez Martín P, Frades B, Jiménez Jiménez FJ, Pondal M, López Lozano JJ, Vela L, Vázquez A, del Val Fernández J, Diví M, Fabregat N, et al. The PDQ-39 Spanish version: reliability and correlation with the short-form health survey (SF-36). Neurologia. 1999 Apr;14(4):159–163. [PubMed]
  • 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]
  • 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. [PubMed]
  • Damiano AM, McGrath MM, Willian MK, Snyder CF, LeWitt PA, Reyes PF, Richter RR, Means ED. 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. [PubMed]
  • 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. [PubMed]
  • Harrison JE, Preston S, Blunt SB. Measuring symptom change in patients with Parkinson's disease. Age Ageing. 2000 Jan;29(1):41–45. [PubMed]
  • Damiano AM, Snyder C, Strausser B, Willian MK. A review of health-related quality-of-life concepts and measures for Parkinson's disease. Qual Life Res. 1999 May;8(3):235–243. [PubMed]
  • 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. [PubMed]
  • Schrag A, Selai C, Jahanshahi M, Quinn NP. 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. [PMC free article] [PubMed]
  • 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. [PMC free article] [PubMed]
  • 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. [PubMed]

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