title: Health-related quality-of-life measurement in patients with Parkinson's disease.
abstract: Outcome measures are increasingly used to assess the impact of diseases such as Parkinson's disease (PD) from the patient's perspective. These measures, in the form of questionnaires to assess health-related quality of life (HR-QOL), are of 2 main kinds: generic and disease-specific. The former is intended to be relevant to the widest range of health problems; the latter is developed specifically to assess HR-QOL for a specific condition. Possible consequences of PD have been assessed by generic instruments such as the Sickness Impact Profile (SIP), the Nottingham Health Profile (NHP), the Medical Outcomes Study 36-Item Short Form (SF-36) Health Survey and also by disease-specific instruments; in particular, the Parkinson's Disease Quality-of-Life Questionnaire (PDQL) and 39-Item Parkinson's Disease Questionnaire (PDQ-39). This article summarises the criteria whereby such instruments should be evaluated by potential users and describes in more detail the methods of developing and testing such disease-specific instruments for use in PD. There is a range of valid and feasible methods available for taking into account patients' views of PD outcomes. These will become important outcome measures in future clinical trials of treatment regimes.
authors.affiliation: Department of Public Health, University of Oxford, England. crispin.jenkinson@dphpc.ox.ac.uk
authors.forename: C
authors.initials: C
authors.lastname: Jenkinson
authors.forename: R
authors.initials: R
authors.lastname: Fitzpatrick
authors.forename: V
authors.initials: V
authors.lastname: Peto
mesh_terms: D006305:Health Status Indicators; D006801:Humans; D010300:Parkinson Disease; D011788:Quality of Life; D011795:Surveys and Questionnaires