Quality of Life Scales

Abstract

Parkinson’s disease is a complex disorder manifested by a wide variety of symptoms, progressive disability, and complications that strongly affect patients’ quality of life. Health-related quality of life (HRQOL) is considered an important patient-reported outcome for trials of interventions and monitoring the consequences of disease in physical, mental, and social domains. A long debate about the definition of HRQOL remains, but it is generally accepted that it refers to the impact of the disease and its treatment on patients, assessed from their perspective. Following the methodology imposed by previous work of the Movement Disorder Society Task Force, a review of the psychometric attributes of those generic and specific HRQOL scales applied in studies on PD was completed. Considering the scales from three perspectives, including use in PD, use by multiple research groups, and clinimetric properties, a final classification as Recommended, Suggested, or Listed was applied to each reviewed instrument. Four generic scales (EQ-5D, NHP, SF-36, and SIP) and five specific (PDQ-39, PDQ-8, PDQL, PIMS, and SCOPA-PS) reached the level of “Recommended.” The PDQ-39 is the most thoroughly tested and applied questionnaire. Three other generic measures (15-D, SEIQOL-DW, and WHOQOL-BREF) and the specific PDQUALIF are “Suggested.” With additional effort in completing the stipulated requirements, they could reach the Recommended level in the future. At present, a wide variety of HRQOL measures for application in PD are available and the task force does not recommend the development of a new scale. Selection of the most appropriate instrument for a particular objective requires consideration of the characteristics of each scale and the goals of the assessment.