Health-related quality of life as an outcome variable in Parkinson’s disease

Abstract

In the past three decades, health-related quality of life (HRQoL) has become an outcome variable in Parkinson’s disease clinical trials. This review considers the measuring tools that have been developed, suitability of data reporting, complexity of outcome interpretation, and clinical application to provide evidence regarding available therapeutic interventions to date. In the introduction, different terms regarding quality of life are clearly defined. The methodology section offers an overview of generic, disease specific, and recommended HRQoL scales in Parkinson’s disease and the most important psychometric attributes a scale should meet. The interpretation of HRQoL outcomes is complex and not intuitive. Thus, appropriate reporting of data is crucial in order to calculate relative change, a result that facilitates understanding to what extent an intervention is beneficial. The concept of minimally important change/difference is explained as well as the different approaches to its calculation (anchor-based and distribution-based methods). In the results section, a brief overview of the impact on HRQoL of currently available treatments in Parkinson’s disease is provided. Special emphasis is given to data assessment, highlighting reports that helped understanding of the clinical significance of the intervention and therefore aided in making therapeutic decisions. The discussion section emphasizes the need for more clinical trials with HRQoL as a primary outcome and standardized reporting in order to further our understanding of the complexity of treatment effects and make evidence-based clinical decisions regarding HRQoL in patients with Parkinson’s disease.