What is quality of life and how do we measure it? Relevance to Parkinson's disease and movement disorders

Abstract

Health-related quality of life is a patient-reported outcome that complements clinical evaluation and provides information about disease activity and effects of the treatment. The objective of this review is to present the conceptual framework, the measures, and some of their most relevant applications in the field of Parkinson's disease and movement disorders. Health-related quality of life is a subjective, individual, and multidimensional construct, and its main dimensions are physical, mental, and social, besides global perceptions of health and personal domains. Health-related quality of life measurement is carried out by means of questionnaires or scales, ideally self-applied by patients, and has a diversity of important applications for clinical practice, research, and health policy. Movement disorders and Parkinson's disease are complex conditions impacting all components of patients' health-related quality of life. The use of health-related quality of life tools provides important information on a variety of aspects that are important to patients while complementing clinical evaluations. In particular, studies using this kind of assessment can identify and monitor the most important health-related quality of life determinant factors, allowing tailored assistance and prioritized interventions. In addition, maintaining or improving the patients' health-related quality of life is an objective of care for chronic diseases and, therefore, it has to be monitored over time and as an outcome of clinical trials. Several methods are available for the interpretation of the change in scores of health-related quality of life measures, although a definitive agreement on the most appropriate method is yet to be determined. Presently, health-related quality of life assessment is an important outcome for research and management of chronic conditions such as Parkinson's disease and other movement disorders. © 2016 International Parkinson and Movement Disorder Society.

Keywords: determinants; health-related quality of life; interpretation; measurement; quality of life.