Defining Quality of Life: The Perspective of People Living with Parkinson's Disease

BACKGROUND: Little is known about how people with Parkinson's conceptualize "quality of life." OBJECTIVE: To describe the meaning of "quality of life" from the perspective of people with Parkinson's. METHODS: Participants (N = 42) were asked "What does the term 'quality of life' mean to you?" Definitions were analyzed using inductive qualitative methods. RESULTS: Quality of life is captured in a framework illustrating how activities, experiences, and coping strategies generate positive feelings that collectively shape the mental state that defines quality of life. CONCLUSIONS: People with Parkinson's typically define what constitutes a good quality of life, with health status acting as an enabler (or barrier). Multiple factors, varying across individuals and potentially changing with circumstances, shape how people view their quality of life, and offer potential avenues for sustaining it. These personal, subjective and adaptive conceptualizations of quality of life should inform the design of interventions and measurement instruments.