Measuring what matters: Evaluating quality of life instruments through the eyes of people with Parkinson's disease

Background Many instruments are used to assess quality of life in people living with Parkinson's disease. However, there is limited understanding of what people living with Parkinson's consider relevant and important when measuring quality of life. Aim To explore what people living with Parkinson's consider relevant and important in the assessment of quality of life. Methods Semi-structured interviews were conducted with 31 people living with Parkinson's disease. Participants completed eight instruments, which were used to guide discussion and reflection on what helps and what hinders measuring quality of life in a way that is meaningful to them. Results Participants highlighted a number of features they consider important in the assessment of quality of life. These include being able to select from a wide range of response options, addressing the personal, emotional, and practical impacts of issues, using clear, specific language, and including a balance of questions that address both positive and negative aspects of the Parkinson's experience. Conclusions There is a need for instruments that reflect the complex and varied ways Parkinson's disease affects individuals. While existing questionnaires incorporate some features that support meaningful assessment, participants also identified features that may hinder the extent to which quality of life is adequately captured and that warrant further refinement. Incorporating feedback from people with lived experience may help inform future evaluation and refinement of quality of life measures in research and care.