Measuring what matters: Evaluating quality of life instruments through the eyes of people with Parkinson's disease
Researchers asked 31 people living with Parkinson's disease to complete eight quality-of-life instruments and then used semi-structured interviews to explore what helped or hindered meaningful reporting. Participants favored broad response options, attention to personal, emotional, and practical effects, clear and specific language, and a balance of positive and negative questions. The study centers lived experience in instrument refinement but does not establish which questionnaire has the best validity, reliability, or responsiveness.