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.
Key findings
- Participants wanted a sufficiently wide range of response options to represent varied and fluctuating experiences.
- Questions should address personal, emotional, and practical effects rather than only symptoms or physical function.
- Clear, specific language and a balance of positive and negative questions made assessment more meaningful.
- Existing questionnaires contained both helpful and obstructive features, supporting refinement with people who have lived experience.
Why this matters globally
The findings matter for selecting and refining patient-reported outcomes in Parkinson's research, trials, and care because poorly aligned tools may miss meaningful benefits or burdens. Proposed refinements still require psychometric and cross-cultural testing across languages, disease stages, and cognitive profiles before becoming global standards.
Thai researcher contribution
Onanong Phokaewvarangkul of the Chulalongkorn Centre of Excellence for Parkinson's Disease and Related Disorders, Faculty of Medicine, Chulalongkorn University, and King Chulalongkorn Memorial Hospital, Thai Red Cross Society, is the Thai-affiliated coauthor. The records confirm the affiliation but do not identify individual author tasks or the number of Thai participants, so the 31-person sample should not be presented as representative of Thai patients.
Limitations to consider
The 31-person qualitative sample is small, and the abstract does not describe recruitment, age, disease stage, language, cognitive status, or care context. Completing eight instruments may create burden and shape subsequent discussion. The study captures these participants' perspectives; it does not estimate validity, reliability, responsiveness, or clinical outcomes. Wording and response preferences may differ by culture, language, and disease stage.