A longitudinal evaluation of patients' perceptions of Parkinson's disease

Purpose: Parkinson's disease (PD) is a chronic progressive neurological disorder that frequently results in nearly total disability. This study examined changes over 3 years in patients' experiences living with PD, and explored how participants' health perceptions and predicted mortality at baseline related to their actual death by Year 3. Design and Methods: Data were obtained from a local sample of 109 participants by in-home interviews. Results: The collected results (1) suggested a disconnection between the participants' responses to open-ended questions about the disorder, compared with their responses to questions structured by the investigators; (2) demonstrated changes in responses to structured and open-ended questions; and (3) demonstrated that respondents who declined to predict whether they would be living in 10 years were three times more likely to die by Year 3 than those who answered the question. Implications: Results demonstrate the importance of identifying the most important issues for the individual with PD and suggest that these issues may change over time. Results also raise issues surrounding how patients' perceptions influence the course of their disease.