Objective: To use interviews from individuals with Parkinson’s disease (PD) to better understand the symptomology of the disease.
Background: It is important to understand the symptoms and issues that have the greatest impact on individuals with PD to help guide therapeutic trials and to create instruments that can measure small but relevant changes in these symptoms over time.
Method: We interviewed adults with PD to identify potential symptoms that interfere with quality of life. Participants were asked open-ended questions about the symptoms and issues that have the greatest impact on their daily lives. The interviews were recorded, transcribed, and analyzed using a qualitative framework technique, triangulation, and a three-investigator consensus approach.
Results: We completed interviews with twenty PD participants, who provided 2,978 quotes relating to 609 unique symptoms and 15 symptomatic themes. Participants most frequently mentioned concepts related to emotional health (429 quotes), mobility and ambulation (352 quotes), and social role limitation (342 quotes) as the issues that have the greatest effect on their lives.
Conclusion: Individuals with PD experience a range of symptoms that impact their lives and functioning. Those affected by the disease are well suited to give an in-depth perspective of the symptoms and issues that most affect quality of life. The second phase of this study is ongoing and includes a large, cross-sectional study designed to gather direct input from a larger PD population and to determine the relative impact and prevalence of each symptom identified in the first phase. At the completion of this study, we will have comprehensive knowledge related to the prevalence and relative importance of PD specific symptoms. The utility of this information is extensive and may be used to guide future therapeutic and outcome measure development.
To cite this abstract in AMA style:A. Arky, C. Zizzi, E.R Dorsey, C. Heatwole. What Matters Most to Individuals with Parkinson’s Disease: Results from Qualitative Interviews [abstract]. Mov Disord. 2020; 35 (suppl 1). https://www.mdsabstracts.org/abstract/what-matters-most-to-individuals-with-parkinsons-disease-results-from-qualitative-interviews/. Accessed December 6, 2023.
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