Objective: To explore the knowledge, perceptions and experiences of people with Parkinson’s disease and caregivers regarding motor and non-motor fluctuations, identifying informational gaps and training needs to guide future educational interventions.
Background: Patients and caregivers show significant gaps in their understanding of Parkinson’s disease and its manifestations, which hinders both the recognition of symptom changes and effective communication with healthcare professionals. Fluctuations strongly affect autonomy and quality of life, making it essential to understand how they are experienced and managed in order to design appropriate educational support.
Method: A nominal group session was conducted with 7 patients and 3 caregivers from the Parkinson’s Madrid Association. The session, facilitated by two qualitative research specialists, followed the Crawford Slip Writing methodology to elicit ideas in a structured way. Oral and written contributions were anonymized and transcribed, and a thematic analysis was carried out to categorize and synthesize the information.
Results: Participants perceived the information provided in neurology consultations regarding fluctuations as insufficient, leading them to identify and manage fluctuations largely through personal experience and peer support. They reported variability in clinical communication and difficulties expressing symptoms and concerns, as well as limited access to educational and emotional resources. Participants described an active search for information using multiple sources, placing particular trust in patient associations. They highlighted the need for accessible, early and continuous education on fluctuations, delivered through diverse formats and reliable materials.
Conclusion: The study reveals limited knowledge and insufficient clinical guidance on fluctuations, prompting patients and caregivers to rely on informal networks. Variability in clinical communication and the lack of educational resources underscore the need for continuous training models and a more empathic, person‑centered approach. Structured interventions could improve the recognition and management of fluctuations and contribute to a more comprehensive standard of care.
To cite this abstract in AMA style:
J. Romero Muñoz, J. Herreros, C. Soria Poveda, I. Santamaría Rodríguez. Perceptions and knowledge about Parkinson’s disease fluctuations among patients and caregivers: insights from a qualitative focus group [abstract]. Mov Disord. 2026; 41 (suppl 1). https://www.mdsabstracts.org/abstract/perceptions-and-knowledge-about-parkinsons-disease-fluctuations-among-patients-and-caregivers-insights-from-a-qualitative-focus-group/. Accessed October 1, 2026.« Back to 2026 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/perceptions-and-knowledge-about-parkinsons-disease-fluctuations-among-patients-and-caregivers-insights-from-a-qualitative-focus-group/