Objective: To develop a consensus based conceptual model of meaningful symptoms and impacts in early Parkinson’s disease (PD) through aligning of PD qualitative research carried out to date.
Background: There is an urgent need to develop novel patient centric clinical outcome assessments (COA) relevant to meaningful aspects of health at different stages of PD. PD is a phenotypically heterogenous disease with substantial variation in symptom presentation, particularly in early-stages. Recent qualitative studies have helped to increase understanding of what is important to patients with PD, but theoretically informed conceptual models that can guide development and selection of COAs are currently lacking. Thus, a clear, widely accepted model of symptoms and impacts for PD is urgently needed to guide research at each stage.
Method: In collaboration with the Michael J Fox Foundation for Parkinson’s, Critical Path Institute, people with PD, and academic and industry stakeholders, we have established a task force to develop a patient-centered consensus conceptual model of meaningful aspects of health for early-stage PD, with a focus on delineating key symptoms and impacts. The task force was launched in March 2023. The task force aims to: (1) review existing literature and identify sources for inclusion; (2) curate currently recognized concepts of interest and identify gaps; (3) grade existing evidence to develop recommendations for high priority items; and (4) develop a consensus conceptual model that can guide future research.
Results: Target date for project completion is March 2024.
Conclusion: Strong theoretical underpinnings are needed to unify approaches to development of patient centric meaningful COAs. A consensus conceptual model will help to identify current high priority areas and potential gaps in knowledge for future research in early PD. Collaboration of the key stakeholders is an essential part of this process.
To cite this abstract in AMA style:
J. Adams, J. Mammen, C. Kopil, Y. Xiao, D. Stephenson, T. Simuni. Building a consensus conceptual model of meaningful symptoms and impacts in early Parkinson’s disease [abstract]. Mov Disord. 2023; 38 (suppl 1). https://www.mdsabstracts.org/abstract/building-a-consensus-conceptual-model-of-meaningful-symptoms-and-impacts-in-early-parkinsons-disease/. Accessed June 14, 2025.« Back to 2023 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/building-a-consensus-conceptual-model-of-meaningful-symptoms-and-impacts-in-early-parkinsons-disease/